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Inside this issue of
VOLUME 61, NUMBER 4 Palliative Medicine Winter 2010 EDITOR IN CHIEF Joan L. Huffman, MD MANAGING EDITOR Leora Legacy ASSOCIATE EDITORS Raed Assar, MD Hernan Chang, MD Steven Cuffe, MD Ruple Galani, MD Kathy Harris (Alliance) Sunil Joshi, MD James Joyce, MD Neel Karnani, MD Timothy Sternberg, MD
Executive Vice President Jay W. Millson DCMS FOUNDATION BOARD OF DIRECTORS Benjamin Moore, MD, President Todd L. Sack, MD, Vice President Kay M. Mitchell, MD, Secretary J. Eugene Glenn, MD, Treasurer Guy I. Benrubi, MD, Immediate Past President Mohamed H. Antar, MD Raed Assar, MD Ashley Booth Norse, MD J. Bracken Burns, DO Malcolm T. Foster, Jr., MD Jeffrey L. Goldhagen, MD Jeffrey M. Harris, MD Mark L. Hudak, MD Joan L. Huffman, MD Sunil N. Joshi, MD Daniel Kantor, MD Neel G. Karnani, MD John W. Kilkenny III, MD Sherry A. King, MD Harry M. Koslowski, MD Eli N. Lerner, MD R. Stephen Lucie, MD Jesse P. McRae, MD Senthil R. Meenrajan, MD Nathan P. Newman, MD Mobeen H. Rathore, MD Ronald J. Stephens, MD Jeffrey H. Wachholz, MD Anne H. Waldron, MD David L. Wood, MD Northeast Florida Medicine is published by the DCMS Foundation, Jacksonville, Florida, on behalf of the County Medical Societies of Duval, Clay, Nassau, Putnam, and St. Johns. Except for official announcements from the County Medical Societies, no material or advertisements published in NEFM are to be seen as representing the policy or views of the DCMS Foundation or its colleague Medical Societies. All advertising is subject to acceptance by the Editor in Chief. Address correspondence and advertising to: 555 Bishopgate Lane, Jacksonville, FL 32204 (904-355-6561), or email: llegacy@dcmsonline.org. COVER: Photograph by Joy E. Cobb of her sister’s hands on her dying mother’s hand as her sister comforts her. See photographer’s profile, p.9.
www . DCMS online . org
Northeast Florida Medicine Features 11 12 18
End of Life Care: A Disconnect Between Wishes and Reality Neel G. Karnani, MD, AAHPM, Guest Editor
Palliative Pain Management
Timothy L. Sternberg, DMD, MD
Management of Selected Non-pain Symptoms at the End of Life
Neel G. Karnani, MD
22
The Role of Palliative Medicine in Dementia
34
Hospice and Palliative Care: What is the Difference?
Reetu Grewal, MD
Stephen J. Clark, MD
Special Articles 27
Elder Abuse (CME)
36
Pediatrics: The Role of Palliative Medicine
38
Kay M. Mitchell, MD
Kelly Cronin Komatz, MD, MPH (Pediatric Perspective)
Sub-county Data Analysis in Public Health
Radley C. Remo, MPH; Thomas Bryant III, MSW and Robert G. Harmon, MD, MPH
Departments 4 5 8 9 45
From the Editor’s Desk From the President’s Desk DCMS History Book Photographer’s Profile Thank You to 2010 Guest Editors Northeast Florida Medicine Vol. 61, No. 4 2010 3
From the Editor’s Desk
Resolved... As 2010 comes to a close and the New Year dawns, an annual custom rears its ugly head – New Year’s resolutions. They may be serious or silly, public or private, but so it goes: in 2011, I resolve to… Resolutions are stubborn critters. Each New Year we bargain with ourselves about the changes that we either need or want to make in our lives – both personal and professional. But like many a self-promise, life intervenes, the year end approaches, and the goal is not accomplished. This year make a resolution that can truly make life and death altering changes. Sign up for organ and tissue donation, make a living will or assist a family member in making theirs. Over the holiday season, many of us will have opportunities to sit down with relatives and catch up on news and occurrences. One may shudder at introducing death into the jolly conversation, but there truly may be no better time to proceed. While family drama may color some get-togethers, there is also a sense of camaraderie and goodwill as kin that are often living a distance apart, gather for happy occasions. Certainly these social events are more settled and pleasant than a rushed, hushed meeting with a doctor at the bedside of a dying loved one. The stress levels are lower, and there is no urgency to make a definitive unalterable decision. There is time for serious reflection and dialogue. If grandmother tells about the loss of a dear friend, ask how she felt about the situation, how
Joan L. Huffman, MD, FACS the family dealt with decision making, and how the last days were spent. You can then segue way Editor-in-Chief into what she would want to be done in her own particular circumstance, discussing options and Northeast Florida Medicine
potential outcomes.
You can guide her to the appropriate resources: an advanced directive with a durable power of health care attorney.1 Encourage her to speak with her children about her thoughts and help her out the forms. (see online resource below) End-of-life wishes are not only for the elderly. Everyone who is of legal age should make their wishes known to their chosen decision-maker while they are of sound mind and in good health and then document these decisions. In the trauma arena, I see parents anguish over young adults with catastrophic brain and/or spinal cord injuries. They have never spoken with their offspring about their wishes. Have a conversation about organ and tissue donor designation, flip open your laptop and encourage your teens, siblings, cousins, aunts/uncles and parents sign up on the spot online at DonateLife!2 (see web address below) There is no age limit for donation. Organ and tissue donation can add a life-long positive note to an otherwise devastating situation by giving the gift of life to another person with deteriorating health problems. Consider which is the most priceless present for a renal dialysis dependent patient: a holiday grab bag gift or a kidney? Set a good example by making your own advanced directive, legally executing the papers, and giving a copy to your physician and health care surrogate. Sign up to be an organ and tissue donor and share your decisions with your friends, family and colleagues. Resolve to make provisions for the future that will help your family when your life ends and possibly will provide new life to others. References: 1. Download your State’s advance directives at: http://www.caringinfo.org/stateaddownload 2. Organ and tissue donor designation at DonateLife: http://www.donatelife.net
“We will open the book. Its pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is ‘New Year’s Day.’” Edith Lovejoy Pierce 4 Vol. 61, No. 4 2010 Northeast Florida Medicine
www . DCMS online . org
From the President’s Desk
Change ‘It’ or Your Attitude With the attack ads and rancorous debate of the recent elections finally behind us (at least temporarily), we now face the postponed necessity of truly figuring out this business of ‘health care reform’. As we saw after the bill was signed into law in March, the initial thrust of this legislation could more accurately be termed ‘health insurance reform’. But now our legislators, at both the state and national levels, must start the widely encompassing process of formulating the regulations that will affect your daily practice of medicine. How can we ensure that we have appropriate input into the processes of crafting these proscriptions? While the repeal of ‘Obamacare’ is unlikely at best, the divided Congress will afford an opportunity to rework those aspects of the legislation that are either frankly deleterious to our profession or are still being configured within the regulatory process. For the following reasons, it is more imperative than ever that we keep our representatives informed (inundated) with reminders of what we know will be the best for our patients in our practices.
John W. Kilkenny III, MD 2010 DCMS President
Because Congress failed to pass legislation addressing the broken sustainable growth rate (SGR) formula that is used to calculate Medicare payments to physicians, more reimbursement reductions are looming. The physician fee schedule final rule for 2011, recently released by CMS, will require that these payments be cut by 21 percent on December 1, 2010 and by an additional 4 percent on January 1, 2011. In the present economic climate, and considering what the voting public just articulated, any increase in deficit spending would certainly stoke the rancor of many. Conversely, any delay or diminution of the scheduled cuts will considerably amplify the budget deficit, though that hasn’t stopped their nearly annual tradition of postponing the inevitable.
There is the projection that unchecked health care costs will bankrupt our economy within the next two decades. One remedy is the conversion of the payment process from per diem and fee for service to coordinated care models that fall under the increasingly popular rubric ‘Accountable Care Organizations’. Major improvements are being planned not only in the reimbursement structure, but notably in health care quality and efficiency. Here in Florida, the continuing economic predicament is exacerbating the ranks of the unemployed. This is naturally overburdening the Medicaid program, and increasing the expense of treating these patients. In spite of this, the federal share of Medicaid matching funds is shrinking as the federal stimulus funds are expiring. There is near universal agreement that Medicaid reimbursement rates are far too low. Granting sovereign immunity to Medicaid providers is being considered as a way of attracting physicians into the program without having to increase the remuneration. Some of the other significant issues that need to be addressed: expert witness reform by truly holding them accountable; the right of physicians to self-insure or “go bare,” as opposed to mandating medical liability insurance; the prerogative of physicians to balance bill for PPOs; and opposition to the inappropriate expansion of scope of practice for non-medical doctors. Considering the virtual impossibility of obtaining tort reform at the national level, such efforts have been focused at the state level for decades now. With the political bent of so many state legislatures having recently been changed, we may well have an opportunity to advance tort reform further than ever before. And finally, what of the approaching calamity of inadequate numbers of physicians and fewer yet in the ‘pipeline’? Most of us are already coping with increasing clinical responsibilities and emergency call, decreasing compensation and more onerous regulations and paperwork. A common exasperated complaint is that ‘we’re too busy taking care of patients to be involved in the political scene (by way of organized medicine)’. And yet, as we’ve been made to appreciate all too clearly over the last several years, if we don’t stand up for our patients and our practice of medicine, we will have no recourse but to accept unpalatable mandates governing same from politicos who frankly do not have medicine’s best interests at heart. Political engagement by physicians, measured by the overall ‘grassroots’ response to Congress and by PAC contributions, remains anemic. In this time of uncertainty as we experience the forces impacting our daily practice of medicine, our options are really quite simple. We can allow our profession that we have sacrificed so much for, to be transformed into another facet of a ‘social experiment’, with increased governmental regulation and oversight. Or we can support our systematized thoughts and efforts (read: organized medicine) with our personal input to help shape our profession’s growth and advancement for years to come.
If you don’t like something, change it. If you can’t change it, change your attitude - Maya Angelou Special note: Thank you to the Society’s membership and the outstanding DCMS support staff for helping to make this past year of my presidency such a satisfying and memorable experience.
www . DCMS online . org
Northeast Florida Medicine Vol. 61, No. 4 2010 5
Brooks Rehabilitation Medical Group welcomes Dr. Kenneth Ngo Brooks Rehabilitation is delighted to announce the arrival of Kenneth Ngo, M.D., Brain Injury Program Medical Director and a member of the Brooks Rehabilitation Medical Group. Dr. Ngo comes to Brooks from the Medical College of Wisconsin where he completed his residency in Physical Medicine and Rehabilitation. He received his doctorate from the University of Wisconsin School of Medicine and Public Health in 2006 and completed his internship at Michigan State University. In addition to the inpatient Brain Injury Program, he plans to expand the scope of outpatient services within the Brooks Rehabilitation continuum of care to include a Comprehensive Spasticity Management Clinic and the Concussion Assessment and Rehabilitation Program.
Dr. Paris
Dr. Johns
Dr. Maher
Dr. Srinivasa
Trevor Paris, M.D.* Medical Director for Brooks Rehabilitation Hospital, Medical Director, Stroke Center of Excellence Jeffery S. Johns, M.D.* Associate Medical Director for Brooks Rehabilitation Hospital, Medical Director, Spinal Cord Injury Center of Excellence Kerry Maher, M.D.* Medical Director - Admitting for Brooks Rehabilitation Hospital, Medical Director - St. Luke's Hospital Total Joint Rehabilitation Managed by Brooks
BrooksRehab.org
Sarala Srinivasa, M.D.* Admitting and Attending Physician for Brooks Rehabilitation Hospital
Contact Dr. Ngo (904) 345-7373
* Board Certified in Physical Medicine & Rehabilitation
6 Vol. 61, No. 4 2010 Northeast Florida Medicine
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Isn’t It Time You Called The Med Mal Experts? Danna-Gracey is an independent insurance agency with a statewide team of specialists dedicated solely to insurance coverage placement for Florida’s doctors. With offices located throughout Florida, Danna-Gracey works on behalf of physicians – well beyond managing their insurance policy. By speaking, writing and educating, we hope to effect positive change in the healthcare industry. We make it our practice to genuinely care about yours. For more information, please contact Stephanie Johnson at 904.215.7277 or stephanie@dannagracey.com.
Ask us about our Workers’ Comp dividend program for Duval County Medical Society members!
Delray Beach • Jacksonville • Orlando • Miami
Jacksonville Office: 904.215.7277
www.dannagracey.com www . DCMS online . org
Northeast Florida Medicine Vol. 61, No. 4 2010 7
A ‘Progressive’ DCMS Opened Its Doors to African American Physicians Charles B. McIntosh, MD, the first DCMS African American President (1980) said, “I have always felt a special attachment to DCMS because it was progressive. Many societies throughout the South were not. Some very forward thinking physicians in DCMS; Dr. Leo Wachtel, Dr. Ashbel Williams and Dr. Samuel Day sponsored my application to the Society in 1960. They believed it was time for DCMS membership to be open to all physicians.”
Thanks to that progressive, forward thinking and open spirit, DCMS has benefited from the leadership of these four talented African American physicians who served as DCMS Presidents. Charles B. MCIntosh, MD
The second African American DCMS member, Dr. McIntosh was the Society’s first African American President in 1980. A “retired” pediatrician, Dr. McIntosh practiced medicine for over 50 years, and still sees patients one day a week. He is a DCMS Life Member and continues to be active in the Society. Among many honors and awards, Dr. McIntosh received the 2008 Clyde M. Collins Humanitarian Award from DCMS for his work in delivering medical care to children with Sickle Cell Disease; serving on the Trustee Board of Volunteers in Medicine; and establishing a Prostate Cancer Screening, Diagnosis and Follow-up Program.
WIlBert l. DaWkIns, sr., MD “A prominent voice in Florida’s malpractice reform debate,” according to a 1998 Florida Times-Union article, Dr. Dawkins came to Jacksonville in 1966 to practice Internal Medicine. He promptly joined DCMS, and as DCMS President in 1987, he championed organized medicine’s programs that sought to protect physicians and their patients. He was often quoted by the media about how medical malpractice suits and the cost of health care insurance were crippling America’s health care system.
FloyD B. WIllIs, MD Dr. Willis was DCMS President in 2006. He proved to be a tireless leader for the Society, and an active community volunteer in northeast Florida. Dr. Willis has been intimately involved in ending healthcare disparities in Jacksonville, chairing a conference on the issue at Edwards Waters College in 2009 and representing the Society on the Healthcare and Bioscience Council of Northeast Florida regarding the same matter. He is Chairman of Mayo Clinic Jacksonville’s Family Medicine program.
John M. MontgoMery, MD Dr. Montgomery was DCMS President in 2007. He came to Jacksonville because of a Family Medicine residency at the NAS Naval Hospital. Dr. Montgomery has served the public health interests of northeast Florida through both the Duval and Volusia County Health Departments. His work for Blue Cross & Blue Shield of Florida while DCMS President was significant in that he represented the critical role physicians play in the healthcare delivery system both in the private and public sector.
Read more about the diversity within the DCMS membership in the upcoming DCMS History Book.
Contact Mr. John Compton, Publisher, if you want to be a part of this publication by chronicling your years in medicine or your practice’s history. (904-355-6561 x110 or johncompton@dcmsonline.org)
8 Vol. 61, No. 4 2010 Northeast Florida Medicine
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Photograph Captures ‘Comfort and Love’ Given to a Dying Mother The cover photograph for this issue entitled “Comfort and Love” was taken by photographer Joy E. Cobb whose mother died in 2009 of lung cancer. Joy recalls, “One day as my mother lay dying of Stage 4 lung cancer at my home and in the care of hospice, my sister* placed her hands on my mom’s hand. This spontaneous moment caught my eye because it was so expressive of comfort and love. I took the photograph, and I am thankful I did because three days later on Thanksgiving, mom, who was 76, passed away peacefully in her sleep.” Joy had a special emotional attachment and focus the day she photographed her dying mother’s weak and thin hand resting beneath her sister’s strong and healthy hands. Yet she also puts a lot of passion into the nature, animal/ wildlife and country landscapes that she regularly photographs. She lives in Northeast Ohio farm country with her husband, two children and “many, many animals.” “I have been interested in photography for as long as I can remember, but I really got into it when our house blew up in a gas explosion, and I had to replace my 35mm cameras with digital,” says Joy. She especially likes digital technology because she can take thousands of photographs inexpensively, and there is more room for trial and error. She says, “I enjoy shooting solo, soaking in the sounds of nature and just discovering how much tiny life goes on in even a small patch of soil.” Joy has had photographs published in Birds & Blooms, Cat Fancy, and Parade, among other publications and The Weather Channel has shown some of her photographs in their “Best of the Daily Weather Pic” slideshow. Of her photography skills, Joy says, “I learn by taking photos every day, relying heavily on composition, reading and studying what appeals to viewers at Picture of the Day (POTD) sites. (www.potd.net) I don’t own a pricey camera. I’m a loyal Kodak fan.” A complete gallery of Joy’s photographs can be viewed at www.betterphoto.com/gallery. *Editor’s Note: Joy’s sister, and the one whose hand was comforting their dying mother, is Joan Huffman, MD, Editor-in-Chief of Northeast Florida Medicine. (NEFM) Special thanks to her and to Joy for letting NEFM feature this very personal photograph on its cover.
www . DCMS online . org
Northeast Florida Medicine Vol. 61, No. 4 2010 9
DCMS_QSN/AHEC Ad_July:July
7/9/10
4:07 PM
Page 1
strongly
THE US DEPT. OF HEALTH AND HUMAN SERVICES SAYS:
“All physicians should
advise every patient who smokes to quit
because evidence shows that provider advice to quit smoking increases abstinence rates.” The National Cancer Institute projects that if providers assisted even 10% of their tobacco-using patients in quitting, the number of tobacco users in the U.S. would drop by 2 million people annually.
Northeast Florida AHEC offers FREE training to help providers effectively Ask, Advise, and Refer patients to appropriate cessation programs. TRAININGS ARE AVAILABLE ON-SITE, AT LOCAL/REGIONAL CONFERENCES, AND ON-LINE.
In addition, we can help you develop a system that will help you identify tobacco-using patients, and then help them QUIT.
TRAINING TOPICS INCLUDE: • Brief Intervention Training • Motivational Interviewing • NRT Options • Other topics available by discipline
Search for current workshops and conferences at: www.ahecregistration.org Select Northeast Florida area for list of local trainings.
Northeast Florida AHEC
CONTACT: NE Florida AHEC Tobacco Training 1107 Myra St., Suite 250 Jacksonville, FL 32204 Ph: (904) 482-0189 • Fax: (904) 482-0196
www.northfloridaahec.org www.quitsmokingnowfirstcoast.com
10 Vol. 61, No. 4 2010 Northeast Florida Medicine
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This Issue’s Focus: Palliative Medicine
End of Life Care: A Disconnect Between Wishes and Reality “I am not afraid of death. I just don’t want to be around when it happens.” (Woody Allen) In a Gallup poll, when asked where they would wish to die, 90% of Americans said they would prefer to die at home. In reality, close to 70% of adults die in some type of institution (i.e. hospital, assisted living or skilled nursing facility). (Quality of DeathEnd of Life Care in American: Inside Out/www.wbur.org) Clearly there is a disconnect between where we wish to die and what actually happens. While there may be several reasons for this, it is evident that if patients were adequately informed of their choices, they might come closer to their objective of dying at home. It is time for the status quo to change. As a physician community we need to realize that our obligation to patients is not only about the quantity of life, but also about quality. We need to let patients know that there is an alternative to trying to fix every problem; that is to let the illness take its course and to concentrate on the patient’s comfort and short term goals, thereby enhancing quality of life. When George Mallory, the famous mountaineer, was asked why he wanted to climb Mt Everest, he reportedly said “Because it is there”. This has given rise to the “Everest syndrome” where we submit patients to procedures and interventions because we can instead of standing back and asking ourselves “Should we? Is it the right thing for the patient? Is it going to change the final outcome? What will be the burden of treatment, financially and otherwise?” At the very least, we owe it to patients to lay out their choices in language they can understand. Using ambiguous terms such as “responding to treatment” or “long term” without telling them about the down side (i.e. the burden of treatment or how long it may affect the quality of time they have left) does not make for informed consent. How we communicate matters. Neel Karnani, MD, AAHPM Regional Medical Director, Haven Hospice, Jacksonville, FL; Courtesy Clinical Assistant Professor, University of Florida, Gainesville, FL and DCMS Vice President
Palliative medicine was approved as a subspecialty in 2006. The essence of this type of medicine is to provide care that enhances the quality of life regardless of where the patient is in the trajectory of illness. Nationwide more than 70% of hospitals with 250 beds or above have a palliative care consultation service available. This represents a 96% increase from 2000 to 2005. These numbers are not reflected locally in Duval County. In 2004, Charles von Gunten, a leading authority in palliative medicine said, “Never before in the history of medicine has there been more ability to relieve suffering and improve quality of life throughout the spectrum of illness from diagnosis to death.” This still holds true today.
If the medical argument does not alter the “business as usual” situation, the high cost to the nation of end of life care should wake up our collective consciences. By some estimates, the overall cost of health care will exceed a fifth of the economy by the year 2018. With nearly 30% of Medicare outlays occurring during the last year of life and 40% spent to cover care for people in the last month of life, it is time for this cost to be curtailed. (Raphael, C, et al, Financing end-of-life care in the USA. JR Soc Med 2001, September 94(9):458-461) By contrast, hospice spending accounts for 1% of Medicare spending. Costs for those who died in hospital inpatient setting were twice as high as for those who died in other settings, such as their homes. Atul Gawande, a Harvard general surgeon said he marvels that we physicians encourage patients to get obviously futile care and that such treatment at the end of their lives is part of the reason health care has become so expensive. (Gawande, A, “Letting Go-What should medicine do when it can’t save your life? New Yorker, August 2, 2010 on www.newyorker.com) The financial argument is not the only one to use when promoting palliative medicine. There are key compassionate and ethical reasons as well for making the right decisions at the end of life. It is hard to put a metric on the pain and suffering of relatives as they watch their loved ones linger. Physicians need to take the time to explain the importance of making patients comfortable and giving them quality of life even as quantity is ebbing away. The various aspects of palliative medicine are dealt with in this issue. Timothy L. Sternberg, DMD, MD, in “Palliative Pain Management,” addresses why physicians with patients in the end of life stage need to be familiar with treating chronic pain. I discuss in “Management of Selected Non-pain Symptoms at the End of Life” how to manage the more common symptoms terminal patients experience. As the demographics of our nation change, the incidence and prevalence of dementia will rise substantially. Reetu Grewal, MD, in “The Role of Palliative Medicine in Dementia,” discusses the distressing symptoms of dementia in terminal patients. Stephen J. Clarke, MD, in “Hospice and Palliative Care: What is the Difference?” explains how hospice and palliative care differ. Kelly Komatz MD highlights the pediatric aspect of palliative care in “Pediatric Palliative Care.” Palliative care needs to start much earlier in the trajectory of the illness, preferably at the time of diagnosis. The median length of service in hospice in 2008 was 21 days. Of these patients about 1/3 of them died (or were discharged) in 7 days or less. Are patients being referred too late to hospice? Absolutely. It is my hope the articles in this issue will educate and encourage all physicians to consider the wishes of their dying patients and help to correct the disconnect between those wishes and reality or what usually happens. Isaac Asimov, the noted author and longtime member of Mensa International, said “Life is pleasant. Death is peaceful. It’s the transition that’s troublesome.” That’s what palliative care is all about.
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Northeast Florida Medicine Vol. 61, No. 4 2010 11
Palliative Pain Management Timothy L. Sternberg, DMD, MD Abstract: The majority of patients with terminal disease have intractable pain, which can cause global disruption of their remaining life. A careful history and physical examination will allow the physician to assess the pain as nociceptive, neuropathic, or combined, and enable directed pharmacologic therapy. Effective therapy is available, if somewhat underutilized. Most, but not all patients can be treated with available analgesic and co-analgesic mediations. For those patients who have inadequate pain control or intolerable side effects with maximal medical therapy, radiotherapy and interventional techniques can be very useful treatment modalities. This paper will discuss effective available palliative pain management options.
Pain in Palliative Care Patients
Of the multitude of symptoms for which patients seek palliative care, and for which patients are admitted to hospice programs, pain is a chief complaint. It is prevalent in 76% of patients at end-of-life care.1 This is true not only for cancer and acquired immunodeficiency syndrome (AIDS), the two most common diagnoses for which patients are admitted to hospice, but also true for patients admitted for cardiac failure2, kidney failure3, and a host of other terminal illnesses.4 In the World Health Organization (WHO) definition, palliative care, “provides relief from pain and other distressing symptoms” is first on the list of palliative goals.5 Pain occurs in the majority of cancer patients, and has traditionally been under-treated in both adults and children.6,7,8 Pain increases in prevalence and severity as the cancer progresses; 75% of patients with advanced cancer have pain, with 40-50% rating it as moderate-to-severe, and 25-30% as very severe.6 It has long since been recognized that approximately 85-90% of pain could be controlled with simple and available methods.9 Despite guidelines by the National Comprehensive Cancer Network10, World Health Organization11, and American Pain Society12, cancer pain is still inadequately controlled.13 The causes of this are myriad, but generally, inadequate pain management is not due to a lack of medicines or other therapy. Rather, it is due to inability or unwillingness to effectively deploy commonly available therapeutics.14 The etiology of pain in the palliative patient can be secondary to disease related tissue destruction, therapy related to the disease, or to unrelated pathology. For example, cancer can cause pain by local tissue destruction, osseous metastases, and neural or visceral invasion. Diagnostic tests, surgery, radiation and chemotherapy have their own morbidity and associated pain. Finally, most patients at disease-related end of life are elderly and can have pain associated with osteoarthritis, disc disease, post-herpetic neuralgia, diabetic neuropathy, and the Address Correspondence to: Timothy L. Sternberg, MD, Pain Management, Heekin Orthopedic Specialists, 2627 Riverside Avenue, Jacksonville, FL 32205. Email:Dr.Sternberg@heekinortho.com. 12 Vol. 61, No. 4 2010 Northeast Florida Medicine
many other degenerative processes associated with cumulative living on earth.
Pain Classification
Pain causes global disruption of life enjoyment and function, causing helplessness, anxiety and depression. As expected, cancer patients with pain have a worse quality of life than those without pain.15 Principles of palliative pain and symptom management include: a commitment to the patient that distressing symptoms can and will be controlled, comprehensive evaluation, recognition of common syndromes, symptom directed therapy, frequent reassessment and re-adjustment, and involvement of the patient and family.14 A comprehensive pain assessment includes a detailed directed pain history, psychosocial assessment, physical examination, and diagnostic workup. The pain history includes a measure of intensity, quality, timing, location, and exacerbating/relieving factors. These details allow the physician to classify the type and severity of pain in order to direct specific therapy. It is clinically helpful to functionally classify pain as nociceptive or neuropathic. Nociceptive pain can be further subdivided into somatic and visceral. Somatic nociceptive pain is due to destruction of body wall tissue and is generally well localized, aching, or gnawing. Visceral nociceptive pain is due to distension of solid viscera, obstruction of hollow viscus, or ischemia, and is usually deep, poorly localized, and pressing. Neuropathic pain is due to destruction or dysfunction of nervous tissue and is typically marked by superficial stinging and burning paresthesias. Functional classification of pain as nociceptive, neuropathic, or both, enables the clinician to direct pharmacotherapy toward the particular pain complex. Severe pain from terminal disease is usually a combination of nociceptive and neuropathic pain.
Pharmacology of Pain Management
Pain control modalities include pharmacotherapy, chemotherapy, radiation, hormonal therapy, minimally invasive interventional techniques, surgery, physical methods and psychosocial interventions.16 The majority of patients achieve adequate control with systemic pharmacotherapy and this should be the base of any palliative pain management plan. Pharmacologic options include non-opioid analgesics, opioids, and medicines traditionally referred to as “adjuvants,” medicines formulated for non-pain indications that treat some aspect of the pain syndrome. Important non-opioid analgesics are non-steroidal antiinflammatory drugs (NSAIDs). They provide analgesia for mild-to-moderate pain, have opioid sparing effects, and are particularly useful. This is especially true when there is inflammation, such as in bone metastasis, and when there is slow, prolonged tissue damage, such as occur with pancreatic cancer.
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NSAID have a ceiling effect, a maximum dose beyond which no further analgesia would be achieved and organ toxicities, most importantly gastrointestinal, renal and hematologic. In general, it is beneficial to provide a basal NSAID if there are no specific contraindications. Reasonable starting equipotent dosages are found in Table 1. Opioids are the mainstay of nociceptive pain management. When pain is continuous, as is usually the case with life-limiting disease such as advanced cancer, an around-theclock opioid, along with an opioid for breakthrough pain, are usually necessary. They can be delivered by several routes, are not associated with organ toxicity, and have traditionally been thought to have no ceiling effect. The latter property
means that the dose can be usually titrated upward until either adequate analgesia, or a rate limiting side effect, occurs. Opioids produce effects by interacting with opioid receptors in the central nervous system (CNS). Most opioids produce similar analgesia at equipotent doses, though some opioids have particular aspects that would affect the clinical decision to prescribe one over the other. Morphine, for example has metabolites that are both toxic (morphine 3 glucuronide) and active (morphine 6 glucuronide) which can accumulate with renal failure. Methadone, because it has an n-methyl-d-asparate antagonistic effect, in addition to its mu-opioid agonistic effect, is particularly helpful with neuropathic pain. Though opioids have several adverse side effects, patients
Table 1 Non-Steroidal Anti-Inflammatory and Non-opioid Analgesics Medication Acetaminophen
Acetylsalicylic acid
Celecoxib
Choline magnesium trisalicylate
Ibuprofen
Indomethacin
Naproxen
Piroxicam
Salsalate
Sulindac
Tramadol
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Adult Dose
Pediatric Dose
APAP, Tylenol
325-650mg po q4-6h prn Max: 4000mg/day
10-15mg/kg po q4-6h prn Max: 2600mg/day
Aspirin, ASA
325-650mg po q4h prn Max: 4000mg/day
10-15mg/kg po q4-6h prn Max: 80mg/kg/day
Celebrex
100-200mg po q12h-qd Max: 400mg/day
NA
Trilisate
500-1500mg po q8-12h prn Max: 3000mg/day
25mg/kg po q12h prn
Motrin
400-800mg po q4-6h Max: 3200mg/day
4-10mg/kg po q6-8h prn Max: 40mg/kg/day OR 2400mg/day
Indocin
25-50mg po q6-12h prn Max: 200mg/day
1-2mg/kg po q6-12h prn Max: 4mg/kg/day OR 200mg/day
Naprosyn
250-500mg po q8-12h prn Max: 1500mg/day
5mg/kg po q12h prn Max: 1000mg/day
Feldene
10-20mg po qd prn Max: 20mg/day
0.2-0.3mg/kg po qd prn Max: 15mg/day
Salsitab
500-1000mg po q4-8h prn Max: 4000mg/day
NA
Clinoril
150-200mg po q12h prn OR 300-400mg po qd prn Max: 400mg/day
NA
Ultram, Ultracette
50-100 mg q 6h prn pain Max: 400 mg/day
NA
Northeast Florida Medicine Vol. 61, No. 4 2010 13
usually become tolerant to all except for constipation. Another adverse effect is the phenomenon of opioid induced hyperalgesia (OIH), and is the exception to the ceiling effect with up-titration of opioids. The cause of OIH is still incompletely understood, but may involve accumulation of toxic opioid metabolites (e.g., morphine-3 glucuronide) or receptor-mediated trans-synaptic changes in the CNS. Reasonable starting equipotent dosages are found in Table 2. Medications traditionally classified as adjuvants are most helpful for neuropathic pain, or to treat some non-pain symptom of the patients suffering. Medications useful for neuropathic pain include antidepressants with norepinephrine re-uptake inhibition (tricyclic antidepressants [TCA] and serotonin
compression and intracranial edema. Amphetamines and other CNS stimulants augment analgesia, although they are usually used to counteract opioid induced sedation. Benzodiazepines are the drug of choice for palliative relief of anxiety. There are a host of anti-emetics available to control nausea. Stool softeners, laxatives, and peripherally acting opioid antagonists (i.e., methylnaltrexone [Relistor®]) counteract opioid induced constipation. Diphenoxylate (Lomotil®) and loperamide (Imodium®) control diarrhea, whereas octreotide (Sandostatin®) decreases GI secretions and is useful in treating diarrhea and bowel obstruction. Megestrol acetate (Megace®) and dronabinol (Marinol®) increase appetite. Chlorpromazine (Thorazine®), haloperidol (Haldol®), quetiapine (Seroquel®), and olanzapine (Zyprexa®) can be used in terminal delirium and restlessness.
Table 2 Opioid Prescribing Guideline: Approximate Equianalgesic Chart Medication
Approximate Equianalgesic
Recommended Starting Dose Adults
Recommended Starting Dose Children
Oral dose
Parenteral
Oral
Parenteral
Oral
Parenteral
Morphine
30 mg q 3-4 hr
10 mg q 3-4 hr
15-30 mg q 3-4 hr
5-10 mg q 3-4 hr
0.3 mg/kg q 3-4 hr
0.1 mg/kg q 3-4 hr
Codeine (T3 has 30 mg)
200 mg q 3-4 hr
120 mg q 3-4 hr
60 mg q 3-4 hr
60 mg q 2 hr
1 mg/kg 3-4 hr
Not recommended
Hydromorphone (Dilaudid, Exalgo)
7.5 mg q 3-4 hr
1.5 mg q 3-4 hr
4 mg q 3-4 hr
1.5 mg q 3-4 hr
0.06 mg/kg q 3-4 hr
0.015 mg/kg q 3-4 hr
Hydrocodone (Lorcet, Lortab, Vicodin, others)
30 mg q 3-4 hr
Not available
5-10 mg q 4-6 hr
Not available
0.2 mg/kg q 3-4 hr
Not available
Fentanyl (Duragesic)
100 mcg/hr patch = MSO4 180 mg po/24h
200 mcg infusion
25 mcg/h q72h transdermal
50 mcg iv q1-2
10 mg q 6-8 hr
5-10 mg q 8 hr
5-10 mg q 8 hr
0.2 mg/kq q 3-4 hr
0.1mk/kg q 6-8 hr
Not available
10 mg q 4-6 hr
Not available
0.2 mg/kg q 3-4 hr
Not available
Methadone (Dolophine,others) 10-15 mg q 6-8 hr Oxycodone (Roxicodone, Percocet, Tylox, others)
20 mg q 3-4 hr
norepinephrine reuptake inhibitors [SNRI]), anti-epileptic drugs (AED) and cationic channel blockers (Table 3., p.15). TCAs and SNRIs are thought to inhibit neuropathic pain by increasing norepinephrine and serotonin in the inhibitory pathways in the CNS. AEDs and centrally acting channel blockers stabilize neuronal membrane, thereby inhibiting ectopic neuronal firing, a process thought to be operant in neuropathic pain.17 The WHO analgesic ladder has been used as a guide to treat cancer and non-cancer pain. This is a relatively simple, though never rigorously studied, concept of using mild analgesics for mild pain and adding progressively stronger analgesics for unrelieved pain. A modified analgesic ladder, considering components of both nociceptive and neuropathic pain, is in Table 4. (p.15) A general pharmacologic rule is to dose analgesics by the clock, by the ladder, by the patient and by the specific pain syndrome. Other adjuvants are as varied as the symptoms they treat. Bisphosphonates can relieve malignant bone pain, while corticosteroids can reduce pain of bone metastasis, neural 14 Vol. 61, No. 4 2010 Northeast Florida Medicine
Other Pain Management Techniques
Regarding non-pharmacologic pain management options, radiotherapy (RT) produces analgesia beyond what can be explained by radio-sensitivity of the tumor.16 RT provides especially effective pain relief from bone metastases, such as those that commonly occur with breast and prostate cancer. RT is also helpful in acute spinal cord compression and chest pain from bronchial and esophageal cancer. The trend in palliative local external beam radiation is to give larger doses in minimal fractions. Beta-emitting radio-nucleotides are effective in osteoblastic metastases such as produced by prostatic metastases.16 Palliative chemotherapy provides effective pain relief in responsive tumors. It is particularly useful in colorectal, pancreatic and recurrent squamous cell cancers as well as leptomeningeal disease and liver metastasis. With regard to physical modalities, heat can be used to treat musculoskeletal pain although it should not be used over areas exposed to radiotherapy. Cold can relieve certain burning pains and muscular spasms but can actually exacerbate www . DCMS online . org
Table 3 Anti-Neuropathic Medications Medication
Trade Name
TCA’s: Amitriptyline Nortriptyline Desipramine
Elavil Pamelor Norpramin
SRNI’s: Venlafaxine Doluxetine
Approximately 15-28% of patients with terminal cancer die with severe pain despite analgesic pharmacotherapy.18,19,20 Those of us who treat malignant pain have our own case series where we have witnessed this reality. In these situations, minimally invasive interventional techniques, sometimes confusingly referred to in textbooks as “anesthetic procedures,” can provide very good relief with a relatively low risk and cost to benefit ratio. Local anesthesia and steroid injected around a tumor compressed nerve root decreases edema and inflammation and can reduce pain for weeks.7 Alcohol or phenol intercostal neurolysis can significantly reduce or eliminate the pain from rib metastases for months or longer. Selected intraspinal neurolysis can selectively destroy localized nerve root function and approximately 60% of patients experience near-complete pain relief until death.21
Beginning Dose
Max Dose
25 mg qhs
150 mg/d
Effexor XR Cymbalta
37.5-75 mg qd 30(1 wk)>60mg qhs
225 mg/d 120 mg/d
AED’s Gabapentin Oxcarbazepine Pregababalin
Neurontin Trileptal Lyrica
100 mg qhs tid 300 mg bid 50 mg bid-tid
3600 mg/day 2400 mg/d 600 mg/d
Topical Agents Capsaicin cream Lidocaine patch
Zostrix Lidoderm
0.025 q4h 5% patch 1-3 q12h
0.075% q4h 3 patches q12h
TCAs: tricyclic antidepressants SRNI’s: serotonin norepinephrine reuptake inhibitors AED’s: anti-epileptic drugs
allodynia. Massage and touch therapy provide comfort for many aches and pains. Acupuncture has been used successfully to treat nausea. Psychosocial interventions, such as relaxation and guided imagery, can give one a sense of control and are useful adjuncts to a systemic analgesic regimen. Palliative surgery can provide effective pain relief in certain situations. Though debulking generally is not effective for pain relief, surgery can provide palliation by stabilizing long bones from pathologic fractures, decompressing the spinal cord, and relieving pathologic bowel obstruction.16
Neurolytic sympathetic blockade can relieve neuropathic pain in the head and neck (stellate ganglion) or visceral pain from upper abdominal (celiac plexus). Figure 1 (p.16) shows a celiac plexus block for a patient with unresectable pancreatic cancer. A randomized prospective trial and retrospective clinical data analysis show that neurolytic celiac plexus blockade and systemic analgesics provide significantly better pain relief than systemic analgesics alone in pancreatic cancer.22,23 Pain from pelvic tumors can be treated with a superior hypogastric plexus block as is demonstrated in Figure 2. (p.16) Neurolytic spinal “saddle” blocks can be used successfully to treat intractable pain from pelvic malignancy.24 Pathologic vertebral compression fractures can be treated with vertroplasty or kyphoplasty. Pain from vertebral metastases not amenable to radiotherapy can be likewise ameliorated. (Figure 3, p.16). Occasionally, intra-articular injections can be used to palliate pain from pathologic arthritis. Figure 4 shows an intra-articular steroid injection in an AIDS patient with profound avascular necrosis not deemed to be a candidate for hip arthroplasty.
Table 4 Analgesic Ladder for Nociceptive and Neuropathic Pain Severe Pain
Moderate Pain Mild-mod opioid Mild Pain
+ NSAID/APAP +/- AED
Strong opioid +NSAID/APAP +AED +TCA/SRNI
Moderate Pain + TCA/SNRI + AED +/- tramadol
NSAID/APAP + tramadol
Mild Pain AED +/- tramadol
NSAID: non-steroidal anti-inflammatory drug APAP: acetominaphen TCA: tricyclic antidepressant AED: anti-epileptic drug SNRI: serotonin norepinephrine reuptake inhibitor antidepressant Mild-mod opioid: codeine, hydrocodone, propoxyphene Strong opioid: morphine, methadone, hydromorphone, oxymorphone
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Northeast Florida Medicine Vol. 61, No. 4 2010 15
Precise placement of medications or neurolytic agent, assisted by imaging modalities, is absolutely critical for the effective and safe use of neurolysis. Figure 5 shows a trans-foramen ovale neurolysis of the mandibular division of the trigeminal nerve in a patient with oro-pharyngeal carcinoma. Intrathecal drug delivery, often with an implanted subcutaneous pump, bypasses all of the metabolic and transport processes that hinder opioid effectiveness by delivering the drug directly to the CNS and is sometimes the only effective way to recapture opioid analgesia when higher systemic doses are providing increasing adverse effects but not effective analgesia.
Figure 4 Hip Intra-articular steroid injection
Summary
In its essence, palliative care is symptom management, and pain is the most distressing of symptoms. Pain can cause severe and indiscriminate suffering in patients whose days are
Figure 5 Trans-foramen ovale trigeminal neurolysis
Figure 1 CT guided celiac plexus neurolysis
Figure 2 Superior hypogastric plexus neurolysis
Figure 3 T12 and L1 vertebral kyphoplasty
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finite and who intuitively know the odds – we are not going to change the ultimate outcome. However, we can relieve suffering and “create space for healing in places that reek of impossibility.”25,26 Fortunately, we do not need to wait for new drugs or procedures to be developed. We do need to eliminate barriers and utilize available and effective options to our patients’ benefit. We should maximize analgesic pharmacotherapy, and when it reaches its limit, provide other readily available therapy.
References
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Kutner JS, Kassner CT, Nowels DE: Symptom burden at the end of life: Hospice providers’ perceptions. J Pain Symptom Manage 2001;21:473-480.
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SUPPORT Investigators: A controlled trial to improve care for seriously ill hospitalized patients. JAMA 1995;274:1591-1598.
3.
Kimmel PL, Emont SL, Newmann JM, et al: ESRD patient quality of life: Symptoms, spiritual beliefs, psychological factors, and ethnicity. Am J Kidney Dis 2003:42:713-721.
4.
Emanuel LL, Librach SL: Palliative Care: Core Skills and Clinical Competencies; Philadelphia: Sander Elsevier: 2007. 99.7-350.
5.
World Health Organization: www.who.int/cancer/palliative/ definition/en/ Accessed March 30, 2003.
6.
Bonica JJ. Cancer pain. In: Bonica JJ, editor. The management of pain. 2nd ed. Vol. Philadelphia: Lea and Febiger; 1990. pp. 400-460.
7.
Jacox A, Carr DB, Payne R, et al. Management of Cancer Pain. Clinical Practice Guideline No. 9. Rockville, MD: Agency for Health Care Policy and Research, US Department of Health
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and Human Services, Public Health Service; March 1994, AHCPR Publication No. 94-0592. pp.3-7.
17.
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Miser AW, Dothage, JA, Wesley, RA, Miser JS. The prevalence of pain in a pediatric and young adult cancer population. Clin J Pain 1987; 29(1):73-83.
18. London SP. Interventional approach to cancer pain. Curr Pain Headache Rep 2002;6:202-6
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Schug SA, Zech D, Dorr U. Cancer pain management according to WHO analgesic guidelines. J Pain Symptom Manage 1990; 5(1): 27-32.
10. National Comprehensive Cancer Network. Clinical Practice Guidelines in Oncology: Cancer Pain, Version 1.2004. Rockledge, PA: National Comprehensive Cancer Network; 2004. pp 10-13. 11. World Health Organization. Cancer pain relief and palliative care: report of a WHO Expert Committee. World Health Organ Tech Rep Series. 1990; 804:1-75. 12. Miaskowski C, Cleary J, Burney R, et al. Guideline for the Management of Cancer Pain in Adults and Children. 3rd ed. Glenview, IL: American Pain Society; 2003. 13. Davis MP, Walsh D. Epidemiology of cancer pain and factors influencing poor pain control. Am J Hosp Palliat Care. 2004;21:137-142. 14. Sternberg TL, King S. Cancer Pain and Symptom Management. NE FL Med 2005; 56 (3): 14-22 15. Ferrell BR, Rhiner M, Cohen MZ, Grant M. Pain as a metaphor for illness. Part I: Impact of cancer pain on family caregivers. Oncol Nurs Forum 1991;18(8): 1303-9. 16. Waller A, Caroline NL. Handbook of palliative care in cancer, 2nd ed. Boston: Butterworth Heinemann; 2000.
Zimmermann M. Pathology of neuropathic pain. European Journal of Pharmacology 2001; 429:23-37.
19. Sloan PA, Melzack R. Long-term patterns of morphine dosage and pain intensity among cancer patients. Hosp J 1999;14:35-47. 20. Bhatnagar S. Interventional pan management: Need of the hour for cancer pain patients. Ind J Pall Care 2009;15(2): 93-94. 21. Rodriguez-Bigas M, Petrelli NJ, Herrera L, West C. Intrathecal phenol rhiztomy for management of pain in recurrent unresectable carcinoma of the rectum. Surg Gynecol Obstet 1991; 173(1):41-4. 22. Wong GY, Schroeder DR, Carns PE, Wilson JL, et al. The effect of neurolytic celiac plexus block on pain relief, quality of life, and survival in patients with unresectable pancreatic cancer. JAMA 2004 Mar 3;291(9): 1092-94. 23. Erdek MA, Halpert DE, Gonzalez-Fernandez M, Cohen SP. Assessment of celiac plexus block and neurolysis outcomes and technique in the management of refractory visceral pain. Pain Med 2010;11:92-100. 24. Slatkin NE, Rhiner M. Phenol saddle blocks fro intractable pain at end of life: Report of four cases and literature review. Am J Hospice and Palliative Med 2003; 20; 62-66. 25. Jones CM, Colemen S: Neurodegenerative diseases, in: Emanuel LL, Librach SL: Palliative Care: Core Skills and Clinical Competencies; Philadelphia: Sander Elsevier: 2007: 382-395. 26. McDade C: The serpent. In Sorrow and Healing CD. Plainville, MD: Surtsey Publishing, 1993.
A traveling exhibition on view from December 13, 2010 through March 13, 2011 Examining the role that physicians and scientists played in legitimizing and implementing Nazi racial policies, which ultimately led to the murder of Europe’s Jews.
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Northeast Florida Medicine Vol. 61, No. 4 2010 17
Management of Selected Non-pain Symptoms at the End of Life Neel G. Karnani, MD Abstract: There are a myriad of symptoms possible at the end of life; 54 symptoms are listed in the Oxford Textbook of Palliative Medicine,1 alone. This article will focus on some of the most common and distressing symptoms: nausea/vomiting, dyspnea, terminal delirium, and terminal secretions. The intent in treating these symptoms is to enhance the quality of life regardless of where the patient is in the trajectory of illness – the essence of palliative care.
Introduction
“ You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but to live until you die,” said Dame Cicely Saunders, widely acclaimed as the founder of the modern day hospice movement. It follows then that the focus of palliative care of patients with life limiting illness is treating their symptoms, thereby improving their quality of life. This requires a comprehensive discussion with patients and their families about their expectations and goals of care in the context of where the patient is in the trajectory of the illness. In my work as a hospice/palliative care physician, I deal with patients at the end of life who suffer non-pain symptoms, namely; nausea/vomiting, dyspnea, terminal delirium and terminal secretions. The challenge is to treat those symptoms in the proper way so quality of life is improved and the patient can “live” until he/she dies. Symptom: Nausea and Vomiting Nausea and vomiting have the ability to seriously affect quality of life. In one study, nearly 60% of terminally ill cancer patients were subjected to nausea, of which a substantial number experienced vomiting.2 Understanding the pathophysiology of nausea, gives us the ability to target specific receptors with appropriate medications, minimizing side effects and thereby enhancing the quality of life. At the center of the etiology of vomiting is the vomiting center in the medulla. It receives input from one of four regions, thereby facilitating nausea and/or vomiting. Region one: The chemoreceptor trigger zone (CTZ) is located in the floor of the fourth ventricle and mediates the most common causes of nausea. It senses changes in the concentration of toxins, such as certain drugs (e.g. opioids), BUN, creatinine and bilirubin. It then stimulates the vomiting center via two major neurotransmitters: dopamine and serotonin.3 Therapies targeted at interfering with these neurotransmitters will help to alleviate the sensation of nausea. Administering a dopamine antagonist is of great value in mitigating nausea. Address Correspondence to: Neel Karnani, MD. Regional Medical Director, Haven Hospice, 8301 Cypress Plaza Drive, Suite 119, Jacksonville, Fl 32256. E-mail: ngkarnani@havenhospice.org.
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Haloperidol is well tolerated by subcutaneous or intravenous route. It is ideal for opioid-related nausea. Prochlorperazine (Compazine®) is an alternative remedy. It is available in oral, IM, IV and rectal suppository forms. Serotonin 5 HT3 receptor antagonists, such as ondansetron (Zofran®) are available in generic form and can be used as additive therapy. Zofran® can be administered orally and intravenously. Region two: The gastrointestinal tract may be the reason for nausea/vomiting for a number of reasons. Gastric irritation, due to a variety of agents, can be relieved by the use of proton pump inhibitors (eg. omeprazole) or H2 blockers (ranitidine). Constipation is a frequent cause in patients using opioid medications. The judicious use of laxatives can prevent this frequent complication. Bowel obstruction is not uncommon in intra-abdominal and pelvic malignancies, such as ovarian and colon cancers. Such patients can often be managed at home using a combination of medications, such as octreotide (Sandostatin®), dexamethasone and haloperidol given subcutaneously.4 Octreotide reduces the amount of intestinal secretions, dexamethasone reduces edema and potentiates the effect of HT3 inhibitors (Zofran®) and haloperidol helps vomiting by virtue of its anti-dopaminergic activity. Region three: The cerebral cortex is subject to raised intracranial tension in patients with primary or secondary brain tumors. Dexamethasone, sometimes in conjunction with radiation therapy, can help alleviate the symptoms of headache and vomiting. Anxiety plays a significant role in patients with life-limiting illnesses. Anxiolytics, in the form of benzodiazepines and SSRIs are extremely helpful in such situations. Uncontrolled pain, mediated via the cerebral cortex, is another important but often overlooked cause of nausea. Region four: The vestibular apparatus, when stimulated due to disease or motion, can cause nausea and vertigo. Meclizine is a useful medication for this cause of nausea. Scopalamine patches are an alternative.
Symptom: Dyspnea
It is important to remember that dyspnea, like pain, is a subjective sensation.Patients describe dyspnea in many ways, e.g. “cannot get enough air”, “smothering feeling in the chest” and “air does not go down all the way”. It occurs in up to 70 % of terminally ill cancer patients and is often more distressing than pain.5 Assessment of a patient’s respiratory status includes data about rate, depth and the effort of breathing. But this does not define the entire extent of dyspnea since it is a subjective sensation and can only be determined by communicating with the patient. The specific etiology of breathlessness varies with the
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pathophysiology of the underlying clinical condition. Consequently, so does the specific treatment. The patient with chronic obstructive pulmonary disease (COPD) may respond to nebulized albuterol and ipratropium and/or steroids. If the patient is experiencing volume overload as a result of congestive heart failure, diuretics and afterload reduction may be the answer; provided the blood pressure is adequate. Marginal blood pressure (systolic 90 mm) often precludes these measures in palliative medicine. Malignant pleural effusions will respond to thoracocentesis and possibly pleurodesis or an indwelling chest tube, but such interventions are based on anticipated life expectancy. Dyspnea and fatigue due to severe anemia usually responds to blood transfusions on a time limited basis. Social, financial and spiritual issues contribute to anxiety, which may lead to dyspnea. Counseling by the appropriate social worker or clergy may be indicated in that particular instance. Supportive measures include repositioning the patient, watching for purse lip breathing and avoiding triggers like smoke. Increasing air movement across the face, using a fan or opening a window stimulates the V2 branch of the trigeminal nerve and improves breathing.6 The use of bedside relaxation techniques, such as guided imagery, can be helpful. Oxygen provides the most benefit for patients who are hypoxic.7 Though it may sound counterintuitive, there is ample evidence that opioids help to relieve dyspnea in patients who continue to be short of breath despite maximal therapy regardless of the pathophysiology. Opioids increase exercise tolerance in patients with COPD and help to mitigate dyspnea in patients with heart failure.8,9 Additionally, they have been found to be beneficial in patients with terminal cancer.10 The goal of treatment in palliative care is to improve the patient’s perception of dyspnea rather than correcting blood gases or some objective measure. Conventional wisdom is that morphine is a better agent than other opioids (e.g. hydromorphone, oxycodone, fentanyl) in the relief of dyspnea, though it is probably a class effect. In opioid naïve patients, start at a dose of 2.5-10 mg orally every 2-4 hours, as needed. When acute and severe, a subcutaneous does of 2-5 mg every 30 minutes as needed, can be used. If the physician is concerned about injudicious use by nursing staff, an order to hold the opioid if respiratory rate is below 8-10 per minute, will avoid trouble. It is important to keep in mind that respiratory depression is always preceded by somnolence. In facilities where PRN (pro re nata – as needed) dosing is unavailable, an oral dose of 5-10 mg every 6 hours is a good place to start and then titrate the dose upwards as needed. Morphine can be administered by the oral, sublingual, parenteral and rectal route. Nebulized morphine has not shown to be helpful.11 Anxiolytics (e.g. lorazepam) are often used synergistically to help relieve the anxiety associated with dyspnea.
Symptom: Terminal Delirium
Delirium, often accompanied by agitation, is a fairly reliable indicator of impending death. For the clinician it can be www . DCMS online . org
a challenge to manage. There is little doubt that terminal delirium in dying patients can cause a lot of emotional distress in both patients and family members. In one study, more than two-thirds of the bereaved family members perceived all delirium-related symptoms as disturbing or very disturbing.12 This is all the more important when one considers the frequency with which it occurs; the prevalence rates in cancer patients are as high as 68 % to 88 % just before death.13-16 Delirium can be differentiated from depression by its relatively acute onset and the fluctuating disturbance of consciousness or arousal. There may be an acute change in cognitive function, mumbling speech, memory and perceptual disturbances with delusions and hallucinations. Death is a time when loved ones want to connect with the patient, so one can understand why delirium causes so much distress. Providing information about delirium, being present with the family, and explaining the expected course with daily changes, can go a long way in alleviating this anguish.17 If not managed properly, family members may remember an awful dying experience and may fear a similar fate for themselves. The causes of delirium are usually multifactorial and may often be irreversible. The adverse effects of some medications; opioids, corticosteroids, anticholinergic drugs and benzodiazepines may be responsible for the cognitive decline. Other causes include infection, brain metastasis, dehydration, hypoxia, metabolic abnormalities such as hypercalcemia, azotemia and hepatic encephalopathy. The extent of appropriate work-up to seek the cause of delirium depends, largely, on where the patient is in the trajectory of their illness and the overall goals of care.18 Patients and families usually desire comfort measures and do not want invasive procedures, such as drawing blood for lab studies. Nonpharmacologic treatment includes reorientation, having familiar people present, and reducing sensory stimulation.18 Psychotropics are the first line of pharmacologic therapy. They tend to improve the organization of thinking for patients with agitation. Haloperidol (Haldol®), by virtue of its versatility (effective in treating nausea, vomiting and hiccups), and its cost and side effect profile is my drug of choice. It can be administered orally, sublingually, intravenously and is frequently given subcutaneously in hospice practice. It has minimal sedating effects which is one of the goals that families hope to achieve. The starting dose is 0.5 – 2 mg po, IV or subcutaneous q 2-4 hours and then can be titrated in escalating doses for therapeutic effect. Patients with Parkinson’s disease may not tolerate haloperidol. Atypical antipsychotics such as quetiapine (Seroquel®), risperidone (Risperidal®), olanzapine (Zyprexa®) may be used instead. The atypical antipsychotics are also useful in skilled nursing facilities where, more often than not, haloperidol is rejected due to regulatory issues. Other neuroleptics that are beneficial are chlorpromazine (Thorazine®) and thioridazine (Mellaril®). Benzodiazepines (e.g. lorazepam) may be added if the response is not adequate. Benzodiazepines are not the first line treatment for terminal delirium, which may paradoxically worsen, when they are used.19 Northeast Florida Medicine Vol. 61, No. 4 2010 19
Symptom: Terminal Secretions
Secretions tend to pool in the oropharynx during the last 48 hours of life as the patient is unable to clear them due to a diminishing level of sensorium, giving rise to the so called “death rattle” (a term to be avoided). It is often quite distressing to patients’ families who believe their loved ones may be drowning in their own secretions, and they sometimes request a suction machine. Suctioning is often ineffective because the secretions are beyond the reach of oral suction and it is also distressing for the patient. Oropharyngeal secretions accumulate near death (Type 1). Tracheo-bronchial secretions accumulate over several days as patients get weaker and their cough reflex diminishes (Type 2).20 Repositioning the patient on one side with the upper body elevated can be helpful. Anti-cholinergic medications are the most common agents used to reduce the production of saliva and mucus. It is more likely that salivary secretions will respond to anticholinergic therapy than bronchial secretions.20,21 These drugs are more effective when used at the onset of upper airway congestion rather than later in the process.22 The two most frequently used agents at my hospice are atropine ophthalmic drops 1 %, given by sublingual or buccal route, and transdermal scopolamine patches (similar to the ones used for motion sickness). Atropine is administered in the form of 2-4 drops every 2-4 hours and can sometimes provide an avenue by which families can show their affection for the dying individual. Ease of administration, easy titration, minimal side effects and cost effectiveness are some its advantages.23 Transdermal scopolamine is convenient but may take up to 12 hours for full therapeutic benefit and is considerably more expensive. Anecdotally, there appears to be more confusion seen with transdermal scopolamine patches than with atropine drops since both medications cross the blood brain barrier. Glycopyrrolate (Robinul®) does not cross the blood brain barrier and can be given subcutaneously, orally and sublingually.24There is no conclusive evidence of comparative efficacy of the various anticholinergic agents.25
Conclusion
Controlling symptoms at the end of life can challenge the mettle of even the most compassionate of physicians as one considers the input from various sources – patients, families, nurses, social workers and other non-clinical staff. A comprehensive discussion with patients, their families and staff about their expectations and goals of care in the context of where the patient is in the trajectory of the illness will help ease the process substantially.
References
1.
Doyle, D, Hanks, G, MacDonald, N. ,editors. Oxford Textbook of Palliative Medicine. 2nd ed.1998.Oxford University Press. Oxford, England.
2.
Reuben DB, Mor V. Nausea and vomiting in terminal cancer patients. Arch Intern Med 1986;146(10):2021-2023.
3.
Hallenbeck JL. Palliative Care Perspectives. Online version sponsored by Growth House, Inc. 2003 Oxford University Press,
20 Vol. 61, No. 4 2010 Northeast Florida Medicine
Inc. http://www.mywhatever.com/cifwriter/library/70/4936. html Accessed August 2010. 4.
Policzer JS, Sobel J. Management of selected non-pain symptoms of life-limiting illness. Unipac 4 3rd ed. 2008 American Academy of Hospice and Palliative Medicine.Glenview, Il. pp. 45-47.
5.
Reuben DB, Mor V. Dyspnea in terminally ill cancer patients. Chest 1986;89(20):234-6.
6.
Kemp C. Palliative care for respiratory problems in terminal illness. Am J Hosp Palliat Care. 1997;1(1):26-30.
7.
Uronis HE, Currow DC, McCrory DC, Samsa GP, Abernethy AP. Oxygen for relief of dyspnoea in mildly- or non-hypoxaemic patients with cancer: a systematic review and meta-analysis. Br J Cancer 2008;98(2):294-299.
8.
Light RW, Muro JR, Sato RI, Stansbury DW et al. Effects of oral morphine on breathlessness and exercise tolerance in patients with chronic obstructive pulmonary disease. Am Rev Respi Dis 1989;910:126-133, 139.
9.
Johnson MJ, McDonagh TA, Harkness A et al.Morphine for the relief of breathlessness in patients with chronic heart failure – a pilot study. Eur J Heart Fail 2002;4(6):753-756.
10. Jennings AL, Davies AN, Higgins JP, Broadley K. Opioids for the palliation of breathlessness in terminal illness. Cochrane Database Syst Rev. 2001;4:CD002066. 11. Bruera E, MacEachern T, Ripamonti C ,Hanson J. Subcutaneous morphine for dyspnea in cancer patients. Ann Intern Med. 1993;119(9):906-907. 12. Tatsuya M et al. Family-perceived distress from delirium-related symptoms of terminally ill cancer patients. The Academy of Psychosomatic Medicine. Psychosomatics April 2004; 45:107-113. 13. Massie MJ, Holland J, Glass E. Delirium in terminally ill cancer patients. Am J Psychiatry 1983;140:1048-1050. 14. Pereira J, Hanson J, Bruera E. The frequency and clinical course of cognitive impairment in patients with terminal cancer. Cancer 1997; 79:835-842. 15. Bruera E, Miller J, McCallion J et al. Cognitive failure in patients with terminal cancer: a prospective study. J Pain Symptom Manage 1992;7:192-195. 16. Lawlor PG, Ganon B, Mancini IL, et al. Occurnce, causes and outcome of delirium in patients with advanced cancer. A prospective study. Arch Intern Med 2000;160:786-794. 17. Morita T., Akechi T, Ikenga M et al. J Pain Symptom Manage. 2007 Dec;34(6):579-89. 18. Breitbart W,Yesne A. Agitation and Delirium at the End of Life: “We couldn’t manage him” JAMA. 2008;300(24):2898-2910. 19. Weissman DE. Diagnosis and treatment of terminal delirium. 2nd ed. Fast Facts and Concepts July 2005 http://www.eperc. mcw.edu/fasfact/ff_001.htm. Accessed August 2010. 20. Bennett MI. Death rattle: An audit of hyoscine (scopolamine) use and review of management. JPain Symptom Manage Oct 1996;12(4):229-233. 21. Gray MY. The use of anticholinergics for the management of terminal secretions. Evidence Matters. Summer 2007;1(3). h t t p : / / w w w. h o s p i c e p h a r m a c i a . c o m / a s s e t s / p d f / evidencematters0707.pdf. Accessed August 2010. 22. Wildiers H, Demeulenaere P, Clement P, Menten J. treatment of death rattle in dying patients. Belgian J Med Oncol 2008; 2:275-279.
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23. Protus BM, Grauer PA, KimbrelJM,Kennedy WJ. Evaluation of the use of Atropine 1% ophthalmic solution administered sublingually for the management of terminal respiratory secretions. Palliative Care Consulting Group. College of Pharmacy, The Ohio State University. http://pharmacy.osu. edu/research/research_day/posters_2006/Protus_Bridget/ OPAAtropine2006.pdf . Accessed August 2010. 24. Jones C. “Respiratory Congestion” in Downing GM, Wainwright W, editors. Medical Care of theDying. 4th ed. 2006. Victoria Hospice Society Learning Centre for Palliative Care. Victoria B.C. Canada; pp.381-9. 25. What is the evidence to support the use of antimuscarinic drugs in the management of death rattle. Task Group for the Scientific Committee of the Association for Palliative Medicine. www.palliative-medicine.org. Accessed August 2010.
Did you miss the 2010 DCMS Annual Meeting? Hope not! The event was held Wednesday, December 1, 2010
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If you made it you saw: •
Dr. Malcolm T. Foster, Jr. inaugurated as the 2011 DCMS President
•
Dr. John Lovejoy, Jr. honored with the Clyde Collins Humanitarian Award
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Dr. Jeff Goldhagen received the DCMS Community Service Award
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Dr. Rui Fernandes recognized with the Philip H. Gilbert Young Physician Award
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Northeast Northeast Florida Florida Medicine Medicine Vol. Vol. 61, 61, No. No. 44 2010 2010 21 21
The Role of Palliative Medicine in Dementia Reetu Grewal, MD Abstract: Dementia, a disease of memory loss and cognitive impair-
ment, is a very common illness in our society. There are many issues that patients who have dementia share, including the need for advanced care planning, medications, feeding difficulties, and behavioral problems. Palliative medicine, a relatively new medical field, seeks to provide comfort to patients suffering from any terminal illness, including dementia, in part by providing aggressive anticipation of problems, allowing patients to make their own decisions in a disease that is otherwise known for its lack of decision making abilities.
Introduction
Dementia is a general term for loss of memory and other cognitive abilities including speech and language processing, motor function, object recognition, and/or executive planning abilities, that is severe enough to interfere with daily life.1 Currently affecting approximately 5 million Americans, the most common cause of dementia is due to Alzheimer’s disease.2,3 Alzheimer’s disease is the fifth leading cause of death over the age of 65 in the United States4, and is caused by deposition of plaques in the brain consisting of amyloid-beta protein and intracellular neurofibrillary tangles. The second most common type of dementia is Lewy body dementia which is associated early on with parkinsonism, visual hallucinations, autonomic dysfunction, and sleep disorders in addition to cognitive impairment. Dementia due to vascular causes, either from a large stroke or multi-infarct disease, is another common cause of dementia. The symptoms of vascular dementia may vary depending on the part of the brain that has been affected. There are numerous other specific causes of dementia, and while the diagnostic workup of dementia is beyond the scope of this article, a partial list of specific causes of dementia is included in Table 1. Each specific type of dementia follows its own trajectory, but in general patients with dementia follow a slow decline, with acute illness causing a steeper decline in condition5, and from the time of diagnosis the average patient with dementia survives between four and ten years.6,7 While it is impossible to predict with certainty a person’s prognosis once they are diagnosed with dementia, the National Hospice and Palliative Care Organization has devised a functional assessment tool, known as the Functional Assessment Staging score or FAST score, which is used to stage dementia, regardless of its etiology (Table 2, p.23).8,9 A FAST score greater than 7 is generally associated with a prognosis of six months or less.10 Another recently developed tool is the Mortality Risk Index, which is based on the MDS (full form) criteria and has been Address Correspondence to: Reetu Grewal, MD, Clinical Assistant Professor, University of Florida College of Medicine, Jacksonville, Department of Community Health and Family Medicine, Anchor Plaza Family Medicine Center, 5460 Blanding Blvd., Ste. 3, Jacksonville, FL 32244. Email: Reetu.grewal@jax.ufl.edu. 22 Vol. 61, No. 4 2010 Northeast Florida Medicine
Table 1 Specific Types of Dementia Alzheimer’s Disease Vascular Dementia Mixed Dementia (Alzheimer’s and Vascular) Fronto-Temporal Dementia Lewy Body Dementia Parkinson’s Disease Associated Dementia Normal Pressure Hydrocephalus Metabolic Causes Traumatic Brain Injury AIDS Dementia Complex Creutzfeldt-Jacob Disease
validated for newly admitted nursing home residents with dementia (Table 3, p.24).11
Palliative Medicine
Palliative medicine is a relatively new field of medicine devoted to the care of patients suffering from any life threatening or life limiting illness, with a focus on providing comfort and alleviation of any distressing symptoms. While palliative care can be provided at any stage in a terminal illness, hospice care is confined to the last six months of life. Currently, patients with a primary diagnosis of dementia account for about eleven percent of all hospice admissions across the country.12 Each hospice organization has their own set of criteria in order to qualify for hospice care with a diagnosis of dementia, however it is generally considered appropriate to refer a patient with a FAST score of 7 or higher in the presence of comorbid conditions. In contrast, patients with dementia can begin receiving palliative care from the time they are first diagnosed with dementia, regardless of how far their symptoms have progressed. Due to the state of infancy of palliative medicine in the United States, the majority of patients with dementia do not receive consultation from a trained hospice or palliative medicine professional until they are near end of life. Therefore, primary care physicians, neurologists, and psychiatrists, who provide the majority of care for these patients, are often tasked with providing palliative care for their patients.
Advanced Care Planning
It is important for patients with dementia to consider completing an advanced healthcare directive or designating a healthcare power of attorney, before their memory loss affects their decision making capacity. Upon diagnosis of dementia, physicians should openly and honestly communicate about common issues that affect patients with dementia as their www . DCMS online . org
Table 2 National Hospice and Palliative Care Organizations FAST Score* Score
Highest Level of Consecutive Disability
1
No difficulty either subjectively or objectively.
2
Complains of forgetting of location of objects. Subjective work difficulties.
3
Decreased job functioning evident to co-workers. Difficulty in traveling to new locations.Decreased organizational capacity.
4
Decreased ability to perform complex tasks, e.g. planning dinner for guests, handling personal finances.
5
Requires assistance in choosing proper clothing to wear for the day, season, or occasion.
6
Improperly putting on clothes without assistance or cueing, occasionally or more frequently over the past weeks.
6A
Unable to bathe properly occasionally or more frequently over the past weeks.
6B
Inability to handle mechanisms of toileting occasionally or more frequently over the past weeks.
6C
Urinary incontinence occasionally or more frequently over the past weeks.
6D
Fecal incontinence occasionally or more frequently over the past weeks.
7A
Ability to speak limited to approximately half a dozen intelligible different words or fewer in the course of an average day or in the course of an intensive interview.
7B
Speech ability is limited to the use of a single intelligible word in an average day or in the course of an intensive interview.
7C
Ambulatory ability is lost.
7D
Cannot sit up without assistance.
7E
Loss of ability to smile.
7F
Loss of ability to hold head up independently.
disease progresses, allowing patients and caregivers to make realistic decisions and plans. Physicians should continue this dialogue, understanding that there may be a transition in goals of care from those that are curative in nature to those that are more comfort based, as a patient’s dementia progresses. Though it is impossible to predict every possible scenario, common issues seen in patients with dementia should be discussed, with consideration given to the patient’s quality of life. Benefits and burdens of proposed interventions, such as artificial nutrition and hydration or use of medications, should be reviewed long before they become an urgent issue so that patients can formulate their plans based on personal values and beliefs, rather than delaying decisions and forcing caregivers to make potentially uncomfortable decisions. Healthcare proxies of patients with dementia, who were offered help in advanced care planning, had greater satisfaction with their loved ones’ care than those who did not have that help.13 Utilizing local support groups is comforting to both patients and caregivers, and is another way to assist in advanced care planning. Meeting other families with dementia who are in different stages of the illness, is helpful in previewing what may lie ahead for their loved one and planning for the future.
Common Issues: Medications
Currently two classes of medications are used to treat dementia, cholinesterase inhibitors and N-methyl-D-aspartate www . DCMS online . org
* Table Modified
receptor antagonists, which have been specifically approved for Alzheimer’s dementia but are often used in the treatment of other dementias. The treatment of dementia is beyond the scope of this article, however it is important to note that only memantine and donepazil have been approved for the treatment of severe Alzheimer’s disease; the others are approved for mild to moderate disease. A recent survey of hospice medical directors found that about twenty percent of patients continue on dementia medications upon enrollment in hospice.14 Common side effects from cholinesterase inhibitors include nausea, vomiting, diarrhea and memantine can cause hypertension, constipation, dizziness. It is important to set realistic expectations of these medications when they are initiated and consider discontinuing therapy when it is no longer providing benefit, as in the final stages of dementia, if side effects are intolerable, or if the patient is unwilling or unable to take the medication. Polypharmacy is common among the elderly population, and in patients with dementia as well.15 In patients with advancing dementia, it is worthwhile considering that some therapies, especially preventive ones, may no longer be as important as they once were. For example, in a patient whose dementia has progressed to where they have swallowing difficulties, a preventive aspirin may provide more harm than good. There are no real guidelines on discontinuing therapies, so an individualized approach should be taken. Northeast Florida Medicine Vol. 61, No. 4 2010 23
Table 3 Mortality Risk Index Points
Risk Factors
1.9
Complete Dependence with ADLs
1.9
Male Gender
1.7
Risk Estimate of Death Within 6 Months Score
Risk %
0
8.9
Cancer
1-2
10.8
1.6
Congestive Heart Failure
3-5
23.2
1.6
Oxygen Therapy Needed Within 14 Days
6-8
40.4
1.5
Shortness of Breath
9-11
57.0
1.5
<25% Food Eaten at Most Meals
>12
70.0
1.5
Unstable Medical Condition
1.5
Bowel Incontinence
1.5
Bed Bound
1.4
Age > 83
1.4
Not Awake Most of Day
Time-limited trials of continuing or discontinuing therapies are often beneficial for clinicians and caregivers in assessing usefulness of interventions. Physicians should continue to weigh the benefits and burdens of each type of therapy with caregivers and when possible, with the patient. Consider discontinuing those medications and therapies that no longer provide clinical benefit.
Common Issues: Feeding
Feeding as a caring behavior has very important meaning in our society. When a patient with dementia refuses to eat or aspirates while eating, it often leads to significant patient and caregiver distress. Initial feeding problems such as refusal to eat or inability to perform the complex tasks involved in cooking can be overcome by simple measures such as relaxing the rules of a strict dietâ&#x20AC;&#x201D;i.e. allowing a patient with coexisting diabetes and dementia to have some flexibility in their intake of sweets, and bringing prepared meals to those who cannot cook for themselves. Within the end stages of dementia, most patients with dementia will come to a point where they aspirate whenever they eat. Too often, this leads to patients receiving artificial nutrition. While it may be comforting to a caregiver to see their loved one receive nourishment, and convenient for physicians to utilize feeding tubes as ways to give medications, artificial methods of feeding are not without drawbacks, including patient discomfort and a potential source for infection. In the setting of dementia, the available evidence does not support the use of feeding tubes as a means of prolonging life, preventing aspiration, healing wounds, or providing comfort.16,17,18 Despite this, physicians continue to support the use of feeding tubes.19 About one-third of nursing home residents with advanced 24 Vol. 61, No. 4 2010 Northeast Florida Medicine
dementia have feeding tubes20, and aspiration often occurs after feeding tube placement.21 When swallowing difficulties, including aspiration, arise, adjusting to a puree diet, and the use of hand feeding is often an effective, albeit labor intensive way to provide nutrition, realizing that they will likely aspirate whether they are fed naturally or via artificial means. It is also important for caregivers to recognize that as with any illness, patients with dementia in their final days and weeks of life often have little interest in eating, and other caring behaviors such as reading to the patient or playing their favorite music, may be more appropriate than feeding. Artificial nutrition is a complex matter that is often emotionally charged, and most people have strong feelings either for or against it. It is up to physicians to anticipate this issue and initiate the conversation early in the disease course, allowing patients to make decisions regarding their future care.
Common Issues: Behavior
Behavioral issues in dementia patients are common, and often the most distressing symptoms of dementia to both patients and caregivers. Sleep disturbances, wandering, mood disorders including depression and anxiety, agitation, and psychosis are common among patients with dementia. Patients with frontotemporal dementia may exhibit personality changes and socially inappropriate behaviors, even before cognitive impairment is apparent.22 Rapid eye movement (REM) sleep disorders are particularly common in patients with Lewy body dementia, and treated with low doses of benzodiazepines Wandering and subsequently getting lost, is a feared consequence of dementia. Making a medical alert bracelet and placing contact information in jackets, purses, www . DCMS online . org
and wallets may be helpful should a patient get lost, and consistent supervision reduces the likelihood of wandering. Even patients in a supervised environment such as a skilled nursing facility may continue to wander inappropriately into other patients’ rooms or other locations. Gentle redirection, ensuring adequate exercise throughout the day, and placement of highly visible barriers may be beneficial in preventing further wandering behavior23. Patients with early stage dementia are often aware of their impaired memory, leading to frustration and depression with their situation. It is difficult to query a patient with more advanced dementia regarding their mood. Therefore, reliance on caregiver observations is critical, and consideration should be given to an empiric trial of antidepressant if indicated. Selective serotonin reuptake inhibitors are considered first line therapy for depression in patients with dementia, due to their general tolerability and effectiveness. Tricyclic antidepressants should be avoided due to anticholingergic side effects, which may cause a worsening in confusion. Agitation and psychosis are often hallmarks of moderate to severe dementia. Agitation, including aggression and irritability has a variety of potential causes including dementia itself, physical symptoms, acute medical illness, adverse medication effects, environmental issues, and mood disorders. An appropriate workup for reversible causes and treatment of the specific aforementioned underlying issue is the most effective treatment for agitation, i.e. addressing unmet pain with appropriate pain medications, or modifying the patients’ surrounding environment. The term psychosis encompasses hallucinations, paranoia and delusions. In contrast to other forms of dementia, psychosis is exhibited early on in patients with Lewy body dementia, and the occurrence of visual hallucinations is part of the diagnostic criteria for the disease.24 When agitation or psychosis is unrelenting or causing significant distress to the patient or caregiver, a trial of antipsychotic medication may be indicated after behavioral and non-medication strategies have been exhausted and targeted medication interventions have failed. Both typical and atypical antipsychotics show modest relief of symptoms in agitation and psychosis, with atypical antipsychotics preferred due to fewer movement disorder side effects.25,26 In 2005, the US Food and Drug Administration issued a black box warning on atypical antipsychotics due to increased risk of death in elderly patients from cardiac events and infections.27 Other adverse effects of atypical antipsychotics include cardiac abnormalities, such as prolongation of QT interval, weight gain, metabolic abnormalities including increased risk of diabetes, and somnolence. When considering a therapeutic trial of an antipsychotic to manage uncontrolled agitation or psychosis, it is important to discuss the risks and benefits with the patient if possible and caregiver and follow the therapeutic principle of “start low and go slow”, with frequent monitoring and consideration of discontinuation of therapy when feasible.23,28 It is important to note that Lewy body associated psychosis should not be treated with antipsychotics as it can cause worsening of movement symptoms and can lead to locked in syndrome and death, however www . DCMS online . org
the psychosis often improves with the use of cholinesterase inhibitor therapy.29
Conclusion
With an aging population, the prevalence of dementia is expected to increase, creating a unique set of challenges for patients, caregivers and healthcare providers. The goal of palliative medicine is to provide comfort for patients suffering from any terminal illness, including dementia. An individualized approach must be taken for each patient and family, keeping in mind the patient’s goals of care and quality of life at all times. Advanced care planning is particularly important for patients with dementia. By reviewing the natural progression of dementia, and anticipating common issues early in the disease process, physicians can help patients and caregivers navigate complex future decisions. 1.
References
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, fourth ed., text revision Arlington, VA: American Psychiatric Publishing Inc.; 2000.
2. Hebert LE, Scherr PA, Bienias JL, et al. Alzheimer’s disease in the U.S. population: Prevalance estimate using the 2000 census. Archives of Neurology. 2003;60:1119-1122. 3. 2009 Alzheimers disease facts and figures. Alzheimers association website. http://www.alz.org/national/ documents/report_alzfactsfigures2009.pdf.Accessed 6/25/10. 4.
Heron MP, Hoyert DL, Murphy SL, et al. Deaths: Final data for 2006. National Vital Statistics Reports Vol. 57, No. 14. Hyattsville, Md.: National Center for Health Statistics, 2009.
5.
Morrison RS, Siu AL. Survival in end-stage dementia following acute illness. JAMA 2000; 284: 47-52.
6. Wolfson C, Wolfson DB, Asgharian M, et al. A reevaluation of the duration of survival after the onset of dementia. N Engl J Med 2001; 344:1111-1116. 7.
Walsh JS, Welch HG, Larson EB. Survival of outpatients with Alzheimer-type dementia. Ann Intern Med 1990; 113:429434.
8.
National Hospice Organization. NHPCO’s Guidelines for determining prognosis in selected non-cancer diseases. 2nd ed;NHPCO, Alexandria, VA.1997.
9.
Reisberg B. Functional Assessment Staging ( FAST). Psychopharmacol Bull 1988; 24:653-659.
10. Schonwetter RS, Han B, Small BJ, et al. Predictors of sixmonth survival among patients with dementia: an evaluation of hospice Medicare guidelines. Am J Hosp Palliat Care. 2003; 20:105-113. 11. Mitchell SL, Kiely DK, Hamel MB, et al. Estimating prognosis for nursing home residents with advanced dementia. JAMA 2004; 291:2734-2740. 12. National Hospice and Palliative Care Organization Facts and Figures: Hospice Care in America, 2009 edition. www. nhpco.org Accessed 6/25/10. 13. Engel SE, Keily DK, Mitchel SL. Satisfaction with
Northeast Florida Medicine Vol. 61, No. 4 2010 25
end-of-life care for nursing home residents with advanced dementia. JAGS 2006; 54:1567-1572. 14. Shega JW, Ellner L, Lau DT, Maxwell TL. Cholinesterase inhibitor and N-methyl-D-aspartic acid receptor antagonist use in older adults with end-stage dementia: a survey of hospice medical directors. J Palliat Med 2009; 12:779783. 15. Holmes HM, Sachs GA, Shega JW, et al. Integrating Palliative Medicine into the care of persons with advanced dementia: Identifying appropriate medication use. JAGS 2008; 56:13061311. 16. Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA 1999; 282: 1365-1370. 17. Gillick MR. Rethinking the role of tube feeding in persons with advanced dementia. N Engl J Med 2000; 342:206210. 18. Meier DE, Ahronheim JC, Morris J, et al. High short-term mortality in hospitalized patients with advanced dementia: lack of benefit of tube feeding. Arch Intern Med 2001; 161:594-599. 19. Hanson L, Garrett JM, Lewis C, et al. Physicians expectations of benefit from tube feeding. J Palliat Med 2008; 11:11301134.
In a MEDICaL MaLPRaCTICE CLaIM: Be ready for anything and everything.
20. Mitchell SL, Teno JM, Roy J et al. Clinical and organizational factors associated with feeding tube use among nursing home residents with advanced cognitive impairment. JAMA 2003; 290:73-80. 21. Finucane T, Bynum J. Use of tube feeding to prevent aspiration pneumonia. Lancet 1996; 348:1421-1424. 22. Grossman M. Frontotemporal dementia: a review. J Int Neuropsychol Soc 2002; 8: 566-583. 23. Omelan C. Approach to managing behavioral disturbances in dementia. Can Fam Physician 2006; 52:191-199. 24. McKeith, IG,Dickson, DW, Lowe, J, et al. Diagnosis and management of dementia with Lewy bodies: third report of the DLB Consortium. Neurology 2005; 65:1863-1872.
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25. Schneiderman L, Tariot P, Dagerman K, et al. Effectiveness of atypical antipsychotic drugs in patients with Alzheimer’s disease. N Engl J Med 2006; 355:1525-1538. 26. Ballard C, Waite J, Birks J. Atypical antipsychotics for aggression and psychosis in Alzheimer’s disease. Cochrane Database Syst Rev 2006; 14:191-210. 27. US Food and Drug Administration: FDA Public Health Advisory: Deaths with antipsychotics in elderly patients with behavioral disturbances, April 11, 2005. Accessed June 28, 2010. http://www.fda.gov/Drugs/DrugSafety/ PublicHealthAdvisories/ucm053171.htm 28. Recupero PR, Rainey SE. Managing risk when considering the use of atypical antipsychotics for elderly patients with dementia-related psychosis. J Psychiatric Practice 2007; 13:143-152. 29. McKeith I, Del Ser T, Spano P, et al. Efficiacy of rivastigmine in dementia with Lewy bodies: a randomized, doubleblind, placebo controlled international study. Lancet 2000; 356:2031-2036.
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Elder Abuse
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The Duval County Medical Society (DCMS) attempts to provide its members with the benefits that consistently meet your professional needs. One example of how this is being accomplished is by providing to DCMS members free Continuing Medical Education (CME) opportunities in the subject areas mandated/and or suggested by the State of Florida Board of Medicine to obtain and retain medical licensure. The DCMS would like to thank the St. Vincent’s Healthcare (SVHC) Committee on CME for reviewing and accrediting this activity in compliance with the Accreditation Council on Continuing Medical Education (ACCME). Helena Karnani, MD, Chair of the CME Committee; Betsy Miller, Director, Medical Staff, Quality Management; and Cindy Williamson, CME Coordinator, from SVHC deserve special recognition for their work on behalf of DCMS. This issue of Northeast Florida Medicine includes an article, “Elder Abuse” authored by Kay M. Mitchell, MD (see pp. 29-33), which has been approved for 1.0 AMA PRA Category 1 credit(s).™ For a full description of CME requirements for Florida physicians (MD/ DO), please visit the DCMS website (http://www.dcmsonline.org/cme_requirements.aspx).
Faculty/Credentials: Kay M. Mitchell, MD, FACP, is an Assistant Professor of Medicine, College of Medicine, Mayo Clinic and serves as Consultant, Division of Community Internal Medicine, Department of Internal Medicine, Mayo Clinic, Jacksonville, FL. Dr. Mitchell received her MD degree from the Medical College of Georgia, internship and residency in internal medicine at University Hospital, University of Florida Health Science Center. She has additional training in enhancing geriatic care. Objectives for CME Journal Article 1. Identify and understand what is elder abuse 2. Be aware of the legal obligations 3. Know how to recognize signs of abuse
Date of Release: December 6, 2010 Date Credit Expires: December 6, 2012 Estimated time to complete: 1 hr.
Methods of Physician Participation in the Learning Process
1. Read the “Mitigating the H1N1 Pandemic: A Year in Review: article on pages 29-33 2. Complete the Post Test and Evaluation on page 28 3. Cut out & fax the Post Test and Evaluation to DCMS (FAX) 904-353-5848 OR members go to www.dcmsonline.org & submit test online
CME Credit Eligibility
In order to receive full credit for this activity, a minimum passing grade of 70% must be achieved. Only one re-take opportunity will be granted if a passing score is not made on the first attempt. DCMS members and non-members have one year to submit the post test and earn CME credit. A certificate of credit/completion will be emailed, faxed or USPS mailed within 4-6 weeks of submission. If you have any questions, please contact the DCMS at 355-6561, ext. 103, or llegacy@dcmsonline.org.
Faculty Disclosure Information
Dr. Mitchell reports no significant relationships to disclose, financial or otherwise with any commercial supporter or product manufacturer associated with this activity.
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St. Vincent’s Healthcare (SVHC) requires speakers, faculty, CME Committee, and other individuals who are in a position to control the content of this educational activity to disclose any real or apparent conflict of interest they may have as related to the content of this activity. All identified conflicts of interest are thoroughly evaluated by SVHC for fair balance, scientific objectivity of studies mentioned in the presentation and educational materials used as basis for content, and appropriateness of patient care recommendations.
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This activity has been planned and implemented in accordance with the Essential Areas and policies of the Accreditation Council for Continuing Medical Education through the joint sponsorship of St. Vincent’s Healthcare and the Duval County Medical Society. St. Vincent’s Healthcare is accredited by the Florida Medical Association to provide continuing medical education for physicians. The St. Vincent’s Healthcare designates this educational activity for a maximum of 1.0 AMA PRA Category 1 credit(s) .TM Physicians should only claim credit commensurate with the extend of their participation in the activity.
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Northeast Florida Medicine Vol. 61, No. 4 2010 27
Elder Abuse CME Questions & Answers (Circle Correct Answer)
Free-DCMS Members/$50.00 charge non-members* (Return by September 3, 2011 by FAX: 904-353-5848, by mail: 555 Bishopgate Lane, Jacksonville, FL 32204 OR online: www.dcmsonline.org) 1. 2.
Elder abuse may present in physical, emotional, financial, sexual, neglect, exploitation, and self-neglect ways. a. True b. False
6. When reporting possible abuse to the central abuse hotline in Florida, you do not need the victim’s relationship to the alleged abuser. a. True b. False
Elder abuse, first studied and published in the United Kingdom, was called old folks battering. a. True b. False
7. Reporting elder abuse to authorities is confidential. a. True b. False
3. Financial abuse of the elderly usually occurs with those elderly who live with others. a. True b. False
8. According to statistics presented, 2.5-3 million elderly persons are abused each year in the USA. a. True b. False
4. While screening a patient for possible abuse, it is okay to ask “Is your home safe?” a. True b. False
9.
5. One of the indicators of physical abuse of the elderly is traumatic alopecia or scalp swelling. a. True b. False
Caregiver behavior does not play a role in elder abuse. a. True b. False
10. Based on the number of elderly men vs elderly women, the rate of abuse is the same. a. True b. False
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Elder Abuse Kay M. Mitchell, MD Abstract: Elder self-neglect and abuse are serious, common and under recognized public health issues. Title XX of the Social Security Act, signed into law in 1975 mandated states to develop and maintain protective service agencies for those vulnerable adults. In 2004, the United States spent an estimated $500 million on these social services.29 However large gaps remain in understanding elder self-neglect and abuse. This paper seeks to explain elder abuse and its key causes.
Introduction
Elder abuse presents in many ways: physical, emotional, financial, sexual, neglect, exploitation, and self-neglect. In 1998, the U. S. Bureau of the Census identified 45 million individuals, 60 years or older, in the census. This did not include the “Baby Boomers”. In 2000 the Administration on Aging noted that persons aged 65 or older comprised approximately 13% of the population. It is predicted that by 2040, 20% of Americans will be 65 or older. The 2004 report of the National Center on Elder Abuse stated that 8.3 cases of abuse are reported for every 1000 elder Americans.30 This shift in demographics, raises many questions. Where will this large special population live, receive healthcare and get assistance? Who will be paying the bills? If our current record of caring for the older population holds true, the level of elder abuse will increase dramatically in the decades to come.1
Definition
What is elder abuse? There are many ideas about what constitutes elder abuse, but most authors define elder abuse in four categories: physical, emotional, financial and neglect.2,3,4 The National Aging Resource Center on Elder Abuse suggests that states should add self-neglect, sexual abuse and miscellaneous to the list.2 To expand the definition, physical abuse could include hitting, grabbing and slapping or causing bodily harm in many ways, including sexual abuse. Emotional abuse or psychological abuse can include verbal insults, humiliation and threats.2 Financial or material abuse includes theft, coercion or misappropriation of funds.2,4,5 Neglect is the failure of a caregiver to provide basic care for the individual with regard to the activities of daily living.2 Self-neglect is seen when an individual fails to care for him or herself or threatens their own health.2.6 Sexual abuse is intimate contact that is nonconsensual.2,6 Miscellaneous abuse can include exploitation in many forms. The American Medical Association’s definition of elder abuse states, “Abuse shall mean an act or omission which results in harm or threatened harm to the health or welfare of an elderly person. Abuse includes intentional infliction of physical or mental injury, sexual abuse or withholding of necessary food, clothing and medical care to treat the physical Address Correspondence to: Kay Mitchell, MD, FACP, Consultant and Assistant Professor of Medicine, Mayo Clinic Florida, 4500 San Pablo Rd., Jacksonville, FL 32224. Email: Mitchell.kay@ mayo.edu. www . DCMS online . org
and mental health needs of an elderly person by one having the care, custody or responsibility of an elder person.”5,7
History of Elder Abuse
Elder abuse is not a new phenomenon, but significant study and research in this area has been somewhat limited up until the last 30 years or so. In the early 1970s in the United Kingdom there were early reports of elder abuse. The phenomenon was reported as “granny battering”.2,3 Soon afterwards, small case-control studies in the United States confirmed that the problem was present in the United States as well. Since that time much work has been done to highlight and target the issue of elder abuse. The timeline below provides an abbreviated historical outline of the awareness of Elder abuse in the United States. • 1957-Macmillam and Shaw described self-neglecting behaviors in elders admitted to Bellevue Hospital.31 • 1970s-Blenkner published landmark paper on outcomes for elder adults who received adult protective services. The findings were surprising and reflected that “older protective services clients were disproportionately likely to die.”8 • 1970s-US Senate Special Committee on Aging issues a series of reports on abuse and neglect in nursing homes. • 1981-US House of Representatives Select Committee on Aging holds hearings for testimony of victimized elders • 1986-Institute of Medicine publishes recommendations for preventing mistreatment in institutions. • 1986-New Haven established Population for Epidemiologic Studies in the Elderly (EPESE) study9. • 1990-Secretary of US Department of Health and Human Services creates the Elder Abuse Task force. • 1991-National Institute on Elder Abuse is established as part of the Administration on Aging’s Elder Care Campaign. • 1992-the Joint Commission on Accreditation of Healthcare Organizations develops standard for emergency departments for improved identification and management of elder abuse. • 1998-National Elder Abuse Incidence Study was published.10
The National Elder Abuse Incidence Study estimated that 450,000 older persons were abused and/or neglected. A person known to the victim perpetrated 90% of the cases. Of the known perpetrators, two-thirds were adult children or Northeast Florida Medicine Vol. 61, No. 4 2010 29
spouses. Each year 2.5-3 million elderly are victims of abuse in the United States. Mistreatment of the elderly occurs in 3-10% of the older population.
Causes of Elder Abuse
Theories on the cause of elder abuse have been openly discussed for over 25 years, but there has been minimal progress to support or refute those ideas. Current literature supports consideration of the following theories for elder abuse:2,4 Situational theory – an overburdened caregiver who cannot keep up with caregiver demands, creates an environment for abuse. Exchange theory – dependencies between the elder and the abuser related to tactics and responses in family life that have been established for many years. Social learning theory – abuse as a learned behavior influenced by behavior in one’s environment. Political economic theory – challenges faced by elders once they lose their role and become dependent on others. Psychopathology of the caregiver theory – role of the caregiver with a mental health problem and how it puts the elder at risk for abuse. Many studies in the past decade have noted, that if the caregiver was in charge of an aggressive demented individual, 5% of the caregivers were violent toward the demented patient. Caregiver violence is also increased by actions of the demented individual such as wandering, embarrassing actions and verbal outbursts. Abuse by caregivers was increased by patient violence or by the caregiver being older or being the spouse. A survey of adult protective services showed a higher per capita reporting rate in urban states, which suggests that population setting or location is a risk factor for abuse.11 A publication in 2000 by Schonfeld et al, at the University of South Florida, studied the relationship between elder mistreatment and substance abuse.12 Even though there are many theories on the cause of elder abuse, the classic example is “caregiver stress.” This hypothesis is based on a “generation inversion” in which the elder becomes dependent on the caregiver for physical, emotional and financial needs.2,13 Over time, the caregiver becomes overburdened and resentful and eventually abuses the elder in some manner or withholds basic necessities. Studies show that financial and emotional dependence of the caregiver on the patient causes more abuse than when the elder becomes dependent on the caregiver. Dependence of the caregiver on the elder is often times due to problems of the caregiver such as alcoholism, psychiatric disease, legal problems and deviant behaviors. Elder abuse occurs among men and women of all racial, ethnic and socioeconomic groups. It is not correlated with religion, education and economic background.2,11,14 Women are classically thought to be the most common victim of abuse, but many studies found no sex-related differences.2,14,15,16 30 Vol. 61, No. 4 2010 Northeast Florida Medicine
Abuse of elderly women is probably more often reported because the severity of injury is usually worse than that in men. Studies suggest that because there are fewer older men than women, the actual frequencies of male abuse are probably about the same. Community based studies show that living with someone increases the risk of abuse, but this is not found among reported cases. Financial exploitation occurs more often in those who live alone. Verbal and physical abuse occurs more often in elders living with someone. Physical and mental health and the functional capacity of the elderly are risk factors for abuse. Elder abuse is rarely spontaneous, and it gets worse and worse over time.
Recognizing and Reporting
Recognizing and reporting elder abuse by physicians is critical, but many physicians do not recognize or report abuse even though they are in a position to do so. Several studies have shown that home health workers or personal care workers are more likely than physicians to report abuse. A 5-year study in Michigan reviewing suspected elder abuse revealed that 41% of the cases were reported by people in the community, 26% were reported by non-physician health care providers, 25% by social and mental health workers, 5% by law enforcement officials, and only 2% by physicians.17 In a study of Alabama physicians and nurses, less than half were aware of the standard procedures for dealing with elder abuse.32 Elderly victims regularly use the healthcare system, and they may seek medical treatment for physical injuries and psychosomatic complaints; therefore, physicians are in a unique position to identify elder abuse, intervene and provide appropriate referrals. Even though states have mandatory reporting, physicians do not report most suspected cases. A survey conducted in 2006 of residency program directors, indicated that elder abuse is not a consistent or highly prioritized topic in many primary care residency programs.33 What are the barriers to reporting? Many physicians are afraid, unaware or unwilling to become involved.2,4 Many say there are no consistent definitions of elder abuse. Florida law clearly outlines the definition in Section 825.102. The Florida Statutes state, “abuse of an elderly person or disabled adult means: intentional infliction of physical or psychological injury upon an elderly person or disabled adult; an intentional act that could reasonably be expected to result in physical or psychological injury to an elderly person or disabled adult; or active encouragement of any person to commit an act that results or could reasonably be expected to result in physical or psychological injury to an elderly person or disabled adult.”18 In addition, Florida law mandates, “aggravated abuse of an elderly person or disabled adult occurs when a person commits aggravated battery on an elderly person or disabled adult; willfully tortures, maliciously punishes, or willfully and unlawfully cages an elderly person or disabled adult; or knowingly or willfully abuses an elderly person or disabled adult and in so doing causes great bodily harm, permanent disability or permanent disfigurement to the elderly person or disabled adult.”19 Any person who is suspected of having committed abuse or aggravated abuse of an elderly person www . DCMS online . org
as defined in section 825.102 can be charged with a crime under Florida law.20 Other reasons physicians may not recognize or report elder abuse include a lack of familiarity of available resources for help, fear of time constraints with involvement, fear of offending the patients, lack of training, and unfamiliarity of laws that mandate reporting. The victims of abuse often encounter barriers preventing them from reporting abuse as well. Those barriers can include not recognizing maltreatment, embarrassment at reporting abuse, unawareness of resources and often a sense of guilt because they believe they are the cause.
Screening Tools
There are numerous protocols to aid the physician in identifying abuse. The presence of any of the following factors should heighten a physician’s suspicion of elder abuse: absent caregivers, unexplained injuries, missed appointments, doctor shopping, occult fractures and inconsistent histories between the patient and the spouse or caregiver. All physicians should incorporate routine questions to identify abuse in their practices. This may be in the form of questions, a list or a form for the patient to complete. An example of a list that could be used is shown in Table 1. Patients and caregivers should always be interviewed together and separately. If screening suggests abuse, the physician should conduct a thorough exam of the patient in a setting absent the spouse or caregiver. Some physical indicators of abuse are seen in Table 2, p.32).
Florida Statutes on Elder Abuse
The goal of physicians and other healthcare personnel in Florida is to recognize abuse, intervene and provide treatment and referrals, and to report to the state officials. Section 456.031 of the 2005 Florida Statutes requires physicians, nurses, dentists, midwifes, psychologists, clinical social workers, marriage and family therapists and mental health counselors to have continuing education regarding domestic violence, which includes elder abuse.21 Although Florida Law does not require mandatory domestic violence reporting, there are special reporting provisions that mandate reporting of “abuse, neglect, or exploitation” of vulnerable adults who are most often the elderly. These laws can be found in Chapter 415 of the Florida Statutes, also known as the “Adult Protective Services Act,” which was enacted to protect citizens, who because of age or disability are in need of protective services.22 Florida Law defines a “vulnerable adult” as a person 18 years of age or older whose ability to perform the normal activities of daily living or provide for their own care or protection is impaired due to a mental, emotional, long-term disability or dysfunction, or brain damage or the infirmities of aging.22 Physicians and other health care providers must immediately report actual or suspected abuse, neglect, or exploitation of vulnerable adults to the central abuse hotline.23 Failure to report may subject a physician to disciplinary action.24 In www . DCMS online . org
addition to physicians and other health professionals, law enforcement officers and employees of the Department of Business and Professional Regulations must report as well. Employees of savings and loans, credit unions and banks must also report if they have reason to believe that there has been financial exploitation. This could include unauthorized taking of personal assets or the unauthorized sale of property; misappropriation, misuse or transfer of moneys; or the intentional or negligent failure to effectively use the vulnerable adult’s income and assets for the necessities of life.25 The Central Abuse Hotline is 1-800-96 ABUSE (1-800962-2873). When a report is called in, the provider should be prepared to provide the following information: • Victim’s name, address, approximate age, race and sex • Physical, mental, or behavioral indications that the person is infirm or disabled • Signs or indications of harm, injury or exploitation • Relationship of the alleged abuser to the victim
When reports are received, the hotline personnel will contact the appropriate protective investigative district staff
Table 1 Key Questions to Elict Information About Elder Abuse2* Physical Abuse Questions Such As: 1. Have you been struck, slapped or kicked? 2. Have you been tied down or locked in a room? Psychological Abuse Questions Such As: 1. Have you been threatened with punishment, deprivation, or institutionalization? 2. Have you received “the silent treatment”? 3. Do you receive news or information? 4. What happens when you and your caregiver disagree? Sexual Abuse Question – Has anyone touched you without your permission? Neglect Questions Such As: 1. Do you lack aids such as eyeglasses, hearing aids or false teeth? 2. Have you been left alone for long periods? 3. Has anyone failed to help you care for yourself when you needed assistance? Financial Abuse Questions Such As: 1. Is money stolen from you or used inappropriately? 2. Have you been forced to sign a power of attorney, will, or another document against your wishes? 3. Have you been forced to make purchases against your wishes? *Table modified
Northeast Florida Medicine Vol. 61, No. 4 2010 31
Table 2 Key Physical Indicators of Elder Abuse2* Physical Abuse Indicators Bruises, wounds, burns Rope or restraint marks on wrists or ankles Traumatic alopecia or scalp swelling Psychological Abuse Indicators Habit disorder such as sucking thumb or rocking back and forth Neurotic disorders such as being antisocial Conduct disorder Sexual Abuse Indicators Genital or anal pain, itching, bruising, or bleeding Venereal disease Torn pr stained underwear Neglect Indicators Dehydration or malnutrition Poor hygiene – looks unattended Inappropriate dress Extensive bedsores Urine burns and/or Fecal impaction
abuse and don’t report it. The “caregiver stress hypothesis” is a misconception as abuse is better correlated with emotional and financial dependence of the caregivers on the victims. Those caregivers who live with elderly persons are the ones who most often abuse them. The ratio of abuse of men and women is basically the same, although there are typically more women abused, due to the number of elderly women surviving. Doctors and other responsible individuals should assess, treat and report abuse with focus on the care of the abused as well as the abuser. Kennedy M. The Subtle and the Overt: Identifying Elder Abuse. WMJ 2000;10:11.
2.
Kleinschmidt, K.Elder Abuse: A Review. Ann Emerg Med. 1997; 30(4):463-72.
3.
Hazzard WR. Elder Abuse: Definitions and Implications for Medical Education. Academic Med. 1995; 70(11): 979.
4.
Aravanis SC, Adelman RD, Breckman R, et al. Diagnostic and Treatment Guidelines on Elder Abuse and Neglect. Arch Fam Med. 1993;2(4):372.
5.
Hall RC, Hall RC, Chapman MJ. Exploitation of the Elderly: Undue Influence as a Form of Elder Abuse. Clin Geriatr. 2005;13(11):28.
6.
Tatara T. Suggested State Guidelines for Gathering and Reporting Domestic Elder Abuse Statistics for Compiling National Data. Washington DC: National Aging Resource Center on Elder Abuse (NARCEA);1990.
7.
American Medical Association: Diagnostic and Treatment Guidelines on Elder Abuse. Chicago, IL: American Medical Association, 1992:4-37.
8.
Blenkner MA. A Research and Demonstration of Protective Services. Social Casework. 1977;52:483-497.
9.
Lachs MS, Williams CS, O’Brien S et al. Adult Protective Service Use and Nursing Home Placement. The Gerontologist. 2002;42:734-739.
*Table modified
office and an onsite protective investigation should be commenced within 24 hours.26 The state reporting agency will prioritize cases after initial investigation so emergency food and care, transportation, medical evaluation, relocation, legal assistance and other community based services can be appropriately provided. Florida law provides that reports of abuse are confidential and may not be disclosed without written consent by the person reporting ; although the individual may be subpoenaed to testify in a court proceeding regarding the investigation.27 In addition, the reporting physician is immune from any civil or criminal liability for making a good faith report of the suspected abuse.28
Summary
Elder abuse is painted in many colors: physical, emotional, financial, sexual, neglect, exploitation and self-neglect. Nationally, 2.5 million elders are abused each year. In July of 2000, the Florida Department of Elder Affairs reported that 1 in 4 Floridians is aged 65 or older and that each year more than 50,000 elders will move to the state to retire. Consequently, in 25 years there should be a 79% increase in the number of elders in Florida. Only about 10% of cases of elder abuse are reported nationally each year. Most states have mandatory reporting, but have little financial support for evaluation and protective services. Doctors are reluctant to report because of unfamiliarity of the laws, fear of offending patients or lack of education. Victims of abuse often blame themselves for the 32 Vol. 61, No. 4 2010 Northeast Florida Medicine
References
1.
10. U. S. Department of Health and Human Services. The National Center on Elder Abuse, American Public Human Services Association. The National Elder Abuse Incidence Study- final report. Washington, DC: Administration for Children and Families & Administration on Aging, 1998. 11. Tatara T. Summaries of National Elder Abuse Data: An Exploratory Study of State Statistics Based on a Survey of State Adult Protective Service and Aging Agencies. Washington DC: National Aging Resource Center on Elder Abuse. 1990. 12. Schonfeld L, VandeWeerd C, Berko L. The Relationship Between Elder Mistreatment and Substance Abuse. Project funded by State of Florida Department of Elder Affairs September, 2000. 13. Anetzberger GJ. Caregiving: Primary Cause of Elder Abuse? Generations 2000;24:46-51. 14. Pillemer K, Finkelhor D. The Prevalence of Elder Abuse: A Random Sample Survey. Gerontologist. 1988;28:51-57. 15. Lachs, MS, Berkman L, Fulmer T, et al. A Prospective Community-based Pilot Study of Risk Factors for the Investigation of Elder Mistreatment. J Am Geriatr Soc. 1994;42:169-173.
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16. Podnieks E. National Survey on Abuse of the Elderly in Canada. J Elder Abuse Neglect. 1992;4:5-58. 17. Rosenblatt DE, Cho KH, Durance PW. Reporting Mistreatment of Older Adults: The Role of Physicians. J Am Geriatr Soc 1996;44:65-70. 18. Florida Statutes, section 825.102(1)(2005). 19. Florida Statutes, section 825.102(2)(2005). 20. Florida Statutes, section 825.102(2005). 21. Florida Statutes, section 456.031(2005).
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22. Florida Statutes, section 415.102(26)(2005). 23. Florida Statutes, section 415.1034(1)(2005). 24. Florida Statutes, section 458.331(1)(h)(2005). 25. Florida Statutes, section 415.102(7)(2005). 26. Florida Statutes, sections 415.103(2),415.104(1)(2005). 27. Florida Statutes, section 415.107(6)(2005). 28. Florida Statutes, section 415.1036(1)(2005). 29. XinQi; Melissa Simon; Carlos Mendes de Leon; et al. Elderly self-neglect and Abuse and Mortality Risk in a CommunityDwelling Population. JAMA,2009;302(5):517-526. 30. Collins K. Elder Maltreatment, A Review. Arch Pathol Lab Med-Vol 130, September 2006;1290-1296. 31. Dyer, C B, Pickens, S, Burnett, J. JAMA, 2007; 298(12):14481450. 32. Cooper, C, Selwood, A, Livingston, G. Knowledge, Detection, and Reporting of Abuse by Health and Social Care Professionals: A Systematic Review. Am J Geriatr Psychiatry. 17:10, October 2009: 826-838.
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33. Elder Abuse Education in Residency Programs: How Well Are We Doing? Academy of Medicine. Vol, 84, No 5/ May 2009:611-618.
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Northeast Florida Medicine Vol. 61, No. 4 2010 33
Hospice and Palliative Care: What is the Difference? Stephen J. Clark, MD Editor Note: To insure reproduction quality, Tables 1-3 have been put online at www.dcmsonline.org.
with other therapies that are intended to prolong life near the end of life.
Abstract Hospice care is a palliative approach with additional
A broader palliative care movement in the United States emerged in the 1990s with the recognition of the serious and typically unmet needs and suffering of patients and families with chronic, progressive life limiting illnesses in acute-care settings where curative treatment was still the optimal course. These needs overlap those experienced by patients with welladvanced, end-stage disease who are eligible for hospice care. Thus, palliative care addresses the concerns and suffering of patients with chronic, life-threatening illness and their families, at a time when hospice care is not possible, accessible or desired by patients.
Medicare restrictions of a prognosis of six months or less. It is when the patient agrees to palliative care, not curative treatment. Associated with these restrictions are guidelines for admission to hospice care, which are outlined. Admission to a hospice provider soon after a limited prognosis is determined helps improve patient satisfaction by enhancing communication, controlling physical symptoms, focusing on emotional domains and dignity, defining realistic goals and coping with the practical and financial issues of day-to-day living. Palliative care is a medical approach that addresses concerns and suffering of the patient with chronic, life-threatening illness and the family.
Introduction
The seeds for hospice care in the United States were planted through a series of lectures by Dame Cicely Saunders in 1971, which led to the first hospice to be established in New Haven, Connecticut that same year.5 With this movement growing to a critical mass, it became recognized nationally in 1978 with a trade organization focused on this healthcare practice area. Subsequently, there was considerable support from both legislators and government agencies to find a way for hospice to succeed. The result was the Medicare Hospice Benefit, which became law in 1982. As this and other regulations evolved, Medicare formalized hospice eligibility to center around attestation by two physicians that the patient’s terminal illness had a prognosis of six months or less. Palliative care is defined by the World Health Organization (WHO) as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems – physical, psychosocial and spiritual.”1 Palliative care started with a few North American and European clinicians in the 1940s who began to show interest in whole-person care related to advanced illness. This movement continued its momentum with John Bonica’s textbook of pain medicine, published in 1953,2 and his hosting of the first international pain meeting in 1973.3 Eventually, the movement became so popular that the WHO endorsed the definition of “palliative care” created by a group of world leaders in 19894. This definition deals with relief of pain and suffering associated with advanced disease in conjunction Address Correspondence to: Stephen J. Clark, MD, Chief Medical Officer, Community Hospice of Northeast Florida, 4266 Sunbeam Rd., Jacksonville, FL 32257. Phone: (904) 407-6301. Email: sclark2@communityhospice.com. 34 Vol. 61, No. 4 2010 Northeast Florida Medicine
Hospice Care
Hospice care today limits eligibility, with its Medicare-based regulations for initial admission by requiring two physicians (one of whom must be a hospice physician) to attest that the terminal illness has a prognosis of six months or less. Also, patients are required to sign a Medicare Election Statement agreeing that they will not seek further curative or life-prolonging treatment. Given the biases and limitations of the art of physician prognostication,6 along with patient and family emotions related to the election statement confirming the six-month eligibility, admitting the patient for hospice care can be a significant medical and emotional challenge. From the medical perspective, the ability to accurately prognosticate survival is limited. In the mid-1990s, the National Hospice Organization published guidelines for determining life expectancy for cancer and several non-cancer disease states to give hospices and physicians a basic means of screening patients. (Table 17, www.dcmsonline.org) Medicare converted these guidelines into policies, also called “Local Medical Determinations” (LCDs) for payment of hospice services. Other studies have sought ways of estimating survival. Various clinical indicators have been identified, but the most consistent and reliable clinical indicators of a poor prognosis are multiple comorbidities, involuntary weight loss of 10% or greater, a general physical decline, and a Karnofsky Scale score of 50% or less. (Table 28, www.dcmsonline.org) The Karnofsky Performance Status (KPS) Scale was developed in the late 1940s to assess the effects of chemotherapy on functional levels. Since then, performance status has been recognized as a predictor of oncology outcomes, including survival. The National Hospice Study (USA)9 demonstrated that the KPS score accounted for only a small amount of the variability in survival, but it was highly statistically significant. In terms of the study, each increase in KPS level (e.g., from 10 to 20) accounted for approximately two weeks of the remaining life span. Further validation studies on oncology www . DCMS online . org
outcomes have shown that clinician predictions of survival correlate with the KPS scores.
issues, such as a fall resulting in a fractured hip, are still covered by Medicare in the usual acute-care methodology.
Palliative Care
Summary
In 1996, Canadian physicians introduced the Palliative Performance Scale (PPS) to address the limitation of wording in the KPS Scale and to add categories for oral intake and consciousness level.(Table 310, www.dcmsonline.org) As in the KPS validation studies, the PPS was shown to be a strong predictor of survival. Incorporating the clinical indicators of multiple comorbidities, weight loss and general physical decline, the LCDs, KPS and PPS not only meet the requirements for Medicare admission eligibility for hospice care, but give the clinician a reasonable methodology to develop a prognosis for patients. Even with these prognostic tools, in the setting of far advanced refractory cancer or non-cancer illness, one of the most challenging aspects of the clinician’s role is to help patients and families deal with the transition to care that is increasingly focused on palliation rather than disease modification.11 It is crucial that physicians help patients and families find ways to reframe hope, as well as giving them honest information about their disease.12
Choosing a Medical Approach
Qualitative data derived from interviews of patients indicated several hope-enhancing themes: 12 1) emphasis on what can be done related to physical symptoms, emotional symptoms, care, dignity and practical support; 2) defining realistic goals; and 3) how to cope with day-to-day living. An early referral to the palliative care team (if disease modification, life-prolonging treatment is still being pursued) or to the hospice team gives the clinician as well as patients and families a support system that facilitates communication, hope and relief of suffering. With the hospice interdisciplinary team (comprised of physicians, nurses, home health aides, psychosocial specialists and chaplains) that supports each patient and coordinates the care with the patient’s physician, the patient care plan will be continuous, comprehensive and coordinated. It will ensure less pain and suffering and provide more intensive emotional support. There will be greater dignity and the opportunity to make the best of every day. The whole person’s care is the emphasis, instead of the disease. Along with providing patients and families with more time and support in the transition from disease modification treatment to palliative care, an early hospice referral has a practical and financial benefit for patients and families. Due to the payment regulations of Medicare, hospice patients do not get billed for any care support associated with the primary diagnosis that certified the six-month prognosis. Such items as medicines, durable medical equipment and other needs such as colostomy supplies, and oxygen are paid for and available due to the Medicare Hospice Benefit. Non-associated medical www . DCMS online . org
2010 Palliative Medicine.indd 35
The unmet needs and suffering of patients and their families facing a chronic, progressive illness that is life-threatening can be met by the clinician during the whole spectrum of the disease by using the well-established, clinically based tools of prognostication and early referrals to the support systems of palliative care teams, either in the acute-care setting, or hospice teams near the end of life that provide whole-person care responding to the patient and family’s physical, psychological, social and spiritual needs. 1.
References
World Health Organization [Internet]. http://www.who. int/cancer/palliative/definition/en/. Accessed August 28, 2010. 2. Bonica J. The management of pain: with special emphasis on the use of analgesic block in diagnosis, prognosis and therapy. London: Henry Kimpton; 1953. 3. Seymour J, Clark D, Winslow, M. Pain and palliative care: the emergence of new specialties. J Pain Symptom Manage. 2005;29:2–13. 4. Cancer Pain Relief and Palliative Care. Geneva, Switzerland: World Health Organization; 1990,Technical Report Series 804. 5. Conner SR. Hospice Practices, Pitfalls, and Promises. Washington: Taylor and Francis; 1998, p.5. 6. Weissman A, Hackett R. Denial as a social act in Psychodynamic studies on aging: creativity, reminiscing, and dying. (eds. S. Levin, and R.J. Kahana). New York: International Universities Press; 1967; pp. 79-110. 7. Maxwell T, Martinez J, Knight C. The hospice and palliative medicine approach to life-limiting illness in Hospice and palliative care training for physicians: a self study program. 3rd ed. Glenview, IL. American Academy of Hospice and Palliative Care; 2008. (Table 13, Summary of NHPCO guidelines for determining prognosis) p. 30. 8. Karnofsky DA, Burchenal JH. “The clinical evaluation of chemotherapeutic agents in cancer” in MacLeod, CM, ed. Evaluation of chemotherapeutic agents. New York: Columbia University Press; 1949, p. 196. 9. Mor V, Labiberte L, Morris J, et al. The Karnofsky performance scale, an examination of its reliability and validity in a research setting. Cancer. 1984;53(9):20027. 10. Palliative Performance Scale (PPSv2), version 2. Victoria, BC, Victoria Hospice Society. 2001. 11. Schofield P, Carey M, Love A, et al. “Would you like to talk about your future treatment options?” discussing the transition from curative cancer treatment to palliative care. Palliat Med. 2006;20(4):397-406. 12. Clayton J, Butow P, Arnold R, et al. Fostering, coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers. Cancer. 2005;108(9):1965-75.
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Special Feature: Pediatric Perspective
Pediatrics: The Role of Palliative Medicine Kelly Cronin Komatz, MD, MPH Introduction
Pediatric palliative care is both a philosophy and an organized method to deliver holistic patient-and family-centered care to children with life-limiting medical conditions. The palliative approach to care focuses on enhancing the quality of life for the child and their caregivers through a multidisciplinary approach. Palliative care is delivered across the continuum of care-settings and throughout the disease trajectory including end of life and bereavement care. Palliative care seeks to manage symptoms and relieve physical and emotional suffering while treatment is ongoing for the chronic medical condition. The objectives for this article are to: 1) Discuss the emerging specialty of pediatric palliative care and demonstrate inherent differences between pediatric and adult delivery models; 2) Identify and describe the role of the multi-disciplinary approach to palliative care for children living with life-limiting conditions; and 3) Identify appropriate pediatric patients for referrals to a pediatric palliative care program.
Pediatric Palliative Care Explained
Pediatric palliative care provides medical and psychosocial support to children and families facing life-limiting and lifethreatening illnesses that significantly impact the quality of life for the child and their caregivers. Palliative care seeks to manage symptoms and relieve physical and emotional suffering while treating a chronic medical condition. Unique to providing pediatric palliative care is treating the child as part of an extended family including: siblings, friends, school and the greater community where the child lives. The multi-disciplinary team support includes: pain and symptom management; nursing assessments; psychological, social, developmental and educational goals; chaplaincy support to assist with personal, cultural, religious beliefs and practices; and child life specialist to assist with age appropriate interventions including play therapy, bibliotherapy and memory making for the patient and siblings. Bibliotherapy is the guided use of selected books as an adjunct to a specific theme such as anxiety, a new diagnosis, etc. allowing for self-expression and coping skills. Unique features of pediatric palliative care include: the offering holistic care for the child, supporting the caregivers, siblings and extended family, providing timely and accurate information to support the child and caregivers in decisionmaking and assisting in the development of a plan of care Address correspondence to: Kelly Komatz, MD, MPH, FAAP, Assistant Professor Department of Pediatrics, University of Florida, 653-1 W. 8th Street, Jacksonville, FL 32209. Phone: 904-407-6868. Email:kelly.komatz@jax.ufl.edu. 36 Vol. 61, No. 4 2010 Northeast Florida Medicine
or treatment options that are both patient- and familyfocused. The causes of chronic childhood illnesses have changed dramatically over the past few decades. The medical community is now faced with a new set of challenges as children are living longer through the advancements in medical technology. These advances, while allowing for life prolongation, come with unique situations and decision-making dilemmas for families and physicians. Gastrostomy tube feedings delivered via pumps, tracheotomies allowing for home ventilators, implantation of ventriculoperitoneal shunts, baclofen pumps, total parental nutrition, implantation of long-term central lines, to name a few. Pediatricians and family practitioners must be prepared to meet the medical needs of these chronically ill and medically complex children. Hospitals need to provide an interdisciplinary team approach in caring for these children ensuring uninterrupted linkages to community-based resources including: home-health agencies for nursing and equipment needs, schools, ongoing therapies directed at rehabilitation and/or palliation of further disease progression. Common diagnoses treated through a pediatric palliative care program include, but are not limited to: congenital anomalies including brain malformations (lissencephaly), chromosomal anomalies, heart defects; hypoxic-ischemic encephalopathy; neuromuscular disorders including muscular dystrophies, spastic cerebral palsy; metabolic disorders related to mitochondrial disease spectrums; and cancers. Palliative care is delivered alongside curative treatment (although feasible for cure might still fail;) bringing the hospice philosophy of quality of life and symptom management to the patient and family. Traditional hospice usually does not allow for curative therapies once the hospice benefit is elected. Palliative care does not make the family chose an â&#x20AC;&#x153;either/orâ&#x20AC;?, which is especially important to pediatric patients where curative therapies are commonly sought after for the patient. In situations where early death is inevitable, the patient might receive intensive treatment aimed at prolonging life but also caregivers might concentrate on maintaining quality of life. Such efforts would not be made in progressive conditions with no curative treatment options. In this scenario, quality of life and comfort are the focus of patient care.
Multi-Disciplinary Team Approach
A multi-disciplinary team is inherent to the practice of palliative medicine. The representative disciplines include, but are not limited to: medical doctor, nurses, social workers, chaplains, volunteers, home-health aides, and for pediatrics, a child life specialist. These individuals must be comfortable www . DCMS online . org
with those discussions that no one else likes to have: impending death, accepting decisions made by parents to forgo further interventions and/or hospitalizations and then concentrating on comfort care and just being present. The multi-disciplinary team support includes: pain and symptom management; nursing assessments; psychological, social, developmental, and educational goals; chaplaincy support to assist with personal, cultural, religious beliefs and practices; and a child life specialist to assist with age appropriate interventions for the patient as well as siblings. Pediatric palliative care unique features include: the holistic care for the child, supporting the caregivers, siblings and extended family, providing timely and accurate information to support the child and caregivers in decision-making and assisting in the development of a plan of care that is patient- and family-focused.
Pediatric Palliative Care Resources
Palliative care is delivered across the trajectory of the disease process as well as across care-settings. There are few communities within the United States that have comprehensive programs which are both inpatient and outpatient. In addition, few focus on caring for the pediatric patient. Northeast Florida has the unique distinction of being able to provide pediatric palliative care across the continuum of care for the child and their family. Through the collaborative efforts of Community Hospice of Northeast Florida, Wolfson Children’s Hospital, Nemours Children’s Clinic and the University of Florida-Jacksonville College of Medicine, children living with life-limiting and life-threatening medical conditions have access to a dedicated staff of pediatric professionals. Community PedsCare is a pediatric program of Community Hospice of Northeast Florida that provides palliative and hospice care to children and their families living in the five counties of Northeast Florida: Baker, Clay, Duval, Nassau and St. John’s. The Community PedsCare staff serves the patient and his/her family at home, as well as in the inpatient setting. The Quality in Life Team (QUILT) offers pediatric inpatients at Wolfson Children’s Hospital and Shands Jacksonville palliative care through a consult service focusing on pain management as well as palliative goals of care and treatment options. Furthermore, prenatal palliative care is available for families when they receive a prenatal diagnosis of a life-limiting condition while pregnant. Through this service, a birthing plan is developed with the family and shared with the staff at the hospital where the infant will be delivered.
Case Scenario
Grace was diagnosed shortly after birth with a progressive central nervous system disease called Batten Disease, a neuronal ceroid lipofuscinoses disorder. Her brother, who was two years older, was also affected with the disease. Their pediatrician referred the siblings and family to the pediatric palliative care team for support to the affected children and the family including other unaffected siblings. The brother experienced a sudden death at home during a prolonged seizure. The family www . DCMS online . org
was supported by the palliative care team at this difficult time. Grace continued to receive on-going care from the pediatric palliative care team in the family’s home. Grace did well with her Batten Disease for about one year following her brother’s death. She then started to experience signs and symptoms of further decline due to her disease. Her symptoms included: increased irritability and agitation especially related to her activities of daily living, less responsiveness to family and her home health nurse, and decreased ability to take fluids by mouth. The pediatric palliative care team was visiting on a regular schedule of once every other month, but after Grace started to experience these symptoms, the home visits were changed to monthly. Grace’s family utilized all palliative care team members including: physician, nurse, social worker, and chaplain, as well as the child life specialist. The primary pediatrician consulted the palliative care physician for pain and symptom management allowing for home visits to be made as necessary to assess Grace without having her make office visits. The palliative care nurse would review on a regular basis Grace’s medications, her symptom control and collaborate with Grace’s home health agency nurse, as well as the primary and palliative care physicians. The social worker assisted in obtaining equipment necessary to keep Grace at home and comfortable and offered support to the family and older siblings. The child life specialist was able to do play therapy and bibliotherapy with the siblings to assist with understanding of Grace’s decline. The chaplain offered extra support to the family in their home even though the family had a religious home. Over the course of time, Grace continued to experience difficulty with tolerating her gastrostomy tube feedings, had increased agitation and pain during daily living activities and was even less responsive. The family met with the pediatric palliative team members at their home (including the physician, nurse, social worker and the home health nurse.) A home “Do Not Resuscitate Order” was renewed and treatment was focused on comfort measures only. Grace passed away peacefully in her own bed surrounded by her family members and palliative care team.
Conclusion
Pediatric Palliative care is a rapidly expanding field as medical advances continue to increase the life expectancies of children with complex chronic medical conditions. Families welcome the additional support while walking the path of decision making related to life prolonging interventions. Early referral to palliative care is paramount to allow for relationship building during the journey with the patient and family. Good resources to contact are: 1) Community PedsCare Program, 4266 Sunbeam Road, Jacksonville, FL 32257. Phone: 904-407-7300 or www.communityhospice.com and 2) Pain and Palliative Care Consult Service (QUILT), Wolfson Children’s Hospital. Phone 904-202-8556.
Northeast Florida Medicine Vol. 61, No. 4 2010 37
Trends in Public Health
Sub-county Data Analysis in Public Health Radley C. Remo, MPH, Thomas Bryant III, MSW and Robert G. Harmon, MD, MPH Monitoring health status to identify and solve community health problems is an essential function of public health. Identifying public health issues and tracking their status should be evidence-based and data driven. Fortunately health data is typically reported and available at the national, state and county levels. This facilitates comparisons, but is not specific enough for local communities, especially those with large geographical areas and culturally diverse populations. County level data usually mask within county differences, making it difficult to identify issues specific to community subgroups. Duval County’s infant mortality rate is 9.4 deaths per 1,000 live births versus 7.2 for Florida. County level data do not indicate which sub-populations are most affected by infant mortality. Are there specific geographic areas with higher infant mortality rates than other areas? These limitations make surveillance and monitoring of essential pubic health services difficult at the county level. Sub-county data provide an alternative that addresses the issues associated with county data. Zip codes and the census tracts are two better known sub-county geographic units. Both offer a standard area of measure utilized across the U.S., facilitating opportunities for comparisons. Demographic, employment and income data make census tracts invaluable in understanding communities. Zip codes are useful with surveys and can be obtained on almost any topic. However, several caveats – statistical reliability, confidentiality and privacy – must be considered when using sub-county data. Data are statistically unreliable when the number of cases within a cell is too small. This renders percentages and rates undependable when reporting results. Population-based data, vital statistics or census, are not subject to sampling error but are subject to differences due to random variation versus actual differences in populations. This occurs when the number of events is small. Uncommon events occurring in small geographic areas threaten the confidentiality and privacy of individual records. For example, if two SIDS deaths occur in one zip code, it is possible for the families to be identified. The smaller the geographical unit or its population, the greater the odds of identifying people. Criteria have been established by the Centers for Disease Control and Prevention and the National Centers for Health Statistics (NCHS) for data suppression. NCHS considers units with cases fewer than 20 as statistically unreliable. As the public health research and evaluation entity for a large county with a culturally diverse population, the Institute for Public Health Informatics and Research (IPHIR), a division of the Duval County Health Department, addressed the 38 Vol. 61, No. 4 2010 Northeast Florida Medicine
issues of statistical unreliability and confidentiality. IPHIR staff developed six health zones based on the sub-county units of several agencies – City of Jacksonville’s Community Planning Advisory Committee, Jacksonville Sheriff’s Office and Duval County Public Schools. Each has established mechanisms for dividing Jacksonville into geographically functional areas. Health zones were created by aggregating and collapsing categories based on geographical locations, zip codes, historically defined areas, population size and social economic factors. Development of the sub-county units allows for robust analysis and helps with identifying areas in which to focus public health interventions. For example, prior to the development of health zones, when analyzing 2008 lung cancer data at the zip code level, 11 zip codes had enough cases to analyze. Conversely, 23 zip codes had too few cases, leaving a gap in reporting data. However, data analysis by health zones yielded statistically reliable data in all six zones. The use of health zones facilitates the visualization and mapping of geo-referenced public health information through geographic information systems (GIS). GIS plays a key role in monitoring the health status of Duval County, identifying and visually illustrating risk areas within the community. GIS allows public health staff to make the connection among community residents, health, and well-being and changing physical and social environments. Many sources of data are available at the sub-county level. Population data are available from the 2000 US Census or population estimates can be purchased from proprietary vendors. Health data are available from the Florida State Office of Vital Statistics (birth and death) or the Agency for Health Care Administration (hospitalization, ambulatory and emergency department). Cancer and Immunization registries are other sources of health data. Reportable diseases like sexually transmitted diseases and tuberculosis are available to the public in aggregate form. Requests for sub-county data may have to go through an Institutional Review Board (IRB) process to ensure the privacy and confidentiality of the data. Sub-county analysis is essential for surveillance and monitoring of Duval County’s public health status. Prioritization of health issues is vital for the development of strategic plans to ameliorate poor community health conditions. Health zones are invaluable tools for using public health data to identify health issues, high risk areas and disparities in health throughout Duval County. For more information regarding health data or mapping requests, contact Niketa Walawalkar, Coordinator, Center for Health Statistics, at (904) 253-2051.
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DCMS Membership Applications These physiciansâ&#x20AC;&#x2122; applications for membership in the Duval County Medical Society are now being processed. Any information or opinions you may have concerning the eligibility of the applicants listed here may be directed to Ashley Booth Norse, MD, DCMS Membership Committee Chair (904-244-4106 or Barbara Braddock, Membership Director (904-3556561 x107).
Petra E. Duran, MD Emergency Medicine UF Emergency Medicine 655 W. 8th St. Medical Degree: Louisiana State University Health Science Center Residency: University of Florida Health Science Center Nominated by: UFJP
Felix D. Banadera, MD Pediatrics/Neonatology UF Neonatology 655 W. 8th St. Medical Degree: Our Lady of Fatima University Internship/Residency: Philippine General Hospital Fellowship: Childrenâ&#x20AC;&#x2122;s Hospital of Michigan & William Beaumont Hospital Nominated by: UFJP
James M. Grimes, MD Orthopedic Surgery/Sports Medicine Orthopaedic Associates of St. Augustine 3055 CR 210W Unit 110 Medical Degree: Northeastern Ohio University College of Medicine Residency: University of Hawaii Integrated Orthopaedic Residency Training Program Nominated by: Rahul Deshmukh, MD; Richard Grimsley, MD; Steven Lancaster, MD
Zachary E. Brown, MD Diagnostic Radiology/Neuroradiology Drs. McClow, Clark & Berk PA 1912 Hamilton St. #201 Medical Degree: University of Florida College of Medicine Internship/Residency/Fellowship: University of Texas Southwestern Medical Center at Dallas Nominated by: Marc Freeman, MD; Anthony Toledo, MD; Donald Nies, MD Elizabeth Lee Burns, MD Family Medicine Mayo Clinic 110 Southwood Lake Drive, St. Augustine Medical Degree: University of Miami School of Medicine Residency: Mayo Clinic Jacksonville Nominated by: Floyd Willis, MD; Terry Hashey, DO; Sandra Argenio, MD Uday U. Deshmukh, MD Internal Medicine Blue Cross Blue Shield of Florida 4800 Deerwood Campus Pkwy. Bldg. 900 5th FL Medical Degree: Maulana Azad Medical College, India Residency: Mercy Catholic Medical Center Nominated by: Frank Santamaria, MD
Brian E. Haycook, MD Orthopedic Surgery Orthopaedic Associates of St. Augustine 3055 CR 210W Unit 110 Medical Degree: University of Miami School of Medicine Residency: Greenville Hospital System Nominated by: Patrick Burns, DO; Gregory Solis, MD; Frank Collier, Jr., MD Kurtis R. Hort, MD Orthopedic Surgery Orthopaedic Associates of St. Augustine 3055 CR 210W Unit 110 Medical Degree: Temple University School of Medicine Residency: University of Florida Health Science Center Fellowship: Mayo Clinic Jacksonville Nominated by: Patrick Burns, DO; Gregory Solis, MD; Gavan Duffy, MD Mateo Jurasic, MD Diagnostic Radiology/Cross Sectional Imaging Drs. McClow, Clark & Berk PA 1912 Hamilton St. #201 Medical Degree: University of Illinois College of Medicine Internship: MacNeal Hospital
40 Vol. 61, No. 4 2010 Northeast Florida Medicine
Residency/Fellowship: Mayo Clinic Jacksonville Nominated by: Marc Freeman, MD; Donald Nies, MD; Anthony Toledo, MD Sina Kasraeian, MD Orthopedic Surgery/Sports Medicine Orthopaedic Associates of St. Augustine 3055 CR 210W Unit 110 Medical Degree: University of Southern California Keck School of Medicine Residency: University of Southern California Keck School of Medicine Fellowship: Southern California Orthopedic Institute Nominated by: Shahla Masood, MD; Patrick Burns, DO; Hosein Yasrebi, MD John B. Lissoway, MD Emergency Medicine University of Florida 655 W. 8th St. Medical Degree: University of New Mexico School of Medicine Residency: University of Florida Jacksonville College of Medicine Nominated by: UFJP Diana I. Mercado, MD Internal Medicine/Infectious Diseases Jacksonville Infectious Diseases LLC 3627 University Blvd. S. #500 Medical Degree: University of the Philippines College of Medicine Residency: Albert Einstein Medical Center Fellowship: Hahnemann University Hospital/Drexel University College of Medicine Nominated by: Hernan Chang, MD; Brijendra Gupta, MD John Douglas Murray, MD Plastic/General Surgery Obi Plastic Surgery 3599 University Blvd. S. #604 Medical Degree: Emory University School of Medicine Residency/Fellowship: Emory University School of Medicine Nominated by: Lewis Obi, MD; Paul Scioscia, MD; Brett Snyder, MD
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Kenneth Ngo, MD Physical Medicine & Rehabilitation/ Brain Injury Brooks Rehabilitation Specialists, Inc. 3599 University Blvd. S. Medical Degree: University of Wisconsin Medical School Residency: University of Wisconsin Medical School Nominated by: Trevor Paris, MD; Jeff Johns, MD; Sarala Srinivasa, MD Ario Rezaei, MD Diagnostic/Interventional Radiology Drs. McClow, Clark & Berk PA 1912 Hamilton St. #201 Medical Degree: University of Michigan Medical School Internship: St. Joseph Mercy Hospital Residency/Fellowship: University of Cincinnati Medical School Nominated by: Marc Freeman, MD; Anthony Toledo, MD; Donald Nies, MD John B. Stark, MD Orthopedic/Hand Surgery Orthopaedic Associates of St. Augustine 3055 CR 210W Unit 110 Medical Degree: Georgetown University School of Medicine Residency: Robert Wood Johnson University Hospital Fellowship: Duke University School of Medicine Nominated by: Cheryl Dixon, MD; Joseph Costa, DO; J. Francisco Jimenez, MD James K. St. George, MD Phlebology/Interventional Radiology St. Johns Vein Center 9191 RG Skinner Pkwy. #303 Medical Degree: University of Massachusetts Medical School Residency: Albany Medical Center Fellowship: Brigham & Womenâ&#x20AC;&#x2122;s Hospital/Harvard-International Nominated by: Miguel Machado, MD; St. Johns Radiology Associates Albert G. Volk, MD Orthopedic Surgery/Sports Medicine Orthopaedic Associates of St. Augustine 3055 CR 210W Unit 110 Medical Degree: Indiana University School of Medicine
Residency: University of Southern California/Los Angeles County Hospital Fellowship: Matthews Orthopaedic Clinic/Orlando Regional Medical Center Nominated by: Patrick Burns, DO; Paul Shirley, MD; Walter Taylor, III, MD CAPT Lynn E. Welling, MD Emergency Medicine Commanding Officer Naval Hospital Jacksonville 2080 Child St. Medical Degree: USUHS F.E. Hebert School of Medicine Residency: Naval Medical Center San Diego Nominated by: Paul Kaufman, MD; Ashley Booth Norse, MD Christopher Shawn West, MD Urology McIver Urological Clinic 14540 St. Augustine Rd. #2401 Medical Degree: University of Florida College of Medicine Residency: University of Florida College of Medicine Nominated by: Charles Homra, MD; Apoorva Vashi, MD; John Whittaker, MD Bonnie K. White, MD Pediatrics Ponte Vedra Medical Center 1100 Sawgrass Village Dr. #100 Medical Degree: Duke University School of Medicine Residency: University of California School of Medicine San Francisco Nominated by: Thomas Tomlin, MD; M. Teresa Valdes, MD; Rodolfo PenaAriet, MD Suzanne E. Zentko, MD Cardiovascular Disease/Nuclear Cardiology Southern Heart Group PA 14546 Old St. Augustine Rd. #201 Medical Degree: University of Pennsylvania School of Medicine Residency: Hospital of University of Pennsylvania Fellowship: New York Presbyterian Hospital Nominated by: David Stroh, DO; Paul Dillahunt, MD
RESIDENTS/FELLOWS Mayo Clinic Jacksonville Anesthesiology
Reynold Duclas, Jr., MD Siam Sukumvanich, MD
Gastroenterology
Mohamed Othman Ali Othman, MD Mihir Patel, MD Bashar Qumseya, MD
UF College of Medicine Jacksonville Medical Student
Anthony Bunnell, DMD Carlo Guevara, DDS Armando Retana, DDS
Cardiology
Michael Babcock, MD Phillip Habib, MD Rachel Lee, MD Ambar Patel, MD Harendra Patel, MD
Clinical Cardiac Electrophysiology Ali Nasur, MD
Cytopathology
Jinous Saremian, MD
Emergency Medicine
Brian Baird, MD Ashley Doscher, MD Justin Dzik, MD Tracy Graham, MD Benjamin Jivcu, DO Stephen MacDade, MD Christopher Mann, MD Jennifer Mauzy, MD Teri Mayfield, MD Kristin McKee, DO Mark Newberry, DO Joshua Raynes, MD Christine Swenton, MD Alan Wheless, MD
Endocrinology
Margaret Gladysz, MD Sandra Mesliniene, MD
Gastroenterology
Lacid Brenner, MD Melvin Bullock, MD continued to page 44
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Infectious Disease Bharani Pinisetty, MD
Internal Medicine
Candice Aurelus, MD Ronald Brown, II, MD Matthew Clark, MD Clare Dover, MD Madhu Emani, MD Stanley Giddings, MD Vishal Jaikaransingh, MD Priyanka Kapoor, MD Wassia Khaja, MD Jaisri Maharaj, MD Siva Rama Krishna Marri, MD Neil Mayer, DO Sumit Narula, MD Laurie Ramrattan, MD Tanya Reimschissel, DO Marwan Shaikh, MD Estela Thano, MD Eric Tirnauer, MD
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Amy Blanshard, DO Prardhana Challapalli, MD Patricia Esquivel, MD Melissa Oâ&#x20AC;&#x2122;Connor, MD Marjorie Warner, MD
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Radiology/Diagnostic Orthopedic Surgery Marielle Connor, MD Zachariah Logan, MD Dylan Nugent, MD Dang-Khoa Vo, MD
Pathology
Melanie Kubik, MD Jaime Morel, MD
Pediatric Emergency Medicine
Harold Dietzius, MD Carlos Giraldo, MD
Shareen Ismail, MD Carmen Martinez Martinez, MD Joel Mosley, MD
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Pediatric Infectious Disease Saran Valdez-Johnson, MD
Pediatrics Neurology
Farhad Kadkhodaei Elyaderani, MD Dina Randazzo, DO Valerie Rundle Gonzalez, MD Artem Sunik, MD
Cassandra Aboy, MD Michael Carroll, MD Benjamin Jordan, MD Neal Passante, MD
Radiology/Vascular/Interventional Jesus Castillano, MD
Surgery
Interventional Cardiology
Suzanne Brulte, MD Reuben Maggard, MD
Ameneh Ebadi, MD Sushil Gupta, MD Justin Kusher, MD Tabitha Lambert, MD Alexandra Liggatt, MD Queency Mercado, DO Sadaf Saghier, MD Chantel Walker, MD
Rana Alissa, MD Tricia Alleyne, MD Vibhuti Agarwal, MD Mark Bedard, DO Nicole Cacho, DO Margaret Dyer, MD
Bilal Ataya, MD Kristy Cosgrove, DO Matthew Dimon, MD Jacob Guzman Calderon, MD Ravi Keshavamurthy, MD Carnaghi Martin, MD Andrea Mcnab, MD Jason Murray, MD Chetan Narasanna, MD Varun Rimmalapudi, MD Eric Roberts, DO
Surgery/Minimal Invasive Mark Dobbertien, DO
2011 Northeast Florida Medicine Publication Schedule* 1st Quarter 2011 Topic: GERD Guest Editor: Dr. Ziad Awad CME: Medical Errors by Dr. Connie Haan
CME: HIV Impact on Vision by Dr. Michael Stewart Mail date: June 3, 2011
3rd Quarter 2011
Mail date: March 4, 2011
Topic: Mental Health Disorders
2nd Quarter 2011 Topic: Ophthalmology Guest Editor: Dr. Janet Betchkal
Guest Editor: Dr. Steven Cuffe CME: Post Traumatic Stress Disorder by Dr. Tracy Hejmanowski
44 Vol. 61, No. 4 2010 Northeast Florida Medicine
Mail date: September 2, 2011
4th Quarter 2011 Topic: Internet & Medical Practice Guest Editor: Dr. Daniel Kantor CME: Practice Management & Technology/Author TBD *Schedule subject to revisions
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Ziad Awad, MD
Mobeen Rathore, MD
Spring 2010
Fall 2010
Esophageal Cancer Issue
Infectious Diseases Issue
Special thanks to the Guest Editors who made the 2010 Northeast Florida Medicine journals possible.
J. Bracken Burns, Jr., DO
Neel Karnani, MD
Summer 2010
Winter 2010
Resident Research Issue
Palliative Medicine Issue
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Northeast Florida Medicine Vol. 61, No. 4 2010 45
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