For decades, Americans have been asked to fill out papers detailing their end-of-life wishes before they become terminally ill – living wills, non-resuscitation orders, and other written materials expressing treatment preferences.
Now a group of prominent experts say these efforts should stop because they haven’t improved end-of-life care.
âDecades of research show that predictive care planning does not work. We need a new paradigm, âsays Dr. R. Sean Morrison, Professor of Geriatrics and Palliative Care at the Icahn School of Medicine at Mount Sinai, New York, and a co-author of a recent opinion piece advancing that argument in JAMA.
“Much time, effort, money, blood, sweat, and tears have been expended to increase the prevalence of predictive care planning, but the evidence is clear: it is not producing the results we hoped for,” said Dr. Diane Meier, founder of the Center to Advance Palliative Care, professor at Mount Sinai and co-author of the opinion article. In particular, it has not been shown that predictive care planning ensures that people receive care that corresponds to their stated preferences – an important goal.
“We say stop trying to anticipate the care you might want in hypothetical future scenarios,” said Dr. James Tulsky, chairman of the Department of Psychosocial Oncology and Palliative Care at the Dana-Farber Cancer Institute in Boston and contributed to the article. “Many highly educated people believe that documents drawn up years in advance will protect them when they become incapacitated. They won’t.”
The reasons are varied and documented in dozens of research studies: people’s preferences change when their health changes; Forms provide vague and sometimes conflicting goals for terminal care; Families, surrogates, and clinicians often do not match a patient’s stated preferences; Documents are not readily available when decisions need to be made; and services that could support a patient’s wishes – such as home treatment – are simply not available.
However, this criticism of predictive care planning is very controversial and has met with considerable opposition.
Forward-looking care planning has advanced significantly over the past decade, and the focus today is on patient-clinician conversations about patient goals and values, not on filling out documents, said Dr. Rebecca Sudore, Professor of Geriatrics and Director of the Innovation and Implementation Center on Aging and Palliative Care at the University of California-San Francisco. This progress shouldn’t be overlooked, she said.
Anticipating what people want at the end of their lives is also no longer the primary goal. Instead, it becomes increasingly important to help people make complicated decisions when they become seriously ill.
When people with serious illnesses have conversations like this, “our research shows that they are less afraid, have more control over their care, are better prepared for the future, and are better able to communicate with their families and doctors”, said Dr. Yo. Paladino, assistant director of research and implementation for the Serious Illness Care Program at Ariadne Labs, a research partnership between Harvard and Brigham and the Women’s Hospital in Boston.
Forward-looking care planning “may not be helpful for most of us in making specific treatment decisions or directing future care, but it can give us peace of mind and help us make those decisions when the time is right,” said Dr . J. Randall Curtis, 61, director of the Cambia Palliative Care Center of Excellence at the University of Washington.
Curtis and I communicated by email because he was unable to speak well after being diagnosed with amyotrophic lateral sclerosis, an incurable neurological disease, in early 2021. Since his diagnosis, Curtis has had numerous conversations with his wife and palliative care practitioner about his goals, values ââand wishes for the future.
“I haven’t made very many specific decisions yet, but I feel that these discussions comfort me and prepare me to make later decisions,” he told me. Evaluations of the effectiveness of predictive care planning should consider these deeply significant “immeasurable benefits,” Curtis wrote in a recent article about his experience at JAMA.
The focus on the documentation of wishes to die goes back to a landmark legal case, Cruzan v. Director, Missouri Department of Health, the Supreme Court ruled in June 1990. Nancy Cruzan was 25 years old when her car slipped off a freeway and she sustained a serious brain injury that left her permanently unconscious. After several years, her parents requested that her feeding tube be removed. The hospital refused. In a 5-4 decision, the Supreme Court upheld the hospital’s right to do so, citing the need for “clear and convincing evidence” of an incapacitated person’s will.
Later that year, Congress passed the Patient Self-Determination Act, which requires hospitals, nursing homes, home health authorities, health care organizations, and hospices to ask if an individual has a written “preventive policy” and, if so, to follow those guidelines whenever possible . These documents are intended to come into force when someone is terminally ill and has lost the ability to make decisions.
But all too often this has become a “check-box” exercise without in-depth discussions about a patient’s prognosis, the impact of future medical decisions on a patient’s quality of life, and without a realistic plan for implementing the patient’s wishes, said Meier from Mount Sinai.
She found that only 37% of adults completed written advance directives, which she believed was a sign of uncertainty about their value.
Other problems can affect the usefulness of these documents. A patient’s preferences can be contradicting or difficult to implement in real-world situations so that healthcare professionals cannot get clear guidance, said Dr. Scott Halpern, professor at the University of Pennsylvania’s Perelman School of Medicine specializing in terminal care and palliative care. .
For example, an older woman may indicate that she wants to live as long as possible while avoiding pain and suffering. Or an elderly man may state a clear preference for refusing mechanical ventilation but leave the question unanswered as to whether other types of breathing assistance are acceptable.
“Rather than asking patients to make decisions about hypothetical scenarios in the future, we should focus on helping them make difficult decisions in the moment,” when actual medical circumstances warrant attention, said Morrison of Mount Sinai.
Also, it can be difficult to determine when the end of life is near and when treatment might delay that possibility.
Morrison spoke of his alarm at the start of the pandemic as older adults with Covid-19 went to the emergency room and medical providers sent their advance directives (z “to the elderly. He said he and his colleagues had seen this repeatedly.
“What didn’t happen was an informed conversation about the likely outcome of Covid development and opportunities for recovery,” although most older adults survived in the end, he said.
With all the controversy over written directives, there is strong support among experts for another component of predictive care planning – the appointment of a health care representative to make decisions on your behalf in the event of your incapacity for work. This usually includes filling out a power of attorney.
“This won’t always be your spouse or child or any other family member: it should be someone you trust to do right for you in difficult circumstances,” said Tulsky, co-chair of a care round table People with Serious Illnesses for the National Academies of Sciences, Engineering and Medicine.
âTalk to your representative about what is most important to you,â he urged, and let them know if your circumstances or preferences change.
Most people want their proxies to be able to respond to unforeseen circumstances and have room for maneuver while respecting their core goals and values, Sudore said.
Tools that can help patients and families include Sudore’s Prepare for Your Care program; Materials from the interview project, respecting decisions and caring conversations; and videos of healthcare decisions at ACP Decisions.
The Centers for Disease Control and Prevention also has a comprehensive list of resources.
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This article is reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a non-partisan health research organization not affiliated with Kaiser Permanente.