{"id":6939,"date":"2022-05-24T07:33:19","date_gmt":"2022-05-24T11:33:19","guid":{"rendered":"https:\/\/www.silvercentury.org\/?p=6939"},"modified":"2022-05-24T07:35:06","modified_gmt":"2022-05-24T11:35:06","slug":"top-experts-question-the-value-of-advance-care-planning","status":"publish","type":"post","link":"http:\/\/78.142.243.82\/~silvercentury\/2022\/05\/top-experts-question-the-value-of-advance-care-planning\/","title":{"rendered":"Top Experts Question the Value of Advance Care Planning"},"content":{"rendered":"

Some medical experts have begun to question whether it\u2019s a good idea to draw up a document specifying what kind of care you want if you\u2019re seriously ill and can\u2019t speak for yourself. Others are pushing back. <\/span><\/i>Kaiser Health News<\/span><\/a> (KHN) <\/span>columnist Judith Graham considers both sides of the controversy in this article, which was posted on <\/span><\/i>KHN<\/span>\u2019s website on January 6, 2022.<\/span><\/i><\/p>\n

For decades, Americans have been urged to fill out documents specifying their end-of-life wishes before becoming terminally ill\u2014living wills, do-not-resuscitate orders and other written materials expressing treatment preferences.<\/span><\/p>\n

Now, a group of prominent experts is saying those efforts should stop because they haven\u2019t improved end-of-life care.<\/span><\/p>\n

\u201cDecades of research demonstrate advance care planning doesn\u2019t work. We need a new paradigm,\u201d said R. Sean Morrison, MD, chair of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York and a coauthor of a <\/span>recent opinion piece<\/span><\/a> advancing this argument in JAMA.<\/span><\/p>\n

\u201cA great deal of time, effort, money, blood, sweat and tears have gone into increasing the prevalence of advance care planning, but the evidence is clear: it doesn\u2019t achieve the results that we hoped it would,\u201d said Diane Meier, MD, founder of the Center to Advance Palliative Care, a professor at Mount Sinai and coauthor of the opinion piece. Notably, advance care planning has not been shown to ensure that people receive care consistent with their stated preferences\u2014a major objective.<\/span><\/p>\n

\u201cWe\u2019re saying stop trying to anticipate the care you might want in hypothetical future scenarios,\u201d said James Tulsky, MD, who is chair of the department of psychosocial oncology and palliative care at the Dana-Farber Cancer Institute in Boston and collaborated on the article. \u201cMany highly educated people think documents prepared years in advance will protect them if they become incapacitated. They won\u2019t.\u201d<\/span><\/p>\n

The reasons are varied and documented in dozens of research studies. People\u2019s preferences change as their health status shifts; forms offer vague and sometimes conflicting goals for end-of-life care; families, surrogates and clinicians often disagree with a patient\u2019s stated preferences; documents aren\u2019t readily available when decisions need to be made; and services that could support a patient\u2019s wishes\u2014such as receiving treatment at home\u2014simply aren\u2019t available.<\/span><\/p>\n

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Already, the priority is to help seriously ill people make complicated decisions.<\/b><\/h4>\n<\/blockquote>\n

But this critique of advance care planning is highly controversial and has received considerable pushback.<\/span><\/p>\n

Advance care planning has evolved significantly in the past decade and the focus today is on conversations between patients and clinicians about patients\u2019 goals and values, not about completing documents, said Rebecca Sudore, MD, a professor of geriatrics and director of the Innovation and Implementation Center in Aging and Palliative Care at the University of California-San Francisco. This progress shouldn\u2019t be discounted, she said.<\/span><\/p>\n

Also, anticipating what people want at the end of their lives is no longer the primary objective. Instead, helping people make complicated decisions when they become seriously ill has become an increasingly important priority.<\/span><\/p>\n

When people with serious illnesses have conversations of this kind, \u201cour research shows they experience less anxiety, more control over their care, are better prepared for the future and are better able to communicate with their families and clinicians,\u201d said Jo Paladino, MD, associate director of research and implementation for the Serious Illness Care Program at Ariadne Labs, a research partnership between Harvard and Brigham and Women\u2019s Hospital in Boston.<\/span><\/p>\n

Advance care planning \u201cmay not be helpful for making specific treatment decisions or guiding future care for most of us, but it can bring us peace of mind and help prepare us for making those decisions when the time comes,\u201d said J. Randall Curtis, MD, 61, director of the Cambia Palliative Care Center of Excellence at the University of Washington.<\/span><\/p>\n

Curtis and I communicated by email because he can no longer speak easily after being diagnosed with amyotrophic lateral sclerosis, an incurable neurologic condition, early in 2021. Since his diagnosis, Curtis has had numerous conversations about his goals, values and wishes for the future with his wife and palliative care specialists.<\/span><\/p>\n

\u201cI have not made very many specific decisions yet, but I feel like these discussions bring me comfort and prepare me for making decisions later,\u201d he told me. Assessments of advance care planning\u2019s effectiveness should take into account these deeply meaningful \u201cunmeasurable benefits,\u201d Curtis wrote recently in JAMA in <\/span>a piece<\/span><\/a> about his experiences.<\/span><\/p>\n

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Only 37 percent of adults have advance directives.<\/b><\/h4>\n<\/blockquote>\n

The emphasis on documenting end-of-life wishes dates to a seminal legal case, <\/span>Cruzan v. Director, Missouri Department of Health<\/a>, <\/span><\/i>decided by the Supreme Court in June 1990. Nancy Cruzan was 25 when her car skidded off a highway and she sustained a severe brain injury that left her permanently unconscious. After several years, her parents petitioned to have her feeding tube removed. The hospital refused. In a 5-4 decision, the Supreme Court upheld the hospital\u2019s right to do so, citing the need for \u201cclear and convincing evidence\u201d of an incapacitated person\u2019s wishes.<\/span><\/p>\n

Later that year, Congress passed the <\/span>Patient Self-Determination Act<\/a>,<\/span> which requires hospitals, nursing homes, home health agencies, health maintenance organizations and hospices to ask whether a person has a written \u201cadvance directive\u201d and, if so, to follow those directives to the extent possible. These documents are meant to go into effect when someone is terminally ill and has lost the capacity to make decisions.<\/span><\/p>\n

But too often this became a \u201ccheck-box\u201d exercise, unaccompanied by in-depth discussions about a patient\u2019s prognosis, the ways that future medical decisions might affect a patient\u2019s quality of life, and without a realistic plan for implementing a patient\u2019s wishes, said Meier, of Mount Sinai.<\/span><\/p>\n

She noted that only 37 percent of adults have completed written advance directives\u2014in her view, a sign of uncertainty about their value.<\/span><\/p>\n

Other problems can compromise the usefulness of these documents. A patient\u2019s preferences may be inconsistent or difficult to apply in real-life situations, leaving medical providers without clear guidance, said Scott Halpern, MD, a professor at the University of Pennsylvania Perelman School of Medicine, who studies end-of-life and palliative care.<\/span><\/p>\n

For instance, an older woman may indicate she wants to live as long as possible and yet also avoid pain and suffering. Or an older man may state a clear preference for refusing mechanical ventilation but leave open the question of whether other types of breathing support are acceptable.<\/span><\/p>\n

\u201cRather than asking patients to make decisions about hypothetical scenarios in the future, we should be focused on helping them make difficult decisions in the moment,\u201d when actual medical circumstances require attention, said Morrison, of Mount Sinai.<\/span><\/p>\n

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There\u2019s strong support for naming a health care surrogate or proxy to make decisions on your behalf. <\/b><\/h4>\n<\/blockquote>\n

Also, determining when the end of life is at hand and when treatment might postpone that eventuality can be difficult.<\/span><\/p>\n

Morrison spoke of his alarm early in the pandemic when older adults with COVID-19 would go to emergency rooms, and medical providers would implement their advance directives (for instance, no CPR or mechanical ventilation) because of an assumption that the virus was \u201cuniversally fatal\u201d to seniors. He said he and his colleagues witnessed this happen repeatedly.<\/span><\/p>\n

\u201cWhat didn\u2019t happen was an informed conversation about the likely outcome of developing COVID and the possibilities of recovery,\u201d even though most older adults ended up surviving, he said.<\/span><\/p>\n

For all the controversy over written directives, there is strong support among experts for another component of advance care planning\u2014naming a health care surrogate or proxy to make decisions on your behalf should you become incapacitated. Typically, this involves filling out a <\/span>health care power-of-attorney form<\/a>.<\/span> <\/span><\/p>\n

\u201cThis won\u2019t 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,\u201d said Tulsky, who cochairs a roundtable on care for people with serious illnesses for the National Academies of Sciences, Engineering and Medicine.<\/span><\/p>\n

\u201cTalk to your surrogate about what matters most to you,\u201d he urged, and update that person whenever your circumstances or preferences change.<\/span><\/p>\n

Most people want their surrogates to be able to respond to unforeseen circumstances and have leeway in decision-making while respecting their core goals and values, Sudore said.<\/span><\/p>\n

Among tools that can help patients and families are Sudore\u2019s <\/span>Prepare for Your Care<\/span><\/a> program; materials from the <\/span>Conversation Project<\/a>, Respecting Choices<\/span> and <\/span>Caring Conversations<\/a>; <\/span>and videos about health care decisions at <\/span>ACP Decisions<\/span><\/a>. <\/span><\/p>\n

The Centers for Disease Control and Prevention also has a comprehensive <\/span>list of resources<\/span><\/a>. <\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

For decades, Americans have been urged to fill out documents specifying their end-of-life wishes before becoming terminally ill\u2014living wills, do-not-resuscitate orders and other written materials expressing treatment preferences.<\/span><\/p>\n

Read more Top Experts Question the Value of Advance Care Planning<\/span> ›<\/span><\/a><\/div>\n

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