A Good Death

— Instruction manuals for living written by the dying

By Kristen Martin

Adina Talve-Goodman lived with an awareness of her own mortality that most of us will never approximate. Born with a single-ventricle heart and pulmonary atresia—a condition where the valve that controls blood flow from the heart to the lungs doesn’t form—she had two surgeries in her first week of life alone. By four, she had undergone two open-heart operations; by twelve, she was in heart failure. “I was a happy kid even though I did not know what wellness felt like,” Talve-Goodman explains. After spending nearly two years on the waiting list for a new heart—a process she describes as “an exercise in how close you can get to death”—she received a transplant in 2006, at the age of nineteen. With her new heart, she adjusted to blood that coursed quickly through her body, pinking her previously pallid cheeks, affording her energy and strength she had never before known.

Talve-Goodman dreamed of publishing a collection of essays exploring her experience of chronic illness and approaching the brink of death, informed by critical theories of embodied difference, suffering, and disability. Eleven years after her heart transplant, when she was drafting those essays in the University of Iowa’s nonfiction MFA program, she was diagnosed with a rare form of lymphoma caused by the immunosuppressants that kept her body from rejecting its new heart. She died six months later, in January 2018, at thirty-one. 

Now, Talve-Goodman’s collection is here, though it is not the book she hoped would be her debut. Your Hearts, Your Scars brings together seven essays, all but one unfinished at the time of her death. In the introduction, her sister Sarika describes the collaborative process behind the book, one that its author did not take part in. “When Adina’s cancer treatments were starting not to go well, she said to me with a sadness and softness that she hadn’t even gotten to publish a book,” Sarika writes. “Of course she would, I said . . . I wish I had responded differently in that moment of openness. Maybe we could have talked about what she had wanted and worked on it together.” Instead, after Talve-Goodman died, her sister read and organized everything she had ever written and compiled a manuscript. Together, Talve-Goodman’s parents, both rabbis; the editorial team she had worked with at One Story for six years (Hannah Tinti, Patrick Ryan, and Maribeth Batcha); and her best friend since childhood, the comedian Jo Firestone, edited her words into “a book made out of love and grief.”

Books like Talve-Goodman’s bring us visions of death, but they do not bring us any closer to understanding it.

The essays that make up Your Hearts, Your Scars come in at just over one hundred pages and are rooted more firmly in the personal than the critical: Talve-Goodman writes about attending a summer camp for teenage transplant recipients in San Diego, before she got her new heart, where she met kids who “carr[ied] the weight of dead donors”; about the Thanksgiving when she held her old heart in her hands, having requested to take it home from the hospital; about realizing that she “might never feel as if being healthy and having energy is normal.” The essays are suffused with compassion and hope, but given the circumstances of publication, the overall effect is achingly bittersweet.

In this juxtaposition of the author’s clear-eyed appreciation for life that comes with being close to death and the reader’s ever-present awareness that the author is now, in fact, dead, Your Hearts, Your Scars joins a lineage of instruction manuals for living written by the dying. The most recent spate of such books hit shelves in the years leading up to the pandemic, before death became all too present and we shunned confronting mortal reality in favor of smarmy calls for resilience. The neurosurgeon Paul Kalanithi’s 2016 memoir When Breath Becomes Air, written in the months leading up to his death of lung cancer at thirty-seven, kicked off a renewed interest in posthumously published meditations on death, hitting the top of the New York Times bestseller list and garnering critical acclaim. The next year brought Cory Taylor’s Dying, which Barack Obama named as one of his favorite books that year, and Nina Riggs’s The Bright Hour, which the Washington Post hailed as “this year’s When Breath Becomes Air.” In 2019, Julie Yip-Williams’s The Unwinding of the Miracle, adapted from a blog she kept called My Cancer Fighting Journey, joined the pantheon, a little less than a year following her death at forty-two. It, too, drew comparisons to When Breath Becomes Air (Kalanithi and Yip-Williams shared an editor at Random House).

What unites all these posthumous memoirs is the hunger we bring to them as readers. We expect koan-like wisdom on what matters in life, an enlightened perspective gained from being at or near the end of it. We expect to come away transformed, in possession of the same moral clarity that their authors have achieved by dying. Back cover blurbs demand that readers heed the authors’ lessons: Atul Gawande—the author of Being Mortal, a book about end-of-life medicine—claims that “Dr. Kalanithi’s memoir is proof that the dying are the ones who have the most to teach us about life.” Ann Hood says Cory Taylor’s Dying “should be required reading for all of us.”

The ultimate lesson we hope to learn from these books? How to live meaningfully while knowing that life must end, and when it does end, how to face death with equanimity. Put simply, we want to learn how to die.

I have lived most of my life preoccupied with mortality, wishing that I could understand what it is like to die, to be dead. When I was twelve, my mother died of lung cancer; my father died of prostate cancer two years later. In the decades since, I have stopped believing in an afterlife—my parents are nowhere but in memory. Instead, I have tried to understand their deaths in a way I couldn’t when they were dying, and tried to understand death more broadly, through reading literature published from beyond the grave. Books like Talve-Goodman’s bring us visions of death, but they do not bring us any closer to understanding it.


Instead of this year’s When Breath Becomes Air, perhaps a maudlin blurber might call Your Hearts, Your Scars this year’s The Opposite of Loneliness—so far, this century’s paradigmatic work by an author who died before fully developing her craft. The book’s very existence fetishizes the idea that those who die young are especially insightful and worthy, which is in turn part of an impulse to make trite meaning of a life cut short.

Like Talve-Goodman, Marina Keegan was not consciously composing a manuscript to be read posthumously. She died in a car accident days after her graduation from Yale. The 2014 book— put together by Keegan’s family, friends, and her mentor at Yale, Anne Fadiman—takes its title from a piece Keegan wrote for commencement, which developed a tragic weight after her death because its pep talk no longer applied to her: “What we have to remember is that we can still do anything. We can change our minds. We can start over . . . The notion that it’s too late to do anything is comical. It’s hilarious. We’re graduating college. We’re so young.” The Opposite of Loneliness, which hung around the New York Times bestseller list for weeks, drew praise for its “youthful optimism, energy, honesty, and beyond-her-years wisdom.”

Talve-Goodman’s wisdom, on the other hand, comes from having experienced what it was like to die before she died, a fact that colored her image of the future. Though each essay has an undercurrent of brightness, Your Hearts, Your Scars is not a feel-good look at sickness and dying. (This jibes with the fact that the book is out from Bellevue Literary Press, an indie publisher with roots in the historic New York City public hospital that focuses on the intersection of the arts and sciences and exploring the human condition.) What Talve-Goodman’s loved ones have ultimately given readers in publishing her words is a perspective on chronic illness and survival that pushes back on the idea that people who suffer must inspire us or teach us gratitude.

When she died, Talve-Goodman was on the cusp of a literary career; she had only published one piece, an essay titled “I Must Have Been That Man,” which won the 2015 Bellevue Literary Prize in nonfiction. (Coincidentally, Fadiman was the contest’s judge.) That essay, which opens Your Hearts, Your Scars, recounts how Talve-Goodman traversed from illness to wellness forever marked by her near-death, a theme woven throughout the collection. As with many of the other pieces, “I Must Have Been That Man” is built around an incident that happened when Talve-Goodman was in college in St. Louis. She writes of being locked out of her apartment on a rainy day about a year after her heart transplant and coming across a man in the street who had fallen out of his electric wheelchair. It’s a story about the difference between compassion and pity, but the crux is in a reflective moment toward the beginning:

When I listed [for transplant], my parents, both rabbis, told me a story from the Talmud about a rabbi who goes to visit three sick men and each time the rabbi asks, “Is your suffering dear to you?” “That’s the whole story,” they’d explain, “and it’s the question that’s important.” I took it to mean this: When the time comes, will you be able to live without the heart defect that always made you special and strong? Will you be able to face wellness and normalcy?

Talve-Goodman realizes that her suffering is dear to her, at least, she writes, “a little bit.”

Reading the essays that follow, I thought about how the popularity of death memoirs speaks to how the suffering of others is dear to us. In “Your Hearts, Your Scars, Zombies,” a meditation on the cultural figure of the zombie that her sister notes is the closest to the melding of the personal and the critical that she aspired to publish, Talve-Goodman confronts the appetite well people have for stories about sickness: “What, then, for an illness narrative? Perhaps that I am what you make of me—I live this way, a different body, a body of hybridity, to mean something to you, to your experiences, to practice your empathy, to fetishize, even to ‘inspire.’” It’s a refreshing moment of reprimand against a tendency to read illness—or death—narratives with a posture of self-serving pity and a desire to extract encouragement. 

And still, reading Your Hearts, Your Scars, I found myself asking for more than its author wanted to—or could—give. I wished that Talve-Goodman had gone deeper on death—that she had taught me more about how to die. In the collection’s final piece, “Thank God for the Nights That Go Right,” Talve-Goodman lingers on what it felt like to almost die, as opposed to having made it out on the other side, feeling like what she at one point describes as “death in drag.” She writes of being tired, being desperate, being close to giving up the night before she learned that she would receive her transplant. “I always thought dying would feel worse,” Talve-Goodman writes. “I thought there would be more pain, I thought death would be clear.” What did dying feel like? I wrote in the margin, wanting to vicariously understand through reading something that literature cannot deliver.


After reading Your Hearts, Your Scars, I revisited Kalanithi’s When Breath Becomes Air to remind myself of why all these posthumous memoirs get stacked up against it, and why publishers have tried to recreate its success: it actually does meditate cogently and vigorously on what makes life meaningful, even and especially with the acute knowledge of imminent death.

But Kalanithi didn’t start that line of inquiry in his final months—it was a lifelong pursuit, one he began while studying literature and biology in college in an effort to understand both “the life of the mind” and “the rules of the brain.” He chose medicine because he felt it was where “biology, mortality, literature, and philosophy intersect[ed],” and because he believed it would allow him to directly “forge relationships with the suffering, and to keep following the question of what makes human life meaningful, even in the face of death and decay.” In performing neurosurgery, working on and in the organ that makes us individuals—the brain—Kalanithi further challenged himself to confront, along with his patients, “what makes life meaningful enough to go on living.” This was a man who dedicated his entire career to grappling with the fundamental questions of life.

There is value in reading death memoirs, if we can take them on their own terms.

Ironically, within When Breath Becomes Air, Kalanithi makes the argument that literature cannot teach us how to die—something I missed in my first reading, and that the market for books like Kalanithi’s has chosen to ignore. Early on, he writes, “I had spent so much time studying literature at Stanford and the history of medicine at Cambridge, in an attempt to better understand the particularities of death, only to come away feeling like they were still unknowable to me.” Later, after facing death through his patients—which taught him the limits of accessing someone else’s experience—and after receiving his own diagnosis of stage IV lung cancer, Kalanithi turns back to books, reading “anything by anyone who had ever written about mortality.” He tells his oncologist that he’s doing so, “trying to find the right perspective.” She replies, “I’m not sure that’s something you can find by reading about it.”  

What Kalanithi ultimately learns is that he must decide for himself what he values in life, what makes his own life worth living, where he finds meaning. We each have to do this hard work when the time comes. Even with all of the meditative homework Kalanithi completed ahead of time, it wasn’t until he was dying that he could truly answer these questions, and his answers shifted along with his prognosis, his symptoms, his energy.

But still, there is value in reading death memoirs, if we can take them on their own terms. When Breath Becomes Air cannot prepare us to face our own mortality or bring us closer to comprehending the purpose of life or what it means to die. It can, though, allow us inside one man’s personal and philosophical end-of-life reckoning, which may in turn spur our own reflections. Similarly,Your Hearts, Your Scars cannot be an instruction manual for “living each day as a gift,” as the back cover claims that Talve-Goodman did. It can be a slim volume of words about coming-of-age that a young writer never got to polish to her satisfaction, shared as part of her legacy.

Complete Article HERE!

Dying Can Cost Loved Ones $20,000 Before Lost Wages And Worse Health, New Report Says

By Deb Gordon

If you think the cost of living in the United States healthcare system is high, wait till you see the cost of dying.

A new report details the direct financial impact of a loved one’s death, as well as the less tangible costs of loss.

The 2023 report on The Cost of Dying was released today from Empathy, a company that helps people manage the logistics and emotional burdens of death. The report includes results from a survey conducted with nearly 1,500 people who had lost an immediate family member in the prior five years.

Overall, the average direct costs related to the death of a loved one can reach $20,000. That’s before factoring lost income from taking time off or healthcare costs required to manage health and mental health symptoms.

On average, survey respondents reported that they paid $3,584 to the funeral home (lower than the 2021 national median cost of $7,848 reported by the National Funeral Directors Association). Burial plots cost respondents an average of $1,841. Smaller expenses, such as catering, officiants, flowers, music, and invitations can add more than $1,700 combined, making the funeral the single biggest expense associated with a loved one’s death.

But the costs don’t end with the funeral. Survey respondents reported paying an average of $4,384 to deal with financial matters, such as hiring accountants and paying bills.

Respondents spent nearly $5,000 on legal matters, including lawyer fees and costs associated with selling off assets. Disposing of real estate can add another $4,000.

Many respondents reported using their own financial resources to pay death-related bills; 42% used their own credit cards or checking accounts and 36% used their savings. Just 14% were able to tap into funds specifically designed for these purposes, such as life insurance or last arrangements insurance.

Rinal Patel, founder of Pennsylvania-based Suburbrealtor, experienced firsthand the costs associated with the death of a loved one.

In February 2022, her 35-year old brother died of a heart attack while he was in Dubai for work. Patel spent more than $4,000 to fly his body back from Dubai and footed the entire bill for his funeral, about $10,000.

“He was my only brother, and I couldn’t let him be buried in a foreign country,” she said.

In addition to direct costs, Patel’s brother’s death also cost her income. As a business owner, Patel missed out on deals while she was away mourning her brother.

“His death cost me a lot financially, emotionally, and psychologically,” Patel said.

Lost work

Death-related costs hit at a time when many people can least afford them.

Nearly all (92%) employed respondents reported taking time off or adjusting their work commitments to manage the experience. For many workers, that costs them money indirectly.

Nearly one-quarter (23%) of respondents reported taking unpaid time off, while about half (51%) took paid time off. Women were more likely to take unpaid time off than men, and half as likely as men (9% vs. 19%) to report feeling satisfied with their employer’s bereavement leave policy.

Empathy’s report says that most U.S. companies offer one to five days of bereavement leave. But most people need more time than that to manage logistics of death, let alone to properly grief.

Jasmine Cobb, a licensed grief and trauma therapist from Texas, was lucky that she could use accrued paid time off when her mother died in 2020 from complications with metastatic breast cancer.

Though her employer at the time was supportive, Cobb noted the mismatch between most employer bereavement policies and employee needs.

“Generous bereavement is an oxymoron and is generally non-existent,” she said. “The most I’ve heard of companies extending is about two to three days max, which tends to be incongruent when experiencing a profound and significant loss.”

The health costs of death

In addition to significant financial impact, 93% of survey respondents reported having experienced at least one health symptom as a consequence of their loss. A majority of respondents experienced at least two symptoms and 34% had four or more symptoms for more than a few months.

Persistent symptoms included anxiety, reported by nearly half (46%) of respondents. Other symptoms included disrupted sleep (38%), weight loss or gain (33%), irritability or anger (30%), and memory impairment (30%).

Women were more likely than men to experience symptoms for a year or longer. For example, 23% of women and just 12% of men reported experiencing anxiety for more than a year. Women were twice as likely as men to experience prolonged sleep disruptions (16% compared to 8%) and weight gain or loss (14% vs. 7%). One in ten (11%) women reported persistent panic attacks compared with 6% of men.

Tennessee-based Brittany Nicole Mendez, 27, a marketing officer at FloridaPanhandle.com, still experiences symptoms associated with loss, seven years after the death of her brother.

Mendez, then 20, was visiting her family in San Francisco for Christmas when she learned her 22-year old brother had been hit by a car while walking on a pedestrian crosswalk. He died the next day.

Though the direct financial burden fell to her parents, who started a GoFundMe to help with the unexpected funeral costs, Mendez didn’t get paid for the extra weeks she spent in California with her family.

The real cost to Mendez has come in the form of lasting mental health challenges.

“I never experienced true anxiety, panic attacks, or depression until after he passed away,” she said.

After her brother’s death, Mendez had difficulty eating and sleeping. She still suffers from extreme panic attacks caused by the fear that she or a loved one will lose their life unexpectedly.

Danielle Jones, 38, of Tampa, Florida, also experiences lingering health impacts of her mother’s death from heart failure in 2021. Jones’ mother died on her 57th birthday.

Jones paid for everything out of pocket, including travel and the process to clear out her mother’s house. She minimized expenses by replacing a funeral with visitation with specific friends and family. Her cousin, who worked for a funeral home, helped out by paying for her mother to be cremated.

But the nonmonetary costs have taken a toll on Jones.

“Her death rocked my world,” she said. “It was hard to go back to work. I cried between work calls.”

Jones started seeing a therapist, but the therapist was disorganized because she herself had just had a death in her own family.

“I quit seeing her,” Jones said. “I couldn’t handle the missed appointments.”

Jones said there were many nights when she could not sleep through the night. She said she only ate if someone reminded her to. Cooking, grocery shopping, and taking walks all reminded Jones of her mother. They would speak daily during these routine activities.

“I couldn’t walk int my kitchen because it made me think of her,” she said. “It was hard to get back to my life as I once knew it.”

Though Jones is a certified nutritionist and wellness strategist who writes about her experience with grief, she said she’s gained 20 pounds since her mother’s death. She blames the emotional stress of her grief.

It may be no wonder that the effects of death can last so long. The process of managing a death can take a lot longer than expected. Resolving all the financial matters associated with a loved one’s death took respondents about a year on average. They spent an average of 20 hours per week dealing with these issues. More than half (62%) said that these issues took longer to complete than they had expected.

Planning can offset the direct and indirect costs of death. Not only does it relieve financial burdens if some expenses have been prepaid, but people whose loved ones pre-planned their funerals reported missing less work and experiencing less anxiety, sleep disruption, and memory impairment. Pre-planning also reduced the likelihood that people would have trouble enjoying everyday activities after they lost their loved one.

Complete Article HERE!

Financial planning tips for every family caregiver

By Rebecca Holcomb

Taking care of family in the best of times can be difficult. Some estimates claim 18.2% of the US adult population, or more than 43 million Americans provide unpaid in-home care for an adult relative. The numbers go higher as the cared for get older or when Alzheimer’s and other forms of dementia are taken into account.

Caring for an ailing family member or one at the end of life can be daunting. Exhaustion, an endless routine, and a constant need to be ready can drain even the healthiest caregiver. There have not been a lot of studies on what many are calling ‘caregiver syndrome.’ However, a recent survey found that 70% of all caregivers in retirement age, die before the person they are caring for.

The mental, physical and spiritual strain on the body can be so critical that a caregiver’s life can drain away while trying their best to care for their loved one.

With this in mind, here are some tips to help family caregivers do the near impossible.

Routine Conversation

When a loved one gets sick and needs long-term care, dealing with the ramifications usually falls on the next of kin. If the person is married, it’s their spouse. Or, in the case of elderly parents, it might be a child. A sibling might step in with a brother or sister who gets sick.

End-of-life choices and financial decisions can significantly impact your health and the health of those you care for.

Some of the topics that need to be discussed repeatedly as circumstances change are:

What part do you want the caregiver to play in tending to your financial assets

  • ? If you don’t want them to play a role in your finances, who will facilitate those decisions?
  • Where do you keep your estate documents? Have they been updated to reflect your current last wishes?
  • If you are sick and need long-term care, how can the caregiver make you most comfortable? What resources are available to help ensure you’re well taken care of?
  • How do you want to be remembered?

If an illness runs long, the person being cared for may change their minds repeatedly on the above questions, especially if cognitive decline is a factor.

Dementia and Other Cognitive Issues

One area that can be prevalent in long-term care is the incidence of cognitive decline. This is the gradual deterioration of mental faculties due to neurological or physiological disturbances.

Dealing with these situations can be arduous as they often take years to take full effect. Getting important issues taken care of beforehand is essential to ensuring your loved ones get the care they need.

Some factors to consider if a loved one is showing signs of cognitive decline are:

1. Financial Power of Attorney (POA): Ensuring that someone can make medical and financial decisions for your loved one is crucial to their end-of-life care. In cases of cognitive decline that doesn’t respond to medication, a loved one’s ability to choose wisely for themselves may suddenly disappear. If this happens and a POA isn’t already in place, you’ll have to file a conservatorship instead.

2. Medicaid/Medicare : Medicaid is a government medical and dental insurance program for low-income families. Medicare is a government insurance program for individuals aged 65 and older. If your loved one qualifies for one or both of these programs, they can significantly impact the financial toll that long-term care can take on your loved one’s assets. Apply for them as soon as you think your loved one might qualify.

3. Alternatives to state-led programs: If your loved one doesn’t qualify for Medicaid, paying for long-term care can be expensive. Look for ways to cut those costs down.

  • Hire a part-time caregiver
  • Hire a family member
  • Ask your loved one’s doctor to prescribe a nurse
  • Take advantage of technology and community resources

Scheduled Breaks

One area that caregivers often overlook is their own mental and physical health needs. Even if your loved one has everything in order, managing it can take a toll. Scheduling routine breaks for yourself is essential to ensure you stay healthy and happy despite caring for an ill family member.

Some ways you can make sure you and your loved one are cared for are as follows:

Schedule a CNA or Nurse: Two to three times a week, allow for a medical professional to take over the job you usually tend to. A nurse or CNA ensures your loved one is cared for (if they are at home) and allows you to attend to other errands or take a break.

  • Involve a trusted family member: Enlisting help from a sibling or other family member can give you a much-needed reprieve. This once-a-week break (or more) is crucial to keeping your mental health intact.
  • Transition to Assisted Living: Despite most people not wanting to put their loved one into a facility, sometimes a transition to assisted living can help ease the pressure of constant, 24/7 care.

No matter how you handle it, scheduling time to rejuvenate can help ensure you are around during your loved one’s last years.

Dealing With Death

No matter how long your loved one is cared for, death is the great equalizer. Planning a funeral when a loved one has passed away can be overwhelming, especially considering most people only plan one or two funerals during their lifetime.

Taking time to grieve is critical to ensuring wise decisions are made concerning the funeral and aftercare for your loved one’s estate. Before making any choices about the funeral, read over your loved one’s legal documents, including their last will and testament. Doing so will give you time to understand and ensure your loved one’s final wishes are considered.

Once you have those in place and the funeral is over, the next step is dealing with their estate. This situation can be overwhelming, especially if their legal documentation isn’t complete or they have a large estate to distribute.

When partitioning your loved one’s estate, have their legal documentation handy to ensure you’re giving the right part of the estate to the right person. 35% of Americans say they’ve experienced family conflict over an estate that was mishandled or didn’t have an estate plan set up ahead of time.

Considering these situations can help family caregivers ensure they have a much easier time dealing with end-of-life care for loved ones and to deal wisely with estate planning issues that may arise after a loved one dies.

Complete Article HERE!

Dignity in death

— What is voluntary assisted dying

Voluntary assisted dying is a way to take control over death.

By Elissa Napier

Despite the taboo around VAD, the procedure has become legal in the majority of Australian states, allowing those who are suffering to breathe a sigh of relief as they seek to gain some control back in their life, and put dignity back into death.

Whether or not a person decides to access this service, Hall and Wiley said just knowing it’s available has helped to ease the mind of so many Australians.

What is voluntary assisted dying?

Voluntary assisted dying is a medical service offered to those who are eligible, to successfully end the suffering of someone in the late stages of a terminal illness by taking a prescribed substance to end their life on their terms, and as Wiley said, it’s all about choice.

Eligible people can choose if they want to administer the fatal substance themselves, or have a practitioner do it for them; they can choose when and where they’d like the event to take place, ensuring providing comfort and dignity in death.

VAD was kickstarted in Australia by broadcaster Andrew Denton, who watched his father suffer a “drawn out, desperate death”. Denton’s charity, Go Gentle, has played a major role in getting VAD laws passed in all Australian states.

So, what are the eligibility requirements?

A person must be:

  • diagnosed with an advanced disease or medical condition that will cause death within the next 12 months;
  • is suffering from intolerable levels of pain and discomfort;
  • is of sound mind to make the decision;
  • is acting voluntarily and without coercion;
  • is at least 18 years old;
  • an Australian citizen or permanent resident.

The process

Given the gravity of making the decision to undergo voluntary assisted dying, it’s not as simple as just asking for medication.

A person must make three request’s to a medical practitioner within the designated 9-day period. However, once a request is made, and right up until the administration of the fatal substance, there is no obligation for the person to follow through with VAD.

Once the first request has been made, a person will need to undergo a consulting assessment to ensure eligibility, and once the final request has been made, they will then need one final review before the official administration decision is made.

The assessments must be completed by two separate doctors who have received mandatory VAD training.

Source: Queensland Government

Whilst practitioners can refuse to participate based on conscientious objection, the doctor must still inform the patient of the process and provide other practitioners names who can assist; the same goes for religious facilities, they cannot stop or inhibit a practitioner from fulfilling their job at the request of a patient.

Once the process is completed, a touching detail to ensure dignity is maintained even after death, VAD will not be written as cause of death on a person’s death certificate; it will simply state the illness or medical condition the person was suffering from.

By allowing a dying person to take control of their death, dignity can be restored to its fullest.

Complete Article HERE!

Are Wearables Helpful for Dying Patients?

— In 2009, health tech wearables hit the ground running and never looked back. Today, they’re still at the forefront of healthcare technology and expanding wildly like the old American west. Researchers and healthcare systems are excited about the promising ability of smart devices to monitor wellness and fitness, detect health problems early, and offer individualized advice like a personal coach.

by

  • Health tech wearables are devices like smartwatches, smart rings, smart clothing, smart patches, and implantables to monitor and support health and wellness.
  • Wearable health devices do offer benefits to terminally ill patients but can also present some risks.
  • Wearable devices may be more helpful for palliative care patients who still have years to live than hospice patients with less than six months.
  • Smart devices could support the health of caregivers who have little time for their own wellness.
  • Patients with a terminal illness must consider not only the benefits but also the risks before using a health wearable.

These devices are designed to support healthy living. However, how effective are they for dying patients? Can smart wearables help them, too?

What are “wearables?”

Two MIT professors created the first wearable technology in 1960. Their small computer fit into a shoe to improve their gambling outcomes at the roulette table. It took decades for technology to catch up with them.

In 2009, Fitbit hit the market as the first fitness tracking device, logging steps, distance, estimated calories burned, and sleep. Today, with 30% of Americans wearing health devices, people can buy smartwatches, smart rings, smart clothing, and even smart patches to monitor and support their health and fitness goals.

Healthcare wearable technology also includes devices implanted under the skin in various parts of the body. In the coming years, we may even wear electronic skin. Thin and stretchy like a temporary tattoo, “E-skin” is a clear, electronic adhesive placed on the skin to monitor your health.

Giving you minute-by-minute details about your wellbeing, wearable smart devices measure your health to monitor conditions and improve wellness. Some devices offer the ability to send this data to your doctor remotely.

Are wearables good for EOL patients?

End-of-life (EOL) is a term used for terminally ill patients who have six months or less to live. However, depending on where they are in their incurable health journey, patients with a terminal diagnosis can live for many years.

Palliative care is a specialty designed to care for seriously ill patients. It’s proven to help them live better and longer. Hospice is a type of palliative care for patients during their last six months.

Researchers are beginning to study smart devices for palliative care patients. Yet many palliative specialists are skeptical of using wearables for patients whose goal isn’t health progress but the quality of life in their remaining days.

In the end, as with any new technology, wearables offer both benefits and risks for EOL patients.

Benefits for hospice patients

When seriously ill patients enter their last six months of life — becoming “hospice eligible” — they no longer focus on treatment and recovery.

Most hospice workers stop checking vital signs, blood work, and other precise details of disease progression. They also remove as many medical devices as possible to “de-medicalize” the dying process. Instead of curing the disease with treatment and procedures, they help the patient live the best they can for their final months. They focus on symptom management, spiritual care, mental health counseling, end-of-life wishes, and companionship.

“Devices are a part of the medicalization of death. Unfortunately, in some cases, like advanced cancer, smart devices could cause over-treatment. When a cure is no longer possible, over-treatment increases patient suffering.”
Rebecca Gagne-Henderson, PhD, ACHPN

For smart devices to support the de-medicalization of end-of-life care, they would need to focus on the quality of life and comfort rather than improvement.

In 2021, Frontiers in Digital Health published a proof-of-concept article on a smart patch that would monitor dyspnea — shortness of breath — one of the most common symptoms of dying patients. Placed on the patient’s chest, the patch senses distressed breathing.

Though it’s a worthy concept, few healthcare teams need a monitor to assess dyspnea in an EOL patient. To a nurse or a certified nursing assistant, labored breathing is easy to identify and treat.

Veteran caregivers know there’s a risk of monitoring a device instead of the patient. While monitors are helpful and even vital in some circumstances, they can distract caregivers from carefully assessing the patient with their unique symptoms and needs.

Then again, the smart patch may support medically untrained caregivers at home by helping them identify breathing difficulties in their dying, unresponsive loved one. It’s possible a smart device could help teach them when to give comfort medications or reposition the patient.

However, monitors can also distress family members and patients with obsessive monitoring rather than peaceful, simplified care focused on the patient’s comfort.

Other useful wearables for end-of-life patients are devices that predict depression and anxiety. Mental wellness is a main concern for EOL patients. Some have difficulty expressing sadness and worries, and many healthcare workers are too busy or afraid to talk about it with their patients.

Furthermore, a smart device could help monitor a patient’s mental health symptoms — whether in a hospital or at home — and notify their loved ones or care providers.

Ideally, someone in their final months always has loved ones close by to assess their wellness. This relationship, as opposed to wearable technology, is the best treatment for the anguish of dying.

Unfortunately, however, many people still die alone — most without hospice care. Perhaps wearables could help palliative care teams remotely monitor patients dying without loved ones and trigger home visits when they need them.

Benefits for terminally ill patients

Patients can live with incurable diseases for years after their initial diagnosis. Wearables for this population are more promising than for hospice patients with less than six months to live.

Chronically ill patients dread another hospital admission. A 2019 study found that health tech wearables may improve the outpatient monitoring of cancer patients. The device could detect a decline in a patient’s condition and send the data to a doctor, catching the issue much earlier than the typical trip to the emergency department.

This early catch supports patient comfort and reduces costly readmissions for the patient and the health system. Data collection could also improve telehealth visits by recording vital signs and other assessment data before or during appointments.

Wearables may also improve care for patients with severe cardiovascular diseases and reduce their healthcare costs.

In 2021, a team of researchers assessed the relevance of medical wearables for the healthcare industry. When healthcare teams paired smart devices with relational coaching and support, 71% of patients achieved their blood pressure goal compared to only 30% who reached it without wearables and coaching.

Scientists say wearable health devices that gather cardiac data like heart rate, blood pressure, and electrical activity can help monitor the condition of severe cardiac patients. Implanted devices may eventually monitor heart failure patients, predicting negative trends and reducing hospitalizations.

Smart wearables also improve the early detection of infections like Covid-19. A study of the Oura wearable ring found that it detected a Covid-19 infection 2.75 days earlier than when most people seek testing.

Risks of wearables for EOL patients

Palliative care and hospice patients are uniquely different from healthy people and those with curable illnesses. As a result, we need more research on wearables in the end-of-life setting.

Palliative experts say constant monitoring may create problems for EOL patients, like causing false hopes, obsessions with health monitoring, or depression over lack of improvement.

Wearables could also distract from essential end-of-life goals such as enjoying time with loved ones or pursuing lifetime dreams during their final days or years.

Furthermore, smart devices are still developing. Their relevance and accuracy are improving, but many challenges still exist for using them in healthcare, like paying for the devices and integrating the data into the healthcare system.

The most concerning problem with digital health technologies, in general, may be the lack of research about security issues, data rights, and ethics of their use, as a 2021 review reported. It’s still a wild frontier tempting developers with power and dollar signs.

Nevertheless, smart wearable devices will likely become the norm in most patient situations. Studies show wearables are most effective in a close relationship with the patient’s healthcare team. This is especially true of people with terminal illnesses as they face unique symptoms and emotional suffering along their disease journey.

Caregivers can benefit from wearables

Caring for terminally ill patients is stressful, putting caregivers at risk of ignoring their own health to focus on their sick loved ones. Caring for caregivers is a major factor in patient care.

Wearables excel at health monitoring and motivational cues. Smart devices for caregivers could be the most effective use of wearables as they care for end-of-life patients.

Things to consider for EOL patients

If you or a loved one is facing a terminal illness and considering a wearable device, keep these thoughts in mind.

First, the device should help you become more in tune with your body — not less — to the point where you start to sense issues without the device.

Second, before buying a wearable health device, check with your physician about the type of monitoring most helpful in your unique situation.

Third, check your emotional response to the data, alerts, and motivational cues the device gives you. If it increases your stress levels, consider changing your use of the device or stopping altogether.

Most importantly, be sure it supports your quality-of-life goals as your disease progresses. As with all technology, it should improve your life rather than worsen it.

Most people are aware of wearable devices for monitoring health and fitness goals and workouts. However, with today’s technology, wearable medical devices can be used for patients nearing the end of life to help monitor vital signs and alert caregivers to a problem. These kinds of devices are meant to complement medical attention. They should not be a substitute for the personal, caring medical support that people with terminal illnesses need most.

Complete Article HERE!

Pressure Mounts for Hospice Reform

— As part of a growing national dialogue around hospice abuse, trade groups and government watchdog agencies are pushing regulators to make changes.

By Ava Kofman

Last week, the four largest hospice trade associations jointly sent a detailed memo of policy proposals to the Centers for Medicare and Medicaid Services, which regulates the end-of-life care benefit. Their 34 recommendations, which span eight pages, directly address the alarming business practices outlined by a recent ProPublica-New Yorker investigation.

“The New Yorker-ProPublica investigation shook the industry to its foundation,” said Dr. Diane Meier, a geriatrician at New York’s Mount Sinai hospital and a leading authority on palliative care. “You have four major industry groups coming together, as they don’t always do, on a series of significant policy and regulatory changes for hospice. This suggests — contrary to public messages about this being just a few bad actors — that it’s not just a few bad actors. There are systemic problems with the lack of oversight and the profit motive.”

Industry leaders are not the only bloc pressuring CMS for greater hospice oversight. Senators and government watchdog agencies are also pushing the agency for concrete changes. Last week, the Government Accountability Office released a report asking that hospices be required to report observations of abuse and neglect, regardless of whether the alleged perpetrator works at the hospice. MedPAC, the congressional advisory panel on Medicare spending, has again endorsed modifying the hospice payment structure to reduce part of the financial incentive for enrolling ineligible patients. And in late December, the inspector general’s office at the Department of Health and Human Services announced that curbing the abuse of hospice patients was among its top unimplemented recommendations.

Drawing on state licensing records and federal data, our story highlighted how networks of entrepreneurs are propping up an alarming number of for-profit hospices in Nevada, Texas, Arizona and California. As part of their recommendations, the trade groups flag several specific ways that CMS could use its power to curb the “inappropriate” proliferation of hospice licenses, such as increasing the number of inspections for new providers, limiting Medicare hospice certifications in high-growth areas and cutting off funding to high-risk operators. ProPublica found that some of these new hospices improbably share staff, owners and addresses. These suspicious business practices, the trade organizations note, could be treated as red flags that would trigger prepayment scrutiny or billing audits.

“Providers don’t like surveys” — inspections — “and are usually not the ones to ask for more of them,” said Dr. Joan Teno, an expert on the industry and adjunct professor at the Brown University School of Public Health. “You’ll hear various entities paying lip service to reform, but what they’re saying here is that they want to fix the problem and offering specific recommendations for how to do so. It’s unusual and impressive.”

Among its proposals, the memo discusses the need to rein in predatory marketing schemes. ProPublica’s reporting found that profit-seeking providers can take advantage of the fact that many people don’t know what hospice is to recruit new patients who are not dying. Some hospice marketers — known in the industry as “community liaisons” or “community educators” — aggressively solicit new patients with promises of free housekeeping and trips to the beach and casino. Others treat physicians to cash bounties and bottle service at Las Vegas nightclubs to gin up referrals. The groups ask that CMS update its regulations to require hospices to develop policies on “ethical marketing practices.” (Such policies, they note, must prohibit kickbacks, disclose bonuses to marketers and mandate that hospices clearly explain the benefit to patients.)

ProPublica’s investigation pointed out that practically anyone can open a hospice. I came across hospices owned by vacation-rental superhosts, a man convicted of drug distribution and a criminal-defense attorney (who once represented a hospice employee convicted of fraud and was later investigated for hospice fraud himself). The trade associations have asked CMS to prohibit individuals with convictions for certain crimes from operating hospices and to require training and background checks for hospice administrators, noting that “unqualified or risky hospice leadership” could lead to fraud or poor quality of care.

It’s hard to require that hospice owners have appropriate qualifications, however, if the identity of those owners remains unknown. As private equity firms acquire an ever-greater share of the hospice market, many families have no way of untangling who actually operates their provider. This lack of transparency, the trade groups write, “makes accountability for poor performance difficult and makes it harder for patients and families to choose quality providers.” At the moment, it’s easier to research a hotel for your honeymoon than it is to research the hospice that will care for your loved one. But it doesn’t have to be this way: CMS could make hospices disclose their owners and major investors, the groups say. It could also revamp its Care Compare website — a sort of TripAdvisor for end-of-life care consumers — to prioritize quality metrics and make its data more accessible. In response to questions from a groundswell of readers in the wake of its reporting, ProPublica published a guide to help families research their provider and spot common signs of fraud. The trade groups propose that similar information be incorporated into the official Medicare handbook for hospice consumers.

Throughout the memo, the trade groups emphasize that CMS already has the authority to implement many of their suggested reforms. The next step, they say, is making sure the agency has the funding to actually carry out its essential oversight role. “Part of our plan is to offer support in advocating for the agency to have the resources it needs, and that’s part of our goal in sharing this with Congress,” said Mollie Gurian, a vice president at LeadingAge, an association of nonprofit eldercare providers, which co-authored the memo. Gurian and her peers in the field are in the process of scheduling a meeting with CMS, which did not respond to ProPublica’s request for comment. “We didn’t all come into these discussions with the same list, but we are all committed for hospice to be the special benefit that it is and we all agree that it is under threat,” Gurian said.

Complete Article HERE!

Choosing to halt nourishment: an end-of-life decision

— A palliative-care specialist discusses his role with terminally ill patients who want to hasten death by not eating or drinking.

A hospice nurse provides palliative care to a man with Parkinson’s disease and cancer.

by Brian Donohue

It’s not only patient cases that inform clinicians’ expertise. Geriatrician David Gruenewald took a lesson from his mom, Mary, who at the time was a resolute, capable woman in her late 80’s. As Alzheimer’s encroached conspicuously into her life, she considered hastening her death so as not to burden her children.

“She saw this as a way of maintaining control over the end of her life,” Gruenewald recalled. “We had talked about that for decades, so it was no great surprise that she started talking about possibly ending her life.” The plan his mom considered was to stop eating and drinking.

Gruenewald, a UW Medicine specialist for older adult patients, is medical director of the Palliative Care and Hospice Service at VA Puget Sound Health Care System. Keenly aware of the growing tidal wave of people age 60 and over, he recently delivered a training presentation to dozens of clinicians. Its focus: how to talk with patients who are contemplating voluntarystopping of eating and drinking, “VSED” for short.

picture of David Gruenewald with his mother, Mary
Dr. David Gruenewald with his mom, Mary Matsuda Gruenewald, in 2017. She died in 2021.

As an option for people with decision-making capacity who want to manage their death, VSED has not drawn the same public scrutiny and controversy as medical aid in dying, in which a clinician provides drugs that a patient takes — a practice that’s legal in only 11 U.S. states.

“Workers in palliative care haven’t been much aware of VSED, even though very likely it has been going on for millennia,” said Gruenewald. He added that VSED is an important option for patients expressly because it does not require a doctor’s presence or participation.

“It represents personal autonomy and choice, and healthcare organizations like the American Nurses Association are publicly declaring that VSED is an acceptable, valid approach when palliative care fails to relieve end-of-life suffering,” he said.

When a patient is nearing the end of life or has a terminal condition, and expresses an interest in hastening death, palliative-care providers work to establish that the person has full decision-making capacity that’s not clouded by conditions such as depression or advanced dementia, and has suffering that cannot be adequately relieved by other interventions.

“The first thing is I want to understand is why you are asking for us to help you die. I want to fully understand that before we start talking about nuts and bolts of VSED. In my mother’s case, the reasons for her suffering were key to every part of the conversation that happened after that,” Gruenewald said.

In his presentation, Gruenewald reflected on the experience of a male patient, 67, who had advanced cancer and could not tolerate more chemotherapy. The patient had been admitted to the hospital with pneumonia and voiced a wish to go home and die by self-inflicted gunshot.

“He did not see value in continuing to live and being unable to do the things that formerly gave his life meaning. In talking with him, it was very important that I understood his suffering — the physical, the emotional, interpersonal and spiritual reasons,” Gruenewald said. “And then to see if he was open to considering a less violent path, which turned out to be VSED.

picture of David Gruenewald
“The first thing is I want to understand is why you are asking for us to help you die. I want to fully understand that before we start talking about nuts and bolts of VSED,” said palliative care specialist Dr. David Gruenewald.

“We were able to establish trust, and then to talk through that option and create a plan with supports. It wasn’t quite what he had envisioned, but it was acceptable to him.”

Research indicates that patients who pursue VSED are typically over age 80 and significantly burdened by disease, dependent on others for care, and face a short life expectancy.

Although VSED is not very painful, Gruenewald said he would not recommend it to relieve suffering from severe physical symptoms in the final days of life. The VSED process usually lasts one to two weeks and requires resolve to carry out. Pangs of hunger and thirst typically diminish within a couple of days; dry mouth can be managed with ice chips and over-the-counter products. But the patient will grow progressively weaker, and dehydration may bring agitation and delirium. Physical and emotional support from family members and friends can help get through this phase.

“The way you die has an effect on the people that you leave behind,” Gruenewald said. “And there is evidence that, for many people, VSED can be more peaceful than dying by medical-assisted dying.”

VSED’s lack of immediacy gives the patient time to reminisce over stories and to say goodbye to friends and family. This opens the process and can make it more harmonious for all, Gruenewald said. Another advantage: It gives the patient time to reconsider.

Mary Gruenewald lived another seven years after she initially broached VSED.

“She was in assisted living by then,” her son recalled. “For most of that time, it was at least acceptable, if not high, quality of life. And she was continuing to contribute meaningfully to friends and family in a way that other people really cherished. Those would have been years of life that she would have forgone.”

Complete Article HERE!