end of life planning
PT and end-of-life care to be an organ donor how to cope with death
March/April 2016 A Publication of the
March/April 2016 ~ living well
1
T
here are many things to love about Montana. A D D O N E M O R E T O Y O U R L I S T. . .
Western Montana Clinic C A R I N G F O R Y O U S I N C E 19 22
60 HEALTHCARE PROVIDERS 15 DIFFERENT SPECIALTIES LAB & X-RAY ON SITE 2 URGENT CARE FACILITIES
CLINIC LOCATIONS BROADWAY BUILDING 500 WEST BROADWAY • MISSOULA
NOW CARE DOWNTOWN MISSOULA 500 WEST BROADWAY • 6TH FLOOR
COMMUNITY MEDICAL CENTER CAMPUS PHYSICIAN CENTER 3 2835 FT MISSOULA ROAD • MISSOULA
NOW CARE SOUTHGATE MALL 2901 BROOKS • MISSOULA
GARDEN CITY MEDICAL ARTS BUILDING 601 W SPRUCE • MISSOULA
• 406.721.5600 • 800.525.5688 westernmontanaclinic.com
500 WEST BROADWAY • MISSOULA MONTANA 59802
2
living well ~ March/April 2016
living well is a great health resource Amber Jackson
cancer awareness
Breast Cancer Survivor
progress in the fight
My superpower is
attitude.
ways to support a friend
JAN/FEB 2016
A Publication of the
Stronger than her initial uncertainty, more powerful than her diagnosis, Amber’s ‘can-do-anything’ attitude helped her to kick cancer’s butt. It’s this same attitude that gives her the power to embrace a new life. Embrace your inner superhero to do great things.
resiliency afterward
communitymed.org
When Mom wasn’t feeling well, I knew who to call.
m wasn’t feeling well, I knew who to call. end of life planning
MIS20443862
PT and end-of-life care Anytime you’re worried about the health of a loved one, we’re here to help. Our free Nurse On Call telephone service gives you access to knowledgeable, registered nurses anytime, day or night. We’re your local, trusted resource to check symptoms fast. Call us at 406-327-4770.
24-7 Nurse On Call 406-327-4770
PT and end-of-life care
rried about the health of a loved one, we’re here to help. Our free phone service gives you access to knowledgeable, registered nurses ght. We’re your local, trusted resource to check symptoms fast. 4770.
se On Call 7-4770
end of life planning
how to cope with death
March/april 2016 A Publication of the
communitymed.org/nurse
Competitor Daredevil Riding partner Teacher
to be an organ donor how to cope with death
to be an organ donor
Conqueror
March/april 2016 A Publication of the
communitymed.org/nurse
I ride hard. Occasionally, I land hard. It’s good to know Community is here. Big risks can lead to big injuries. For injuries that require immediate care, our emergency department physicians and highly trained staff are prepared to give fast, expert treatment to get you back on the trail as quickly as possible. From minor injuries, to sudden illness, to life-saving trauma care, we’re committed to giving our patients the highest quality, family-friendly care available, in a timely manner. If it’s emergency care, of course it’s Community. Visit communitymed.org/emergency
missed an issue? want to review an article?
Community Medical Center is an independent, local non-profit hospital.
communitymed.org/emergency
sports medicine MAY / JUNE 2015 A Publication of the
sports physicals keep you safe
play it safe with concussions
brain health
special sections are available online
NOV/DEC 2015
A Publication of the
delay or prevent Alzheimer’s
reading to your child makes all the difference
missoulian.com/specialsections “WHEN OUR PLANS CHANGED,
COMMUNITY
D E L I V E R E D.”
NOT ONLY DID COMMUNITY WELCOME THEIR PLANS, THEY HELPED WELCOME THEIR KIDS HOME. WHEN COLIN & LEXIE HICKEY GOT TO COMMUNITY, WE EMBRACED THEIR DESIRE FOR A HOME BIRTH. THEIR TEAM WAS WELCOMED AS A PART OF COMMUNITY. WE MADE SURE THAT THEIR NEEDS WERE MET. HERE AT COMMUNITY, WE BELIEVE THE PARENTS’ CHOICES SHOULD ALWAYS BE HEARD.
best face forward
PLANS MAY CHANGE, BUT AT COMMUNITY, COMPASSIONATE CARE IS ALWAYS OUR PRIORITY.
SEPT/OCT 2015
A Publication of the
you don’t need insurance to see dentist causes of dry eye goes beyond obvious
publisher Mark Heintzelman
missoulian.com
A publication of the
editor Matt Bunk
People in Missoula and western Montana want to feel good, look good and live well. Available at more than 150 newsstand locations throughout the area, Western Montana Living Well is well suited to more than 30,000 readers monthly who want health tips on fitness, nutrition, family, financial advice, wellness, therapy and beauty.
graphic design Krista Ness Bob Jacobson
advertising sales Rachel Crisp Philips 406-523-5223 contributors Richard Asa Linda Bierbach Beverly Braak John M. Crisp Sarah McGree Tim Nielsen Zorba Paster Joe Smydo
The opinions, beliefs and viewpoints expressed by the various authors and forum participants in this publication do not necessarily reflect the opinions, beliefs and viewpoints of the Missoulian or Lee Enterprises. The author of each article published in this publication owns his or her own words. No part of the publication may be reprinted without permission. ©2016 Lee Enterprises, all rights reserved. Printed in the USA.
TRUST YOUR SKIN TO THE EXPERTS IN DERMATOLOGY
DR. S. FOSTER, MD
GENERAL DERMATOLOGY ECZEMA BOTOX
DR. C. KUTSCH, MD
DR. A. TEGEDER, MD
DR. K. TOWNLEY, MD
C. FONTAINE, PA-C
N. MCKEE, PA-C
• ACNE • CYST REMOVAL
• PSORIASIS • SKIN CANCER SCREENING • MOLE EVALUATION • MINOR SURGERY
SCLEROTHERAPY
• SUN DAMAGE TREATMENT
PRE-CANCER TREATMENT
• MOHS SURGERY • LASER HAIR REMOVAL IPL TREATMENTS • FRAXEL REPAIR
CHEMICAL PEELS
BROADWAY BUILDING DOWNTOWN
Western Montana Clinic 4
living well ~ March/April 2016
• FIFTH FLOOR • 500 WEST BROADWAY • MISSOULA
westernmontanaclinic.com 406.721.5600 • 800.525.5688
Caring for you since 1922
MARCH/APRIL 2016 VOL. 34
in this issue
have a conversation about your care pg. 6
physical therapy at end of life pg. 10
end of life planning end of life issues can be tricky pg. 14
when hello means goodbye pg. 22
be an organ donor pg. 26
PTs assist with home assessment pg. 20
complexities of assisted suicide pg. 24
coping with death pg. 30
March/April 2016 ~ living well
5
Have a conversation
6
living well ~ March/April 2016
about care choices By Linda Bierbach, RN
March/April 2016 ~ living well
7
T
he approach to talking about and completing an advance directive is called advance care planning. Advance care planning is a process that involves thoughtful discussions we have with our family, loved ones and health care team members about our future health care choices and about filling out an advance directive. The conversations we have with those closest to us and our health care providers should not only name our health care choices, but also should include why we are naming
our choices. The health care team wants to provide us with the best possible care, consistent with our values and beliefs. We make choices every day – choices about where we want to live, who we want to marry, what actions to take in our job, what car or house to buy and more. These choices are made after we gather the information to help us to understand, reflect and discuss about why and what choices we are making. Advance care planning and completing an advance
Advance care planning is not a one-size-fits-all process 8
living well ~ March/April 2016
directive are about making one of our most important choices: deciding what future medical treatment we would want if we are unable to do so for ourselves because of a sudden health care emergency from an illness or injury. An advance directive is a written plan that names our future health care decisions. It is a legal document when we sign the form and this is witnessed and signed by two people. The two documents often used to complete an advance directive are a living will and a power of attorney for health care. A living will contains instructions that tell providers and the health care team what life-sustaining treatments we want and do not want at some future time. A power of attorney for health care document identifies, in writing, the name of the person we have asked and appointed to make our decisions in the event we are unable to do so for ourselves. This person’s job is to speak as our voice and to make our choices known as we have directed them. This communication with our family and loved ones is a powerful gift. Our telling them our reasons for and the information about our choices lifts the burden from them
for making decisions for us; we have made the decisions for ourselves. Completing an advance directive can be a bit overwhelming – not only about the choices we are making, but also about how to complete the forms. Sometimes the power of attorney for health care is termed differently, but the role has the same responsibility. For example, the most often recommended advance directive forms for our use from various organizations in Missoula are the Five Wishes form and the My Choices form. In the Five Wishes form, the role is called a “health care agent. ” In the My Choices form, the role is called “health care representative.” Additionally, an advance directive form prepared in a lawyer’s office may use the name “health care proxy” or “surrogate.” Advance care planning is not a one-size-fits-all process, and filling out an advance directive form may be challenging. Helath care organizations have services and health care team members available to assist people in this work. Linda Bierbach is a registered nurse and palliative care/advance care planning coordinator at Providence St. Patrick Hospital.
Retirement Living, Montana Style Independent, Assisted Living, & Respite Services
2 2 5 C o ve rd e ll R d . , B ig f o rk , Mo n t a na 5 9 9 1 1 ( 4 0 6 ) 8 3 7 - 2 6 9 8 • w w w. ris in g m o u n t a in s . c o m TTY 711 (406) 257-8162 March/April 2016 ~ living well
9
10
living well ~ March/April 2016
Physical therapy and end-of-life care By Sarah McGree
E
nd of life care, also known as hospice care, supports a person who has been diagnosed with a non-curative illness with a life expectancy of approximately six months or less. Hospice care encompasses a dedicated interdisciplinary team of health care professionals who provide compassion, support and comfort for patients and their families. This takes place in the patient’s home environment or an inpatient facility. At the same time, this interdisciplinary team recognizes the patient as a person with hopes, dreams and goals, and works to help the patient achieve these aspirations. The team is most commonly made up of physicians, nurses, home health aides, social workers, psychologists, spiritual caregivers, physical therapists, occupational therapists, speech and language pathologists, and trained volunteers. One may wonder what a physical therapist can offer to a patient receiving hospice care, but a physical therapist plays a very valuable role on the health care team. In accordance with the vision statement for the profession of physical therapy provided by the American Physical Therapy Association (APTA), physical therapists are optimizing movement and improving the human experience with patients all across the lifespan, including those who are receiving hospice care. The many functions and interventions provided by physical therapists working in hospice care are described below. • Positioning involves techniques to correctly position patients in things like a wheelchair, bed or recliner to prevent pressure sores, to decrease pain, to facilitate digestion and breathing, and to prevent the shortening of muscles. • Bed-mobility training includes teaching the patient, family and caregivers techniques for repositioning the patient in bed or how to get in and out of bed in the most efficient and safe manner while maximizing the patient’s independence. • Transfer training involves patient, family and caregiver training to maximize the patient’s independence when transferring to different positions like sitting or standing in a safe and efficient manner. • Gait training and stair training includes teaching the patient how to walk and navigate stairs safely with the least assistance needed. Family and caregiver training is also included. • Therapeutic exercise is utilized to increase strength and range of motion with the focus of improving function and mobility. Respiratory exercises and techniques are also included to improve efficiency of breathing and decrease risk of pneumonia. March/April 2016 ~ living well
11
• •
•
•
• 12
Endurance training is provided by the physical therapist along with techniques for energy conservation. Pain management and relief includes manual techniques such as soft tissue mobilization, edema management, and modalities including heat, ice or transcutaneous electrical nerve stimulation. Balance and fall prevention training includes activities and neuromuscular re-education to improve balance, along with the assessment and consideration of many other factors related to falls. These include blood pressure, weakness, co-morbidities that affect mobility or cognition, vision problems, medications, assistive device use, and home hazards. Physical therapists are trained to address these multi-faceted problems related to fall prevention and will refer to appropriate healthcare providers as needed. Patient, family and caregiver education includes education about safety with mobility and transfers, fall prevention, and use of assistive devices and equipment. The physical therapist will also collaborate with patient and family to create goals and review the plan of care with the patient, family and caregiver. Physical therapists in hospice care also utilize active listening and communication skills to facilitate patient-centered care. Equipment recommendation includes the ongoing
living well ~ March/April 2016
•
assessment for the necessity and recommendation for durable medical equipment (DME) to the healthcare team in order to maximize the patient’s mobility. DME includes assistive devices such as canes, walkers, or wheelchairs. It also includes equipment to assist with transfers, raised toilet seats, commode chairs, tub and shower benches, and hospital beds if the patient resides at home. Home modification begins with a home evaluation completed by a physical therapist. They assess the home for hazards that pose a fall risk to the patient. They will then educate the patient and family, and make suggestions for home modifications. For example, smaller modifications may include the removal of throw rugs, while larger modifications may include constructing a ramp to enter the home. Ultimately, they will respect the patient and family’s decision to complete or not complete the home modifications.
The physical therapist is an integral part of the interdisciplinary healthcare team as they spend a significant amount of time with the patient. They provide the team with status updates related to function and quality of life, and they are also great advocates for their patients when it comes to obtaining DME and referrals to appropriate healthcare providers. As you can see, physical therapy has a vital role in
hospice care. A 2015 study concluded that physical therapy is very beneficial in enhancing quality of life in hospice care by improving comfort, mood and function, while also addressing family and caregiver needs. A quote by Dame Cicely Saunders demonstrates the objectives of the health care team and sums up the role of physical therapy in hospice care: “You matter because you are you. You matter to the last moment of your life, and we will do all we can not only to help you die peacefully, but also to live until you die.” If you find yourself or a loved one in this stage of life, please consider getting a physical therapist involved in your care.
IMPROVED BALANCE AND COORDINATION FOR ALL AGES • • • • •
Balance Restoration & Improvement Coordination Improvement Concussion Treatment Same-Day Dizziness Treatments Industry-Leading Technology & Equipment
Reference List
1. Jeyaraman, S., Kathiresan, G., &Gopalsamy, K. (2010). Hospice: Rehabilitation in reverse. Indian Journal of Palliative Care, 16(3): 111-116. 2. American Physical Therapy Association (APTA). (2013). Vision statement for the physical therapy profession and guiding principles to achieve the vision. http:// www.apta.org/Vision/ 3. Putt, K., Faville, K., Lewis, D., McAllister, K., Pietro, M., & Radwan, A. (2015). Role of physical therapy intervention in patients with life-threatening illnesses: A systematic review. American Journal of Hospice and Palliative Medicine: 1-12. 4. Move Forward PT. (2011). Physical therapist’s guide to falls. American Physical Therapy Association (APTA). http://www.moveforwardpt.com/ forhealthcareprofessionals/detail/falls
Sarah McGree is a student physical therapist from the University of Montana who is completing her final clinical rotation at Element Physical Therapy in Missoula, MT.
406.543.7860
ELEMENTPT.COM March/April 2016 ~ living well
13
End-of-life issues can be tricky to navigate
14
living well ~ March/April 2016
By Dr. Zorba Paster
M
y mom died of Alzheimer’s back in 1981. You can imagine what it was like, but imagining is different from living through it. She had been sick for seven years — always remembering who I was, but forgetting my name. I could see in her eyes that she knew I was her son, but her tongue just couldn’t get out the words. It was quite sad. She went into the hospital with pneumonia, the doctors telling my dad they would do everything they could to “save her,” and my father thinking she would recover and return to her old self. I can’t blame him for thinking that — they had been married for 50 years, and he carried the memories and love for her from all that time. At the hospital, they pumped and pumped her with antibiotics for weeks, trying to get her double pneumonia under control with no thought about palliative measures. Remember, this was at an early stage of the hospice movement, where compassionate care meant strapping people down with IVs to make sure they received fluids, etc., even though the human at the other end might have just wanted to stop drinking and let nature take its course. Eventually, I confronted her doctor, asking what he thought he was doing. Maybe we should give her comfort measures, I said. After all, she did have severe Alzheimer’s, complete with all the attendant disorientation, wandering, swallowing difficulties, incontinence, soiling and more.
March/April 2016 ~ living well
15
He countered with, and I quote, “Don’t you want to save your mother?” I was livid. I don’t often lose my temper; it’s simply not in my mojo. But this was one time that losing it was more than OK. I answered with a diatribe about what I had learned about the hospice movement and palliative care, ending with the suggestion that perhaps a call to my good lawyer friend who, by the way, happens to sue doctors would help convince this particular doctor to stop chaining my mom to the bed post to keep her IV in and just give her comfort measures. That’s when he stopped tormenting her and started being a doctor, attending to her comfort and letting her go gently. 16
living well ~ March/April 2016
Gently. I thought about that recently when I read a research paper published in the Journal of the American Medical Association showing that physicians are less likely to die in the hospital, die in the ICU, and more likely to die at home. And they are much more likely to be less aggressive with treatment at the end of their lives than are our patients. That’s right. When it comes to our own care, we physicians are more likely to say let’s look at this realistically. It’s time to stop with the IVs and the chemo, and it’s better to see what we can do to improve the quality of the life we have left. At least that’s what it appears we do for ourselves, but it’s not what we do for our patients. So where is the disconnect? Does it start with our
When it comes to our own care, we physicians are more likely to say let’s look at this realistically. training as doctors? Is it our competitive nature to want to say we “saved” the patient? Is it because we don’t want to give up, even though death is inevitable for all of us. As I have said before: Death is not an elective event; it is prescribed. Or does this come from our patients and family who have unrealistic expectations, who haven’t been educated about what the outcome really will be? Perhaps they feel if they don’t do everything possible, they have failed — and they have not given as much as they could for the loved one who is leaving them. I think it’s a combination of both. There are unrealistic expectations on both sides, in no small part because of the medical advances that have given us so much we sometimes don’t know when to stop. But let’s go back and remember this study showing that physicians seem to know when to stop when it comes to their own life better than when they counsel others. If you like to read, as do I, get physician and author Atul Gawande’s book “Being Mortal.” I saw him when he spoke at Epic — he is a remarkable healer, and his book is an eyeopener. My spin: If you or a loved one has a devastating disease, always do the old truth trick: Ask your doctor what they would do if it were them or a member of their own family. You might be surprised by what you hear. Stay well. March/April 2016 ~ living well
17
Va r
ico Ca se ll fo & ry Sp o id ur er FR Ve EE in Gu id e
Leg Pain?
Varicose Veins? 18
living well ~ March/April 2016
Call Renew your legs . . . renew your life!
(406) 203-1866 Missoula Non-Surgical Treatment Insurance Pays Same Day/In office Procedure
www.VeinMontana.com March/April 2016 ~ living well
19
Physical therapists help By Tim Nielsen, PT, Valley Physical Therapy
H
ospice services take care both of family members and patients. Taking care of those who provide final care to their loved ones is essential for hospice patients. Not only do hospice patients have numerous end-oflife needs, but so do their families and caregivers. Keeping patients comfortable and safe in their home setting is a priority for all the people providing care for those battling terminal illness. To do this, a home assessment by a physical therapist regarding mobility issues can be very helpful. Accessing the house is an important component of long-term care. Having or needing ramps and railings, 20
living well ~ March/April 2016
along with knowing about steps and terrain, determines access by ambulation or wheelchair. Within the house, other considerations are also essential for optimal mobility. These include doorway size and types of floor surfaces, along with a special consideration for the physical arrangement of the bathroom and bedroom. The need for assistive devices is particularly important in these two rooms relative to grab bars, shower benches, non-skid material on the shower floor, hand-held showers, raised and framed toilets, adjustable beds, wheelchairs with necessary supportive features, bedside commodes and electric recliner chairs. Ambulation devices are also a consideration for
with home assessments moving around the house safely. These may include a wheelchair or scooter, wheeled walker, cane(s), or crutches. Rooms may need to be modified or rearranged to fit needs for being on one floor if the patient’s bedroom is on another level and not safely accessible. Removing obstacles from rooms to decrease risk of falls is also important. Using a night light to make the path from the bed to the bathroom more visible is another good safety measure. Having appropriate assistive devices to make daily activities easier for patients also is less physically and emotionally taxing on family caregivers as they feel less stress because her loved ones can be
safer, comfortable and more mobile. Hospice patients may benefit from a limited exercise program to improve endurance, balance, strength and flexibility for better function, comfort and ease of care. This exercise instruction can readily be done by a physical therapist for the patient and all caregivers. End-of-life times are difficult for everyone, but issues regarding safety, mobility and comfort can be addressed and assisted by assessment and instruction from physical therapists trained in those areas. Keeping caregivers healthy helps them take care of their loved ones during this transitional time. March/April 2016 ~ living well
21
when hello means
goodbye By Beverly Braak, MD Women’s Choice of Missoula
22
living well ~ March/April 2016
W
hen a loved one dies, friends and family often gather to support one another in their mutual grief. An important part of this support is sharing stories and remembering the life of the deceased. When a baby is stillborn, the opportunity to create memories is fleeting. The death is usually so unexpected that parents can be left bewildered and confused, unable to appreciate the short time they have to say hello before they must say goodbye. In 2008, Olivia Jagelski graduated from nursing school and started her career as a labor and delivery nurse at Community Medical Center. Her very first patient was admitted for induction of labor just three weeks shy of her due date. The patient’s baby had died a few days before. This was something for which nursing school had not prepared Olivia. She felt inadequate for the task and wished she could have provided better care and support for her suffering patient. This experience was the impetus for Olivia to join with other CMC nurses to address the special needs of this obstetric population. The same year, Resolve through Sharing, the leading organization in bereavement education and resources, held a training seminar in Missoula. Olivia attended along with a few other CMC nurses, and thus began a new era in the care of patients dealing with the death of a child, either prior to or shortly after birth. Olivia put together a four-page “Perinatal Loss Checklist” to be used whenever these patients were admitted. The checklist is exhaustive and ensures that absolutely nothing is missed. It also allows nurses to focus on the patient, rather than spend time looking for and puzzling over nonroutine paperwork. When a baby dies before being born, parents have several difficult decisions to make. Do they wish to hold the baby immediately after delivery or after its bath? Do they wish to give the
baby its bath themselves? Perhaps, in their grief, they feel they could not bear to hold their baby at all. Would they want an autopsy done? What kind of arrangements should be made with a funeral home? Which funeral home? These are the issues with which nurses, pastoral services and social workers are now prepared to assist. Patients are also provided with information in a “Perinatal Loss Education Folder” and the book “When Hello Means Goodbye” to help them make the decisions that feel right for them. A very important decision to be made upon learning that the baby has no heartbeat is the timing of delivery. On this one point, all of labor and delivery nurses are in agreement. Parents do better if they go home and take some time to absorb this tragic news, rather than rushing off to the hospital for an immediate induction or C-section. Finally, after the baby has been born and the paperwork filled out, the time for making memories has arrived. Not all parents want what is offered but rarely will they refuse to allow the staff to put together a memory box. The infant’s footprints are taken with special equipment to prevent tearing its delicate skin. After being dressed and tucked into a bunting, professional photographs are taken and placed into a beautiful, cloth-covered box along with a lock of the baby’s hair, a gold baby ring, footprints, receiving blanket and other keepsakes. Most parents are grateful for this memory box of their precious child, but a few decline to take them home. The staff respects their wishes and stores these boxes. No one is permitted access to them. They are the very private mementos of a child whose parents could not bear to be reminded of their loss. The nurses assure them they are welcome to return at any time and request their memory box. How many parents return, you may ask? All of them. March/April 2016 ~ living well
23
Complexities of assisted suicide are aplenty and worth examining By John M. Crisp, Tribune News Service 24
living well ~ March/April 2016
B
rittany Maynard is the human face of the proposition that Americans who are threatened by a terminal illness should have more freedom to choose the time, place and manner of their own deaths. In April 2014, Maynard was diagnosed with grade 4 glioblastoma, a form of brain cancer, and given only six months to live. With no hope for a cure, she began to prepare to die. By October, she announced that she had checked off the last item on her “bucket list,” a visit to the Grand Canyon. Death by brain cancer is often a prolonged, painful and undignified experience, so Maynard moved, with her family, from California to Oregon, one of three states with “death with dignity” laws that permit a physician to assist a terminal patient end her life. Which is what Maynard did, on Nov. 1, 2014. In her final Facebook post, Maynard said goodbye to family and friends and then: “Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me – but would have taken so much more.” Maynard’s story is a sad one. She was young – only 29 – and she appears to have been the type of person who would have made the best of her life. But she was nearly out of choices. So she made the best choice – in her mind – that she could, sparing herself and her family a prolonged, painful death. Not everyone agrees, and laws that permit physician-assisted suicide are still a very hard sell in the United States. This is understandable. Brittany Maynard’s story strongly supports more choice in dying, but what about the case of Jeffrey Spector? Last May, Spector, 54, travelled from his home in Britain to Zurich, where he had a last meal with his family, and then checked into the clinic of an organization called Dignitas and had himself put to death, against the wishes of his wife and three young daughters. Spector wasn’t terminally ill, but he had lived for six years with an inoperable tumor that had wrapped itself around his spinal cord and threatened him at any time with
quadriplegia, a state of helplessness that this active man believed would have been insufferable. Instead, he chose to die. Euthanasia’s slippery slope gets treacherous quickly. HBO’s “Vice” reported on the liberal assisted-suicide laws in the Netherlands, which don’t require a terminal diagnosis. Thus we find ourselves inside the cozy, bookshelf-lined home of a pleasant, cheerful Dutch woman in her 60s, on the day before her death. She was not physically ill, but, contrary to appearances, she had suffered from irresolvable depression for decades. Her children are grown and on their own. She simply no longer wanted to live. The next day, the laws of the Netherlands accommodated her. It can get even more complicated: Last week, Charles Lane, writing in the Washington Post, reported on the case of a Dutch psychiatric patient known as 2014-77. As a child he suffered from neglect and abuse and by age 10 had been diagnosed with autism. His life was miserable for two decades and he attempted suicide repeatedly. More treatment was attempted, but finally doctors complied with his request to end his life. Perhaps we can distill some principles out of all this complexity: (1) The clarity and humanity of a case like Brittany Maynard’s shouldn’t obscure the moral and ethical dangers of assisted suicide. (2) Europeans deserve credit for attempting to deal realistically with the hopelessness, helplessness and desperation that many feel at the end of life. (3) Society has an obligation to spend resources to mitigate the psychological and physical distress that causes nearly 120 Americans to commit suicide every day. (4) Physical illness is not the only condition that makes life seem no longer worth living. And (5) while others have a stake in our choices, a dearly held right should be the privilege of deciding not only how we live, but how we die. John M. Crisp, an op-ed columnist for Tribune News Service, teaches in the English Department at Del Mar College in Corpus Christi, Texas. Readers may send him email at jcrisp@delmar.edu.
March/April 2016 ~ living well
25
26
living well ~ March/April 2016
Faced with tragic loss, families face difficult choice of
organ donation By Joe Smydo, Pittsburgh Post-Dispatch
P
ITTSBURGH – “No.” That’s what Kelli Jo Lovich said when she was asked to donate the organs of her 4-yearold son, Colbee, who died after suffering severe brain injuries last year in an ATV accident. But Lovich recalled that Shannon Pribik, a procurement coordinator with the Center for Organ Recovery and Education, outside Pittsburgh, persisted. Pribik answered questions, promised there would be minimal trauma to Colbee during organ recovery and agreed to stay by his side until the funeral director arrived for his body. Lovich relented. “He was only 4,” she said of Colbee, “but he loved to help.” Procurement coordinators are on the front lines of the nation’s overwhelmed transplant system. They approach families like the Loviches in the midst of a tragic loss and ask them – when their grief is raw and their spouse, child or sibling is tethered to machines in the
intensive care unit – to donate their loved one’s organs so that others can live. “When you do it for the first time, you feel like you’re invading their space,” said Linda Miller, who operates a University of Toledo graduate training program for coordinators. The program was founded in 2003 with CORE’s support. The stakes are high. With more than 122,000 people waiting for transplants, and an average of 22 of them dying each day, coordinators face great pressure to recover organs from the roughly 2 percent of Americans who end their lives in a way – usually of brain injuries while on a hospital ventilator – that makes donation possible. People who die outside of a hospital cannot be donors because their organs deteriorate too quickly. Sometimes, a family will say, “It’s just not for us. Let the next person be the donor,” said Jonathan Coleman, a coordinator at CORE.
With more than 122,000 people waiting for transplants, coordinators face great pressure to recover organs from the roughly 2 percent of Americans who end their lives in a way that makes donation possible. March/April 2016 ~ living well
27
Because donation can occur only in limited situations, he said, coordinators stress a family’s “unique opportunity” to turn its tragedy into somebody else’s second chance at life. Often, advocates say, the decision to donate a loved one’s organs – to let that person live on through others – sustains a family for years. Yet it can be a tough sell. While demand for organs is growing, donation rates have been stagnant, with deceased donors numbering about 8,000 annually for the past decade. Overall, procurement organizations – CORE is one of 58 nationwide – recover organs from eligible donors 73.6 percent of the time. If a person had registered as a donor – the option is given at a driver’s license center, among other places – procurement organizations in Pennsylvania and most states have the authority to recover organs even if relatives object. If the person was not registered, coordinators try to persuade the family to donate the organs. A former anesthesia tech, Lovich once walked in on
organ recovery surgery by mistake and blanched at the sight. Her reservations about organ donation were clear; Pribik recalled Lovich’s silence and negative body language. But Lovich said Pribik’s promise that the cuts to Colbee’s body would be minimal – no greater than that required for regular surgery – softened her resistance. Pribik’s promise to stay with Colbee until the funeral director arrived for his body – Lovich didn’t want him “to just sit in a basement somewhere” – also helped. The thought of Colbee helping others moved her aching heart. Coordinators are trained to address concerns and answer questions while guiding the family toward donation. Families often make special requests, and Pribik, who has held donor children in her arms, played their favorite songs in the operating room and kept treasured belongings near them, obliges when she can. The job – with a starting base salary often in the low $60,000 range, Miller said – can be physically and emotionally grueling. Shifts of 24 hours or longer are common. Many coordinators, including Pribik, come from
While demand for organs is growing, donation rates have been stagnant, with deceased donors numbering about 8,000 annually for the past decade. 28
living well ~ March/April 2016
the nursing ranks and have experience with end-of-life care. Miller said her training program was founded partly because high turnover signaled a need for better job preparation. Of the 84 who graduated from 2004 to 2014, about 78 percent are still in the field, she said, calling that a “very good” rate. “I tell them every tough thing about this job,” she said. After consenting to donation and completing paperwork, family members are encouraged to go home. But for the coordinator or coordinators – some work in teams – hours of work still are ahead. Organ systems must be evaluated, the data entered into a national database, prospective recipients identified and offers made to transplant centers. The coordinator also must maintain the condition of a body that, without brain function, becomes unstable. Electrolytes go out of balance and body temperature and blood pressure drop – all changes that can damage the organs. As soon as possible, procurement organizations give donor families welcome news. Lovich learned that Colbee’s kidneys had gone to a man and a woman, both in their late 50s, and his heart valve to an 11-month-old baby. She has continued to stay in touch with Pribik and has registered as a donor so that she has a chance to follow Colbee’s example. “If my son can do it,” she said, “I can do it.”
Winds of Change Mental Health Center
call 406 721 2038 www.WindsOfChangeMontana.com
Immediate Scheduling Now Available for Children
therapy, community-based rehabilitation and support, case managment, medication evaluation and management
hope healing recovery
Winds of Change Mental Health Center 2685 Palmer Street, Suite C Missoula MT 59808
B. Braak, MD • Obstetrics and Gynecology 2831 Fort Missoula Rd, Missoula, MT 59804. (406) 327-3875 • womenschoiceofmissoula.com March/April 2016 ~ living well
29
How to cope with death
the first time you lose someone close By Richard Asa, Chicago Tribune (TNS)
30
living well ~ March/April 2016
W
hen you’re young, the distinct pain of grief may be felt with the loss of a beloved pet. Sometimes years go by, though, before a family member or close friend dies. Losing someone close to you for the first time is overwhelming. The grief is an unexpected cascade of treasured memories intertwined with feelings of incomplete, unexpressed emotions. In “On Death and Dying,” author Elizabeth Kubler-Ross described the five stages of grief: denial, anger, bargaining, depression and acceptance. Denial is the first stage that will hit you when someone you love dies. It opens the door to what is to come. Kubler-Ross and David Kessler, in the book’s new edition “On Grief and Grieving,” explain that denial comes first to help you survive the loss. During this stage, “the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. … We go numb.” Really, we just want to run away. Denial must be met head on though, because it starts the grieving and healing process. “Do your best to remain self-aware in the face of the emotions that will surge,” says Virginia A. Simpson, a Sacramento, Calif., bereavement care specialist and author of “The Space Between,” a book about caring for her dying mother. “Acknowledge that thoughts such as ‘I can’t handle this’ or ‘I’m not strong enough’ are just a story you are telling yourself.” Expressing feelings, negative and positive, is important. “You can’t avoid the enormity of the situation,” says Judy Rosenberg, a Los Angeles-based clinical psychologist. “Along with the death of a person comes the death of precious memories and feeling of incomplete, unexpressed emotions. … Expression allows you to heal and move on.” Spiritual counselor Audrey Hope said she walked in circles at her office for hours after receiving news of her sister’s sudden death. She then expressed her rage and grief by lying on a table and screaming off and on for three hours, she said. If you are able, being at the bedside of a dying friend or family member can help blunt the pain of denial. Although the paradox of denial is that it can keep you from being there, being part of the dying process can help you through the other stages and lead you toward acceptance. “Because most people are intimidated by the dying process, they tend to leave the bedside before they have said their final goodbyes,” Rosenberg said. “When death is not appropriately grieved, you bear the burden
of feeling incomplete. This sense of incompletion can show up as guilt, nightmares and a general feeling of suppressed emotions.” The unexpected loss of someone you love calls for true courage. Chicago therapist David Klow believes that while many people might shrink from the unexpected experience, they would benefit by remaining open to it and “leaning into the feelings.” “Rather than fighting through the feelings, it helps to stay with them and let the feelings guide how you might say goodbye,” he said. “Most people worry they will become too overwhelmed by emotions (but) being able to feel what we are going through in the moment actually allows for a healthier grieving process.” To help prepare them for the loss of a loved one later, kids can benefit from learning about loss not related to death early on. Learning how to deal with leaving one school for another, losing a friend who moves away or breaking an object that had special meaning can help create understanding of grief. “Those experiences help us learn to cope with a loss,” says Kriss Kevorkian, a Los Angeles-area thanatologist, a person who studies death and dying. “When losing a loved one for the first time, the best thing to do is ask (yourself) how you coped with other losses in your life.” “In our society, we’re often told to ‘get over it,’ which is just about the worst advice ever,” she said. “Sit with your grief, find the meaning in it through appreciating that fact that you have loved ones that you care for.” There’s no way to avoid grieving, Kevorkian says. It will come no matter how much you try to resist. “Allow it to unfold,” she says. “Grief … teaches us to appreciate life and those we love. Instead of pushing it aside, embrace it and learn to truly be grateful for every day.” Simpson, the bereavement care specialist, offers this advice when you are at the bedside of a loved one who is dying: • Consider that being present at the end of someone’s life is a sacred honor, a privilege and a gift. • Accept that you may be scared and that it’s OK. • To alleviate your own fear, focus your attention on the person you love. Touch them, speak to them, sing to them, thank them. • Don’t worry if you cry. • Don’t be concerned about knowing the right thing to do. There is no single right thing. Just show up, pay attention, tell the truth and don’t be attached to the outcome.
March/April 2016 ~ living well
31
Resolve to make difficult times easier for your loved ones By Brandpoint
T
here are few traditions as optimistic in spirit as resolution setting. Every Jan. 1, millions of Americans make resolutions. In 2015, the second most popular resolution - behind dieting - was to become better organized, according to the Statistic Brain Research Institute ranking of top 10 New Year's resolutions. Although sometimes intimidating to take on,
32
living well ~ March/April 2016
organizational initiatives can produce enormously satisfying results. One such gratifying organizational endeavor involves getting your thoughts together, documenting your information and expressing how you want to live out the rest of your life. This undertaking is uniquely rewarding because it will give you peace of mind while also helping to make difficult times easier for your loved ones.
LivingWell Acupuncture
Independent Living
Acupuncture Clinic of Missoula
Independent Living
Safe, gentle and effective healthcare. Rebecca Sobin, D.A.O.M. L.Ac. Tonia Janzen, M.Ac.O.M., L.Ac. Dallas Seaber, M.Ac.O.M., L.Ac.
3031 S Russell St • 728-1600 acupunctureclinicofmissoula.com
Assisted Living
Mental Health
Now Accepting New Clients
Your well-being is our priority. Enjoy life to the fullest, doing the things you want to do rather than what you have to do. Pop by and see how Life is Just a Little Easier Here.
3710 American Way, Missoula
(406) 273-0101
Independent Living
• Case Management • Adult Group Homes • Community Based Rehab & Support Staff • Recovery Mall • Health and Wellness Programs • Group Home Living • Payee Services y • Children's Mental Health Services (406) 721-2038 2685 Palmer St., Suite C Wocmt.com Same Day or Next Day Appointments
Mental Health
Affordable Independent living for persons 62 or older
Assisted Living We recognize each person is unique So you’ll find just the right level of care and support to enjoy your individual freedom. Pop by and see how Life is Just a Little Easier Here. 3710 American Way, Missoula
(406) 273-0101
Family Practice Blue Mountain Clinic provides patientcentered, family practice services to the local community from a choice-based perspective. We believe that choices in any health care decision should be met with dignity in a supportive environment. Our services include: pediatrics, mental health, general wellness, travel medicine, transgender health and reproductive care for women and men. 610 N California St, Missoula, Mt 59802 (406) 721-1646
3 meals a day • Housekeeping Centrally Located • Convenience Store Beauty Salon • Service Coordinator Non-Denominational Chapel
Missoula Manor Homes 909 W. Central Missoula, MT 59801 728-3210 or visit www.missoulamanor.com TTY Relay 711
Variety of Services • Mental Health Treatment • Medication Management • Therapy • Migraine Treatment • Weight Loss • Draw Site For Lab Corp • Genetic Testing • Transcranial Magnetic Stimulation Treatment • Nutraceuticals • Adolescents - Adults
406-721-2537 Tmsmontana.com • Alephmt.com 2685 Palmer St. Suite A Missoula
Memory Care
Footsteps Memory Care ®
We walk through the journey of memory loss with you providing genuine care and increasing support as the journey changes. Every day we embrace moments of success 3710 American Way, Missoula
(406) 273-0101 March/April 2016 ~ living well
33
Stepping into another's financial life: A daunting task
Eventually, your loved ones may need to help with your personal care (in case you become ill and need assistance) or handle your financial matters when you are no longer able to do so. The emotional impact they will suffer as a result of their loss will be compounded by the stress of dealing with the legal, financial and logistical aftermath. While it's never easy to step into another person's financial life, the task becomes infinitely more difficult when loved ones have to guess how things should be handled, or cannot find important information, such as bank and credit card accounts, health care proxies, wills and contact names and numbers. There are countless stories of families who did not talk about their end-of-life wishes and financial matters until it was too late. In fact, 90 percent of people say it's important to talk to loved ones about these issues, but only 27 percent have done so, according to the Conversation Project National Survey conducted in 2013.
Organization: An elixir in difficult times
By proactively planning, you can relieve your loved ones of the burden of having to piece together your financial life and guess as to how you want things handled. The process is not onerous - it simply involves gathering, consolidating and making the following information available: • I nsurance and beneficiary information • Key contacts, advisors, and executors • Financial information and accounts • Online accounts, memberships, and social networking identification • Location of important documents • Final arrangements and wishes If this list seems overwhelming, don't despair, help is available. The free, "What My Loved Ones Need to Know" planning guide booklet will help you organize your information and communicate what matters most to you - both now and in the future. This online resource is dynamic, so it can be updated as life evolves. You can also visit the Prepare your accounts. Share your wishes page on MassMutual.com for helpful articles on how you can share your plans or help loved ones with their planning. By resolving to take the time now to organize your financial world and document your care preferences and end-of-life wishes, you can provide an elixir to your loved ones that will make difficult times easier down the road. 34
living well ~ March/April 2016
MALLWALKERS FITNESS PROGRAM
GET FIT step by step Be a part of Missoula’s longest running free health program. Join us in Southgate Mall’s Community Room at 9 a.m. Mondays, Wednesdays and Fridays.
COME SEE WHAT’S
in store
SHOPSOUTHGATE.COM
March/April 2016 ~ living well
35
When Mom wasn’t feeling well, I knew who to call.
Anytime you’re worried about the health of a loved one, we’re here to help. Our free Nurse On Call telephone service gives you access to knowledgeable, registered nurses anytime, day or night. We’re your local, trusted resource to check symptoms fast. Call us at 406-327-4770.
36
24-7 Nurse On Call living 406-327-4770 well ~ March/April 2016
communitymed.org/nurse