Tag: Advance Directives

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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 Project, Respecting 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.

Complete Article ↪HERE↩!

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End-of-life conversations can be hard, but your loved ones will thank you

You can start these conversations simply, like saying, “I need to think about the future. Can you help me?”

By

Death – along with taxes – is one of life’s few certainties. Despite this inevitability, most people dread thinking and talking about when, how or under what conditions they might die.

They don’t want to broach the topic with family, either, for fear of upsetting them. Ironically, though, talking about death “early and often” can be the greatest gift to bestow on loved ones.

As a sociologist who has studied end-of-life issues for more than two decades, I’ve learned that people know they should talk about death honestly and openly, but surprisingly few do. In fact, one recent study showed that while 90% of adults say that talking to their loved ones about their end-of-life wishes is important, only 27% have actually had these conversations.

It’s frightening to think about our own suffering, or our loved ones’ distress. But everyone should talk about and prepare for death precisely because we want to minimize our own suffering at the end of life, and soften the anguish of loved ones left behind.

No time to plan

These conversations are more urgent now than ever, as the COVID-19 pandemic has changed how Americans die.

For the past several decades, most adults have died from chronic illnesses like heart disease, cancer and lung disease. The time between diagnosis and death for people with these conditions can be months or even years. That gives patients and their families ample time to share their feelings, resolve unfinished business, and make practical preparations for death – including estate planning, advance care planning and even planning a celebration of life that bears the dying patient’s creative imprint.

But when the pandemic struck in 2020, COVD deaths began to occur quickly and unexpectedly, with many patients dying just days after they felt their first symptoms. Their families were robbed of final moments together and often had no documents in place to guide the patient’s health care or the distribution of their possessions. This suddenness, isolation and lack of preparedness all are hallmarks of a “bad death” for both the patient and their family.

What to cover

Advance care planning, which typically involves a living will and a health care proxy, allows people to articulate which medical treatments they want or don’t want at the end of life.

A living will formally articulates preferences for care, such as whether to use comfort measures like hospice and palliative care, or more invasive measures like feeding tubes and ventilators. Documenting these preferences when the patient is still able to make those decisions helps to ensure they die on their own terms – a cornerstone of the “good death.”

Appointing a health care proxy when still relatively young and healthy gives people an opportunity to decide who will be tasked with their end-of-life decision-making. It also clarifies loved ones’ responsibilities and can fend off arguments that could arise around the deathbed. Having these discussions early also prevents panicked choices when someone’s health takes a dramatic turn for the worse.

A woman and her older mother sit on a porch, drinking coffee.
End-of-life conversations can ease suffering for families, not just patients.

End-of-life discussions also help you to construct your own legacy. In “Death and Identity,” a classic book in death studies, sociologist Robert Fulton observed that “preserving rather than losing … personal identity” is a critical aspect of the dying process. Being treated like a “whole person” is a core component of a good death, and honest discussions are a key to maintaining your unique identity, even at the end of life.

Conversations also help us share how we’d like to be celebrated after we’re gone. This might be as simple as dictating the music, food, and photo or video displays for a memorial service; where to spread ashes; or charities for mourners to support. Some people take more ambitious steps at leaving behind a legacy, such as penning an autobiography or leaving behind videos for relatives. Creating a “post-self” that lingers years after the body has died can be a cherished gift to families.

Getting started

Broaching these conversations can be awkward or unnerving, but it doesn’t have to be. Death is a natural and inevitable part of life and should be approached as such. I have argued that the end of life is a stage, just as childhood, adolescence and old age are.

Each stage teaches lessons for the others that lie ahead.

Children learn skills in school that they’ll need to enter the workforce. Teens learn how to navigate romantic relationships as preparation for the future. Adults of all ages can learn about hospice and end-of-life medical care, make preparations for passing on their inheritance and discuss how they’d like to be honored in death. These steps can help attain an end of life marked by peace and self-directedness, rather than strife and the loss of autonomy.

An older Black woman writes as she sits at a dining room table in front of a china cabinet.
Recording memories and ideas for a memorial service can help you craft your own legacy.

Ample resources are available to guide these conversations. Organizations like The Conversation Project – not related to The Conversation – have created guides for productive end-of-life discussions. Advance care planning documents ranging from living wills to the “Five Wishes” program, which helps clarify people’s values about how they’d like to spend their final days, can be a good starting point.

A simple introduction like “I need to think about the future. Will you help me?” is a good icebreaker. And the first conversation eases the path to future chats, because changes in physical health, family relations and mental sharpness may necessitate revisions in end-of-life plans.

By discussing these issues during calm times, such as after a holiday get-together or birthday dinner, we can feel prepared and empowered as we and our families approach the inevitable.

Complete Article ↪HERE↩!

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Is It Time to Rethink End-of-Life Decisions and Care?

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 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 Project, Respecting 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.

Complete Article ↪HERE↩!

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ePOLST Registries: Moving into the Digital Age

Providers should be aware of and be involved in the conversation about these upcoming registries as they will interact with them frequently.

The upper half of the California POLST.

By ,

You arrive on scene to a call of a 72-year-old woman with metastatic lung cancer who has difficulty breathing at her nursing facility. The woman is unresponsive and thready pulses become difficult to palpate. The nursing facility staff is unable to locate any paper POLST forms. What are your next steps?

The POLST program – Physician Orders for Life-Sustaining treatment – was developed by medical ethicists in Oregon in 1991 as a tool to help honor patients’ wishes for end-of-life treatment.1 Today, all 50 states and Washington, DC, have existing POLST programs with varying functional capacities and names for the actual form (i.e. Medical Order for Life Sustaining Treatment (MOLST), Physician Order for Scope of Treatment (POST) etc.). POLST forms are most useful for people who are medically frail or seriously ill from chronic, progressive health conditions. They contain important, actionable medical orders that are portable for use across health settings – such as emergency medical services (EMS), emergency departments and long-term care facilities.

Several studies have demonstrated the efficacy of POLST forms over the years. POLST forms have been shown to have significant advantages over traditional methods to communicate preferences regarding life-sustaining treatments,2 and their use has been shown to result in a very high percentage of patients receiving care consistent with their prior expressed wishes.3 However, their use is not without barriers. One key barrier can be their inaccessibility. The form, if not readily available to health care providers, isn’t helpful in time-critical situations. A 2004 survey of Oregon EMTs showed a quarter of respondents stated that they were unable to successfully find a POLST in a timely manner the last time they had expected to do so.4 In 2009, Oregon legislation introduced an electronic POLST registry. This was to address EMS challenges in accessing or locating original POLST orders when they arrived on the scene of a medical emergency. By 2015-2016, nearly half of all deaths in Oregon had an active form in their electronic registry.5 As of 2020, the Oregon Registry has almost half a million POLST forms.6

California’s Assembly Bill No. 1234 was introduced by Assembly Member Arambula (D-Fresno) in February 2021 and would require the California Health and Human Services Agency to establish a statewide electronic POLST registry system.7 It is being backed by the Coalition for Compassionate Care of California (CCCC) and Arambula, himself, is a prior emergency physician. In addition to creation of a statewide registry, the bill lays out a timeline for its implementation (2024-2026), ensures that an electronic POLST (ePOLST) would have the same legal standing as a paper form, and that electronic signatures could be used.

As of 2020, at least 10 states have started development of or already created statewide registries.8 Some registries have capability for electronic form completion, some function simply as databases, and others have a hybrid system. Input from pilot studies that have been performed in San Diego and Contra Costa County along with experiences with ePOLST registries from other states are helping shape what California’s statewide registry will eventually look like.

The current progress of POLST state registries as of April 2021.
The current progress of POLST state registries as of April 2021.

ePOLST registries have several advantages over the traditional POLST. The main advantage being their universal accessibility by healthcare providers and patients. Other potential advantages include the ability to provide educational material to patients at time of form completion, development of mechanisms to prevent incomplete or incongruent (i.e. Full Code + Do Not Intubate) form submissions,9 and remote signing. However, there are several potential pitfalls to be mindful of – such as assuring the repositories are HIPPA-compliant, easily searchable, interface with local health information exchanges, and have back-up mechanisms for access (i.e. call center) in case of technology failure.

EMS will be at the forefront of interfacing with these registries and as such should be involved in the conversation regarding their development. Properly developed and implemented, a state-wide ePOLST has the opportunity to improve EMS and emergency departments provider POLST access difficulties, facilitate accurate POLST completion, and improve our ability to provide patient’s with the care they want near the end-of-life.

References

  1. National POLST: History [Internet]. Washington DC: National POLST; c2017-2021. [cited 2021, Nov 3]. Available from: https://polst.org/history/
  2. Hickman SE, Nelson CA, Perrin NA, Moss AH, Hammes BJ, Tolle SW. A comparison of methods to communicate treatment preferences in nursing facilities: traditional practices versus the physician orders for life-sustaining treatment program. J Am Geriatr Soc. 2010 Jul;58(7):1241-8. doi: 10.1111/j.1532-5415.2010.02955.x. PMID: 20649687; PMCID: PMC2963454.
  3. Hopping-Winn J, Mullin J, March L, Caughey M, Stern M, Jarvie J. The Progression of End-of-Life Wishes and Concordance with End-of-Life Care. J Palliat Med. 2018 Apr;21(4):541-545. doi: 10.1089/jpm.2017.0317. Epub 2018 Jan 3. PMID: 29298109.
  4. Zive DM, Schmidt TA. Pathways to POLST registry development: Lessons learned. Portland, OR: Center for Ethics in Health Care Oregon Health & Science University. 2012.
  5. Dotson A, Broderick A, Steinmetz V, Weir J, Anthony S. (2019) California’s POLST electronic registry pilot: Lessons for all states. Oakland, CA: California Health Care Foundation. Available from: https://www.chcf.org/wp-content/uploads/2019/09/CaliforniasPOLSTElectronicRegistryPilot.pdf
  6. Dotson, A. (2020). Oregon POLST registry annual report. Portland, Oregon: Oregon POLST Registry. Available from: https://orpolstregistry.files.wordpress.com/2021/03/2020-oregon-polst-registry-annual-report.pdf
  7. Physician Orders for Life Sustaining Treatment forms: registry, Cal. Assemb. B. 1234 (2021-2022)
  8. National POLST: Registry Information [Internet]. Washington DC: National POLST; c2017-2021. [cited 2021, Nov 3]. Available from: https://polst.org/wp-content/uploads/2021/03/2021.03-National-POLST-Registries-Matrix.pdf
  9. POLST California: POLST eRegistry in California: Challenges and opportunities [Internet]. Sacramento: Coalition for compassionate care of California; c2021. [cited 2021, Nov 3]. Available from: https://capolst.org/wp-content/uploads/2020/11/POLST-INTERVIEW-REPORT_11-22-19.pdf

Complete Article ↪HERE↩!

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Pandemic Ignites Millennials to Focus on End-of-Life Planning

Group portrait of a creative business team standing outdoors, three quarter length, close up

by Jackie Lam

As the coronavirus pandemic increased anxiety and upended many lives, it led U.S. millennials to get more serious about end-of-life planning.

According to new research from 1Password, a digital security and privacy platform based in Toronto, and digital estate planning platform partners Trust & Will and Willful, 72% of U.S. millennials (ages 25 to 40) with wills created them or updated them in the past year.

In addition, 34% of these millennials have talked about their digital assets with their parents in the past year.

More than two-thirds of millennials don’t have a will

While the pandemic brought greater focus to end-of-life planning among millennials, they’re still largely unprepared. According to the 1Password findings, 68% of millennials don’t have a will.

In turn, respondents estimate descendants would lose access to an average of $22,500. Plus, only 38% have clarity over who should handle their digital assets after they die.

Among those who do have a will, here’s what sparked it:

  • COVID-19 crisis (55%)
  • Having a child (36%)
  • Death of a celebrity or public figure (22%)
  • Buying a house (17%)

With a digital handover, the top priority for respondents is giving their executor login credentials to banking and financial accounts (67%). Interestingly, 57% of millennial respondents say granting access to social media accounts is more important than giving access to email, subscription and e-commerce accounts.

The pandemic provided a wake-up call for millennials and their end-of-life planning, no doubt. But there are some areas of estate planning that are murky. And it’s not just about the respondents themselves.

The survey finds 51% of millennials will be responsible for the execution of their parents’ wills. However, just 36% have access to their parents’ online account passwords.

While we already noted that 34% of respondents say they’ve chatted with their parents about their digital assets in the past year, 52% have never discussed it with their parents or can’t recall the conversation. Among those who have handled the execution of wills, 63% say it was more challenging than expected to access accounts after a death.

Millennials use old-fashioned ways to store documents

Old-school ways of handling important documents reign supreme among the millennial crowd. More than 4 in 5 (81%) report keeping paperwork — think birth certificate — in a physical location like a safe deposit box, safe or filing cabinet.

They share their passwords mainly by way of a written list (41%), then verbally (39%) and digitally (25%), such as through email, Google Docs, the cloud or a PDF.

As for storing passwords, 51% say they store their passwords by memory, while 25% keep them on a piece of paper. One in 5 (20%) millennials say they use a password manager.

The report also found that 48% of millennials trust their significant others the most for emergency access to their passwords, more than twice as much as their second choice — their parents (20%).

If you’re prioritizing end-of-life planning, decide who will be granted access to your digital accounts and online passwords and list out all your debts. This might include:

If you need help managing credit card debt, consider working with a financial counselor or credit counseling agency.

Complete Article ↪HERE↩!

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End-of-life conversations may be helpful to patients and families

By Lola Butcher

In the mid-1990s, psychiatrist Harvey Max Chochinov and his colleagues were researching depression and anxiety in patients approaching the end of their lives when they became curious about this question: Why do some dying people wish for death and contemplate suicide while others, burdened with similar symptoms, experience serenity and a will to live right up to their last days?

In the next decade, Chochinov’s team at the University of Manitoba in Canada developed a therapy designed to reduce depression, desire for death and suicidal thoughts at the end of life. Dignity therapy, as it is called, involves a guided conversation with a trained therapist to allow dying people to speak about the things that matter most to them.

“It is a conversation that we invite people into, to allow them to say the things they would want said before they are no longer in a position to be able to say it themselves,” Chochinov says.

Dignity therapy is little known to the general public but it has captivated end-of-life researchers around the world. Studies have yet to pin down what benefits it confers, but research keeps confirming one thing: Patients, families and clinicians love it.

These end-of-life conversations are important, says Deborah Carr, a sociologist at Boston University who studies well-being in the last stages of life. A key need of people who know they are dying is tending to relationships with people who matter to them. This includes “being able to communicate their wishes to family and ensuring that their loved ones are able to say goodbye without regret,” she says.

And the closer we get to death, the more we need to understand what our lives have amounted to, says Kenneth J. Doka, senior vice president for grief programs for Hospice Foundation of America. People “want to look back and say, ‘My life counted. My life mattered. My life had value, had some importance,’ in whatever way they define it,” Doka says. “I think dignity therapy speaks to that need to find meaning in life and does it in a very structured and very successful way.”

Chochinov’s search to understand why some people feel despair at the end of life while others do not led him to countries such as Belgium, the Netherlands and Luxembourg, where euthanasia and assisted suicide have long been legal. There he learned that the most common reason people gave for seeking assisted suicide was loss of dignity.

To learn more, Chochinov and his colleagues asked 213 terminal cancer patients to rate their sense of dignity on a seven-point scale. Nearly half reported a loss of dignity to some degree, and 7.5 percent identified loss of dignity as a significant concern. Patients in this latter group were much more likely to report pain, desire for death, anxiety and depression than those who reported little or no loss of dignity.

Dignity at the end of life means different things to different people, but in interviews with 50 terminally ill patients, Chochinov and colleagues found that one of the most common answers related to a dying person’s perception of how they were seen by others.

“Dignity is about being deserving of honor, respect or esteem,” Chochinov says. “Patients who felt a lost sense of dignity oftentimes perceived that others didn’t see them as somebody who had a continued sense of worth.”

Dignity therapy is tailored to enhance this sense of worth. In a session, a therapist — typically a clinician or social worker — carefully leads the patient through nine questions that help a person express how their life has been worthwhile.

“It’s not like a recipe, that you can just read out these nine questions and then call it dignity therapy,” Chochinov says. “We train therapists so that we can help them guide people through a very organic kind of conversation.”

The session typically lasts around an hour. About half is spent gathering biographical highlights, and the other half focuses on what Chochinov calls the “more wisdom-laden” thoughts the patient wants to share. A few days later, the patient receives an edited draft for review. “There’s an ethos of immediacy — your words matter, you matter,” he says. “They can edit it and they can sign off on it to say, ‘That is what I want as part of my legacy.’ ”

Chochinov estimates that nearly 100 peer-reviewed research papers, and at least four in-depth analyses — “systematic reviews” of the accumulated science — have been published so far on dignity therapy, and more studies are ongoing. The largest yet, of 560 patients treated at six sites across the country, is now being conducted by Diana Wilkie, a nursing professor at the University of Florida, and her colleagues.

Wilkie also helped conduct the first systematic review, published in 2015, which came up with a conundrum. When all studies were viewed together, the evidence that dignity therapy reduced the desire for death was lacking.

“The findings have been mixed,” she says. “In the smaller studies, you see benefit sometimes and sometimes not; in the larger studies, not.”

The most definitive study — Chochinov’s original clinical trial, of 326 adults in Canada, the United States and Australia who were expected to live six months or less — found that the therapy did not mitigate “outright distress such as depression, desire for death or suicidality,” although it provided other benefits, including an improved quality of life and a change in how the patients’ family regarded and appreciated them. A few years later, Miguel Julião, a Lisbon physician, and his colleagues conducted a much smaller trial in Portugal in which dignity therapy did reduce demoralization, desire for death, depression and anxiety.

Julião thinks the different outcomes reflect differences in the patient groups: His study focused on people experiencing high levels of distress, while Chochinov’s did not.

Positive and negative results also may depend upon how studies measure “success.” Scott Irwin, a psychiatrist at Cedars-Sinai Cancer in Los Angeles, worked at a San Diego hospice that introduced dignity therapy in 2009.

“It was absolutely worthwhile — no question,” Irwin says. “Not only did the patients love it, but the nurses loved it and got to know their patients better. It was sort of a transformative experience for patients and the care team.”

In Portugal, family members of dying individuals have prompted Julião to develop new uses for the therapy. He and Chochinov first adapted the interview to be appropriate for adolescents. More recently, they created a posthumous therapy for surviving friends and family members. In a study of this survivor interview protocol, “we have wonderful, wonderful comments from people saying, ‘It’s like I’m here with him or with her,’ ” Julião says.

For all its appeal, few patients receive dignity therapy. Though the tool is well-known among clinicians and social workers who specialize in caring for seriously ill patients, it is not routinely available in the United States, Doka says.

A primary barrier is time. The therapy is designed to last just one hour, but in Irwin’s experience at the hospice, patients were often too tired or pain-ridden to get through the entire interview in one session. On average, a therapist met with a patient four times. And the interview then had to be edited by someone trained to create a concise narrative that is true to the patient’s perspective and sensitive in dealing with any comments that might be painful for loved ones to read

Julião says he transcribes each patient’s interview himself and edits it into the legacy document. He says he has enthusiastic responses from clinicians and social workers attending the lectures and workshops he has conducted. “But they don’t do it clinically because it’s hard for clinicians to dedicate so much time to this.”

Dignity therapy is most widely available in Winnipeg, its birthplace, where all clinicians at Cancer Care Manitoba, the organization that provides cancer services in the province, have been trained in the protocol. If a patient expresses interest, or a clinician thinks a patient might be interested, a referral is made to one of the therapists, among them Chochinov.

A few months ago, he spent about an hour with a dying woman. She told him about her proudest accomplishments and shared some guidance for her loved ones.

A few days after he delivered a transcript of the conversation, the woman thanked him by email for their discussion and for the document that “will give my family something to treasure.”

“Dignity therapy is part of the bridge from here to there, from living my life fully to what remains at the end,” she wrote. “Thank you for helping me to tell this story.”

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Advance Directives

— Give the gift of peace of mind

By Lisa Larson

Looking for the perfect gift this time of year? You may be surprised to find the most generous gift you can give has nothing to do with wrapping paper and bows.

While it might not be the conversation you were planning to have this holiday season, sharing your end-of-life wishes with family members is a gift that will bring peace of mind and comfort when you — and they — need it most.

“It’s a gift to yourself, as well as your loved ones,” said Mary Helen Stricklin, nursing director for Palliative Care at Intermountain Healthcare. “It gives you a chance to think about what matters most to you, and it allows you to share your advance directives with family members so they know exactly what you want.”

“We’ve seen families torn apart in a crisis because they didn’t know what their loved one wanted, now that they are making decisions and family couldn’t agree on how to handle the situation,” Stricklin continued. “We’ve also seen families who were able to feel peace in the middle of an otherwise distressing situation because they had a plan in place.”

For anyone looking to create an advance directive, there are several resources available at no cost. Call 435-251-1850 to ask questions and get the ball rolling. Or log onto https://intermountainhealthcare.org/health-information/advance-directive/ for more information.

Having your wishes documented in an advance directive can alleviate familial stress because the person chosen to make medical decisions is prepared. “It reduces confusion and decreases the anxiety and fear people might have,” Stricklin said.  Knowing your wishes and sharing them can bring great peace.

While some people may feel overwhelmed at the idea of starting the process, Stricklin said there are just a few steps, all of which can be done without any cost to the individual.

“You do not need an attorney to do this,” Stricklin said. “And in Utah, you don’t even need a notary. Just a witness to your signature.”

The best way to begin the process is to have a conversation with yourself, really evaluating what matters most, Stricklin said. Take time to reflect on what is most important to you from a health, spiritual, religious, and cultural perspective.  After that, you need to choose an agent who will be responsible for following through on your advance directives if you can’t make decisions yourself. Once you’ve made those decisions, the next vital steps are to create a document outlining your wishes and then share that document with your loved ones, as well as your doctor and the hospital that is likely to treat you.

While some may feel advance care planning is only for the aging population, Stricklin said anyone over the age of 18 should have something in place.

“Think of it as an important part of your emergency preparedness,” she said. “People always think it’s too soon until it’s too late.”

One way to get yourself thinking on the topic is to consider a sudden and unexpected life-threatening situation, such as a car accident, that could leave you unable to communicate your wishes.

“We have young people in the hospital all the time as the result of an ATV accident, falling off a cliff while hiking, car accidents and more,” Stricklin said. “You may never have to use your advance directive plan, but it is comforting to know it’s there just in case.”

Stricklin added that it is important to remember this is a fluid document. You can change your mind as your preferences change by drafting a new document at any time. Nothing is set in stone.

In fact, Stricklin said she suggests people review their advance directives regularly to ensure it is up to date with the proper contact information and that it still reflects your most current wishes.

People can use the “five Ds” as suggestions for when to review their documents: Divorce, Death in the family, Diagnosis change, Deterioration in your health, or at least every Decade.

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