A life-or-death decision by Maplewood paramedics, who stopped life support for an elderly woman at her husband’s insistence, underscores why individuals should have legal documents spelling out the care they want in what can be frantic and confusing end-of-life emergencies, health officials said Wednesday.
Paramedics and nursing home workers across Minnesota can relate to the difficult decision that was made Aug. 7, when medics initially revived 71-year-old Linda Sandhei and started wheeling her to an ambulance, only to have the woman’s husband tell them to stop, according to a police report of the incident. Sandhei died soon after.
Advance directives and do-not-resuscitate (DNR) orders can provide clear guidance for such high-stress decisions. But absent those documents, medics are often asked to trust relatives who are distraught and may not know the wishes of their dying loved ones, said Dr. Jeffrey Ho, medical director for Hennepin County Medical Center’s emergency management services (EMS).
“What we’re trying to avoid is some random person coming up to us and saying, ‘Stop, I don’t want Mabel resuscitated!’ And we ask, ‘Well, who are you?’ and he says, ‘Oh, I’m her son,’ ” Ho said. “We have no way of verifying if that’s true or not, and we really have no way of verifying whether Mabel would actually want to be resuscitated or not.”
Research has shown that patients’ wishes are followed more often when spelled out in advance directives, and that relatives suffer less stress and anxiety. But such documents remain uncommon, even after a coordinated campaign called Honoring Choices by Minnesota’s eight major health care systems to get more people to complete them. The state’s top system had completed directives from just 32 percent of its elderly outpatients, according to a study last year.
Sandhei, who had suffered from Parkinson’s disease for two decades, either hadn’t completed a directive or didn’t have one filed with the Good Samaritan nursing home in Maplewood. She was transferred there in July after being admitted to Regions Hospital, according to a police report.
Her son was at her bedside around 4 p.m. Aug. 7 when she vomited in her sleep and stopped breathing. Sandhei’s husband, Tom, arrived later and stopped the medics from loading his wife in an ambulance for transfer to a hospital. He declined to discuss the incident when reached by phone Wednesday.
Written directives aren’t always the final word in a high-stress situation when someone is dying and relatives are angry or scared. Paramedic Mike Trullinger has tried to follow DNR orders for dying patients only to be threatened by distraught relatives with lawsuits, a baseball bat and, in one rural case, a shotgun pointed at him.
“The patient had a DNR order, but the family member had a shotgun. So we performed CPR anyway,” said Trullinger, now a supervisor for HCMC’s EMS. A sheriff’s deputy eventually arrived and the man put down the weapon and became apologetic, Trullinger said. CPR failed.
Ho said his medics, too, have experienced tough situations even when patients had written documents. Sometimes the document might be improperly dated or lack a doctor’s signature, calling it into question. Other times relatives are scrambling to dig up the document from files while medics are proceeding with CPR.
Frequently, relatives who thought they were prepared to see a loved one die have a change of heart when the moment arrives.
Regardless, Ho said having that paperwork completed resolves more confusion than it creates and leaves people feeling confident in their end-of-life decisions.
“It’s a very difficult decision to be making in a split second with limited information,” he said. “It’s tough to be second-guessed afterward.”
Err on the side of life
The Maplewood Fire Department policy manual instructs medics to follow written orders but otherwise pursue resuscitation: “Until properly completed orders are presented, pre-hospital personnel will assume that no valid DNR orders exist and proceed with standing orders for resuscitation as medically indicated.”
A Hennepin County protocol governing HCMC, North Memorial, Allina, Ridgeview and Edina EMS agencies provides similar advice.
“If we are going to start a resuscitation, we need to do it right then and there,” Ho said. “If the information is not clear to us, then we are erring on the side of starting resuscitation, because we can always stop it later.”
Nursing home workers operate under similar assumptions, said Patti Cullen of Care Providers of Minnesota, a trade group for nursing homes. “From a legal perspective, we advise our members that without the presence of this DNR that is signed, that’s official, they’ve got to do every lifesaving measure, because families will sue if you don’t save a life. They won’t sue if you break ribs because you did CPR.”
The fact that the Maplewood medics halted life support in the absence of a written directive for Sandhei suggested to Ho and Cullen that they had enough information from the relatives or nursing home staff to override the bias toward continuing lifesaving efforts.
Maplewood police made no arrests in the case after an investigation concluded that the medics acted in “good faith.” The term is defined in the state’s advance-directive statute as acting in the best interests of a patient in any way short of assisted suicide.
Six Maplewood firefighters, including the chief, were suspended after a complaint was filed, but city officials declined to confirm whether the complaint was linked to Sandhei.
Cullen sympathized with the relatives and first responders, who she said appeared to act in the best interests of the family and patient.
“You know, the reason for doing that legal document,” she said, “is to get all of the family members on the same page.”
These days it’s common to openly discuss topics that past generations would have considered rude, such as sex, money, politics and religion. Death on the other hand, particularly one’s own, often remains a conversational taboo for many, though it’s probably one of the most important discussions to be had with those closest to us.
In this state, some people are taking that final topical frontier out of the humidor with death cafes and advanced directives. Some also are taking action with Compassion & Choices, the organization now working with residents in Washington, Vermont and Oregon who choose physician assisted suicide (PAS) when they are diagnosed with fewer than six months to live and no reprieve in sight. Former Washington Governor Booth Gardner led the voter initiative that legalized PAS in this state in 2008, as he faced his own demise from Parkinson’s disease.
Only a small number of people in Washington have taken advantage of the law since its passage. One of them, islander Greg Smith, followed through on his choice on July 27, peacefully surrounded by loved ones. Smith was a long-time advocate of death with dignity and, in an effort to enlighten others, he recorded a conversation with his friend, Lin Noah, on a Voice of Vashon episode of Island Crossroads about two weeks before his final going away party.
Smith was candid in telling the story of his battle with lung cancer, which returned “with a vengeance” two years ago. In May of this year, his doctors told him there was nothing more they could do and that he had two to six months to live. Smith said his decision to take his own life had germinated well before that — at his initial diagnosis.
“I’d seen friends and family members leave this mortal coil with the disease,” he explained, “and realized that was not the end I wanted for myself.”
To offer a chance for family and friends to say goodbye, Smith organized a party for the night before he was to drink his final cocktail.
To assure that key friends and family could attend, “I had to schedule my suicide around other people’s vacations,” he said laughing. He added that he chose a date just three months after his final diagnosis because he didn’t want his sons to go through the final stages of lung cancer with him.
Smith’s sons, ages 31 and 28, spent considerable time working with him to accept his early demise – Smith was only 61 – and respect his wishes for a peaceful passage. Smith called his choice an opportunity to “stand up with dignity, face cancer and embrace my sons one last time,” rather than dwindle from life in small and excruciating increments.
Snubbing his nose at cancer, Smith said he chose PAS to take control of his life away from the disease and end it on his own terms. Smith had written on a national PAS blog for some time, urging people in other states to have the freedom to choose. One reader took his impassioned diary to the American Medical Association’s (AMA) national convention. The follow-up report was that the AMA’s ethics committee reviewed Smith’s diary with fresh eyes, generating hope that the association might reconsider their opposition to PAS.
To those who would wonder if he might change his mind, Smith said he didn’t want to continue “playing roulette” with the end of his life and that he was ready to say goodbye. He added that with the awareness of death’s imminence, he felt he had used his time well, deepening important relationships.
Some would say doctors have been behind the curve in the move toward choices at the end of life. Naturopath Brad Lichtenstein leads so-called death cafes in Seattle, where people gather over coffee to address the inevitable, honestly and in a safe environment. He has stated that while most physicians eschew heroic measures at the end of their own lives in favor of dying quietly at home, they often implement every available life-prolonging tool for their patients.
“For a physician, when a patient dies, they’ve failed,” he explained.
Statistics show that more money is spent in the last months of life on extra measures that often will not prolong life at all. But, in the absence of a living will or advance directives, doctors will do everything possible to keep a patient technically alive.
Lichtenstein’s death cafes, the growth in the number of palliative care physicians and the entry of hospice care into the mainstream all herald changes in the end-of-life field. Soon, islanders will have access to a program to assist in the process of identifying preferences and creating advance directives for end of life before it is imminent. Called Honoring Choices, it is based on a model that originated in Lacrosse, Wisconsin, and will be offered by nurse practitioner Wendy Noble, and Carol Spangler, who has a graduate degree in public health. The two will offer facilitation services to families free of charge.
Noble and Spangler will host a presentation on Thursday by Bernard “Bud” Hammes, Ph.D., the medical ethicist who developed and directs the Wisconsin program (Respecting Choices). Hammes, an international leader in the field of end of life issues and advance care planning, has been featured on NPR, ABC’s Good Morning America, CBS Sunday Morning, NBC Rock Center and, most recently, on the PBS program, “Caring for Mom and Dad.”
He will appear with, among others, representatives from Honoring Choices Pacific Northwest, the Snohomish County Health Leadership Coalition and the Whatcom Alliance for Health Advancement, two organizations that have successfully implemented the program in their communities.
The presentation, according to Noble and Spangler, will provide specifics on what advance care planning means, why it’s important and what’s happening in the state to help people develop advance care plans.
What the two say they hope to do on Vashon is two-tiered. Their first step is to train others in the process of facilitating Honoring Choices.
“With a trained team,” said Noble, “we’ll begin small group conversations about advance directives and provide appropriate documents and instructions for completing and filing those directives.”
And when invited, they’ll meet with individuals and their families to help clarify their wishes for end of life health care.
As Spangler noted, “Determining and sharing end of life choices is a process. It’s a difficult discussion to start with one’s family.”
She and Noble say they are committed to helping Island residents start those discussions and share their decisions.
Professionals in the “death trade,” as it’s often referred to, agree that discussions of death and dying are really about living. With the implementation of this program, it appears that Vashon will soon be a place where people are ready to lead both the exploration and the conversation.
When it comes to planning for end-of-life health care, the first impulse for many people is to avoid the topic. End of life is something many of us would prefer not to think about. But considering your wishes, and documenting them, is one of the most important things you can do.
That’s partly because we all have a different idea of what constitutes the best amount and type of care, and where we want to receive that care. For example, my idea of a good death is one that is not preceded by too many intensive medical interventions. I am influenced in that decision by my work as a doctor, and by my extensive experience with elder care.
Others may want the option of more procedures. Some people want to die at home if possible, while others are comfortable with hospital or hospice care outside the home. People make these decisions based on many factors, including their own desires and beliefs about death, what they think will be easiest for their loved ones, financial circumstances and religious beliefs.
Unfortunately, far too many people don’t make these decisions at all — not even informally. They don’t share their wishes with loved ones. According to The Conversation Project, an organization dedicated to helping people talk about end-of-life care, 90 percent of people say that talking to their loved ones about end-of-life care is important, but only 27 percent have actually done so. As a result, family members often must make multiple health decisions for their seriously ill loved ones without guidance. My husband and I are both doctors, and we’ve seen elderly people — who are unable to make their own decisions — undergo significant, invasive procedures because whoever has control over their health care can’t accept that their loved one is dying, or they fear making the wrong decision.
To avoid such an outcome, I strongly recommend that you make decisions now — whatever your age — and put them in writing in the form of advance directives. These are legal documents that outline your wishes for end-of-life care. Make sure to discuss your wishes with your loved ones and your doctor.
DOCUMENTING YOUR WISHES
The term “advance directives” refers to three documents that can help make your end-of-life choices clear and legally actionable.
1. Durable Medical Power of Attorney for Health Care: This gives someone of your choosing the power to make medical decisions for you if you are too sick to make them yourself. This person must be over age 18 and available and willing to act on your behalf in healthcare-related matters. It is important to have end-of life conversations with this person. (A durable power of attorney for finances is a separate document and can be given to the same or a different person).
2. Living Will or Directive to Physicians: This document states a person’s decision to refuse life-sustaining medical treatment if that person has a terminal illness or injury that leaves him or her permanently unconscious. The directive lets your doctors withhold or stop life-sustaining treatment. Living wills do not apply when medical conditions are not life-threatening. Living wills tend to be very simple, which can limit their usefulness in complicated medical situations.
3. The Washington State Physician Orders for Life Sustaining Treatment (POLST) form is important for residents of Washington state who have an advanced, life-limiting illness and want to limit health care interventions. It’s usually supplied by your medical provider and completed during an office visit. You and your doctor, nurse practitioner, or physician-assistant-certified must sign the document after making specific choices about cardiac resuscitation, respiratory support, use of antibiotics and use of artificially-provided nutrition. The form then constitutes medical orders that guide your medical team in life and death situations. It becomes effective immediately, but if you change your mind about the decisions you’ve made, you can tear it up and it is no longer legal. If you live at home, post this form where paramedics can find it easily such as on the front of the refrigerator, back of the bedroom door, on a bedside table or in a medicine cabinet.
I’ve spoken with patients about why they put off creating these documents. Most often, they simply haven’t set aside time. Sometimes, they fear that signing them means they won’t get treatment when they want it. This is not true. If you state that your goal is to live as long as possible, you will get every intervention. People also worry that if they give someone durable power of attorney for health care, they will immediately lose control of their choices. But this power of attorney only activates if you are unable to speak for yourself. In reality, you lose control when you don’t express your wishes and leave all the decisions to others.
I was recently caring for an elderly patient with a new diagnosis of cancer. I looked back over several years of office visits and saw that we had had three conversations on the topic of advanced directives but he was never ready to make those decisions. I knew my patient could become very ill in the weeks ahead, so we started the conversation anew. We completed the POLST form, and he and his son agreed that they would complete the other documents that week. It felt good to have an honest conversation about my patient’s fears and desires, and to know that his son and medical providers will be able to honor his wishes.
I believe that most people in this country don’t end their lives in the way they would choose. That situation could be very different if we all take the time to share our preferences with our doctors and the important people in our lives.
RESOURCES
Most people aren’t aware of the options for end-of-life care. These resources are helpful in beginning a conversation and making choices.
The Conversation Project has a free starter kit, downloadable from its website, that can help you gather your thoughts and consider how best to have this conversation with loved ones. Find it at theconversationproject.org.
The Washington State Medical Association’s “Know Your Choices, Ask Your Doctor” campaign can provide both forms and guidance. Go to wsma.org or call 1-800-552-0612.
The American Bar Association offers a starter kit for talking about these issues. Go to americanbar.org and enter “Consumer Tool Kit for Health Care Advance Planning” in the search box.
Hospice of Kitsap County offers a Living Will resource called Five Wishes. Order copies at hospicekc.org.
Your doctor’s office is also an excellent place to ask for more information about advance directives.
Six years ago, a proposal for Medicare to cover end-of-life counseling touched off a political uproar that threatened to stall President Barack Obama’s health care law in Congress. Wednesday, when Medicare finally announced it will make the change, reaction was muted.
At the time, former Alaska Republican Gov. Sarah Palin’s accusation that voluntary counseling could lead to government-sponsored “death panels” dictating the fate of frail elders was widely discredited. But for the Obama administration, end-of-life counseling remained politically radioactive, even as the idea found broader acceptance in society.
Dr. Joe Rotella, chief medical officer of the American Academy of Hospice and Palliative Medicine, called Medicare’s move a “little miracle,” given the “death panels” furor. He said he believes the controversy has passed.
“I think society’s going to get over it this time and see the good in it,” said Rotella. “It’s really about living in the way that means the most to you to the last moments of your life.”
The original sponsor of the idea, Oregon Democratic Rep. Earl Blumenauer, was taking no chances even as he, too, sensed a political shift. Just a few weeks ago at the White House congressional picnic, Blumenauer said he personally lobbied senior officials, handing out pocket-sized cards with his talking points.
“There was a time when the federal government could have been a leader on this, but now it’s basically responding to where the rest of America is going,” he said.
The policy change, to take effect Jan. 1, was tucked into a massive regulation on payments for doctors. Counseling would be entirely voluntary for patients.
Some doctors already have such conversations with their patients without billing extra. Certain private insurers have begun offering reimbursement. But an opening to roughly 55 million Medicare beneficiaries could make such talks far more common. About three-quarters of the people who die each year in the U.S. are 65 and older, making Medicare the largest insurer at the end of life, according to the Kaiser Family Foundation.
“As a practicing physician, and a son, and someone who has dealt with this in his own family, I would say these are discussions … that are critical to high-quality care,” said Patrick Conway, Medicare’s chief medical officer. “I would want any American who wanted to have this conversation with their clinician to have the opportunity to do so.”
Medicare is using a relatively new term for end-of-life counseling: advance care planning. That’s meant to reflect expert advice that people should make their wishes known about end-of-life care at different stages of their lives, as early as when they get a driver’s license.
The counseling aims to discern the type of treatment patients want in their last days, with options ranging from care that’s more focused on comfort than extending life to all-out medical efforts to resuscitate a dying patient.
The American Medical Association praised Medicare’s decision. “This issue has been mischaracterized in the past and it is time to facilitate patient choices about advance care planning,” said Andrew Gurman, the group’s president-elect.
Before former Palin ignited the “death panels” outcry, there was longstanding bipartisan consensus about helping people to better understand their end-of-life choices and decisions.
A 1992 law passed under Republican President George H.W. Bush requires hospitals and nursing homes to help patients who want to prepare living wills and advance directives. Similar efforts gained resonance after the 2005 death of Terri Schiavo, the brain-damaged Florida woman whose family fought for years over whether she would have wanted to be kept alive in a vegetative state.
Then-Florida Gov. Jeb Bush got embroiled in the family’s ordeal, ordering feeding tubes reinserted for Schiavo against her husband’s wishes. The husband ultimately prevailed in a legal battle with Schiavo’s parents, who wanted her kept alive.
In 2008, a year before debate over the Affordable Care Act spiraled into tea-party protests, Congress overwhelmingly passed legislation requiring doctors to discuss issues like living wills with new Medicare enrollees.
That history of bipartisanship dissipated almost instantly when Palin said the provision on end-of-life conversations in Obama’s health care legislation would result in bureaucrats deciding whether sick people get to live. The language was ultimately removed.
Nothing in the discussions approved by Medicare will be focused on cost, but many experts believe if patients truly understood their alternatives, and doctors listened to them, bills would inherently go down.
A landmark report last year from the Institute of Medicine found that few people make their wishes known and too many deaths are filled with breathing machines, feeding tubes, powerful drugs and other treatments that fail to extend life and make its final chapter more painful and unpleasant. The report was called “Dying in America,” and the institute — an independent organization that advises the government — has a section on its website distilling the issues for families.
After the report, Medicare said it would consider a change in policy for 2016.
Supporters say counseling would give patients more control and free families from tortuous decisions. Even so, there are often no simple answers. Patients may want less invasive care if they believe they will soon die, but predicting when death will happen is notoriously inexact. Terminal patients can live for years, potentially complicating a choice of less intensive treatment.
Interested parties will have 60 days to comment on the new regulation before it is finalized.
I was 25 when I flew home for my father’s last birthday. His cancer had returned and he would die three months later at the age of 57. What I remember most about that weekend was the large rectangular gift box he opened. My mother had bought him a new suitcase.
I don’t know if that suitcase qualifies my family for the Denial Hall of Fame. There are so many contenders for that honor. But I’ve carried the psychic baggage over the years. I have never forgotten that image and how we lost a chance to say goodbye. I still wonder if my father was lonely in the silence that surrounded our inability to talk about what we all knew.
Decades later my mother began a long slow decline. By then, I was a newspaper columnist, a job that I often described as “telling people what you think.” I was professionally outspoken. But little had changed since my father’s death.
Yes, my mother and I talked about everything — but we didn’t talk about how she wanted to live toward the end. The closest we ever came to discussing her wishes was when she would see someone in dire straits and say, “If I’m ever like that, pull the plug.” But most of the time there is no plug to pull.
Gradually and painfully, my mother lost what the doctors call “executive function,” as if she were a C.E.O. fumbling with Excel spreadsheets, not a 92-year-old who couldn’t turn on the television or make a phone call. Eventually, she couldn’t decide what she wanted for lunch, let alone for medical care.
In some recess of my mind, I still assumed that death came in the way we used to think of as “natural.” I thought that doctors were the ones who would tell us what needed to be done. I was strangely unprepared, blindsided by the cascading number of decisions that fell to me in her last years.
I had to say no to one procedure and yes to another, no to the bone marrow test, yes and yes again to antibiotics. How often I wished I could hear her voice in my ear telling me what she wanted. And what she didn’t want.
When my mother died from heart failure and dementia, I began to talk with others. It was extraordinary. Everyone seemed to have a piercing memory of a good death or a hard death. Some of these stories had been kept below the surface for decades, and yet were as deep and vivid as if they’d just happened.
Too many people we love had not died in the way they would choose. Too many survivors were left feeling depressed, guilty, uncertain whether they’d done the right thing.
The difference between a good death and a hard death often seemed to hinge essentially on whether someone’s wishes were expressed and respected. Whether they’d had a conversation about how they wanted to live toward the end.
So, a small group of us — each with his or her own story — started the Conversation Project, a nonprofit, out of the belief that surely we could make this easier. Our partners at the Institute for Healthcare Improvement gathered experts frustrated at the pace of change who believed that the health care system wouldn’t change until the culture changed. So we are trying to change the culture.
There is now, finally, a real momentum for improving end-of-life care. The signs range from the Institute of Medicine’s report, “Dying in America,” to the success of Atul Gawande’s book “Being Mortal.”
There is also a growing public awareness of the need to break through the reluctance that has kept us tongue-tied for so long. A survey we did last year showed that 90 percent of Americans now think it’s important to have the conversation. But the same survey showed something else: Only 30 percent of us have actually had these conversations. So the gap remains huge.
We still need to transform the cultural norm from not talking about how we want to live at the end of life to talking about it. The real work to close the gap is not just for doctors and patients. It’s for mothers and daughters, husbands and wives, families and friends. We have to bring people to the kitchen table to talk with those they love to have the conversation. And to do this before there is a crisis. Not in the I.C.U.
In our survey, the primary reason people gave for not talking to their loved ones was “It’s too soon.” But it’s always too soon … until it’s too late. Half of all elderly people in hospitals cannot make decisions for themselves at the end of life. Far too many health care providers are uncomfortable and untrained in these conversations.
From all the stories shared with us, we know that what people need most is help getting started. They need a travel guide to take the first steps down an unfamiliar and difficult road. So we created a Conversation Starter Kit, which deliberately avoids being a technical medical checklist for the dying in favor of a careful discussion guide for the living.
Our starter kit asks what matters to you, not what’s the matter with you. It asks what’s most important to you in the last phase of your life? Who do you want to make decisions for you? Where do you want to be? Do you worry that you won’t get enough care? Do you worry that you’ll get overly aggressive care?
About two-thirds of the nearly 300,000 people who have come to our website download the starter kit, which is free. We’ve been told repeatedly that conversations that had loomed as frightening and overwhelming repeatedly turned into the most intimate and rewarding moments.
Is it important to have the health care system ready to respect and record our wishes, to have health care providers become more comfortable beginning these talks? Of course. But the hard truth is that we have to begin ourselves — by thinking about our own values, by sharing them, by bringing our own beliefs into the center of the room when decisions will be made.
In my own adulthood, the culture of birth changed. It wasn’t doctors who first tossed out the stirrups and ushered in fathers and video cameras and “birthing rooms.” It was parents who said, birth is not just a medical experience, it’s a human experience. Now we are finally saying that dying, too, is not just a medical experience, it is also a deeply human experience.
Last winter we held a national dinner party to break bread and taboos, to eat comfort food and talk about dying. I shared the table with Nancy Frates, who is known for starting the A.L.S. ice bucket challenge to honor her son Pete. “Now I understand,” she told me. “The conversation is a gift to your family.”
When I helped found the Conversation Project, I thought we were doing this for people who were dying. I thought of my parents. I thought of “executive function” and “baggage.” What I have learned is that the conversation is also a legacy. This is the gift, maybe the last gift, we can give one another.
Sheila Kitzinger, the natural childbirth activist who died in April, pioneered the idea of birth plans. Her daughters, Celia and Jenny, describe how their mother made a death plan – so she could die at home according to her own wishes
By Celia and Jenny Kitzinger
Our mother, Sheila Kitzinger, champion of women’s rights in childbirth, died in April. In writing her own fantasy obituary for a newspaper many years earlier, she imagined dying at the height of her powers: “She died as she would have wished, flat on her back on a table with her legs in the air, in front of a large audience, demonstrating with vigour the dangers of making women lie down, hold their breath till their eyes bulge and strain as if forcing through a coconut to push a baby out. She claimed that treating the second stage of labour as a race to the finishing post … could result in cardiac arrhythmia and even a stroke. She made her point.”
Rather than the melodramatic early death she conjured up here, Sheila died quietly at home surrounded by her family, at the age of 86.
Sheila spent her life campaigning for autonomy and choice in childbirth and challenging the medicalisation of birth. She pioneered birth plans to support women in making their own decisions. When it came to dying, she expressed the same values of choice and control, and she planned ahead. She appointed one of our sisters, Tess, with lasting power of attorney for health and welfare and also wrote an advance decision. This preparation was invaluable in ensuring that her choices were respected and in allowing her to die at home as she wanted.
Being at home was essential to her idea of a “good death”. She wanted to be in familiar surroundings, on her own territory, with the support of those who knew her. She particularly did not want to go into hospital, aware as she was of the cascade of interventions that can befall people at the end of life, just as they can women in childbirth.
In her autobiography, she records that Cicely Saunders, founder of the modern hospice movement, once said to her backstage at a conference where they were both speaking, “You and I are doing the same work.”
Her concerns about hospital treatment had also been cruelly refined and reinforced by our family experience of the treatment of our sister, Polly, who was severely brain injured in a car crash six years ago. We were all very aware of how institutions have their own systems, policies and agendas that can strip control from the individual.
Sheila wrote about her own mother’s death decades earlier. Following a brain haemorrhage, her mother could no longer swallow, and Sheila resisted a feeding tube. “I consulted Father and we both agreed, ‘No. She would want to be at home. She wouldn’t want invasive procedures.’ Later he told me that he wished he had the courage to care for his father that way when he was dying. Instead, he had him admitted to hospital and everything was done to prolong his life by every means possible. Looking back on it, he thought it was wrong, and now he felt guilty.”
At 86, Sheila had cancer and many other diseases of old age. After the first bout of cancer a year earlier, she had accepted treatment. When the illness returned she declined further investigation or intervention.
As her health declined she lost interest in eating or drinking – it was painful to watch her become progressively thinner and more frail. At times she was able to enjoy someone reading to her, she would gamely invite the family join her to sip a little sparkling wine or eat a chocolate, and the ritual of tea at 5pm still seemed to give her pleasure. But it was deeply distressing to witness how vulnerable she became.
In the last few months of her life, Sheila stopped talking about planning her next book and talked with us about her wishes for her death. She also revisited and confirmed the short advance decision (AD) she had written some years earlier. This was a single paragraph (signed and witnessed, and legally binding on her carers and medical professionals) which declared: “If the time comes when I can no longer take part in decisions for my own future, I want to receive whatever quantity of drugs can keep me free from pain or distress, even if death is hastened. If there is no reasonable prospect of recovery I do not consent to be kept alive by artificial means. I do not wish to be transferred to hospital and should like to die in my own bed.”
Except for the last few days, when she was unconscious, Sheila was able to communicate her wishes herself. But her AD was immensely valuable in supporting her choices. Her GP surgery tried to insist, a few weeks before she died, that Sheila should be transferred to hospital after a “mini-stroke”. She said no. The GP questioned her mental capacity to refuse hospitalisation. We read out her AD and she stayed home.
Later her AD was useful when another doctor was considering transferring Sheila to hospital to clarify her diagnosis and it helped her to avoid various interventions. One of the last whole sentences Sheila said was, “I decline antibiotics if I get pneumonia” and, later, she nodded when offered morphine. Anyone in doubt about her capacity to make her own choices, or concerned to ensure they had done everything possible as a healthcare professional, could read her AD or talk with her LPA for health and welfare – and be empowered to provide “person-centred care” with confidence that they knew what her wishes were.
A home death is not right for everyone. We were lucky that Sheila’s symptoms were well controlled, and that’s not always possible at home. The whole situation placed many demands and stresses on the whole family. However, once it was (belatedly) agreed that she was at the “end of life” we were provided with well-coordinated NHS support. It also helped that we are a large family so when one of us was at the end of her tether, another could step in.
This support structure allowed Sheila to die, as she had lived, on her own terms. It also allowed us to have positive memories of the last weeks of her life – and that now helps us with our grief.
Sheila’s burial reflected the values she had lived by – and was shaped by her own distinct choices. She was critical of the “business” of funerals and preferred not to have her body handed over to the professionals. Instead, the day after she died, we – her daughters – washed and dressed her body one last time and carried her downstairs to place her in a bright orange cardboard coffin, decorated with peacock feathers.
Sheila opted for a simple, private burial – much to the surprise of some friends and colleagues who had expected an opulent public funeral extravaganza. Sheila wanted her body buried “without fuss”. So we carried her coffin from the house, to a tune from our time in Jamaica in the 1960s, placed it in the back of a car, and drove to a woodland burial ground. We lowered the coffin into the ground, scattered it with sprigs of rosemary and camellia blossom from our lovely garden and read some of Sheila’s own poetry:
“After the soaring, a peace like swans settling on the lake After the tumult and the roaring winds,
La Crosse is a small town in western Wisconsin, right on the Minnesota border. It has about 51,000 residents. And La Crosse has, over the past three decades, done something remarkable: nearly all its residents have a plan for how they want to die.
“One of our doctors recently told me that making a plan is just like taking blood pressure or doing allergy tests,” says Bud Hammes, a medical ethicist at Gundersen Health System, one of La Crosse’s two hospital networks. “It’s just become part of good care here.”
End-of-life care planning is not currently a routine part of medical care in the United States. Most surveys show that about a quarter of American adults have completed an advance directive, spelling out what type of treatment they would want in a medical crisis where they could no longer make their wishes known.
Making a plan is just like taking blood pressure or doing allergy tests. It’s just become part of good care here.”Americans don’t plan for death because health insurance plans don’t typically pay for that sort of planning, the way they cover blood tests or MRI scans. Medicare, which covers Americans over 65, certainly doesn’t pay for end-of-life care planning: when the Obama administration proposed such an idea during the 2009 health reform debate, it quickly spiraled into talks about “death panels” and “pulling the plug on Grandma.”
The dearth of end-of-life care planning in the United States often means that lives end in chaos, with families confused and overwhelmed trying to think through what their loved ones would want.
“It’s one of the most uncomfortable things,” says Donn Dexter, a neurologist in Eau Claire, Wisconsin, about a two-hour drive north of La Crosse. “The family can be so at odds, and the patient has not made clear what they want. I’ve seen families just torn apart by this, and their loved ones tortured with prolonged, futile treatment at the end of life.”
When La Crosse started talking about death in the mid-1980s, a few patients were annoyed. People who turned up at a physical and had a doctor ask about their end-of-life preferences were, understandably, confused.
“Patients were sometimes upset or anxious, like, ‘Why are you bringing this up? Is there something wrong with me?'” Hammes says. “There were lots of strong emotions and this sense that this was only for people at the end of life and dying. We had to work really hard to convince people we wanted every patient to have this discussion.”
But doctors kept asking, until patients got comfortable. And there were never any accusations of “death panels” or “rationing”: the program seemed to work because it was grassroots, rather than imposed by the government or some other large entity.
The story of La Crosse — and how its approach to end-of-life care is quickly, quietly spreading across the Midwest — gives some reason to be optimistic about the future of end-of-life care in America. It suggests that it is possible to move beyond death panels, and for doctors to have frank conversations with patients about how their life will end. The trick, it seems, is making these conversations feel like a natural part of the doctor-patient relationship, rather than a mandate imposed by a menacing bureaucracy. The only problem is this: for programs like La Crosse’s to work on a national level, the federal government is eventually going to have to get involved — and pay doctors for this type of service. Is that something America will ever be ready for?
“Situations where it wasn’t clear what was best”
La Crosse’s push to get its residents to talk about death began in the 1980s, when Hammes joined Gundersen to develop a curriculum for the moral quandaries that medical students would go on to face as doctors. He shadowed some students to get a sense of the issues they confront.
“What I witnessed with such frequency were situations where it wasn’t clear what was best, and the patient’s perspective would help resolve that question, but we couldn’t get that perspective,” he says.
Hospitals don’t know when patients will die. But they do know death will happen — and can plan for that.
As an outsider to the medical system, Hammes found this baffling. Some of these patients had been in the hospital’s care for decades. While it was impossible to predictwhen a patient would die, the hospital clearly knew, with great certainty, that all lives end. Yet there was no apparent planning for that moment.
Hammes suggested that the hospital start talking to patients about death. They started with a small group of 60 patients with kidney failure. They and their families talked about priorities in medical care and whether they would want to continue living if they lost awareness of who they were, or where they were.
“What we noticed is that as we had those conversations, the conflicts became less frequent,” he says. “The norm became the family saying, ‘We know what to do; we had a conversation.'”
The success of Hammes’s pilot encouraged Gundersen and the other hospital in town to expand the program to the entire city. They would work not just with patients who were facing imminent crisis, like the dialysis group, but with any adult in the system.
By 1995, 85 percent of La Crosse residents had an advance planning document on their record. In 2008, it hit 90 percent. These documents were effective: researchers foundthat among those who died, the care they wanted nearly universally aligned with the care they received.
All of this happened without political blowback. The movement to talk about death spread quietly, from doctor to doctor and patient to patient.
And, perhaps most surprisingly, the La Crosse conversations appeared to save money. The city has some of the lowest end-of-life spending in the country; people who die in La Crosse spend approximately 32 percent less than the average Medicare patient in their last six months of life, the Dartmouth Atlas of Health Care shows.
This suggests something broken about the way end-of-life care usually works: it is much more intense than patients desire. When patient preferences are known — as they almost universally are in La Crosse — people tend to select less aggressive courses of treatment. And this is what has earned the La Crosse model so much praise: it’s shown a meaningful reduction in health spending as a side effect of respecting patient wishes.
And that’s why there’s a now a movement to bring the La Crosse program to the entire state of Wisconsin.
“We want every adult to have the conversation,” says John Maycroft, who oversees policy at the Wisconsin Medical Society, a doctors’ advocacy group. “It’s about the conversation. And the document is of course important, but if everyone can have this conversation, we’d all be better for it. We could shift the culture in a big way.”
“Do you have thoughts about what you would want to happen?”
The name of the program La Crosse developed is called Respecting Choices. It’s essentially a script for having conversations about the end of life. The idea is to have patients talk about the type of care they would want if they could no longer speak on their own behalf, like after a serious car accident.
What makes Respecting Choices work is that it’s formulaic. It gives structure and steps to what is otherwise a difficult conversation — the type of conversation that medical school doesn’t prepare doctors to have. Those trained in the curriculum say having a script to follow is essential; they know exactly what information they need and how to get it. And they’re forced to practice, over and over again, until it feels like second nature.
I had Mia Morisette, an advance care planning coordinator for University of Wisconsin Hospital and Clinics, go through the script with me. In her distinctive Wisconsin accent, she started by asking me what I knew about advance directives — how they worked and why they were important. And she asked me to reflect on what I’d seen, in my own family, with the end-of-life experience going well or poorly.
A difficult conversation is guided by a script — making the interaction much less awkward
I told Morisette a bit about my grandmother who died in 2010. One of the things I remembered being stressful for family members was the notion of doing everythingpossible. There seemed to be a tremendous desire for everyone to walk away from the ICU thinking, “At least we did everything we could.” Sometimes that desire could override what was actually the best for my grandmother’s care. I didn’t want my family to have that type of burden, I told her.
Without knowing it, I had moved on to the next part of Morisette’s script: what I would want. Morisette had a very specific thing she wanted me to think about. I didn’t need to think about what I would do if I got a cancer diagnosis or found out I had a year to live. If that happened, we could revisit my options. Instead, she wanted me to think about a situation where I wouldn’t be able to make my care preferences known.
“Consider a situation where a serious car accident left you unable to communicate,” she said. “You’re receiving medical care to keep you alive, but there’s little chance you’ll ever recover the knowledge of who you are and who is around you. Do you have thoughts about what you would want to happen?”
I asked Morisette to define “little chance,” which she estimated to be around 5 percent.
Then I was stuck. I sat on the phone silent for a moment. Even as a reporter on these issues, I didn’t know what I wanted — generally, my hunch was to stop treatment with such long odds in my favor. But I also had a nagging voice wondering about that 5 percent chance.
Morisette told me this was all normal; this was the point of having the conversation in the first place — to have these thoughts, and to work through them. Most of her consultations usually take three or four visits to fully complete.
“It’s not all at once,” she told me about the process. “Sometimes it helps just to use the first conversation to get in the frame of mind.”
“We eventually want everyone to have this conversation”
Maycroft of the Wisconsin Medical Society started working on bringing the La Crosse model statewide in March 2013. Minnesota had done the same thing a few years earlier, to generally positive results. Minnesotans, in 2014, showed higher rates of end-of-life planning than the national average.
The Wisconsin program started small, with six hospitals piloting La Crosse’s model elsewhere in the state. Over two years it’s grown steadily, up to 23 health-care systems. And the ultimate goal is to, in a decade or so, make Wisconsin look like La Crosse, with every resident having a plan for death.
“We eventually want everyone to have this conversation,” says Maycroft. “I want to show that this can be done, that it’s something Wisconsin can do and that other medical societies can do. We’re here for Wisconsinites, but we also want to be a national model.”
I was surprised to see that Wisconsin had moved this program forward with little public protest, given the fierce fight over death panels that happened in Washington a few years ago. But even more than that, the thing I found most baffling about the La Crosse model’s growth was that hospitals earn no money from having these conversations.
“We got no reimbursement,” says Hammes of launching the program in La Crosse. “For the hospital, this would lose money.”
“I want to show that this can be done, that it’s something Wisconsin can do and that other medical societies can do”
Whenever doctors do anything — whether it’s a blood test or brain surgery — they charge the patient’s health insurance plan a fee. Doctors, like lawyers, are constantly billing for the time they spend talking to or operating on patients. I’ve written on the health industry for six years now, and I’d never heard of a service that hospitals don’t charge for, like these end-of-life consultations.
Reimbursement would certainly help, Maycroft and others told me. But there’s also a risk that comes with formalizing the program: the vicious debates that happened when the Obama administration proposed paying doctors for this exact type of conversation.
“We haven’t asked for any legislation,” Maycroft says. “The state knows about us, but we’re not asking for any kind of money. We’ve avoided the death panel accusations.”
This makes it easier for programs like his to fly under the radar — but is also a limiting factor for expanding. Not all hospitals will want to do this type of work out of the goodness of their own hearts — and even hospitals that are on board have difficulty committing resources to a program that doesn’t pay.
“The biggest challenge for us is financial,” says Toni Kessler, the ethics manager at Community Care, a hospice provider participating in the Wisconsin program. “I spend a lot of time talking to our finance people, anyone I can get in front of. But it can be a tough case to make when we don’t get reimbursed.”
Minnesota, whose program began five years before Wisconsin’s, made its first request for state money last month, pushing for a bill that would fund the advance directive program.
“The day we introduced our legislation someone else dropped a bill relating to physician-assisted suicide,” says Sue Schettle, executive director of the Twin Cities Medical Society. “And I was thinking, ‘If there’s ever day where this issue would blow up, this was it. I was dreading reading the next day’s newspaper.'”
The explosion never happened. “Maybe it’s our Midwestern nature, that we’re just putting our heads down and getting to work,” Schettle mused to me.
Maycroft thinks the Wisconsin program can go forward for some time without any funding. So far, hospitals have paid his organization money to get trained in end-of-life care conversations, and that has kept the effort afloat.
At the same time, getting insurers and Medicare to reimburse for these conversations remains an important and challenging goal. Maycroft sent me a follow-up email on this point shortly after we talked.
“I’m not sure I expressed well just how much Medicare and insurer reimbursement would help us,” he wrote. “Our participants’ willingness to do this without reimbursement has been impressive, but (and feel free to quote me on this) Medicare reimbursement would make a huge difference. Our participants are doing everything they can, but sustainability of these programs will be a challenge without reimbursement.”
The lack of reimbursement for end-of-life planning suggests a limit to how far the La Crosse model can spread. It currently relies on the willingness of hospitals to donate their time, essentially having doctors volunteer time out of their already busy days.
Going national would almost certainly require Medicare to start paying for these conversations. And maybe, with programs like those in Minnesota and Wisconsin, Washington will begin to get ready. Complete Article HERE!