Is it time to reconsider end-of-life decisions and concerns?


From Judith Graham

Thursday, January 6, 2022 (Kaiser News) – For decades, Americans have been encouraged to fill out documents outlining their end-of-life desires before they become terminally ill – wills for life, non-resuscitation orders and other written materials expressing preferences for treatment.

Now, a group of prominent experts says those efforts should stop because they have not improved end-of-life care.

“Decades of research show that advance care planning doesn’t work. We need a new paradigm, ”said Dr. R. Sean Morrison, chairman of geriatrics and palliative medicine at Icahn School of Medicine in Mount Sinai, New York, and co-author of a recent opinion stating this argument at JAMA.

“A lot of time, effort, money, blood, sweat and tears have been invested in increasing the prevalence of advance care planning, but the evidence is clear: it is not achieving the results we hoped for,” said Dr. Diane Meier, founder of the Center for Advancement. Palliative care, a professor at Mount Sinai and co-author of the opinion. Namely, it has not been shown that advance care planning ensures that people receive care in accordance with their stated preferences – which is the main goal.

“We say stop quitting to anticipate the care you might want in hypothetical future scenarios,” said Dr. James Tulsky, who is chair 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 think that documents prepared years in advance will protect them if they become incompetent. It won’t. ”

The reasons are varied and documented in dozens of research studies: people’s preferences change as their health status changes; patterns offer vague and sometimes conflicting goals for end-of-life care; families, surrogates, and clinicians often disagree with the patient’s stated preferences; documents are not easily accessible when decisions need to be made; and services that could support the patient’s desires — such as treatment at home — are simply not available.

But this critique of advance care planning is highly controversial and has received considerable resistance.

Advance care planning has evolved significantly over the past decade and today the focus is on conversations between patients and clinicians about patients ’goals and values ​​rather than fulfilling documents, said Dr. Rebecca Sudore, professor of geriatrics and director of Innovation and Implementation Center for Aging and Palliative Care. care at the University of California-San Francisco. This progress should not be ignored, she said.

Also, predicting what people want at the end of their lives is no longer the primary goal. Instead, helping people make complicated decisions when they become seriously ill is becoming an increasingly important priority.

When people with serious illnesses have conversations of this kind, “our research shows that they experience less anxiety, have more control over their care, are better prepared for the future and are better able to communicate with their families and clinicians, ”said Dr. Jo Paladino, Assistant Director of Research and Implementation for the Ariadne Labs Serious Illness Care Program and Harvard Research Partnership and Brigham and Women’s Hospital in Boston.

Planning advance care “may not be helpful in making specific treatment decisions or directing future care for most of us, but it can bring us peace and help us prepare to make those decisions when the time comes,” Dr. J. Randall said. Curtis, 61, director of the Cambia Center for Excellence for Palliative Care at the University of Washington.

Curtis and I communicated by email because he can no longer speak easily once he has been diagnosed amyotrophic lateral sclerosis, an incurable neurological condition, in early 2021. Since his diagnosis, Curtis has had numerous conversations with his wife and palliative care professionals about his goals, values, and desires for the future.

“I haven’t made many concrete decisions yet, but I feel that these discussions bring me comfort and prepare me for later decisions,” he told me. Evaluations of the effectiveness of advance care planning should take into account these deeply significant “immeasurable benefits,” Curtis wrote recently for JAMA in an article about his experiences.

The emphasis on documenting end-of-life desires dates back to the underlying legal case, Cruzan v. Director, Missouri Department of Health, the Supreme Court ruled in June 1990. Nancy Cruzan was 25 when her car slipped off the highway and sustained a severe brain injury that left her permanently unconscious. After a few years, her parents asked to have her feeding tube removed. The hospital refused. In decision 5-4, the Supreme Court affirmed the hospital’s right to do so, citing the need for “clear and convincing evidence” of the incapacitated person’s wishes.

Later that year, Congress passed the Patient Self-Determination Act, which requires hospitals, nursing homes, home health agencies, health care organizations and hospices to ask if a person has written “previous directive”And, if so, follow these directives as much as possible. These documents should come into force when someone is terminally ill and loses the ability to make decisions.

But too often it has become a “tick” exercise, not accompanied by in-depth discussions of patient prognosis, ways future medical decisions could affect a patient’s quality of life and without a realistic plan to implement patient wishes, Meier said from Mount Sinai.

She noted that only 37% of adults fulfilled pre-written instructions – in her opinion, a sign of uncertainty in their value.

Other issues may compromise the usefulness of these documents. Patient preferences can be inconsistent or difficult to apply in real-life situations, leaving health care providers without clear instructions, said Dr. Scott Halpern, a professor at the University of Pennsylvania Perelman School of Medicine who studies end-of-life 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 older man may express a clear tendency to refuse mechanical ventilation, but leave open the question of whether other types of breathing aids are acceptable.

“Instead of asking patients to make decisions about hypothetical scenarios in the future, we should focus on helping them make difficult decisions at this time,” when real medical circumstances require attention, said Morrison of Mount Sinai.

Also, determining when the end of life is near and when treatment could delay that end can be difficult.

Morrison spoke of his alert at first pandemic when older adults with covid-19 would go to the emergency room and medical providers would follow their pre-prescribed instructions (for example, without CPR or mechanical ventilation) on the assumption that the virus is “universally fatal” to the elderly. He said he and his colleagues had witnessed this happen multiple times.

“What didn’t happen was an informed conversation about the likely outcome of covid development and chances of recovery,” although most older adults eventually survived, he said.

Despite all the controversy over written instructions, there is strong support among experts for the second component of advance care planning – appointing a health care deputy or a proxy to make decisions on your behalf if you become incompetent. This usually involves filling out a health care authorization form.

“This will not always be your spouse or your child or another family member: it should be someone you trust to do the right thing for you in difficult circumstances,” said Tulsky, who co-chairs a roundtable on caring for people with serious illnesses. for the National Academy of Sciences, Engineering and Medicine.

“Talk to your replacement about what’s most important to you,” he encouraged, and informing that person whenever your circumstances or preferences change.

Most people want their surrogates to be able to respond to unforeseen circumstances and have the freedom to make decisions while respecting their core goals and values, Sudore said.

Among the tools that can help patients and families are Sudore’s Prepare for Your Care program; materials from the project Conversation, Respect for Elections and Caring Conversations; and videos of health care decisions on ACP decisions.

Centers for Disease Control and Prevention also have an extensive list of resources.

We want to hear from readers about the questions you would like answered, the problems you have had with your care, and the advice you need to work with the health care system. Visit to submit your requests or tips.


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