Living Well November December 2018

Hospice & Pallative Care

NOVEMBER/DECEMBER 2018

A Publication of the November/December 2018 ~ living well

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A publication of the

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advertising sales Chris Arvish 406-523-5236 contributors AMERICAN HOSPICE FOUNDATION KAY JENNINGS, BSN, MHSA, MSN, PMHNP-BC NATIONAL INSTITUTE ON AGING kaiser health news

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 23,000 readers monthly who want health tips on fitness, nutrition, family, wellness, therapy and beauty.

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.

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november/december 2018 VOL. 49

IN THIS ISSUE eye health choosing a hospice

Page 3

ALSO IN THIS ISSUE

peptides

Page 6

health care directives

Page 7

caregivers & coaching

Page 10

late in life surprise Page 13 living wills Page 16

November/December 2018 ~ living well

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Choosing a hospice: 16 questions to ask From the American Hospice Foundation, americanhospice.org

Hospice is a set of services that we all may need someday – if not for ourselves, for our parents. While death is not an option for any of us, we do have choices about the services we use at the end of life. Hospice is undoubtedly the best option in the last months of life because it offers a whole variety of benefits, not only to those of us who are dying, but also to those we leave behind.

How do you find the most appropriate hospice? Until hospice quality data is readily and easily available to all of us, the experts at American Hospice Foundation have pulled together some tips for choosing the most appropriate hospice. Answers to these 4

living well ~ November/December 2018

questions will give you clues about quality of care and help you make an informed assessment.

What do others say about this hospice? Get references both from people you know and from people in the field – e.g., local hospitals, nursing homes, clinicians. Ask anyone that you have connections to if they have had experience with the hospice and what their impressions are. Geriatric care managers can be a particularly good resource, as they often make referrals to hospices and hear from families about the care that was provided.

Anecdote and word of mouth won’t paint a full

picture but they are still valuable data points.

How long has the hospice been in operation?

If it has been around for a while, that’s an indication of stability.

Is the hospice Medicare-certified? Medicare certification is essential if the patient is a Medicare beneficiary to permit reimbursement.

Is the hospice accredited, and if required, state-licensed? Accreditation (JCAHO or CHAP) is not required and not having it doesn’t mean a hospice isn’t good, but if the hospice has it, then you know a third party has looked at the hospice’s operations and determined they come up to a reasonable standard of care.

What is the expectation about the family’s role in caregiving? See if what the hospice expects from family members is consistent with what the family is able to do.

Are there limits on treatment currently being received? Is there anything currently being done for the patient that a hospice under consideration would not be able to do?

Can the hospice meet your specific needs?

Mention any concerns the family or patient have about care and ask the hospice staff how they will address those concerns.

Does the hospice offer extra services beyond those required? Some services fall in a gray area. They are not required by Medicare but may be helpful to improve the comfort of a patient. An example is radiation and/or chemotherapy for a cancer patient to reduce the size of a tumor and ameliorate pain. Some hospices would not be able to afford to do this but others with deeper pockets could.

How rapid is crisis response? If the family needs someone to come to the home at 3 a.m. on a Saturday, where would that person come from? What is their average response time?

What are the options for inpatient care?

Patients being cared for at home may need to go to an inpatient unit for management of complicated symptoms or to give their family respite. Facilities can vary from the hospice having its own private inpatient unit to leased beds in a hospital or nursing home. Visit the facilities to ensure that they are conveniently located and that you are comfortable with what they offer.

If the family caregiver gets really exhausted can we get respite care? Caring for someone with a serious illness can be exhausting and, at times, challenging. In addition to home hospice care and inpatient care when symptoms prove unmanageable at home, hospices also offer “respite” care (periodic breaks for the caregiver of up to 5 days during which the patient is moved to an inpatient bed) and “continuous” nursing care at home for brief periods at the patient’s home when family caregivers are unable to manage on their own. Ask the hospice under what conditions the hospice provides these types of care.

Are their MDs/RNs certified in palliative care? Not having it doesn’t mean the staff is not competent as experience counts for a lot but having this credential is an indication of specialized study in palliative medicine/ nursing.

How are patient/family concerns handled?

Is there a clear process for sharing concerns with appropriate hospice staff and making sure they are addressed, including a process for escalation if the concern is not adequately addressed at lower levels?

How does the hospice measure and track quality? You are not looking for a lot of technical detail, just a response that indicates that the hospice evaluates its own performance in order to improve it.

What are your general impressions at initial contact? What is your reaction to the people you talk to?

What kind of bereavement services does the hospice offer? Types of grief support can vary widely and may include individual counseling, support groups, educational materials and outreach letters. *** The authors, Naomi Naierman and Marsha Nelson, are the president and vice president, respectively, of the American Hospice Foundation. AHF closed its doors in June 2014 after nearly 20 years of improving access to quality hospice care through public education, professional training, and advocacy on behalf of consumers.

November/December 2018 ~ living well

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Peptides and all that Jazz

by Kay Jennings BSN, MHSA, MSN, PHMNP-BC, DPSc

Most Americans are clueless about what a peptide is and what it does. Few of us know that Dancing With the Stars lead dancer Maks had his dancing career placed on hold when he was 32 years old due to a significant groin injury.

With a traditional medical approach he had no improvement. Then he sought out Dr. Seeds who used peptide therapy on the injury and had Maks up dancing within 6 weeks.

Peptides are naturally occurring compounds that influence body composition, stage 3 sleep, bone density, muscle mass, immune function, sexual function, mass memory and cognition, cardiovascular capacity, endurance, weight loss and glucose utilization, to name a few.

Peptides signal a response and the body does the rest, unlike Human Growth Hormone (HGH) which causes an ongoing response, but our bodies are not designed to have a constant feed of growth hormone. Rather our bodies function better with 9 - 10 pulses per day of HGH and the largest pulse is with stage 3 sleep.

HGH is stored in the pituitary gland but it can’t be released in the older brain, thus all the decline in function as we age. Peptides help release growth hormone from the pituitary gland so the natural pulsing reoccurs.

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The Federal Regulations prohibit the use of Human Growth Hormone in anti-aging. So where should we look for help with the major problems of aging: muscle and skeletal loss and cognitive decline? Peptide therapy might be a good option. There are many different peptide combinations for various purposes so find a practitioner who has been trained in peptide therapy and give it a go. Who knows, you may be dancing before you know it!

Kay Jennings is a Kresser Institute ADAPT trained practitioner and is the owner of New Health, a Functional Medicine practice based in Missoula. In addition to providing in-office care for her patients, she also offers telemedicine appointments for clients across the State of Montana. She will complete comprehensive peptide therapy training in December 2018.

To learn more about Kay and her Functional Medicine practice, call 406 721 2537 or visit www.

NewHealthMontana.com.

Healthcare directives: what you need to know

Advance care planning is not just about old age. At any age, a medical crisis could leave you too ill to make your own healthcare decisions.

Even if you are not sick now, planning for health care in the future is an important step toward making sure you get the medical care you would want, if you are unable to speak for yourself and doctors and family members are making the decisions for you.

Many Americans face questions about medical treatment but may not be capable of making those decisions, for example, in an emergency or at the end of life. This article will explain the types of decisions that may need to be made in such cases and questions you can think about now so you’re prepared later. It can help you think about who you would want to make decisions for you if you can’t make them yourself. It will also discuss ways you can share your wishes with others. Knowing who you want to make decisions on your behalf and how you would decide might take some of the burden off family and friends.

What is advance care planning?

From the National Institute on Aging

Advance care planning involves learning about the types of decisions that might need to be made, considering those decisions ahead of time, and then letting others know—both your family and your healthcare providers—about your preferences. These preferences are often put into an advance directive, a legal document that goes into effect only if you are incapacitated and unable to speak for yourself. This could be the result of disease or severe injury—no matter how old you are. It helps others know what type of medical care you want.

An advance directive also allows you to express your values and desires related to endof-life care. You might think of it as a living document—one that you can adjust as your situation changes because of new information or a change in your health.

Medical research and advance care planning Research shows that advance directives can make a difference, and that people who document their preferences in this way are more likely to get the care they prefer at the end of life November/December 2018 ~ living well

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than people who do not.

Decisions that could come up Sometimes decisions must be made about the use of emergency treatments to keep you alive.

Doctors can use several artificial or mechanical ways to try to do this. Decisions that might come up at this time relate to: •CPR (cardiopulmonary resuscitation) •Ventilator use •Artificial nutrition (tube feeding) and artificial hydration (IV, or intravenous, fluids) •Comfort care CPR Cardiopulmonary resuscitation might restore your heartbeat if your heart stops or is in a life-threatening abnormal rhythm. It involves repeatedly pushing on the chest with force, while putting air into the lungs. This force has to be quite strong, and sometimes ribs are broken or a lung collapses. Electric shocks, known as defibrillation, and medicines might also be used as part of the process. The heart of a young, otherwise healthy person might resume beating normally after CPR. Often, CPR does

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living well ~ November/December 2018

not succeed in older adults who have multiple chronic illnesses or who are already frail.

Ventilator use Ventilators are machines that help you breathe. A tube connected to the ventilator is put through the throat into the trachea (windpipe) so the machine can force air into the lungs. Putting the tube down the throat is called intubation. Because the tube is uncomfortable, medicines are often used to keep you sedated while on a ventilator. If you are expected to remain on a ventilator for a long time, a doctor may perform a tracheotomy or “trach” (rhymes with “make”). During this bedside surgery, the tube is inserted directly into the trachea through a hole in the neck. For long-term help with breathing, a trach is more comfortable, and sedation is not needed. People using such a breathing tube are not able to speak without special help because exhaled air does not go past their vocal cords.

Artificial nutrition and hydration If you are not able to eat, you may be fed through a feeding tube that is threaded through

the nose down to your stomach. If tube feeding is still needed for an extended period, a feeding tube may be surgically inserted directly into your stomach. Hand feeding (sometimes called assisted oral feeding) is an alternative to tube feeding. This approach may have fewer risks, especially for people with dementia.

If you are not able to drink, you may be provided with IV fluids. These are delivered through a thin plastic tube inserted into a vein.

Artificial nutrition and hydration can be helpful if you are recovering from an illness.

However, studies have shown that artificial nutrition toward the end of life does not meaningfully prolong life. Artificial nutrition and hydration may also be harmful if the dying body cannot use the nutrition properly.

Comfort care Comfort care is anything that can be done to soothe you and relieve suffering while staying in line with your wishes. Comfort care includes managing shortness of breath; limiting medical testing; providing spiritual and emotional counseling; and giving medication for pain, anxiety, nausea, or constipation.

Getting started Start by thinking about what kind of treatment you do or do not want in a medical emergency.

It might help to talk with your doctor about how your current health conditions might influence your health in the future. For example, what decisions would you or your family face if your high blood pressure leads to a stroke? You can ask your doctor to help you understand and think through your choices before you put them in writing. Medicare or private health insurance may cover advance care planning discussions with your doctor.

If you don’t have any medical issues now, your family medical history might be a clue to help you think about the future. Talk with your doctor about decisions that might come up if you develop health problems similar to those of other family members.

In considering treatment decisions, your personal values are key. Is your main desire to have the most days of life? Or, would your focus

be on quality of life, as you see it? What if an illness leaves you paralyzed or in a permanent coma and you need to be on a ventilator? Would you want that?

What makes life meaningful to you? If your heart stops or you have trouble breathing, would you want to undergo life-saving measures if it meant that, in the future, you could be well enough to spend time with your family? Would you be content if the emergency leaves you simply able to spend your days listening to books on tape or gazing out the window?

But, there are many other scenarios. Here are a few. What would you decide?

If a stroke leaves you unable to move and then your heart stops, would you want CPR? What if you were also mentally impaired by a stroke— does your decision change?

What if you are in pain at the end of life? Do you want medication to treat the pain, even if it will make you more drowsy and lethargic?

What if you are permanently unconscious and then develop pneumonia? Would you want antibiotics and to be placed on a ventilator?

For some people, staying alive as long as medically possible, or long enough to see an important event like a grandchild’s wedding, is the most important thing. An advance directive can help to make that possible. Others have a clear idea about when they would no longer want to prolong their life. An advance directive can help with that, too.

Your decisions about how to handle any of these situations could be different at age 40 than at age 85. Or, they could be different if you have an incurable condition as opposed to being generally healthy. An advance directive allows you to provide instructions for these types of situations and then to change the instructions as you get older or if your viewpoint changes.

Many people are unprepared to deal with the legal and financial consequences of a serious illness such as Alzheimer’s disease. Advance planning can help people with Alzheimer’s and their families clarify their wishes and make well-informed decisions about health care and financial arrangements.

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Lynne Shallcross/KHN

Marie Fanning (left) sits next to her husband, Bill, during the Just Us program at the National Gallery of Art in Washington, D.C., on March 5.

Marie, who has Alzheimer’s disease, and Bill are regular attendees at the program.

Family caregivers get a break and coaching

By Mindy Fetterman Photos by Lynne Shallcross, Kaiser Health News

WASHINGTON — For today, there are no doctor’s visits. No long afternoons with nothing to do. No struggles over bathing — or not.

At the National Gallery of Art in Washington, D.C., a group of older adults — some in wheelchairs, some with Alzheimer’s — and their caregivers sit in a semicircle around a haunting portrait of a woman in white.

“Take a deep breath,” said Lorena Bradford, head of accessible programs at the National Gallery, standing before “The Repentant Magdalen” by Georges de La Tour.

“Now, let your eyes wander all over the painting. Take it all in. What do you think is going on?”

“I think she looks sad,” said Marie Fanning, 10

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75, of Alexandria, Va., an Alzheimer’s patient.

“Yes. Yes, she looks sad,” said Bradford.

“This is such a gift,” Bill Fanning, 77, Marie’s husband and caregiver, said of the outing.

Across the country, community groups, hospitals, government agencies and nonprofits are doing more to support at least some of the estimated 42 million people who are the primary caregivers of adults and children who have disabilities, are recovering from surgeries and illnesses or are coping with Alzheimer’s and other chronic diseases. The National Gallery’s program is part of the trend focusing on the health, wellbeing and education of caregivers.

“We know that involvement with art improves well-being. In our own research for

persons with dementia, we see a reduction in apathy. For caregivers, we see less isolation and a reduction in stress,” said Carolyn Halpin-Healy, executive director of the Arts & Minds program for caregivers and patients at the Metropolitan Museum of Art in New York.

She co-founded the program with Columbia University neurologist James Noble in 2010 at the Harlem Studio Museum in New York. The Just Us program in Washington is a spinoff of that program. Other museums in New York and Dubuque, Iowa, have similar programs.

A new bipartisan law signed by President Donald Trump in January calls for a national strategy to address the needs of caregivers, who are primarily women and provide 37 billion hours in unpaid care to relatives or close friends valued at $470 billion, according to an AARP study. The law will require the Department of Health and Human Services to set up an advisory council and develop a blueprint for government action on financial, workplace, respite care and other caregiver issues.

At the same time, 42 states have passed laws requiring hospitals and other nursing facilities to provide training for caregivers who perform medical tasks, and to record them as the “caregiver” when patients are admitted or released from hospitals or nursing facilities.

In states without that law Alabama, Florida, Georgia, Idaho, South Carolina, South Dakota, Vermont and Wisconsin (Kansas’ law takes effect in July) — patients can be dismissed from the hospital without family members being told or briefed fully on what care the patient needs.

The CARE Act is “more than just a law,” said Elaine Ryan, AARP vice president of state advocacy and strategy. “It’s a change in the practice of health care.”

Helping the helpers Caregivers are almost two times more likely to have emotional and physical problems, and three times more likely to have productivity problems at work, according to a 2015 study by Johns Hopkins. The more intense the care, the greater the effects, the study said.

Dr. Eric Coleman, a gerontologist who received a MacArthur “genius award” grant in 2012, created the Care Transitions Intervention

model (CTI). The national program based at the University of Colorado in Denver trains coaches to help caregivers transition their patient to home care. The coaches are usually social workers, nurses or others hired by hospitals and other facilities to work directly with caregivers.

Coaches talk to the caregiver before patients are discharged from a hospital. Then they have a one-hour coaching session at the patient’s home, and three follow-up phone calls. Studies have shown that having transition coaches can drop readmission to hospitals by 20 to 50 percent, said Coleman.

Even if a caregiver is with the patient when doctors give instructions, the medical talk can go right over their heads, he said. “We tell people that for the next 24 to 48 hours, here are key things you need to do. Then we follow up at home,” he said.

Caregivers do more than make meals; they perform medical tasks like giving medicine, taking blood pressure, changing bandages and more. Yet they receive virtually no training, Coleman said.

“I’m a physician, and when I take care of my mom, I have an endless loop in my head,” of the to-do list, he said.

A study by AARP found that 46 percent of family caregivers perform medical/nursing tasks, 78 percent of family caregivers manage medications, and 53 percent of family caregivers serve as care coordinators. The majority said they received no training.

Caregivers are “the backbone of our health system,” said Dr. Alan Stevens, a gerontologist who trains caregivers in partnership with Baylor Scott White, the largest nonprofit hospital company in Texas, and a group of aging agencies across the state.

“If caregivers go away, we have a problem. It’s important to better understand their needs — and to help them.”

Linking hospitals with caregivers Dignity Health Systems, the largest nonprofit hospital company in California, is partnering with the nonprofit Santa Barbara Foundation to provide caregiver coaches. At any given time, 1,000 caregivers are being coached, said Kathleen Sullivan, vice president of acute care services for November/December 2018 ~ living well

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Dignity.

“Now caregivers are identified as a partner in the health team” of the patient, she said.

“They’re given a badge, they have a tote bag with information, and the hospital knows who to contact.”

The group works with nonprofit aging agencies to provide in-home coaches, she said.

“When people get home from the hospital, they’re just exhausted. They don’t remember what they were told in the hospital.”

In Virginia, the Bay Area Council on Aging and a consortium of four other groups and five hospitals are training caregiver coaches using the CTI program. The key to successful coaching of caregivers is to take training to the homes of caregivers and patients, said Kathy Vesley, of the Bay Area Council on Aging in Fredericksburg, Va. “Some of these folks are very ill and they’re managing 12-plus medications,” said Vesley.

“You get into the home and they say, ‘Here’s my shopping bag of medicines.’ And it’s literally a shopping bag.”

The consortium has seen 26,000 patients and caregivers over the past 20 years and readmission

to the hospitals fell from 23.4 to 9 percent, she said. Coaches help with food, medicine and video training for how to do medical procedures and help solve issues like how to get patients to doctor’s appointments.

Out in rural southeastern Virginia, “transportation takes a whole new meaning,” she said, “when your driveway is half a mile long.”

Having fun helps, too Caregivers need a little fun and relaxation, said Jason Resendez, executive director of the Latinos Against Alzheimer’s Coalition. About 8 million Latinos are caregivers for their family members, and nearly 2 million are caring for family members with Alzheimer’s, he said.

For instance, in Los Angeles, Latino groups partnered on a play performed in Spanish about a son who is his mother’s caregiver. It was a comedy. And in Chicago, the Latino Alzheimer’s and Memory Disorders Alliance (LAMDA) holds caregiver training — and free salsa dancing classes.

“It’s not just about translation; it’s not just about handing out pamphlets,” he said.

Living Well

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A late-life surprise:

Taking care of frail, aging parents

By Judith Graham, Kaiser Health News

“This won’t go on for very long,” Sharon Hall said to herself when she invited her elderly mother, who’d suffered several small strokes, to live with her.

That was five years ago, just before Hall turned 65 and found herself crossing into older age.

In the intervening years, Hall’s husband was diagnosed with frontotemporal dementia and forced to retire. Neither he nor Hall’s mother, whose memory had deteriorated, could be left alone in the house. Hall had her hands full taking care of both of them, seven days a week.

As life spans lengthen, adult children like Hall in their 60s and 70s are increasingly caring for frail, older parents — something few people plan for.

“When we think of an adult child caring for a parent, what comes to mind is a woman in her late 40s or early 50s,” said Lynn Friss Feinberg, senior strategic policy adviser for AARP’s Public Policy Institute. “But it’s now common for people 20 years older than that to be caring for a parent in their 90s or older.”

A new analysis from the Center for Retirement Research at Boston College is the November/December 2018 ~ living well

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first to document how often this happens. It found that 10 percent of adults ages 60 to 69 whose parents are alive serve as caregivers, as do 12 percent of adults age 70 and older.

The analysis is based on data from 80,000 interviews (some people were interviewed multiple times) conducted from 1995 to 2010 for the Health and Retirement Study. About 17 percent of adult children care for their parents at some point in their lives, and the likelihood of doing so rises with age, it reports.

That’s because parents who’ve reached their 80s, 90s or higher are more likely to have chronic illnesses and related disabilities and to require assistance, said Alice Zulkarnain, coauthor of the study.

The implications of later-life caregiving are considerable. Turning an elderly parent in bed, helping someone get into a car or waking up at night to provide assistance can be demanding on older bodies, which are more vulnerable and less able to recover from physical strain.

Emotional distress can aggravate this vulnerability. “If older caregivers have health

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living well ~ November/December 2018

problems themselves and become mentally or emotionally stressed, they’re at a higher risk of dying,” said Richard Schulz, a professor of psychiatry at the University of Pittsburgh, citing a study he published in the Journal of the American Medical Association.

Socially, older caregivers can be even more isolated than younger caregivers. “In your 60s and 70s, you may have recently retired and friends and family members are beginning to get sick or pass away,” said Donna Benton, research associate professor of gerontology and director of the Family Caregiver Support Center at the University of Southern California.

Caregiving at an older age can put hardearned savings at risk with no possibility of replacing them by re-entering the workforce.

Yvonne Kuo, a family care navigator at USC’s caregiver support center, has been helping an 81-year-old woman caring for her 100-yearold mom with vascular dementia in this situation.

“There’s no support from family, and she’s used up her savings getting some paid help. It’s very hard,” Kuo said.

Judy Last, 70, a mother of three adult children and grandmother of six youngsters, lives with her mother, Lillian, 93, in a mobile home park in Boise, Idaho. Last moved in three years ago, after her mother had a bout of double pneumonia, complicated by a difficultto-treat bacterial infection that put her in the hospital for eight weeks.

“You don’t know if it’s going to be permanent at the time,” said Last, whose father died of dementia in January 2016 after moving to a memory care facility. “Mom had asked me several years before if I would be there when she needed help and I told her yes. But I didn’t really understand what I was getting into.”

Feinberg said this isn’t uncommon. “People in their 90s with a disability can live for years with adequate support.”

Last doesn’t find caregiving physically difficult even though she’s had two hip replacements and struggles with arthritis and

angina. Her mother has memory problems and chronic obstructive pulmonary disease, relies on oxygen, uses a walker, has lost most of her hearing and has poor eyesight.

But things are hard, nonetheless. “I had plans for my retirement: I imagined volunteering and being able to travel as much as my bank account would allow,” Last said. “Instead, I don’t take time off and leave my mother. A big thing I deal with is the loss of my freedom.”

Hall, who’s turning 70 in September and who lives in Cumming, Ga., managed her mother’s and husband’s complex needs for years by establishing a strict routine. Monday and Friday they went to a dementia respite program from 10 a.m. to 3 p.m. On other days, Hall cooked, shopped, did laundry, helped them with personal tasks, made sure they were well occupied, provided companionship and drove them to medical appointments, as necessary.

“I did not expect this kind of life,” said Hall, who has had two knee replacements and a broken femur. “If someone had told me it would be years caring for my mother and your husband is going to get dementia, I would have said ‘No, just no.’ But you do what you have to do.”

A few weeks after our conversation, Hall’s mother entered hospice following a diagnosis of aspiration pneumonia and life-threatening swallowing difficulties. Hall said she has welcomed the help of hospice nurses and aides, who ask her at each visit, “Is there anything else you need from us that would make it easier for you?”

Though older caregivers get scant attention, resources are available. Over the years, Hall has shared caregiving ups and downs at CareGiving.com — a significant source of information and comfort. Across the country, local chapters of Area Agencies on Aging run caregiver support programs, as do organizations such as the Caregiver Action Network, the Family Caregiver Alliance, the National Alliance for Caregivingand Parenting Our Parents, an outfit focused on adult children who become caregivers.

Sometimes, caring for a parent can be a decades-long endeavor. In Morehead City, N.C., Elizabeth “Lark” Fiore, 67, became the primary caregiver for her parents when they moved around the corner from her, in a mobile home park, in 1999. “My dad took me for a walk one day and asked if I could look after them as they got older and I said yes.

I’m the oldest child and the oldest assumes responsibility,” she said.

For years her father — a difficult man, by Fiore’s account — had heart problems; her mother had a nervous breakdown and a slow, extended recovery. “They wanted me to be in their lives and I wanted to do for them — I’m a Christian — but it was killing me. My heart was in the right place but emotionally, I was a wreck,” Fiore said.

After her father’s death from kidney cancer in 2010, her mother became even more needy and Fiore found herself spending more time responding to calls for assistance — often about suspected medical emergencies. “My mom had a way of acting as if something was horribly wrong and then it turned out it wasn’t,” she explained.

Fiore’s health isn’t good: She says she has chronic fatigue syndrome and thyroid problems, among other issues. But she didn’t know how to ask for help and no one volunteered it, even when her husband, Robert, was diagnosed six years ago with dementia. “I always expected myself to handle everything,” she said.

Finally, the stress became unbearable last year and Fiore’s mother moved to a senior living community close to Fiore’s 62-year-old sister, 400 miles away. Now, Fiore spends more time attending to her husband’s needs and tries to support her sister as best she can.

“At 90, my mom is healthy as a horse, and I’m glad of that but it’s been a long time caring for her,” she said. “I’ve changed a lot as a result of caregiving: I’m more loving, more aware of people who are suffering. I’ve found out that I am willing to go the extra mile. But I have to admit what I feel is tired — just tired.”

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That ‘living will’ you signed?

At the ER, it could be open to interpretation

By Judith Graham, Kaiser Health News

“Don’t resuscitate this patient; he has a living will,” the nurse told Dr. Monica Williams-Murphy, handing her a document.

Williams-Murphy looked at the sheet bearing the signature of the unconscious 78-year-old man, who’d been rushed from a nursing home to the emergency room. “Do everything possible,” it read, with a check approving cardiopulmonary resuscitation.

The nurse’s mistake was based on a misguided belief that living wills automatically include “do not resuscitate” (DNR) orders.

Working quickly, Williams-Murphy revived the patient, who had a urinary tract infection and recovered after a few days in the hospital.

Unfortunately, misunderstandings 16

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involving documents meant to guide endof-life decision-making are “surprisingly common,” said Williams-Murphy, medical director of advance-care planning and end-oflife education for Huntsville Hospital Health System in Alabama.

But health systems and state regulators don’t systematically track mix-ups of this kind, and they receive little attention amid the push to encourage older adults to document their end-of-life preferences, experts acknowledge.

As a result, information about the potential for patient harm is scarce.

A new report out of Pennsylvania, which has the nation’s most robust system for monitoring patient safety events, treats

mix-ups involving end-of-life documents as medical errors — a novel approach. It found that in 2016, Pennsylvania health care facilities reported nearly 100 events relating to patients’ “code status” — their wish to be resuscitated or not, should their hearts stop beating and they stop breathing. In 29 cases, patients were resuscitated against their wishes. In two cases, patients weren’t resuscitated despite making it clear they wanted this to happen.

The rest of the cases were “near misses” — problems caught before they had a chance to cause permanent harm.

Most likely, this is an undercount, said Regina Hoffman, executive director of the Pennsylvania Patient Safety Authority, adding that she was unaware of similar data from any other state.

Asked to describe a near miss, Hoffman, co-author of the report, said: “Perhaps I’m a patient who’s come to the hospital for elective surgery and I have a DNR (do not resuscitate) order in my [medical] chart. After surgery, I develop a serious infection and a resident [physician] finds my DNR order. He assumes this means I’ve declined all kinds of treatment, until a colleague explains that this isn’t the case.”

The problem, Hoffman explained, is that doctors and nurses receive little, if any, training in understanding and interpreting living wills, DNR orders and Physician Orders for LifeSustaining Treatment (POLST) forms, either on the job or in medical or nursing school.

Communication breakdowns and a pressure-cooker environment in emergency departments, where life-or-death decisions often have to be made within minutes, also contribute to misunderstandings, other experts said.

Research by Dr. Ferdinando Mirarchi, medical director of the department of emergency medicine at the University of Pittsburgh Medical Center Hamot in Erie, Pa., suggests that the potential for confusion surrounding end-of-life documents is widespread. In various studies, he has asked medical providers how they would respond to

hypothetical situations involving patients with critical and terminal illnesses.

In one study, for instance, he described a 46-year-old woman brought to the ER with a heart attack and suddenly goes into cardiac arrest. Although she’s otherwise healthy, she has a living will refusing all potentially lifesaving medical interventions. What would you do, he asked more than 700 physicians in an internet survey?

Only 43 percent of those doctors said they would intervene to save her life — a troubling figure, Mirarchi said. Since this patient didn’t have a terminal condition, her living will didn’t apply to the situation at hand and every physician should have been willing to offer aggressive treatment, he explained.

In another study, Mirarchi described a 70-year-old man with diabetes and cardiac disease who had a POLST form indicating he didn’t want cardiopulmonary resuscitation but agreeing to a limited set of other medical interventions, including defibrillation (shocking his heart with an electrical current).

Yet 75 percent of 223 emergency physicians surveyed said they wouldn’t have pursued defibrillation if the patient had a cardiac arrest.

One issue here: Physicians assumed that defibrillation is part of cardiopulmonary resuscitation. That’s a mistake: They’re separate interventions. Another issue: Physicians are often unsure what patients really want when one part of a POLST form says “do nothing” (declining CPR) and another part says “do something” (permitting other interventions).

Mirarchi’s work involves hypotheticals, not real-life situations. But it highlights significant practical confusion about end-oflife documents, said Dr. Scott Halpern, director of the Palliative and Advanced Illness Research Center at the University of Pennsylvania’s Perelman School of Medicine.

Attention to these problems is important, but shouldn’t be overblown, cautioned Dr. Arthur Derse, director of the center for bioethics and medical humanities at the Medical College of Wisconsin. “Are there errors July/August 2018 ~ living well

17

of misunderstanding or miscommunication?

Yes. But you’re more likely to have your wishes followed with one of these documents than without one,” he said.

Make sure you have ongoing discussions about your end-of-life preferences with your physician, surrogate decision-maker, if you have one, and family, especially when your health status changes, Derse advised.

Without these conversations, documents can be difficult to interpret. [partner-box] Here are some basics about end-of-life documents: Living wills. A living will expresses your preferences for end-of-life care but is not a binding medical order. Instead, medical staff will interpret it based on the situation at hand, with input from your family and your surrogate decision-maker.

Living wills become activated only when a person is terminally ill and unconscious or in a permanent vegetative state. A terminal illness is one from which a person is not expected to recover, even with treatment — for instance, advanced metastatic cancer.

Bouts of illness that can be treated — such as an exacerbation of heart failure — are “critical” not “terminal” illness and should not activate a living will. To be activated, one or two physicians have to certify that your living will should go into effect, depending on the state where you live.

DNRs. Do-not-resuscitate orders are binding medical orders, signed by a physician. A DNR order applies specifically to cardiopulmonary resuscitation (CPR) and directs medical personnel not to administer chest compressions, usually accompanied by mouth-to-mouth resuscitation, if someone stops breathing or their heart stops beating.

The section of a living will specifying that you don’t want CPR is a statement of a preference, not a DNR order.

A DNR order applies only to a person who has gone into cardiac arrest. It does not mean that this person has refused other types 18

living well ~July/August 2018

of medical assistance, such as mechanical ventilation, defibrillation following CPR, intubation (the insertion of a breathing tube down a patient’s throat), medical tests or intravenous antibiotics, among other measures.

Even so, DNR orders are often wrongly equated with “do not treat” at all, according to a 2011 review in the Journal of General Internal Medicine.

POLST forms. A POLST form is a set of medical orders for a seriously ill or frail patient who could die within a year, signed by a physician, physician assistant or nurse practitioner.

These forms, which vary by state, are meant to be prepared after a detailed conversation about a patient’s prognosis, goals and values, and the potential benefits and harms of various treatment options.

Problems have emerged with POLST’s increased use. Some nursing homes are asking all patients to sign POLST forms, even those admitted for short-term rehabilitation or whose probable life expectancy exceeds a year, according to a recent article authored by Charlie Sabatino, director of the American Bar Association Commission on Law and Aging.

Also, medical providers’ conversations with patients can be cursory, not comprehensive, and forms often aren’t updated when a patient’s medical condition changes, as recommended.

“The POLST form is still relatively new and there’s education that needs to be done,” said Amy Vandenbroucke, executive director of the National POLST Paradigm, an organization that promotes the use of POLST forms across the U.S. In a policy statement issued last year and updated in April, it stated that completion of POLST forms should always be voluntary, made with a patient’s or surrogate decisionmaker’s knowledge and consent, and offered only to people whose physician would not be surprised if they die within a year.

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