Category: Preparing for Death

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At peace: Positive attitudes about death improve end-of-life care

Changing the way we think and talk about death could improve end-of-life health care. Recent research suggests encouraging people to view death differently, as a positive and natural part of life, it could help them make better decisions as they prepare for what is inevitably to come.

For many people, especially if someone has recently experienced loss, giving up the ghost is one of the most taboo topics. This is indicated in the words people choose to use when describing their feelings and insights into death or dying, researchers say. People who are not comfortable with the topic are more likely to choose emotional words such as “fear or scary,” whereas those who are more ready to meet their maker will use terms like “inevitable or natural.”

“In an aging population, when our elders and terminally ill are often cared for by health professionals in residential care rather than in the home, we can go through life without really discussing or witnessing the end of life. Tackling and changing these perspectives will help the community to plan for and manage future needs and expectations of care at end-of-life, and improve patient and family care, including greater preparedness for death. This can also help develop future health services,” says Dr. Lauren Miller-Lewis, study lead author of Flinders University in Australia, in a statement.

In a recent study, researchers surveyed 1,491 people to determine what language they used to describe their feelings when it came to dying. Participants were then enrolled in a six-week open online course dubbed Dying2Learn. The course, which ran from 2016 to 2018 and in 2020, encouraged people to have open conversations about death and dying.

The language participants used when discussing death before and after the course was analyzed using automated sentiment analysis. By the end of the course, participants were able to use more pleasant, calmer and in-control words to express themselves on the topic, researchers say.

“Words aren’t neutral, so understanding the emotional connotations tied to words we use could help guide palliative care conversations,” says Dr. Miller-Lewis. Younger participants showed the greatest increase in positive vocabulary, including pleasantness and dominance over the topic.

“It shows how the general public can gain an acceptance of death as a natural part of life by learning how to openly discuss and address these feelings and attitudes,” adds co-author Dr. Trent Lewis.

Differences in how participants talked about death with others rather than just explaining their own feelings were also observed by the researchers. When talking about someone else’s loss, participants were more likely to use words such as “sad,” “fear,” scary and loss. However, when it was about themselves they employed less emotionally negative words like “inevitable,” “peace,” and “natural.”

“The assumption was that others feel more negatively about death than they do themselves. This could impact on our willingness to start conversations about death with others,” says Dr. Lewis. “Do we avoid it because we think others will get upset if we bring it up, and does this then leave important things unsaid?“

The findings are published in the journal PLOS One.

Complete Article ↪HERE↩!

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A Neuroscientist Prepares for Death

Lessons my terminal cancer has taught me about the mind

By David J. Linden

When a routine echocardiogram revealed a large mass next to my heart, the radiologist thought it might be a hiatal hernia—a portion of my stomach poking up through my diaphragm to press against the sac containing my heart.

“Chug this can of Diet Dr. Pepper and then hop up on the table for another echocardiogram before the soda bubbles in your stomach all pop.”

So I did. However, the resulting images showed that the mass did not contain the telltale signature of bursting bubbles in my stomach that would support a hernia diagnosis. A few weeks later, an MRI scan, which has much better resolution, revealed that the mass was actually contained within the pericardial sac and was quite large—about the volume of that soda can. Even with this large invader pressing on my heart, I had no symptoms and could exercise at full capacity. I felt great.

The doctors told me that the mass was most likely to be a teratoma, a clump of cells that is not typically malignant. Their outlook was sunny. Riffing on the musical South Pacific, my cardiologist said, “We’re gonna pop that orange right out of your chest and send you on your way.”

While I was recovering from surgery, the pathology report came back and the news was bad—it wasn’t a benign teratoma after all, but rather a malignant cancer called synovial sarcoma. Because of its location, embedded in my heart wall, the surgeon could not remove all of the cancer cells. Doing so would have rendered my heart unable to pump blood. The oncologist told me to expect to live an additional six to 18 months.

I was absolutely white-hot angry at the universe. Heart cancer? Who the hell gets heart cancer?! Is this some kind of horrible metaphor? This is what’s going to take me away from my beloved family, my cherished friends and colleagues? I simply couldn’t accept it. I was so mad, I could barely see.

[And now comes the part where I’m weeping while I type.]

Five years ago, I met Dena and we fell for each other hard. This wasn’t mere “chemistry”; it was more akin to particle physics—a revelation of the subatomic properties of love. Dena has uplifted me with her pure and unconditional affection, her kindness, beauty, optimism, and keen intelligence. She is the best wife anyone could want, and she is way better than I deserve. Leaving her behind will be the very hardest part of this whole awful situation.

Until the moment of that diagnosis six months ago, I had been the luckiest man in town. My twins, Jacob and Natalie, have been nothing but a delight for 25 years. I’ve been fortunate to have a long career in academic science with the freedom to pursue my own ideas, which is a gift like no other. My good friends are a constant source of joy and amusement. By any reasonable measure, I’ve had a great life, full of love, creativity, and adventure.

I may be dying, but I’m still a science nerd, and so I think about what preparing for death has taught me about the human mind. The first thing, which is obvious to most people but had to be brought home forcefully for me, is that it is possible, even easy, to occupy two seemingly contradictory mental states at the same time. I’m simultaneously furious at my terminal cancer and deeply grateful for all that life has given me. This runs counter to an old idea in neuroscience that we occupy one mental state at a time: We are either curious or fearful—we either “fight or flee” or “rest and digest” based on some overall modulation of the nervous system. But our human brains are more nuanced than that, and so we can easily inhabit multiple complex, even contradictory, cognitive and emotional states.

This leads me to a second insight: The deep truth of being human is that there is no objective experience. Our brains are not built to measure the absolute value of anything. All that we perceive and feel is colored by expectation, comparison, and circumstance. There is no pure sensation, only inference based on sensation. Thirty minutes fly by in a conversation with a good friend, but seem interminable when waiting in line at the DMV. That fat raise you got at work seems nice until you learn that your co-worker got one twice as large as yours. A caress from your sweetheart during a loving, connected time feels warm and delightful, but the very same touch delivered during the middle of a heated argument feels annoying and presumptuous, bordering on violation.

If someone had told me one year ago, when I was 59, that I had five years left to live, I would have been devastated and felt cheated by fate. Now the prospect of five more years strikes me as an impossible gift. With five more years, I could spend good times with all of my people, get some important work done, and still be able to travel and savor life’s sweetness. The point is that, in our minds, there is no such thing as objective value, even for something as fundamental as five years of life.

The final insight of my situation is more subtle, but it’s also the most important. Although I can prepare for death in all sorts of practical ways—getting my financial affairs in order, updating my will, writing reference letters to support the trainees in my lab after I’m gone—I cannot imagine the totality of my death, or the world without me in it, in any deep or meaningful way. My mind skitters across the surface of my impending death without truly engaging. I don’t think this is a personal failing. Rather, it’s a simple result of having a human brain.

The field of neuroscience has changed significantly in the 43 years since I joined it. I was taught that the brain is essentially reactive: Stimuli impinge on the sense organs (eyes, ears, skin, etc.), these signals are conveyed to the brain, a bit of computation happens, some neural decisions are made, and then impulses are sent along nerves to muscles, which contract or relax to produce behavior in the form of movement or speech. Now we know that rather than merely reacting to the external world, the brain spends much of its time and energy actively making predictions about the future—mostly the next few moments. Will that baseball flying through the air hit my head? Am I likely to become hungry soon? Is that approaching stranger a friend or a foe? These predictions are deeply rooted, automatic, and subconscious. They can’t be turned off through mere force of will.

And because our brains are organized to predict the near future, it presupposes that there will, in fact, be a near future. In this way, our brains are hardwired to prevent us from imagining the totality of death.

If I am allowed to speculate—and I hold that a dying person should be given such dispensation—I would contend that this basic cognitive limitation is not reserved for those of us who are preparing for imminent death, but rather is a widespread glitch that has profound implications for the cross-cultural practice of religious thought. Nearly every religion has the concept of an afterlife (or its cognitive cousin, reincarnation). Why are afterlife/reincarnation stories found all over the world? For the same reason we can’t truly imagine our own deaths: because our brains are built on the faulty premise that there will always be that next moment to predict. We cannot help but imagine that our own consciousness endures.

While not every faith has explicit afterlife/reincarnation stories (Judaism is a notable exception), most of the world’s major religions do, including Islam, Sikhism, Christianity, Daoism, Hinduism, and arguably, even Buddhism. Indeed, much religious thought takes the form of a bargain: Follow these rules in life, and you will be rewarded in the afterlife or with a favorable form of reincarnation or by melding with the divine. What would the world’s religions be like if our brains were not organized to imagine that consciousness endures? And how would this have changed our human cultures, which have been so strongly molded by religions and the conflicts between them?

While I ponder these questions, I am also mulling my own situation. I am not a person of faith, but as I prepare for death, I have a renewed respect for the persistent and broad appeal of afterlife/reincarnation stories and their ultimately neurobiological roots. I’m not sure whether, in the end, faith in afterlife/reincarnation stories is a feature or a bug of human cognition, but if it’s a bug, it’s one for which I have sympathy. After all, how wonderfully strange would it be to return as a manatee or a tapeworm? And what a special delight it would be to see Dena and my children again after I’m gone.

Complete Article ↪HERE↩!

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Black-owned hospice seeks to bring greater ease in dying to Black families

André Lee, administrator and co-founder of Heart and Soul Hospice, stands with Keisha Mason, director of nursing, in front of their office building last week in Nashville, Tenn.

By Blake Farmer

This time, it didn’t take much persuading for Mary Murphy to embrace home hospice. When her mother was dying from Alzheimer’s disease in 2020, she had been reluctant until she saw what a help it was. And so when her husband, Willie, neared the end of his life, she embraced hospice again.

The Murphys’ house in a leafy Nashville neighborhood is their happy place — full of their treasures.

“He’s good to me — buys me anything I want,” she says, as she pulls a milky glass vase out of a floor-to-ceiling cabinet with mirrored shelves.

Willie bought Mary the display case to help her to show off all the trinkets she picks up at estate sales.

Down the hall, Willie lies in their bed, now unable to speak. His heart is giving out.

“You gonna wake up for a minute?” she asks as she cradles his head. She pats his back while he clears his throat. “Cough it out.”

Mary has been the primary caregiver for her husband, but she gets help from a new hospice agency in Nashville that is focused on increasing the use of comfort care at the end of life by Black families. Heart and Soul Hospice is owned and operated by people who share the same cultural background as the patients they’re trying to serve.

In their application to obtain a certificate of need in Tennessee, the hospice owners made it clear that they are Black and that they intend to serve everyone but will focus on African Americans, who are currently underserved. Tennessee data show that in Nashville, just 19% of the hospice patients are Black though they make up 27% of the population.

Though the area already had numerous hospice agencies, regulators granted the permission, based primarily on the value of educating an underserved group.

Hospice care helped Mary and Willie Murphy with a few baths a week, medication in the mail, and any medical equipment they needed. And there was the emotional support from a caring nurse.

In Mary Murphy’s first experience with hospice, her mother had suffered from dementia for decades, yet still when transitioning to hospice came up with her mother, Murphy had many concerns. She felt like she was giving up on her mom.

“My first thought was death,” she says.

National data shows Black Medicare patients and their families are not making the move to comfort care as often as white patients are. Roughly 41% of Black Medicare beneficiaries who died in 2019 were enrolled in hospice, compared with white patients for whom the figure is 54%, according to data compiled annually by the National Hospice and Palliative Care Organization.

Murphy’s mother survived nearly three years on hospice. The benefit is meant for those in the last six months of life, but predicting when the end will come is difficult, especially with dementia. Hospice provides palliative care for the dying and support for caregivers for a long as the process lasts.

Murphy did most of the caregiving — which can be overwhelming — but hospice helped with a few baths a week, medication in the mail and any medical equipment they needed.

And most important to Murphy was the emotional support, which came mostly from her hospice nurse.

“Wasn’t no doctor going to come here, hold my hand, stay here until the funeral home came for her,” she says about the day her mother died.

This year, on the day after Thanksgiving, Willie Murphy died. And the same hospice nurse was at the Murphy home within minutes. She’d already stopped by that morning to check on him and returned as soon as Mary called and told her he wasn’t breathing.

“If you don’t feel like, ‘Oh my God, thank God I have hospice,’ if you can’t say that, then we’re doing something wrong,” says Keisha Mason, who is Heart and Soul’s director of nursing.

Mason, like Murphy, is Black and says that in her view, there’s nothing fundamental keeping Black patients from using hospice except learning what the service can offer and that it’s basically free to patients — paid for by Medicare, Medicaid and most private health plans.

“I say to them, ‘If you see a bill, then call us, because you should not,’ ” she says.

As Mason has helped launch this new hospice agency, she’s begun using new language, calling hospice more than a Medicare benefit. She describes it as an entitlement.

“Just as you are entitled to unemployment, as you are entitled to Social Security, you are entitled to a hospice benefit,” she says.

The investors in Heart and Soul include David Turner, owner of CNS Hospice in Detroit, Nashville pastor the Rev. Sandy McClain, and André Lee, who is a former hospital administrator on the campus of Nashville’s Meharry Medical College, a historically Black institution.

Lee and Turner also started a Black-focused hospice agency in Michigan and have plans to replicate the model in other states.

Lee says more families need to consider home hospice as an alternative for end-of-life care. Nursing homes are pricey. And even with Medicare, a hospital bill could be hefty.

“You’ll go in there and they’ll eat you alive,” he says. “I hate to say [something] bad about hospitals, but it’s true.”

Hospice research hasn’t come up with clear reasons why there’s a gap between white and Black families’ use of the benefit. Some speculate it’s related to spiritual beliefs and widespread mistrust in the medical system due to decades of discrimination.

The hospice industry’s national trade group, the NHCPO, released a diversity and inclusion toolkit and a guide for how to reach more Black patients this year. It recommends connecting with influential DJs and partnering with Black pastors. But also just hiring more Black nurses.

Lee says it’s not overly complicated.

“A lot of hospices don’t employ enough Black people,” he says. “We all feel comfortable when you see someone over there that looks like you.”

Well-established hospice agencies have been attempting to minimize any barriers with their own diversity initiatives. Michelle Drayton of Visiting Nurse Service of New York says her large agency has been meeting with ministers who counsel families dealing with failing health.

“Many of them did not fully understand what hospice was,” she says. “They had many of the same sort of misperceptions.”

Whether it’s an upstart hospice company or one of the oldest in the country, everyone still has a lot of end-of-life educating to do to bridge the racial gap, Drayton says. “We’re not just handing out a brochure,” she adds.

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Congressman Asks Colleagues To Demand DEA Allow Psilocybin Treatment For Terminal Patients

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A congressman is asking his fellow lawmakers to join him in requesting that the Drug Enforcement Administration (DEA) allow terminally ill patients to use psilocybin as an investigational treatment without the fear of federal prosecution.

A new Dear Colleague letter that’s being circulated by Rep. Earl Blumenauer (D-OR) notes that there are state and federal right-to-try (RTT) laws that should make it so certain patients can obtain the psychedelic given that it’s shown early potential in ongoing clinical trials.

Yet DEA has denied access, resulting in a lawsuit that was filed in March by a Washington State doctor who sought federal guidance to treat terminal patients with psilocybin mushrooms and was told there wasn’t a legal avenue for him to do so.

“There has been a growing body of evidence in recent years pointing to the safety and effectiveness of psilocybin assisted therapy as a potential method to provide care to individuals with treatment-resistant depression and/or anxiety,” Blumenauer wrote to fellow lawmakers.

“However, even with these promising advancements, the pace of regulatory approval has been far too slow for a naturally occurring substance that has evidence of having been safely used by humans for therapeutic uses for thousands of years,” the congressman said. “This is even more true when the quality of care and treatment for terminally ill individuals is resultingly limited and impacted.”

Congress and 41 states have adopted right-to-try laws, which allow patients with terminal conditions to try investigational medications that have not been approved for general use. The letter says DEA has “has failed to abide” by the law.

“I hope you will join me in urging that the DEA takes quick action to remediate these concerns and end their obstruction of access to end-of-life care,” Blumenauer said.

The lawsuit against DEA is currently before the U.S. Court of Appeals for the Ninth Circuit, which heard oral arguments in the case in September. Washington State’s attorney general’s office joined the plaintiffs in support of psilocybin access. DEA argued that the court should dismiss the suit because it lacked jurisdiction.

Blumenauer is asking his colleagues to sign onto a letter addressed to DEA Administrator Anne Milgram, who was appointed by President Joe Biden and confirmed by the Senate over the summer.

“We strongly believe that our constituents suffering such illnesses should have access to this investigational drug should they decide to pursue such a course of treatment and we urge you to take quick action to ensure that the DEA accommodates federal and state RTT laws and allows terminally ill patients to receive psilocybin for therapeutic use,” it says.

The lawsuit—which was brought by an oncology clinic, the Advanced Integrative Medical Science (AIMS) Institute—”can, and ought to be, quickly settled in a manner which addresses DEA’s legitimate concerns about ensuring adequate security to prevent diversion, while enabling dying cancer patients such as those in the AIMS case access to psilocybin,” the letter says.

“Urgent action is needed to ensure that patients currently suffering terminal illness can elect treatment involving psilocybin,” it concludes. “We urge you to take quick action to ensure that the DEA accommodates enacted RTT law and allows terminally ill patients to receive psilocybin for therapeutic use. We appreciate your attention to this urgent matter.”

Sunil Aggarwal, the AIMS doctor behind the lawsuit, told Marijuana Moment that he is “so heartened and grateful for Representative Blumenauer’s leadership here to help my patients who have advancing serious and life-threatening cancer to try psilocybin-assisted therapy, as is their right, to palliate and relieve suffering.”

“High quality clinical evidence has shown that psilocybin-assisted therapy can help generate awe, connection, and joy, and these can impact immune function, mood, demoralization, and potentially prognosis,” he said. “The time is now for all members of Congress in Washington State and beyond to sign onto this letter that implores the US DEA to respect and protect the right to try law’s promises for my patients and others like them. It is the right thing to do, and this is an urgent and time-sensitive matter.”

The Blumenauer-led letter to DEA closes for signatures on Friday. It’s not clear when it will be sent to the agency, but it’s currently dated for some time in December.

Blumenauer separately told Marijuana Moment on Thursday that he’s “excited” about advancements in psychedelics research, as well as the implementation of a psilocybin therapy program that’s being set up in his home state of Oregon, where voters approved the historic reform during last year’s election.

Oregon’s initiative is “a model about how to take advantage of the this therapy for people who desperately need it,” he said. “There are a number of opportunities to demonstrate the power of this therapy. And we are, in a very thoughtful and systematic way, implementing that in Oregon to show how it can result.”

“I think this discussion needs to take place on Capitol Hill—and it’s something that I would like to occur early in the new the new year,” Blumenauer said. “Let people understand the potential, using opportunities now for people in the late stages of life to be able to try this using federal legislation.”

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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

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A good death: Julie McFadden’s message

McFadden relates that the dying often call out to parents, and report seeing beloved relatives who’ve already passed away, waiting to lead them onward. She has no idea why.

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Have you ever witnessed someone peacefully die? Was it a trauma, a privilege, an intrusion, a wonder? A palliative nurse from Los Angeles has gone viral with her TikTok videos explaining the mysterious process. Julie McFadden’s message:Trust the body. It knows what it’s doing, just as it knows what it’s doing in childbirth. Do not be afraid of what’s unfurling before you so mysteriously and irreversibly – and predictably.

Her aim is to normalise a shielded process. She says death is not, normally, painful; it’s a “peaceful and natural” procedure. “Our bodies are truly built to survive birth, for the most part, and they’re built to die. When someone is in a hospice dying a natural death, the body knows.” She explains: “[It] will start kicking in its regular mechanisms that are built in when someone is getting near death. It will stop eating and drinking for the most part, and sleeping a lot more.”

McFadden believes the less intervention the better, and talks of “the rally” that often occurs near the end, when the patient suddenly seems much better hours or days before death. She says the less we mess with the process, the more peaceful the death usually is. She explains that changes in breathing and skin colour, terminal secretions and fevers are all normal. I could add that the patient’s face takes on the look of a death mask, as if the visage is rehearsing for the skull to come. I saw this with both my father and grandmother as they approached death.

With my father, I was in denial, refused to believe this could be happening. Because what I didn’t get from the hospice, for all their good intentions, was a bracing honesty. I needed the blunt truth, that dad had begun his journey upon the irreversible road into death. In hindsight the staff knew but the family didn’t. We didn’t trust the peaceful process, didn’t surrender to reality, but clung to the wild, stubborn hope of a miraculous turnaround. The head of the palliative unit had said that some people do actually leave their care alive, that it’s not always terminal, and that’s what we gripped on to. Foolishly.

The actual care couldn’t be faulted. The room was large and airy, sliding doors opened to a peaceful courtyard, the dog was allowed onto the bed, there was music and endless cups of tea, as a circuit breaker, in a spacious communal lounge area. So much thought had gone into this compassionate place – it felt like a gift at the end of life. The Australian way of a foreseen death, done very well.

As Ursula Le Guin wrote once, “Let the dying spirit go”. Dad was ready, the staff were ready, but we the family were not. Perhaps it’s just too difficult sometimes to broach the subject; to announce the brutal words “look, they’re dying now, it’s not far off” to a desperately grieving family. I felt like something of a hostage within a death-hesitant culture; needed the truth but hope is easier, a polite and powerful drug.

There are grumblings that our palliative system isn’t good enough, particularly in the fraught arena of arguments around Voluntary Assisted Dying. Yet we felt cradled by support; there was a profound compassion for the dying as well as the living. I just wish there’d been a bit more brutal honesty – it would have lessened the shock. Because we weren’t prepared, mentally, for the process.

McFadden’s TikToks have helped with an understanding of the mysterious state a body succumbs to along its path into death. My relatives were irreversibly lost to us, as a family, yet seemed responsive to love as they underwent a leave-taking that felt beautiful and harrowing all at once. It didn’t feel claustrophobic, but a natural end to things; a slide over days into stillness. McFadden relates that the dying often call out to parents, and report seeing beloved relatives who’ve already passed away, waiting to lead them onward. She has no idea why.

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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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