A New Paradigm Is Needed: Top Experts Question the Value of Advance Care Planning

Judith Graham   For decades, Americans have been urged to fill out documents specifying their end-of-life wishes before becoming terminally ill — living wills, do-not-resuscitate orders, and other written materials expressing treatment preferences. Now, a group of prominent experts is saying those efforts should stop because they haven’t improved end-of-life care. “Decades of research demonstrate…

A New Paradigm Is Needed: Top Experts Question the Value of Advance Care Planning

For decades, Americans have been urged to fill out documents specifying their end-of-life wishes before becoming terminally ill — living wills, do-not-resuscitate orders, and other written materials expressing treatment preferences.

Now, a group of prominent experts is saying those efforts should stop because they haven’t improved end-of-life care.

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

“A 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’t achieve the results that we hoped it would,” said Dr. Diane Meier, founder of the Center to Advance Palliative Care, a professor at Mount Sinai and co-author of the opinion piece. Notably, advance care planning has not been shown to ensure that people receive care consistent with their stated preferences — a major objective.

“We’re saying stop trying 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 collaborated on the article. “Many highly educated people think documents prepared years in advance will protect them if they become incapacitated. They won’t.”

The reasons are varied and documented in dozens of research studies: People’s 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’s stated preferences; documents aren’t readily available when decisions need to be made; and services that could support a patient’s wishes — such as receiving treatment at home — simply aren’t available.

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

Advance care planning has evolved significantly in the past decade and the focus today is on conversations between patients and clinicians about patients’ goals and values, not about completing documents, said Dr. Rebecca Sudore, 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’t be discounted, she said.

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.

When people with serious illnesses have conversations of this kind, “our 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,” said Dr. Jo Paladino, associate director of research and implementation for the Serious Illness Care Program at Ariadne Labs, a research partnership between Harvard and Brigham and Women’s Hospital in Boston.

Advance care planning “may 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,” 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 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.

“I have not made very many specific decisions yet, but I feel like these discussions bring me comfort and prepare me for making decisions later,” he told me. Assessments of advance care planning’s effectiveness should take into account these deeply meaningful “unmeasurable benefits,” Curtis wrote recently in JAMA in a piece about his experiences.

The emphasis on documenting end-of-life wishes dates to a seminal legal case, Cruzan v. Director, Missouri Department of Health, 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’s right to do so, citing the need for “clear and convincing evidence” of an incapacitated person’s wishes.

Later that year, Congress passed the Patient Self-Determination Act, which requires hospitals, nursing homes, home health agencies, health maintenance organizations and hospices to ask whether a person has a written “advance directive” 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.

But too often this became a “check-box” exercise, unaccompanied by in-depth discussions about a patient’s prognosis, the ways that future medical decisions might affect a patient’s quality of life, and without a realistic plan for implementing a patient’s wishes, said Meier, of Mount Sinai.

She noted that only 37% of adults have completed written advance directives — in her view, a sign of uncertainty about their value.

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

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.

“Rather 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,” when actual medical circumstances require attention, said Morrison, of Mount Sinai.

Also, determining when the end of life is at hand and when treatment might postpone that eventuality can be difficult.

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 “universally fatal” to seniors. He said he and his colleagues witnessed this happen repeatedly.

“What didn’t happen was an informed conversation about the likely outcome of developing covid and the possibilities of recovery,” even though most older adults ended up surviving, he said.

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

“This won’t 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 care for people with serious illnesses for the National Academies of Sciences, Engineering and Medicine.

“Talk to your surrogate about what matters most to you,” he urged, and update that person whenever your circumstances or preferences change.

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.

Among tools that can help patients and families are Sudore’s Prepare for Your Care program; materials from the Conversation ProjectRespecting Choices and Caring Conversations; and videos about health care decisions at ACP Decisions.

The Centers for Disease Control and Prevention also has a comprehensive list of resources.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

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Direct Care Workers and Unpaid Caregivers Describe Low-Wage, Stressful, Physically-Challenging Work

This story is from the Kaiser Health News.

In recent focus group interviews, 32 paid direct care workers and unpaid caregivers who assist seniors and people with disabilities with self-care and household activities describe daily work defined by low pay, physical demands and mental stress that has been made worse by the pandemic.

KFF conducted the four focus groups in July and August 2021 with 24 direct care workers and eight unpaid caregivers to help provide context for the ongoing debate in Congress about increasing federal funding for Medicaid home and community-based services (HCBS). Medicaid is the nation’s primary payer for such services. Among other uses, new funding could help raise wages for direct care workers, provide training opportunities, and offer supports to family caregivers such as respite care and peer supports.

Key takeaways from the focus groups include:

  • These jobs are mentally demanding as well as physically taxing. Paid caregivers reported that the mental demands of their jobs had intensified during COVID-19. Among other things, they cited the fear of infecting their clients or bringing the virus home to infect their families. Unpaid family caregivers described the mental demands associated with caregiving as often “overwhelming.”
  • Uncertainty is a constant. A number of paid caregivers described regularly experiencing uncertainty about whether they would be able to leave work at the end of their shift due to staffing shortages and scheduling challenges that were exacerbated by the pandemic. (It is unclear how vaccination mandates might contribute to workforce shortages, as participants in the paid direct care worker groups were divided about whether to receive the COVID-19 vaccine.)
  • Caregivers feel there is a mismatch between their work and their wages. Paid direct care workers universally agreed that their wages are low and do not reflect the demands of their jobs. They described their financial situation as “getting by” and “living paycheck to paycheck.” Some participants in the unpaid caregiver group said the demands of caregiving made it impossible to have paid work.

The racially and geographically diverse group of focus group participants worked in a range of job types, both full- and part-time, and cared for people with a variety of disabilities and long-term care needs. The report presents key highlights from the focus groups including caregiver characteristics; physical and mental caregiving demands; the impact of workforce shortages; wages, finances, and opportunities for advancement; and what caregivers would like policymakers to know about their work. While these focus groups are not necessarily generalizable to all caregivers, they can provide insight into their experiences to help inform current policy debates.

The American Rescue Plan Act (ARPA), passed earlier this year, provides states with a one-year, 10 percentage point increase in federal Medicaid matching funds (FMAP) for HCBS. Congress is currently debating efforts to increase federal matching funds, without a time limit, for state spending on Medicaid HCBS as part of an overall budget reconciliation package, although the final funding amount remains in flux as policymakers weigh competing priorities.

Read the brief.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Direct Care Workers and Unpaid Caregivers Describe Low-Wage, Stressful, Physically-Challenging Work

This story is from the Kaiser Health News. In recent focus group interviews, 32 paid direct care workers and unpaid caregivers who assist seniors and people with disabilities with self-care and household activities describe daily work defined by low pay, physical demands and mental stress that has been made worse by the pandemic. KFF conducted the…

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Desperate for Home Care, Seniors Often Wait Months With Workers in Short Supply

CASTINE, Maine — For years, Louise Shackett has had trouble walking or standing for long periods, making it difficult for her to clean her house in southeastern Maine or do laundry. Shackett, 80, no longer drives, which makes it hard to get to the grocery store or doctor.

Her low income, though, qualifies her for a state program that pays for a personal aide 10 hours a week to help with chores and errands.

“It helps to keep me independent,” she said.

But the visits have been inconsistent because of the high turnover and shortage of aides, sometimes leaving her without assistance for months at a time, although a cousin does help look after her. “I should be getting the help that I need and am eligible for,” said Shackett, who has not had an aide since late March.

The Maine home-based care program, which helps Shackett and more than 800 others in the state, has a waitlist 925 people long; those applicants sometimes lack help for months or years, according to officials in Maine, which has the country’s oldest population. This leaves many people at an increased risk of falls or not getting medical care and other dangers.

The problem is simple: Here and in much of the rest of the country there are too few workers. Yet, the solution is anything but easy.

Katie Smith Sloan , CEO of Leading Age, which represents nonprofit aging services providers, says the workforce shortage is a nationwide dilemma. “Millions of older adults are unable to access the affordable care and services that they so desperately need,” she said at a recent press event. State and federal reimbursement rates to elder care agencies are inadequate to cover the cost of quality care and services or to pay a living wage to caregivers, she added.

President Joe Biden allotted $400 billion in his infrastructure plan to expand home and community-based long-term care services to help people remain in their homes and out of nursing homes. Republicans pushed back, noting that elder care didn’t fit the traditional definition of infrastructure, which generally refers to physical projects such as bridges, roads and such, and the bipartisan deal reached last week among centrist senators dealt only with those traditional projects. But Democrats say they will insist on funding some of Biden’s “human infrastructure” programs in another bill.

As lawmakers tussle over the proposal, many elder care advocates worry that this $400 billion will be greatly reduced or eliminated.

But the need is undeniable, underlined by the math, especially in places like Maine, where 21% of residents are 65 and older.

Betsy Sawyer-Manter, CEO of SeniorsPlus in Maine, one of two companies that operate that assistance program, said, “We are looking all the time for workers because we have over 10,000 hours a week of personal care we can’t find workers to cover.”

For at least 20 years, national experts have warned about the dire consequences of a shortage of nursing assistants and home aides as tens of millions of baby boomers hit their senior years. “Low wages and benefits, hard working conditions, heavy workloads, and a job that has been stigmatized by society make worker recruitment and retention difficult,” concluded a 2001 report from the Urban Institute and Robert Wood Johnson Foundation.

Robyn Stone , a co-author of that report and senior vice president of Leading Age, says many of the worker shortage problems identified in 2001 have only worsened. The risks and obstacles that seniors faced during the pandemic highlighted some of these problems. “Covid uncovered the challenges of older adults and how vulnerable they were in this pandemic and the importance of front-line care professionals who are being paid low wages,” she says.

Michael Stair, CEO of Care & Comfort, a Waterville, Maine-based agency, said the worker shortage is the worst he’s seen in 20 years in the business.

“The bottom line is it all comes down to dollars — dollars for the home care benefit, dollars to pay people competitively,” he said. Agencies like his are in a tough position competing for workers who can take other jobs that don’t require a background check, special training or driving to people’s homes in bad weather.

“Workers in Maine can get paid more to do other jobs that are less challenging and more appealing,” he added.

His company, which provides services to 1,500 clients — most of whom are enrolled in Medicaid, the federal-state health program for people with low incomes — has about 300 staffers but could use 100 more. He said it’s most difficult to find workers in urban areas such as Portland and Bangor, where there are more employment opportunities. Most of his jobs pay between $13 and $15 an hour, about what McDonald’s restaurants in Maine advertise for entry-level workers.

The state’s minimum wage is $12.15 an hour.

Stair said half his workers quit within the first year, a little better than the industry’s average 60% turnover rate. To help retain employees, he allows them to set their own schedules, offers paid training and provides vacation pay.

“I worry there are folks going without care and folks whose conditions are declining because they are not getting the care they need,” Stair said.

Medicare does not cover long-term home care.

Medicaid requires states to cover nursing home care for those who qualify, but it has limited entitlement for home-based services, and eligibility and benefits vary by state. Still, in the past decade, states including Maine have increased funding to groups providing Medicaid home and community services — anything from medical assistance to housekeeping help — because people prefer those services and they cost much less than a nursing home.

The states also are funding home care programs like Maine’s for those same services for people who don’t qualify for Medicaid in hopes of preventing seniors from needing Medicaid coverage later.

But elder care advocates say the demand for home care far outweighs supply.

Bills in the Maine legislature would increase reimbursement rates for thousands of home care workers to ensure they are being paid more than the state’s minimum wage.

The state does not set worker pay, only reimbursement rates.

It’s not just low pay and lack of benefits that hobbles the hiring of workers, according to experts who study the issue. In addition, home care providers struggle to recruit and retain workers who don’t want the stress of caring for people with physical disabilities and, often, mental health issues, such as dementia and depression, said Sawyer-Manter of SeniorsPlus.

“It’s backbreaking work,” said Kathleen McAuliffe, a home care worker in Biddeford, Maine, who formerly worked as a Navy medic and served in the Peace Corps. She provides homemaker services for a state-funded program run by Catholic Charities. She usually visits two clients a day to help them with chores like cleaning and scrubbing floors, wiping down bathrooms, vacuuming, preparing meals, food shopping, organizing medicines and getting them to the doctor.

Her clients range in age from 45 to 85. “When I walk in, the laundry is piled up, the dishes are piled up, and everything needs to be put in order. It’s hard work and very taxing,” said McAuliffe, 68.

She makes about $14 an hour. Though the job of taking care of the frail elderly requires broad skills — and training in things like safe bathing — it is generally classified as “unskilled” labor. Working part time, she gets no vacation benefits. “Calling us homemakers sounds like we are coming in to bake brownies,” she said.

The homemaker program serves 2,100 Maine residents and has more than 1,100 on a waitlist, according to Catholic Charities Maine. “We can’t find the labor,” said Donald Harden, a spokesperson for the organization.

The federal government is giving states more dollars for home care — at least temporarily.

The American Rescue Plan, approved by Congress in March, provides a 10 percentage point increase in federal Medicaid funding to states, or nearly $13 billion, for home and community-based services.

The money, which must be spent by March 2024, can be used to provide personal protective equipment to home care workers, train workers or help states reduce waiting lists for people to receive services.

For Maine, the bump in funding from the American Rescue Plan will provide a $75 million increase in funding. But Paul Saucier, aging and disability director at the Maine Department of Health and Human Services, said the money will not make the waitlists disappear, because it will not solve the problem of too few workers.

Joanne Spetz, director of the Health Workforce Research Center on Long-Term Care at the University of California-San Francisco, said throwing more money into home care will work only if the money is targeted for recruiting, training and retaining workers, as well as providing benefits and opportunities for career growth. She doubts significant improvements will occur “if we just put money out there to hire more workers.”

“The problem is the people who are in these jobs always get the same amount of pay and the same low level of respect no matter how many years they are in the job,” Spetz said.

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