Have you considered what happens to your online life when you die?

One way to feel better about the future is making sure the right online data is passed down to friends, family, and partners.

By Roger Fingas

Most of the time people prefer to dodge the topic of death, for the obvious reason that it spawns a lot of uncomfortable thoughts. Yet the realistic and responsible thing to do is acknowledge it and prepare, since death is unavoidable and has huge ramifications for friends and family. This extends to your online life — so what sort of steps should you be taking to soften the digital transition for people left behind?

Step 1: Take advantage of posthumous account settings

Major tech platforms like Apple, Facebook, and Google offer tools to control how your data is handled when you die. Facebook for example lets you appoint a “legacy contact,” someone who can download your data, “memorialize” your account, and/or have your data deleted outright. If you don’t want anyone getting your Facebook content after you go, you can specify that ahead of time. Google offers some of the best tools via its Inactive Account Manager, which shares data selectively and/or deletes your account automatically after a set period. You can read more details in the feature linked below.

Whether or not a company offers dedicated tools, the bereaved can usually request that your online accounts be deactivated. This requires evidence of your death, of course, typically a death certificate. Things can get much tougher if someone wants data access — Apple requires that legacy contacts have both documentation and a special access key, and if they haven’t been appointed as a contact, they’ll have to get a court order if they’re in the US.

The key point here is that if a service is critical to your online life, you should be exploring the options it offers now instead of waiting until you’re knocking on death’s door. It’s one of the easiest things you can do to reduce the burden on loved ones.

Step 2: Share your logins

Under normal circumstances, sharing app and website logins is the last thing you’re supposed to do. But it only takes a moment to realize that if you haven’t written those logins down, you may be denying partners or family critical information — even money, if it’s trapped somewhere like a bank or a PayPal account. Logins are regularly excluded from the data companies are willing (or able) to share with the bereaved.

That makes it vital to build a logbook with usernames and passwords for every online service a loved one might need to access. Major items to check off include:

  • Bank accounts
  • Insurance accounts
  • Phone/TV/internet
  • Government services
  • Online payment services (PayPal, Venmo, etc.)
  • Chat/messaging apps and social media
  • Smart home platforms
  • Cloud storage
  • Photo libraries
  • Music, reading, and video subscriptions
  • Online stores

You might be tempted to use a password manager as a shortcut, but it’s risky.

Your logbook can be something as simple as a text or Excel file, as long as it’s easily accessible. Even better is one on paper, since that can’t be deleted, corrupted, or hacked. Either way, you need to keep your log both updated and protected, for instance by storing a paper logbook in a fireproof container.

If you’re sufficiently thorough, a bonus of this approach is that you might not even need the tools in Step 1. If a trusted person can log into your accounts directly, they can download all of your data and shut things off at will.

You might be tempted to use a password manager as a shortcut. This is risky, however — not only do all of the right people need logins and technical literacy, but they could also eventually be shut out if the app is subscription-based and you’re no longer around to pay. It’s not the worst solution, just one to approach with caution.

Step 3: Make plans with your loved ones

Both the first and second steps can be pointless if you don’t actually talk to your loved ones about them. They need to know what being a legacy contact entails, for example, and the legal hoops they’ll have to go through to retrieve your data or shut down an account. If you have a logbook, it’s important that people know how to find it.

Although the conversation can be tough, your loved ones should know the steps you took and how you’d like your online life to be managed.

This can be one of the toughest parts of preparing for your digital afterlife. No matter how technically savvy they are, a partner isn’t going to enjoy talking about your death, and the conversation gets even more harrowing with young children or elderly parents.

At some point, you’ll probably need to sit down with a legal advisor and add online data to your will. While we can’t make any guarantees, it may make things smoother if you’ve legally authorized access or deletion ahead of time.

Think of it this way — if you can overcome all of these issues, you’ll probably feel a little calmer about the future as a reward.

Complete Article HERE!

Scared of dying?

Here’s how to beat back the fear and find peace.

Death ‘is life’s change agent,’ Steve Jobs said in a famous 2005 speech.

By Morey Stettner

If you’ve lived a full life, you’re more apt to accept death. You’re able to wrap your mind around your demise without anger, panic or woe.

Yet for many retirees, the prospect of their own passing is immobilizing. A flurry of negative emotions vies for attention, from fear (“I’m afraid of a long, painful decline”) to regret (“I won’t see my grandchildren grow up”).

If you experience what psychologists call death anxiety, you’re not alone. Roughly one in five adults say they’re afraid of dying.

Older people may feel less haunted by death, especially if they’re terminally ill and receive hospice care. Surrounded by nurses and aides who prioritize emotional support and comfort, hospice patients tend to view their impending death with serenity.

On the other hand, some otherwise healthy seniors cannot bear to think about death. Whether it’s the realization that they have fewer years left, to dread that months or years of physical suffering await them, a dark cloud of foreboding invades their everyday life.

What separates those folks who take death in stride from the ones who let it eat away at their wellbeing?

“Part of it is having a more relaxed, flexible attitude and a willingness to rescind control over how we will die,” said Katherine King, an assistant professor of psychology at William James College in Newton, Mass. “A lot of us don’t tolerate uncertainty very well.”

If you have a controlling personality, pondering your death can cause agitation. Coping with such a sweeping, impossible-to-control force can prove crippling.

Another source of death anxiety relates to your overall satisfaction with how you’ve navigated your spiritual, creative and financial life. Generally, those who are fulfilled in these areas accept with equanimity that death is the next stage.

Steve Jobs qualifies as someone who attained a measure of fulfillment. Confronting his pancreatic cancer, he described death as “very likely the single best invention of life.”

Like many terminally ill people, he waxed philosophical about death. While we’ll never know if he cursed his bad luck in private, he took a more reassuring position in public.

“It is life’s change agent,” he said in his now-famous 2005 commencement address to Stanford University graduates. “It clears out the old to make way for the new. Right now the new is you, but someday not too long from now, you will gradually become the old and be cleared away.”

Aging in itself enables some people to accept death. The more funerals we attend, the more we start to see death in a new light.

“Losing people around us like friends and loved ones creates a feeling that it’s time,” King said. “It’s a natural preparatory process. As you get into your 80s and 90s, it can seem like the next task” on your to-do list.

But for those who continue to resist (“I’m not ready to die!”), honest self-reflection can help.

Ask yourself, “Do I have any unfinished business to tend to?”

“People who fear death tend to believe they haven’t completed their lives,” said Connie Zweig, a retired psychotherapist in Los Angeles, Calif. “So the key is to move toward completion, whether it’s completing a relationship where you still feel wounded or a business project that’s important to you. It’s that longing to reach a resolution.”

By taking steps to repair ruptured relationships, reclaim discarded dreams or intensify your search for spiritual or religious affirmation, you can address the nagging feeling that something’s missing. Checking off all the boxes in your life thus reduces death anxiety.

Speaking of religion, it can work for or against you when you’re grappling with the notion of your demise. Naturally, your beliefs about life after death play a big role.

“If you think you’ll be buried and a tree will grow there, that’s enough for some people,” said Zweig, author of “The Inner Work Of Age.” “Others are more religious and their beliefs can either give them solace or dread.”

Regardless of what’s driving your fear or sadness about death, detaching yourself from your inner demons can work wonders. It’s liberating to rise above your anxiety and, like Steve Jobs, take a big-picture view of what life’s all about.

Zweig recalls counseling a 70-year-old woman who was grieving from the loss of her parents, brother and best friend. Unlike some people who grow to accept death as they mourn the passing of loved ones, Zweig’s patient expressed mounting stress as she thought about her end-of-life.

“I suggested that she meditate,” Zweig said. “She learned how to quiet her nervous system and quiet her mind so that she could watch her thoughts about death and let them go. They became less gripping and less overwhelming.”

After a few months of meditation, the woman attained a heightened state of calm in mind and body. Even her breathing gave her comfort.

“Each time I breathe in and out, I’m practicing dying,” she told Zweig. The regularity of her breathing reduced her fear and gave her strength to persevere.

“In that way, she acclimated to those previously disturbing thoughts,” Zweig said. “She found peace of mind.”

Complete Article HERE!

Medical aid in dying is for preventing a hideous death, not for truncating an unhappy life

Amanda Villegas with her husband, Chris Davis, while he was in hospice care in June, 2019.

By George F. Will

Although Amanda Villegas’s manual dexterity is hindered by her mild case of cerebral palsy, she is a gifted photographer who documented the last five days of her husband’s life with bladder cancer that metastasized. She has posted the photos on Google Drive, under “This is Cancer.” Steel yourself before viewing them. But view them. They ground in reality the increasingly urgent debate about medical aid in dying (MAID).

Chris Davis was 29 when he died at home on June 19, 2019, just a week after doctors belatedly gave him a terminal prognosis. The tragedy of his disease had been compounded by multiple misdiagnoses. The unnecessary horrors of his final days were the result of a hospital’s misinformation — perhaps religiously motivated mendacity — and a restrictive provision of a California law that has been liberalized, effective Jan. 1, 2022.

Speaking recently by phone from California, Amanda said that Chris, who was skeletal at the end, was so drenched in pain that “he would cringe and scream if anyone touched or moved his bed.” He had been told two falsehoods, that MAID is illegal in California, then that it is legal only in Northern California. While he had the strength, he repeatedly screamed “please let me go.” He died with tubes draining fluids from his stomach, kidneys and chest.

California’s MAID law, as enacted in 2015, allows mentally capable adults, with a medical diagnosis of less than six months to live, the option of receiving prescription medication that enables them to die in their sleep. Until amended last year, the law’s eligibility process could take weeks, even months. It included a 15-day waiting period between two oral requests for the medication — a delay that put a peaceful end beyond Chris’s reach.

One-third of those beginning the eligibility process died before completing it. Beginning this year, the waiting period has been reduced to 48 hours, and hospitals and hospices will be required to post their MAID policies on their websites. (New Mexico adopted similar legislation last year.)

The Economist magazine, true to its classical liberal tradition, recently praised “the welcome spread of assisted dying” for advancing a “basic freedom” that is now “legal in one form or another in a dozen countries.”

Worldwide, MAID is generating useful data. A British study found that doctors tend to overestimate – by 500 percent — how long terminal patients will live, often to give those suffering illusory hope. In Oregon, which has had MAID since 1997, a third of those who receive end-of-life medication do not take it but derive comfort from having it at hand. In the 25 years since Oregon became the first state to legalize MAID, only 4,209 people nationwide have used it to assert their autonomy in ending their lives on their terms. Ninety percent died where most Americans say they want to die: at home, often with loved ones.

Kim Callinan, president and CEO of Compassion & Choices, which advocates for MAID, says it “creates a shift within our end-of-life care system from a paternalistic model to one that is resoundingly patient-driven.” Her organization says that “over the past six years, 30 national and state medical and professional associations have endorsed or dropped their opposition to” MAID.

Skeptics understandably warn about a slippery slope: Persons worried about becoming burdens on their families might find the MAID option coming to imply an obligation. So, a doctor mentioning it might inadvertently be experienced as coercive. If MAID is justified by fear of severe pain culminating in death in less than six months, what about informed choices by mentally sound persons gripped by advancing dementia? Or the psychological afflictions of, say, persons deeply weary of life. Are such persons mentally capable?

Crucially, MAID is for those who are already dying and want help — for preventing a hideous death, not for truncating an unhappy life. MAID — the medical management of a natural process — should be considered a supplement to hospice (palliative) care.

Life is lived on a slippery slope: Taxation can become confiscation, police can become instruments of tyranny, laws can metastasize suffocatingly. However, taxation, police and laws are indispensable. The challenge is to minimize dangers that cannot be entirely eliminated from society.

In percentage terms, Americans 85 and older are the nation’s most rapidly growing age cohort. Medical marvels extend, and enhance the quality of, life — up to a point. MAID, enveloped in proper protocols, can and should be a dignity-enhancing response to especially harrowing rendezvous with the inevitable.

Complete Article HERE!

Dying Young

— Americans Under Age 25 Face Higher Death Rates than Peers in Other Affluent Nations

New report shows lower life expectancy for young Americans; ‘aggressive action’ needed to increase survival rates for infants, children, young adults

Americans ages 15 to 24 are twice as likely to die as their peers in France, Germany, Japan and other wealthy nations, while the infant mortality rate is up to three times higher in the United States. That’s according to a new report released today by the Population Reference Bureau (PRB) that cites violence, poverty and racial disparities as the primary drivers of high death rates and lower life expectancies among children and young people in the United States.

Dying Young in the United States: What’s Driving High Death Rates Among Americans Under Age 25 and What Can Be Done? provides the most comprehensive look at deaths among young Americans before the start of the COVID-19 pandemic. The report, prepared in collaboration with researchers from UNLV, the University of Colorado Boulder, University of North Carolina at Chapel Hill, and Duke University, finds that injuries, suicides and homicides are the leading causes of death among children and young adults, and premature birth and congenital abnormalities are the top causes of infant mortality.

In 2019 alone, nearly 60,000 people under age 25 died in the United States, including almost 21,000 infants. Poverty, race/ethnicity, gender, parental education, family structure and regional location are important factors in mortality risk among young Americans, with children and young people in southern states at greater risk for early death, the report finds.

“These differences are particularly striking because we tend to think of early life deaths as random, either from congenital problems or ‘freak accidents,’ but these consistent, robust patterns show that risk and protective factors related to death in early life differ depending on the resources and circumstances of families,” said Elizabeth Lawrence, an assistant professor of sociology at UNLV and a co-author on the report.

The research team was led by Richard G. Rogers, professor of sociology and fellow of the Institute of Behavioral Science at the University of Colorado Boulder, and Robert A. Hummer, professor of sociology and fellow of the Carolina Population Center at the University of North Carolina at Chapel Hill, with funding from the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health.

“The death of a child or young adult is a tremendous tragedy for parents, for families and for our society,” Hummer said. “As the report shows, a significant number of young lives could have been saved through policies and interventions addressing safety and social and economic inequities, making these losses even more tragic.”

Among the key findings:

  • While mortality rates for young people have been steadily declining in other wealthy nations, including Canada, Japan and the United Kingdom they’ve remained stagnant or risen in the United States among every age group under 25.
  • Six of the 10 states with the highest age-adjusted death rates for ages 1 to 24 are in the South: Alabama, Arkansas, Louisiana, Mississippi, South Carolina and Tennessee.
  • Despite having one of the world’s highest income levels, the United States has one of the highest infant mortality rates—about three times as high as Finland, Japan, and Slovenia, largely because it has higher percentages of preterm births.
  • Economic and racial disparities are drivers of higher infant mortality rates among Black mothers compared with white mothers, with the death rate for Black infants twice that of infants born to non-Hispanic white mothers.

“We are publishing this report to inform policymakers and provide the data and evidence needed to prioritize social, economic and health policies and programs that could reduce the number of preventable deaths among young Americans,” said Linda Jacobsen, vice president of U.S. Programs for PRB, a nonprofit that analyzes and publishes data on population and health trends.

While it’s too early to fully assess the impact of the COVID-19 pandemic on mortality patterns, the authors warn that growing mental health and substance abuse problems experienced by young Americans during this period could contribute to rising death rates in the wake of the pandemic.

To reverse these trends, the authors recommend reducing child poverty through direct payments and expanded tax credits, alongside funding for child care, preschool, housing, nutrition and health care. 

“One action that is particularly pressing now is reinstating the child tax credit that recently expired,” Lawrence said. “Providing resources for the neediest families of our nation could do a lot of good in promoting the survival and well-being of babies and children.”

Researchers also call for addressing racial and ethnic barriers to improve access to quality health care and reproductive health programs. Improving treatment for and prevention of mental illness and substance abuse, as well as enacting broad safety measures related to guns and gun ownership, could also save many young lives.

“Immediate and aggressive action is needed at both the federal and state levels to stem death rates among those under the age of 25 in the United States,” Rogers said. “More purposefully supporting infants, children, young adults and young families is an essential way to ensure a brighter future for all Americans.”

Complete Article ↪HERE↩!

Living With Anticipatory Grief

There are different kinds of grief. This unique sense of loss, which comes with waves of change, will likely become more common as humans face an increase in degenerative and aging-related illnesses.

By Emilie Le Beau Lucchesi

Tamara Hilliard learned in November 2017 that her husband, then 64, had amyotrophic lateral sclerosis (ALS), a fatal disease of the nervous system.

“I’ve been grieving since we got the diagnosis,” says Hilliard of Fort Worth, Texas. “For a long time, I’ve been sad, knowing that he was going to suffer, that he was going to die.”

Her husband, Jim, was an orthopedic surgeon and a former college football player for the University of Texas. His once hulking body soon began to deteriorate.  He was able to walk through 2018, although he transitioned to a walker and eventually a motorized chair.  “From Christmas 2019 on, he was completely dependent on me,” she says.

The progression was painful for Hilliard. Jim lost his ability to hold a fork, wash himself and, eventually, speak. “It’s so awful to watch someone you love lose something every day,” she says.  “Every day was a loss.”  

Social scientists describe an experience like Hilliard’s as anticipatory grief. It’s a grief process that involves not only dreading a loved one’s pending death, but also mourning the changes in daily life that occur as the person succumbs to illness.

In today’s modern world, multiple factors are combining to amplify occurrences of anticipatory grief. As life expectancies have increased and smoking-related deaths have diminished, degenerative illnesses associated with aging, such as dementia,  are increasing. Public health experts expect higher incident rates for degenerative diseases like ALS, dementia, Parkinson’s and some types of cancers in the coming decades. For diseases like dementia, in which an average of four to eight years stretches between diagnosis and death, a loved one can endure many months of anticipatory grief.

Understanding Grief

Anticipatory grief is a relatively new psychological concept and was first considered in Western literature by Erich Lindemann in the 1940s. He studied the deadly nightclub fire at Boston’s Cocoanut Grove, which killed almost 500 people.

“It was one of the first empirical studies on grief,” says Ken Doka, senior vice president of grief programs for the Hospice Foundation of America. “He mentioned that you could grieve a death that not only happened but is occurring.”

However, Doka says, scholars in the 1970s were divided in their views about anticipatory grief. Some scholars believed that anticipatory grief lessened the emotions a person felt once their loved one actually passed. “It was a hydrostatic view of grief – you only have so much grief and the more tears you shed before the death, the less you shed after the death,” Doka says. “That was unproductive. There was no research to support that.”

Social scientists have since learned more about anticipatory grief and now hold that it’s not only about the pending death of a loved one. “It’s not just about expecting a death, it’s about all the losses you experience along the way,” Doka says.

Loss of Life

Terminal conditions such as ALS or dementia involve incremental changes that alter a patient and their life for years prior to death. For loved ones, these changes are losses to the life they once shared with the patient and the source of anticipatory grief.

One 2018 study of anticipatory grief found that people caring for spouses with late-stage dementia had higher anticipatory grief than caregivers of loved ones in the earlier stages because their daily life had been altered more extensively.

Spouses in the late-end stage also had higher anticipatory grief than other caregivers, such as adult children, who weren’t life partners coping with the loss of living daily life together.

Anxiety and depression is associated with anticipatory grief, and for some people, there can also be difficulty making medical decisions for their loved one. In another 2018 study of people serving as the medical surrogate for a loved one in the ICU, spouses had worsened decision making than the surrogates who were either adult children of the patients or the parent to the patient.

Such studies are prompting scholars to call for clear and supportive communication with medical surrogates in ICUs, as well as additional compassion for people whose loved ones are in palliative or hospice care.

Evolving Grief

For Hilliard, grief was a complex and fluid emotion that changed along with her husband’s condition.

The diagnosis was a shock, and she says it felt in the moment like a sudden death, even though he was still alive. “You’re bombarded and you can’t believe it,” she says. “It was like dying.”

She mourned throughout his illness as his body changed and their daily life was altered. Then, she felt a new type of grief during the last six weeks of his life when he was incapacitated and could no longer speak. During that time, she says she remembers she wanted him to pass peacefully so that his suffering would end.

Jim died in September 2021, and Hilliard was left without her husband of almost 34 years. His absence has been a time for her to reflect on their life together. “Now the grief trickles out. Now I feel I grieve the Jim before he was sick. I couldn’t in the moment when I was taking care him,” she says.

She remembers the man she says was brilliant and had a witty, sarcastic sense of humor. She mourns the husband who insisted on having the last word in their affectionate banter by always saying, “I love you more.”

“I miss him, I miss him every day,” she says.

Complete Article HERE!

What a terminal cancer diagnosis is teaching this neuroscientist about the human mind

David J. Linden, a neuroscientist, writes in The Atlantic about how facing the end of his life is teaching him about the human mind.


Neuroscientist David J. Linden is dying.

But the impending end of his life doesn’t mean he’s done learning about the human mind just yet. Linden was recently diagnosed with terminal cancer. In a piece in The Atlantic, he writes: “I may be dying, but I’m still a science nerd.”

During a routine echocardiogram, doctors noticed something sticking up next to Linden’s heart that they thought was a hiatal hernia or a benign growth called a teratoma, he says. After the tumor was removed, a biopsy found it was a form of malignant cancer called synovial sarcoma that had grown into the wall of his heart — making it impossible to remove.

One way the biomedical researcher at Johns Hopkins University School of Medicine processes his diagnosis is by nerding out about it. His doctors showed him photos of his tumor and heart surgery to his excitement.

“It is empowering to be a nerd about something really grim, meaning my own terminal cancer,” he says. “But I think the more interesting thing is what it has led me to think about the human mind.”

After his diagnosis, he writes that feelings of anger about his shortened time came alongside gratitude for his love, relationships and career in neuroscience.

The fact that the human brain can occupy two mental states at once may be obvious for most people, Linden says, but it took his diagnosis for him to realize it.

In neuroscience, researchers believe people have a specific mental state at a given moment: sleepy or alert, exploring or pulling back.

“In truth, you can occupy more than one cognitive state at once, even if these states at first blush would seem to be contradictory,” he says, “like in my case, are gratitude and anger.”

Linden writes that there is no objective human experience: “All that we perceive and feel is colored by expectation, comparison and circumstance.” One example of this is people’s relative conception of time.

Time drags on while you wait in line at the Department of Motor Vehicles, he says, but it flies when you’re having a beer and conversation with a friend.

“All of our human perception is constructed. There is no objective experience in the world,” he says. “It’s all colored by our mood and our expectations.”

The concept of five years can feel different depending on where you are in life, he writes. One might think five years has a fundamental value that can’t change, but he knows that’s not the case.

“If someone had told me before my diagnosis that I had five years left to live, I would have been feeling deeply cheated and offended,” Linden says. “But now, with my prognosis of six to 18 months of life to live, the idea of five more years seems like an impossible gift.”

The human brain isn’t wired to comprehend our own death — that we will someday no longer exist, he says.

Linden can practically deal with his impending death by finalizing his will, getting his finances in order and writing recommendations for his trainees to help further their careers after he’s gone. But he finds himself failing to “deeply engage” with the idea of a world without him, he says.

“My mind skitters over the surface of this, and I don’t think that’s a personal failing,” he says. “I think it is telling us something about being human.”

When Linden entered the neuroscience field 43 years ago, he learned that the brain is reactive: Humans use their senses to make decisions about the world around them. One recent advancement in the field is the knowledge that the brain is always active and predicting the near future.

The brain spends a lot of time trying to figure out if other people are friends or enemies, or whether hunger is approaching, he says.

“The idea that the brain is constantly working to predict the near future presupposes that there will be a near future,” he says. “And I think in this way, our brains are hard-wired to have a problem with truly engaging with our own demise.”

Linden has been pondering questions about immortality and how our inability to engage with our own deaths has influenced human history in the form of religion. Almost all of the world’s major religions believe in an afterlife, reincarnation or some form of an “immortal soul” that lives beyond the demise of the body, he says.

“What I suspect is … that this is a result of the fact that our brains are hardwired to continuously predict the future and thereby to make it very difficult for us to imagine ourselves gone,” he says. “I think that this is the way this manifests in the species, the way it manifests societally.”

Considering the extent of religion’s impact on human society, it’s “astonishing” to think about how much this one aspect of the brain has molded humanity, he says.

Taking a step back and observing the human mind in this way gives Linden comfort in his final days.

“To me, thinking about the way my own impending death informs me about the human mind is a way for me to take control of my situation — to feel a sense of agency — rather than just being passive and borne along by this medical problem,” he says. “I feel that it’s given me a way to engage, to think to the end. And that’s an enormous gift.”

Complete Article HERE!

We Need a New Paradigm for Final Wishes

BY 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 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 hasn’t 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, 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 percent of adults have completed written advance directives, which in her view is 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.

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