Category: Death Education

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A ‘death doula’ explains how to transcend your fear of dying so you can truly live in the present

Death doula, Tree Carr, explains what she’s learned as an end-of-life guide and how to overcome fear of death so you can live a life with no regrets

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Death doula Tree Carr’s insight into peoples’ final days means that she’s more in touch with mortality than most. Supporting people on their final journey may sound like a grim task, but for Tree, this calling has taught her lessons on how to truly live. Lessons which she has shared with woman&home…

Death is the great unknown and the idea of having to face up to our own mortality and how we’ll be remembered after death can feel more than daunting. However, by learning to interact with this inevitable experience with a positive and supportive lens—you can stop being scared of it. In doing so, you focus on living a far better life, with no regrets.

The word alone can evoke terror, superstition, grief, feelings of loss of control, and existential dread. The sobering reality of death is often kept swept under the carpet and considered taboo for most conversational circles. 

In our long timeline of humanity, we’ve sought to cheat it; delay it; bargain with it; or transcend it. Its great and elusive mystery has captivated the mystics and has raised the eternal question that science has yet to answer—does consciousness carry on after the body expires? No matter what your ontological or epistemological worldview on death is, it’s safe to say that most people are scared to death of dying.

What is a death doula?

A death doula is an end-of-life guide who holds compassionate space for a person journeying through the psychological, emotional, spiritual, and practical terrains of death and dying. The word doula is from ancient Greek, meaning, ‘a woman who serves’—although the role is far from being gender-specific.

I felt the calling to become a death doula in my early forties after a lifetime of synchronistic events all revolving around death. From a near-death experience of nearly drowning in the Atlantic Ocean at the age of four, through to many serendipitous moments involving being at the right place at the right time when strangers on the street have been close to death.

“You can stop being scared of it. In doing so, you focus on living a far better life, with no regrets.”
— Tree Carr

What I’ve learned as a death doula

In my work as a death doula, the most challenging aspect that I witness a dying person go through is surprisingly not the biological deterioration of the body (there is plenty of palliative care pain control for that). In fact, it is the emotional or psychological loss of the sense of ‘self ‘ that appears to be the most painful.

From what I’ve personally observed, at the end of life many people experience a long, slow, and winding loss of who they knew themselves to be. They are thrown into the existential dark night of the soul asking the big questions: What am I? Who was I? What was this all for?

As a result, this can propel the dying person into depression, grief, isolation, and anxiety. This is where the role of a death doula can be very helpful, traversing alongside a person as they lean into the fears and trepidation of the big D!

Certainly, overcoming the fear of death it’s not a ‘one shot’ remedy most of the time and can be a gradual unfolding that combines a mixture of practices and experiences.

How I help people overcome fear of dying

Person contemplating life

Surprisingly enough, my death doula work isn’t always for people who are actively dying. I have folks getting in touch who aren’t dying at all, but they have anxiety around death. Perhaps they are coping with the loss of a parent or struck with grief from experiencing the death of another person they knew.

I guide my client’s through navigating death phobia, tackling grief illiteracy, bereavement catharsis, and reframing the narrative around the topic and therefore moving into a peaceful acceptance of death.

Part of the journey can involve meditations on death, closure techniques, and emotional integration through a variety of creative processes—letter writing, drawing, conversation, and more.

Here are some simple practices I encourage my clients to engage in each day to help overcome the uncomfortable feelings around death…

Observe the ‘little endings’

One way you can start to journey into your fear around death is to have a daily practice where you bear witness to the ’little deaths’ all around you every single day.

It’s a form of mindfulness with a central focus on the theme of endings. When you meet a friend for coffee and then you both say goodbye and they walk away and leave. This is a little ending. When you lose your mobile phone. This is a little ending when the sun sets every evening. This is a little ending.

Allow yourself to hold awareness for these little endings and be with any emotions rising up. Begin to surrender to the process of not holding onto the little endings but allowing them to release. 

Engage the art of non-attachment, seeing that the only constant, is change. Regular meditation practice is also a good habit because it will help to stabilize a conscious state of equanimity through experiencing endings.

Watch the cycles of nature

A pathway through a dark foggy wood

Another helpful tip is to sit and be with nature, observe and be mindfully present. Being closer to nature connects a person to the reality of impermanence. Observing the shifting and changing of the seasons. The growth, decay and return to Spring Equinox. This forever cycle of life, death, and rebirth.

Observe yourself falling asleep

Something else that can help out is sleep. The threshold states of sleep are liminal experiences just as death can be. When one becomes comfortable in these altered sleep states it can help ease the fear of death.

Make space in your bedtime routine for observing this. As you fall asleep every night and you hover on the liminal threshold of the hypnagogic state you can practice and surrender to the idea of your own death. Allowing yourself to relax and surrender to sleep from the cusp of fatigue is a surprisingly easy and transformative technique.

Attend a Death Cafe

Death Cafes are safe spaces to gather and meet to talk with other people about all things death and dying over coffee, tea, and cake. Whether you share your own experiences around losing a loved one or a beloved pet. Or maybe you are navigating your own end-of-life journey, Death Cafes are death-positive, compassionate, non-biased, and non-judgemental events.

In the many Death Cafes that I’ve facilitated worldwide, I see the boundaries of culture, gender, age, race, and religion dissolve as we all come together in solidarity over the one thing we all have in common—the fact that we will all one day die.

Living a life in fear of an inevitability that we all share can prompt or worsen difficult emotions, like anxiety, depression, panic attacks, and conditions like sleep anxiety
and insomnia.

However, by embracing the awareness of this inevitable life process, through positive and supportive ways, can not only help us live a more enriching life—but also help us to live one with no regrets.

Complete Article ↪HERE↩!

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For end-stage dementia, Medicare can make hospice harder to access

The number of elderly Americans with the disease is projected to double by 2060. Many will need hospice care but the program will need reform to aid them, experts say

By Emily Harris

Janet Drey knows how hard it is to predict the future, especially the future of someone who lives with dementia. In 2009, a neurologist diagnosed her mother, Jean Bishop, then age 79, with frontotemporal dementia, a disorder that irreversibly damages the front and sides of the brain.

When Jean could no longer walk, speak or feed herself a year later, doctors confirmed that she had less than six months to live, Drey recalls. The prognosis fit Medicare’s definition of being terminally ill. That prognosis qualified her for hospice care, an interdisciplinary approach that prioritizes comfort and quality of life in a person’s final months.

The streamlined access to doctors, nurses, social workers and medications covered by Medicare, quickly became essential to Jean and her husband, and made it possible for them to continue living together on their 40-acre farm in rural Iowa.

But as can be the case with dementia, Jean’s decline was less precipitous than expected. When she was alive after six months, her physicians took another look at her condition. It seemed to be deteriorating, so they recertified her for hospice.

After several more months of care, Jean’s condition stabilized. She was still living with a progressive disorder, but Medicare’s coverage of her hospice costs was stopped because her eligibility for it was tied to her condition worsening.

Without it, Jean’s husband, Leonard Bishop, in his mid-70s at the time, was on his own most days to care for her: lifting her out of bed and placing her before her favorite south-facing window, helping her bathe and eat, and managing her pressure sores.

Inevitably, Jean’s dementia worsened. When Leonard found Jean unresponsive one morning in 2011, doctors deemed again that she had less than six months to live. She was re-enrolled. This cycle in and out of hospice occurred three times over three years.

Exhausted, Jean’s husband almost didn’t enroll her the third time, asking Drey and her siblings, “Well, if they’re just going to discharge us again, should I even do this?” Jean died almost exactly six months after her third admission.

Jean’s experience isn’t an outlier.

Based on a recent study, Medicare’s hospice regulations are not working as intended for many people with dementia, says Elizabeth Luth, a sociologist at Rutgers University who studies end-of-life care. According to her study of 3,837 hospice patients with dementia, about 5 percent are pulled from hospice when their condition seems to have stabilized.

Plus, the number of Americans over 65 with dementia is projected to more than double to 13.8 million by 2060. Many will need hospice care. “It’s worth asking the question, ‘Should we reevaluate?’ ” Luth says.

The Centers for Medicare and Medicaid Services (CMS) has been introducing new payment structures, pilot programs and quality metrics to address weaknesses in the hospice admission criteria. None of their solutions, however, have modified the six-month benchmark — that would require a change in law, according to a CMS spokesperson. With no amendment to the six-month rule in sight, hospice and palliative care workers are pushing for a different end-of-life model for people with dementia.

Congress created Medicare’s hospice benefit in 1982 to provide dying patients with medical, social and psychological support. To keep costs of the new benefit down, it capped the definition of terminal illness at six months to live to balance money spent on hospice care with expenses saved from avoiding costlier hospitalizations that often occur at the end of life.

For a couple decades, the six-month benchmark worked. Most early hospice patients — over 75 percent in 1992 — had cancer. Doctors can predict with relative accuracy when a patient with advanced cancer has less than six months to live.

Today, the average hospice patient is very different. About half have dementia, according to a study published last year. And as Jean’s family experienced, predicting when a patient with dementia has only six months to live is difficult.

“Dementia clearly does not fit the disease trajectory of 70s cancer patients,” says Joan Teno, a health services researcher and former hospice medical director

Theoretically, up-and-down declines and incorrect prognoses shouldn’t be a problem. Doctors can recertify hospice patients who are alive after six months as still terminally ill, as Jean’s physicians did during her first hospice stay, and Medicare will continue to reimburse for that extra time.

But reality can be more complicated, says Krista Harrison, a health services researcher at the University of California at San Francisco. Hospice programs with too many patients receiving care for more than six months raise some flags for Medicare, and are sometimes audited as a result — an expensive, time-intensive process. If an audit uncovers seemingly inappropriate use of the benefit, the hospice might have to repay money that Medicare reimbursed, which can run up to millions of dollars.

Sometimes, people with dementia can stabilize while they are receiving hospice services, as Jean did. “For those people living at home, there’s not really any other services out there that provide the same level of support,” says Lauren Hunt, a former nurse practitioner who now researches end-of-life care at UCSF.

So when patients enroll, they may finally have the care they needed all along and their condition can get a little better or at least stabilize. This can then make them ineligible for Medicare support going forward.

In the end, Medicare’s penalties leave clinicians and hospice organizations in what Harrison calls “an impossible moral quandary,” with the needs of their patients with dementia on one side and Medicare’s six-month regulations on the other.

“We need to update the payment models, and especially hospice, to really reflect this changing disease trajectory of an aging society,” Teno says. “What I’d rather see is some flexibility.”

CMS began to update its payment models in 2016 after years of warnings from Medicare’s advisory body that some hospice organizations were using the benefit for financial as much as for care reasons.

The payment reform has Medicare reimburse more (about $200 for routine care) for the first 60 days a person is enrolled in hospice and about $160 after that, until care again intensifies at the end of life. That scheme aligns better with hospice’s U-shaped pattern of costs. Before that, when Medicare paid a flat rate, it was easier for financially driven organizations to enroll patients with unpredictable declines too early and make extra money during their lengthy middle periods.

Another new model started on the first day of 2021. It’s one that applies to people enrolled in Medicare Advantage, the insurance people over 65 can opt for instead of Medicare. This pilot program is meant to smooth fragmentation in hospice care, previously covered only by Medicare, for the roughly 40 percent of older Americans with Medicare Advantage.

Beginning this year, Medicare also introduced a quality metric that tracks the number of people unenrolled from hospice, giving CMS another way to keep tabs on organizations with too many people unenrolling from hospice.

Without a change in the six-month rule, however, many end-of-life care experts say Medicare should come up with a new rule to provide palliative care for people with dementia that focuses on pain and other quality-of-life issues, and that is tailored to the person’s needs earlier in their illness. More intensive hospice services would be added later.

“What makes sense is to have a different type of program that allows for a larger prognostic window, but that would also reimburse less than hospice does,” says Claire Ankuda, a palliative care physician and researcher at Mount Sinai.

Jean Bishop’s family agrees with that.

Several months into 2013, she had qualified again for hospice, her third go-round. A week before Christmas, the 83-year-old mother of 10 died, surrounded by her husband and children, four years after she had been diagnosed with dementia.

Because Jean’s disease unfolded slowly, it would have been helpful for her and her husband to have had consistent support from the start that eased into hospice care, Drey says.

Instead, Jean and her family weathered abrupt gaps at an already vulnerable time. For Jean’s husband, Leonard, one of the most devastating parts was the questions that would go unanswered between enrollments without the advice and help of hospice specialists: What the end would look like, and whether he would know what to do for Jean — and be able to do it.

“He had to work out in his head a scenario so that if something happened and it was a crisis, he knew how he would act,” Drey says.

During the periods that Jean was ineligible for hospice, he knew he would have to handle those crises alone.

Complete Article ↪HERE↩!

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In Difficult Cases, ‘Families Cannot Manage Death at Home’

Health care researchers argue that hospice facilities could better serve some terminal patients, and ease the burden on exhausted loved ones.

A hospice and palliative care center in Corvallis, Ore. Although most people say they wish to die at home, it’s not always the best course, some health experts argue.

By Paula Span

Where do people most want to be when they die? At home, they tell researchers — in familiar surroundings, in comfort, with the people they love.

That wish has become more achievable. In 2017, according to an analysis in The New England Journal of Medicine, home surpassed the hospital as the most common place of death — 30.7 percent of deaths occurred at home, compared with 29.8 percent at the hospital.

“It’s probably the first time that’s happened in the United States in modern times,” said Dr. Haider Warraich, a cardiologist at the Veterans Affairs Boston Healthcare System and an author of the study, published in 2019. Technically, the proportion was even higher, since some people who died in nursing facilities (20.8 percent) were long-term residents and the nursing home effectively was their home.

Dr. Warraich credited the change to the rise of hospice care, for which Congress authorized Medicare coverage 40 years ago. By 2019, more than half of Medicare beneficiaries who died were enrolled in hospice. “There’s been a cultural shift,” he said. “People don’t want to die in hospitals, and hospice helps make that possible.”

But not always.

When Lee Zeiontz was dying of lung cancer, she wanted to remain in her apartment on the Lower East Side of Manhattan with her cat on her bed and her neighbors stopping by. Lynda Hollander, her niece, hired a round-the-clock aide to supplement the hospice staff.

But Ms. Zeiontz’s pain eventually intensified and her older relatives were uneasy about administering morphine. “I think they were afraid of her dying at home,” said Ms. Hollander, a social worker in West Orange, N.J. They moved Ms. Zeiontz to an inpatient hospice unit at Mount Sinai Beth Israel Hospital, where she died a day and a half later, at 70.

Similarly, Alan Mironer had vowed to care for his wife, Lynne, with hospice help in their home in Edina, Minn., as she died of breast cancer. “He felt it was his responsibility,” their son, Mark, said. But as she weakened and became unable to walk to the bathroom, he said, “suddenly, it was so much more work to take care of her.” The elder Mr. Mironer, then 81, became overwhelmed.

Neighbors told them about a small hospice facility in Edina, with room for eight patients. Ms. Mironer spent her final week there, dying at 78.

Such experiences prompted an article this month in The New England Journal of Medicine that pointedly asks, “Is There Really ‘No Place Like Home’?”

The lead author, Dr. Melissa Wachterman, a palliative care specialist at Harvard Medical School, and her co-authors argue that alternative locations, including free-standing inpatient hospice facilities and hospice units within hospitals, could better care for some terminal patients with difficult symptoms and provide relief for exhausted families. They also contend that financial incentives play a role in where death occurs.

“There’s a lot of cultural pressure: ‘If you really loved this person, you’d keep them at home,’” Dr. Wachterman said in an interview. “We need to acknowledge that there are people whose needs are so great that families cannot manage death at home.”

Ninety-eight percent of hospice patients covered by Medicare receive what is called “routine home care.” The hospice organization sends nurses, aides, a social worker and a chaplain, in addition to drugs and equipment like a hospital bed, to the patient’s home. But it can’t provide 24-hour care; that falls to family or friends, or helpers paid out of pocket.

Often, that’s sufficient. But death can follow unpredictable trajectories, and some terminal conditions appear better suited to home death than others. Cancer patients have the greatest odds of dying at home, Dr. Warraich’s analysis showed. Patients with dementia are most likely to die in a nursing home, and those with respiratory disease in a hospital.

Some patients “may not need someone at the bedside 24 hours a day, but they need someone available 24 hours a day,” Dr. Wachterman said.

A handful of hospice patients receive “continuous home care,” which means nurses and aides are provided eight to 24 hours a day; this accounts for 0.2 percent of hospice days, according to the Medicare Payment Advisory Commission, an independent agency that advises Congress on Medicare issues. Another handful receive inpatient services in a hospice facility, hospital or nursing home.

But inpatient care is hard to secure, accounting for just 1.2 percent of all hospice days in 2019. To be covered under Medicare, the patient must be diagnosed with a symptom that cannot feasibly be managed in any other setting, and “that’s a pretty high bar,” Dr. Wachterman said.

The authors also argue that although Medicare pays more for inpatient care — $1,000 a day, on average, compared with $200 for home care — profit margins are higher at home. More than 70 percent of hospices are now for-profit agencies.

Rankings on the quality of hospital care like those published by U.S. News & World Report may also prompt hospitals, who want to keep their mortality statistics low, to discharge patients to home hospice.

Edo Banach, president and chief executive of the National Hospice and Palliative Care Organization, disputed the article’s financial assertions. “It’s not true that margins are necessarily higher for routine home care versus inpatient,” he said, attributing profit differences to the length of a patient’s stay rather than the setting.

Instead, Mr. Banach primarily blamed a fear of Medicare audits, which are not uncommon, for the infrequent use of inpatient hospice care. “Providers are very reluctant to use that benefit unless it’s also clear that they won’t be hurt by the government on the back end” and forced to return contested payments, he said.

Still, he said there was nothing in the authors’ recommendations that he fundamentally disagreed with, including their calls for changes like financial support for family caregivers who assist dying patients.

The authors also advocate expanded access to continuous home care and lower barriers to inpatient end-of-life care, in hospice facilities (the national organization estimates that about 30 percent of hospices have them) or hospice units within nursing homes and hospitals.

Of the three times I have accompanied family members to their deaths, we achieved the good-death-at-home paradigm once: My mother died at 80, with uterine cancer and after a major stroke, in her own bed. My father and I cared for her, with a hospice team. He died at 90, when sepsis overwhelmed him in a hospital before I could arrange for hospice care at home.

My sister’s death in 2015 showed the possibility of a middle ground. Disabled by late-onset Tay-Sachs disease, a neurological condition, she had been hospitalized with an uncertain prognosis. I was her health care proxy.

As she declined, she developed such severe pain that, between sobs, she was calling for our long-dead parents. I immediately enrolled her in hospice and began planning to move her back to her assisted-living facility, so that she could die in her own apartment.

It soon became clear that would be impossible. In the hospital, hospice nurses visited twice a day, constantly raising the dose of her morphine drip before switching to more potent medications. Having staff nurses always nearby allowed us to provide comfort, relying on a team we never could have duplicated on our own.

To its credit, the hospital understood our needs. It arranged for a private room with 24-hour access for my cousin and me. We turned off the TV and the intercom, dimmed the lights, played soothing music, allowed family and friends to come and kept the vigil. It wasn’t homey, but it was peaceful. My sister, just 62, died after 24 days in the hospital and 14 in hospice care.

Far more hospice patients and families could probably benefit from a similar option when home care proves too difficult.

“For many patients, ‘home’ isn’t the physical place,” Dr. Warraich said. “It’s a metaphor for a place that’s not medicalized, that’s comfortable and full of love.”

Complete Article ↪HERE↩!

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Preparing for your first end-of-life conversation as a resident

By Jules Murtha

Key Takeaways

  • Some healthcare providers struggle to initiate and maintain end-of-life (EOL) conversations with patients due to lack of proper training.
  • Aspects to consider include determining who to include in the conversation, what your goal is, when and where to have it, and how you’ll structure the interaction.
  • General practitioners with experience in EOL conversations cite four important elements: preparation, finding a conversational entry point, modifying your communication to suit the individual, and inviting the family to participate if possible.

Engaging in end-of-life (EOL) conversations with patients requires careful, strategic communication on the part of the physician. For physicians and residents who lack experience covering the complex subject of death with their patients, EOL conversations can be difficult, according to a study published by the Annals of Palliative Medicine.[1]

Good physician communication, however, is central to patient satisfaction during palliative care. Residents can better prepare for EOL conversations by determining the logistics of the interaction beforehand, and tailoring their presentation to the patient’s preferred communication style.

First, focus on logistics

If you’ve yet to have your first EOL conversation in residency—or your first few—you might feel ill-equipped to start one. Even physicians who have established practices struggle to engage in such weighty interactions. Fortunately, there’s a list of questions you can answer prior to the discussion that may pave the way to meaningful results.

An AMA Journal of Ethics article explains the significance of addressing the logistical elements of an EOL conversation before starting one. [2]

These include the following:

Who? Clarify with your patient who exactly they’d like to have present for the conversation. Family members, while supportive, may disagree on treatment options or get swept up in intense emotions. It’s your responsibility as a physician to call everyone’s focus back to the patient. Patience will serve you well in EOL discussions, especially those that include family.

What? Determine what you’d like to accomplish with the conversation. Perhaps your goal is to provide updates on your patient’s prognosis, or deliver important news. On the other hand, maybe now’s the time to ask your patient what their goals of care are, or to relay that information to the family and other caregivers. You decide how much to share about the illness and its prognosis based on what your patient is ready to receive.

Where? Most often, EOL conversations take place at a patient’s bedside. This is largely due to their condition and lack of other space.

Having a quiet room free of interruptions is important for this kind of discussion. Sit near the patient rather than standing above them; this shows that you care and have time for them, and are not in a rush to leave.

When? Schedule EOL discussions when you have time to actively listen and be present for your patient. Be sure to clarify any misunderstandings, offer suggestions, and propose next steps. Try to steer clear of integrating EOL conversations into your routine rounds and office visits, as you might be too busy racing the clock to give your full attention.

How? Having a loose conversational structure may be helpful. Start by naming any goals you may have for the interaction while maintaining the flexibility your patient may require. Ask an open-ended question. Remember that your patient’s needs and ability to accept information are foremost. Listen first. This is likely to be a heavy moment for your patient, fraught with emotional upheaval that prevents them from taking in what you have to say.

“Silence can be golden in these conversations.”
— AMA Journal of Ethics

Taking cues from general practitioners

General practitioners who have had a lot of experience in palliative care conversations have developed a feel for them that can help guide residents in finding their own approach. These strategies, described in a study published by Family Practice, emphasize preparation, alongside three additional tactics to aid physicians in EOL interactions.[3]

Gauge readiness and choose an entry point

According to GPs participating in the study, successful EOL conversations are rooted in a strong patient-doctor relationship. Having already established good rapport and trust with a patient eases the EOL conversation, over and above preparing for it.

It’s important to gauge a patient’s readiness to enter into the EOL conversation. To do so accurately, you should consider the patient’s personality and psychological state.

Observe their demeanor, and pay close attention to any verbal and nonverbal cues they give you regarding their prognosis.

Once you feel you’ve got a good handle on your patient’s current state, focus on finding an appropriate conversational entry point.

There are different ways to do this, as the doctors told Family Practice. You can respond to patients’ inquiries about their goals of care, or implement EOL conversations routinely with patients who could benefit from them. For some patients, the physician might directly address their prognosis, whereas for others, it might be best to test the waters by asking indirect or hypothetical questions about plans for their future care.

Read your audience and involve the family

Two other tactics that GPs use to engage in fruitful EOL conversations are tailoring communication to the patient’s communication style and getting the family involved when it’s appropriate, as noted in Family Practice.

To better reach your patients, you may have to modify your communication style and approach the EOL discussion in increments, rather than all at once. Using a gentle approach for the patients for whom this is appropriate could mean saying something like “The chances of someone living with this for more than two years are very low.” For others, depending on the personalities of both physician and patient, and their relationship, a direct, honest approach may be the most fruitful.

Finally, the patient may choose to have family members in the room during EOL conversations. Some doctors find the presence of family to be valuable for information-sharing purposes and determining the right course of treatment for patients nearing their final days.

What this means for you

Residents who struggle with EOL conversations and  discussions about goals of care may sharpen their skills in a palliative care rotation. In the meantime, prepare for EOL conversations by answering the following: Who will be present? What is the goal? Where is the best place to initiate it, and how soon?

Think about how you can structure the conversation to best meet your patient’s needs. Once you enter into the conversation, adjust your communication to a style that’s most sensitive to your patient, whether this means taking a gentler, or more direct, approach. Finally, involve the patient’s family when you feel it’s appropriate.

Complete Article ↪HERE↩!

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Doctor describes what it’s like to provide medical assistance in dying in new book

After more than 20 years delivering babies into the world, Dr. Stefanie Green, seen in an undated handout photo, decided to specialize in delivering suffering people out of it. Green has now written a book, “This is Assisted Dying: A Doctor’s Story of Empowering Patients at the End of Life,” describing the first year of her new practice.

By Joan Bryden

After more than 20 years delivering babies into the world, Dr. Stefanie Green decided to specialize in delivering suffering people out of it.

She was among the first Canadian physicians to offer medical assistance in dying, known as MAID, once it became legal in this country in 2016.

Green has now written a book, “This is Assisted Dying: A Doctor’s Story of Empowering Patients at the End of Life,” describing the first year of her new practice.

She provides heartbreaking details of patients she helped, and the ones she could not because of the restrictive nature of the new law, which limited the procedure to people whose natural deaths were “reasonably foreseeable.”

She describes the gratitude of grieving family members but also the man who accused her of murdering his aunt. The loving last words exchanged between a husband and wife, lying naked together in bed, and the patient whose parting words to her good-for-nothing grandson were “clean up your crap.”

Green also describes in painstaking detail the care that goes into assessing a patient’s eligibility for an assisted death and the series of lethal injections designed to gently ease a patient into sleep, then a deep coma before the heart finally stops.

The book, Green said in an interview, was partly an attempt to stimulate discussion about the end of life, a topic most people are afraid to talk about. But it was also therapeutic for her.

“The real raw truth is that, as soon as I started doing this work, I was kind of overwhelmed with the incredible experiences I was having … The work itself and the intimate relationships that I was kind of thrown into right away and the interactions I saw between people and their families were just extraordinary,” said Green, who heads the Canadian Association of MAID Assessors and Providers.

“At some point I decided I wish I could tell someone what’s happening, what I’m doing, what I’m seeing, what it feels like, what it looks like, how it works, you know, dispel those myths … It’s almost like I needed to tell someone.”

In an odd way, Green said her work as a maternity doctor was “a good fit” with providing medical assistance in dying, dealing with intense emotions and the family dynamics attending both the happy and unhappy events. Among family and close associates, she refers to assisted deaths as “deliveries.”

Indeed, she said helping to end people’s suffering has been the most rewarding experience of her career — although initially that was a sentiment she felt she had to keep to herself.

“What I was feeling was gratification that I was in a position as a clinician — as a person — to offer this assistance. But it occurred to me that I probably shouldn’t tell anyone,” she writes in the book.

“What would they think? ‘I helped someone to die today and I feel really great about it.’ I might be seen as a psychopath.”

But for Green, the experience was “profound” and a “privilege” to help people in need. She recounts in the book how “the sense of relief was palpable” when she told someone they were eligible for an assisted death.

“Once my patients were no longer fearful of how they might die, they focused intently on living and allowed themselves to more fully embrace the life they had left. MAID, in this way, was less about dying and more about how people wanted to live.”

Six years on, there are still relatively few Canadian doctors and nurse practitioners who assess eligibility or provide assisted deaths — about 1,300, Green estimates.

In part, she thinks that’s because of the initial ambiguity of the new law and confusion over how the term “reasonably foreseeable death” should be interpreted. She admits in the book that fear of interpreting the term too broadly — and potentially facing 14 years in prison if she did — led to agonizing decisions to turn down some desperate patients, about whom she still feels guilty.

The foreseeable death requirement was dropped from the law earlier this year, in response to a Quebec court ruling that struck it down as unconstitutional. Intolerably suffering people who are not near the natural end of their lives are now eligible for assisted deaths, although they face more stringent eligibility rules than those who are near death.

But Green said there’s been no rush of Canadians clamouring to take advantage of the expanded access. Moreover, she said MAID providers have been “very, very cautious” about applying the expanded eligibility criteria, with some refusing to provide the procedure for anyone who is not near death because the eligibility rules are “too complex and they can’t commit the time to it,” particularly during a pandemic.

It’s about to get more complicated too. Among the amendments to the law passed last March was one that will lift the ban on assisted deaths for people suffering solely from mental illnesses in 2023. That will likely require a whole new set of safeguards and eligibility rules for that group of patients.

And a joint parliamentary committee must still grapple with whether to expand access to include mature minors and whether to allow advance requests for assisted dying from people who fear losing mental capacity due to dementia or other competence-eroding conditions.

The latter is popular among Canadians but is particularly complicated, in Green’s view. In the book, she notes that people often say they’d like to be able to spell out in advance the conditions under which they would want an assisted death — for instance, when they no longer recognize family members.

But she asks, would the condition be met the first time a patient fails to recognize a family member? “The second time? When it’s consistent? Over how long a time period?”

She also questioned: Who decides when the condition has been met? And what if that patient seems to be living comfortably in a specialized care facility, getting enjoyment out of small things even if they are no longer the person they once were?

“Who’s suffering should we take into account? The person who was or the person who now is? It’s simply not so simple.”

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After death – what?

Most modern funeral practices don’t do much good for the planet. Manuela Callari takes a look at what happens, scientifically speaking, if nature is allowed to take its course after we die, and emerging options that soften our carbon footprint after our exit.

By MANUELA CALLARI

Overlooking the coastal sandstone cliffs south of Sydney’s CBD, gravestones in Waverley Cemetery stand like sentinels, aligned like a military parade. A Yulan magnolia grows out of the grave of a post World War II Italian migrant, at rest since 7 May 1977. It’s as if it is drawing its sustenance from the deceased.

Life depends on death – a circle that has been going on forever. Saplings grow out of rotting trees, and marine carcasses provide a bounty of nutrients for deep water organisms.

When creatures die, they decompose and become the nutrients that other life forms need to flourish. But most humans end up embalmed and buried, or cremated. Are the rituals we have created messing with this cycle of life?

Some think so. “Green death” trends have emerged in the funeral industry to respond to people’s growing concerns around the ecological burden of traditional burial practices.

The science of human decomposition

First, what happens when a body decomposes out in the open? A little warning here is due: this is not a story for the squeamish. When you die, your heart no longer pumps blood through your veins. Gravity draws the blood towards the ground, where it settles. Your lungs stop functioning, which means you’re not breathing in oxygen or expelling carbon dioxide. As carbon dioxide builds up and dissolves in the pooling blood, it begins to form carbonic acid, which dissociates into bicarbonate and hydrogen ions, making the blood acidic.

Simultaneously, enzymes involved in your cells’ metabolism throughout life begin to digest the cells’ membrane, which, combined with a decreased blood pH, causes cells to rupture and spill out their guts. “Everything starts to break apart,” says Dr Maiken Ueland, a researcher at the Centre for Forensic Science and the deputy director of the Australian Facility for Taphonomic Experimental Research (AFTER) at the University of Technology Sydney.

When your cells begin to crumble, they release nutrients that the human microbiome – all the bacteria, fungi and viruses and other microbiota living in you – love to gobble up, literally eating your body from inside out.

Your microbiome helps digest food and keeps your immune system in good shape throughout life. But when you’re dead, your immune system shuts down, and all of a sudden, trillions of microorganisms have free rein.

The microbiota break down carbohydrates, proteins and lipids, producing liquids and volatile organic compounds as byproducts. These build up inside your abdomen and make you look bloated. After three days of decomposition, these compounds release, causing a distinctive “death” smell. Carbon dioxide, methane, and ammonia gasses are among the contributors. Hydrogen sulphide, also present in farts when you’re alive, plays a critical role. But putrescine and cadaverine, which are formed from the breakdown of amino acids, are the biggest culprits.

Ueland, who studies forensic taphonomy – the process of corpse decomposition – says the gasses emitted from the body as it breaks down attract more fungi, bacteria, worms, insects and scavengers to the banquet. A decomposing body creates a remarkably complex ecosystem, which taphonomers call the necrobiome.

Blowflies are generally early comers. They start to lay eggs from which maggots hatch within 24 hours. One blowfly can lay about 250 eggs, so if a few hundred blowflies lay eggs, there are soon tens of thousands of hungry maggots crawling on your body, ready to contribute to the decomposition process. Larvae consume the soft tissue first, says Ueland. Then the skin falls apart, and all that is left is your skeleton, which will continue to break down for decades.

As the feast goes on, more nutrients are released into the surrounding environment. For every kilogram of dry body mass, a human body naturally decomposing will eventually release 32g of nitrogen, 10g of phosphorus, 4g of potassium, and 1g of magnesium. So an average 70kg live human body, which consists of 50–75% of dry body mass, would release roughly 1,400g of nitrogen, 434g of phosphorus, 174g of potassium and 43g of magnesium after death.

Taphonomers call this puddle of nutrients around a body “the cadaver decomposition island”. Initially, some of the vegetation in this island dies off, possibly because of nitrogen toxicity. But as the nutrients are further digested by bacteria within the island they act as fertilisers, transforming the island into a vegetation oasis.

After death what

Death 1.0: the industrial age

In a typical burial, the body is embalmed and put in a coffin made of oak or elm. The wooden capsule is buried about two metres underground, possibly under a slab of concrete. Formaldehyde is often used as an embalming fluid. It bonds proteins and DNA in the cells together so tightly that the microbiome can’t break it down, preventing tissue from decomposing for decades.

Even if a body isn’t embalmed, the coffin in which it lies hinders the natural decomposition process, and the nutrients released are not easily accessible to the microorganisms and scavengers in the soil.

If you’re not keen on burial, you can always choose to be cremated. Since the 1950s, cremation has become more popular than burial, with about 70% of Australians opting for it. But cremation, too, cuts the circle of life and death short. It transforms a body into mainly three things: ash, water vapour and a lot of carbon dioxide. Not only will cremated bodies not fertilise any vegetation oases, burning them up is far from sustainable.

Aquamation is the fire-free alternative to cremation. All that’s left is a tea-like solution that’s good for plants

According to the Department of the Environment and Energy, a modern cremator uses the equivalent of 40 litres of petrol for an average body. An older crematorium furnace can consume up to twice that amount of fuel.

Cremating a dead body releases about 50kg of carbon dioxide and a bunch of toxins into the atmosphere. And the carbon footprint doesn’t end at the crematorium door.

“What about the 100 people driving to the crematorium, then driving back to Uncle Bob’s house to have a barbecue?” says Kevin Hartley, founder and director of Earth Funeral. “And what about all the catering and all the energy and bits that go into it?”

Hartley estimates that at a typical, small-size cremation and funeral, the event can release up to one tonne of carbon dioxide – the equivalent of driving a petrol car for six months. Fifty trees have to grow for one year to capture just one tonne of carbon dioxide emissions.

Death 2.0: the eco-age

An interest in pared-down, eco-friendly, end-of-life options has grown, ranging from biodegradable pods that turn a body into a tree, to mushroom burial suits that devour dead tissues.

“There’s a whole suite of alternative technologies in this space,” says Dr Hannah Gould, a cultural anthropologist with the DeathTech Research Team at the University of Melbourne. “But alkaline hydrolysis and natural organic reduction are the major alternatives that have legs.”

Alkaline hydrolysis, also known by the catchier name of “aquamation”, is the fire-free alternative to cremation. It produces less than 10% of the carbon emissions of traditional cremation, doesn’t release toxins, and generates nutrient-rich water.

After death what
Give and take: Eco-friendly after death practises that give back are the subject of many start-ups. The Capsula Mundi, above, is an Italian-designed biodegradable casket above which you can plant, and nourish, a young tree. Memory Gardens, such as this one in Le Bono, France, offer the option of depositing ashes under different trees in a headstone-free green space.

The body is placed in a pressure vessel filled with an alkaline water solution of potassium hydroxide or sodium hydroxide or a combination of both, with a pH of 14. The solution is stirred and heated to about 160°C at high pressure to prevent boiling.

In a few hours, the body breaks down into its chemical components. All that’s left is a tea-like solution that is very good for plants, so family can take home the sediment of minerals for scattering.

“The environmental footprint of alkaline hydrolysis is much less than cremation and much, much, less than conventional burial in a graveyard,” says Professor Michael Arnold, a historian and philosopher with the DeathTech Research Team.

According to a report by the Netherlands Organisation for Applied Scientific Research (TNO), the estimated environmental cost for disposal of the dead is about $102 for a burial, $77 for cremation, and $4.15 for alkaline hydrolysis. “It’s a huge factor,” says Arnold.

Aquamation is legal in Australia but not widely available. There are only a handful of companies that offer the service, and, Arnold says, the practice remains little known by most. It was recently in the spotlight after the death of South African archbishop Desmond Tutu, who requested his remains be aquamated. Arnold hopes Tutu’s choice will increase the practice’s popularity.

The other alternative is natural organic reduction, or human composting. The body is placed into a vessel with a mix of soil, wood chips, straw and alfalfa. Microbial activity stimulates decomposition. Within about four weeks, the result is around 760 litres of humus. Family members are welcome to keep some of it; the rest is used as a fertiliser. The world’s first human composting company opened its doors in Seattle, US, at the end of 2020 and has since expanded to four states, but human composting isn’t yet legal in Australia.

The regulatory approval path of a new way to dispose of corpses is tedious. But appealing to the mass market remains the biggest challenge – eco-friendly body disposal is still a niche market.

“People who might want to pick these options tend to be those who are pretty concerned about the environment, who are into sustainability, alternative lifestyle, are a bit hippie,” says Gould. “But there is also a growing cultural desire to return nutrients to the earth.”

Arnold agrees. “A lot of people think that the body is something to be disposed of without much fuss, and cremation is appealing for that reason,” he says. “A smaller group of people think of the body as a resource rather than a waste – a resource that can and should be utilised by other living beings.”

In recent years, natural burial grounds have gained some popularity. Here, the body is buried without embalming in the topsoil, in a softwood or cardboard coffin or a shroud. Usually, there is no gravestone or headstone. Only about 2% of people opt for a natural burial.

Restoration burial grounds

Hartley had worked in funeral services for 15 years when someone asked what his plans were for his body after death. “Being reasonably young, I hadn’t really thought about it,” he says.

It was then that he began to ponder the environmental impact of the furnace he
had operated for so many years, and began to question whether that was indeed what he wanted his final act to be.

Hartley began to contemplate taking natural burial to the next level. “Restoration burial grounds is the term that we favour,” he says.

His not-for-profit organisation plans to convert pieces of distressed land, such as overused farmland on the edges of cities, to burial grounds that offset the cost of burial by “multiple times”.

The bodies will nourish and fertilise the barren land, restoring the native Australian bush. That, in turn, will attract native wildlife and, eventually, the land will be managed like a national park.

Regular natural burial grounds might offset the carbon cost of a burial, but being carbon neutral is no longer enough, Hartley says.

“We put the Earth bank account into deficit,” he says. “We are way overdrawn. We want to put back into the planet.

“Death is part of life. Everything is cyclic. We’re interested in the restoration of the nexus between death and life for people and have a genuine return to the earth.”

It’s a plan that might revolutionise the look of Australian cemeteries – rows of gravestones giving way to Australian native forests buzzing with wildlife.

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What Are Death Doulas?

by Monica Lozano

When people say someone had “a good death,” they usually mean that someone was comfortable and not in pain. But what if you could help their final days include the things they treasure — like their favorite song playing, who is at their bedside, even the scent of a candle in the room — so they feel at peace.

That’s why some people turn to end-of-life doulas. They are among the professionals who can help someone prepare for their death and reflect on their life: their greatest joys and regrets, any fears or worries on their mind, and how they want to be remembered.

It’s work that many people don’t want to think about.

“We live in a death-denying culture,” says Elizabeth Johnson, executive director of the Peaceful Presence Project, a nonprofit end-of-life doula collective in Bend, OR. Doulas can be part of the team that helps prepare people for death by opening up conversations about it, as well as providing comfort and resources. Hospice care teams and other palliative care practitioners also work in these areas.

Doulas and Hospice

Hospice care often involves a team of people, such as a social worker, a chaplain, and a nurse who checks a patient’s vitals, administers medication, and changes bandages. Doulas, on the other hand, have no required medical background and do not perform any clinical or medical tasks. They may read aloud to a patient, clear clutter, or sing with someone.

“Doulas are able to step into those unsupported spaces,” Johnson says. Where a hospice social worker or chaplain may visit once a week, “Doulas have more time and bandwidth. They are available for deep listening during acute windows of need,” says Johnson, who is on the board of the National End-of-Life Doula Alliance (NEDA).

Doulas can assist patients outside of hospice, too. Merilynne Rush, RN, a doula in Ann Arbor, MI, and vice chair of the End-of-life Doula Advisory Council of NHPCO (formerly the National Hospice and Palliative Care Organization), recalls a client who was overwhelmed after taking her husband home from the hospital to die. Rush talked to her about palliative care, a social worker, hospice, and getting a hospital bed. “She didn’t have the first clue about any of that. No one in the hospital tells you,” says Rush, who is also a past president of NEDA.

Likewise, Cynthia Schauffler of central Oregon contacted Peaceful Presence about a friend with terminal cancer. “My friend asked me when she should call hospice and I didn’t have the wherewithal, resources, and contacts to help her.”

Doulas from the group began visiting her friend twice a week. The visits included reiki, art therapy, and conversation with a chaplain. They got her hospice care and talked to her family about what to expect.

No Typical Cases

You may hear end-of-life doulas referred to as a soul midwife, end-of-life coach, death midwife, transition guide, or death doula. Unlike hospice, the cost of a doula is not covered by Medicare.

Private insurers do not reimburse for doulas, either. But some doulas provide volunteer services through a hospice or nonprofit organization.

Doulas may charge an hourly rate, from $45 to $100, or on a sliding scale. Or you may be quoted a flat fee from $500 to $5,000. Costs will vary depending on the number of visits, location, whether the doula is staying overnight, or other service requests.

Similar to a birth doula, an end-of-life doula tailors services to each client. Beyond getting wills and advance directives in order, they encourage the dying to reflect on their life. Are there relationships they want to repair? Something they need to say or do before they are gone? Who do they want to see again before they die?

There is no such thing as a typical case when you’re a doula. “It’s all over the board,” says Rush, a former hospice nurse and midwife, too. It’s not unlike the old tradition of a neighbor, friend, or auntie coming into help, she says.

Doula visits can be daily, weekly, or span several years. They can assist with writing letters, doing laundry, planning a funeral, or creating a legacy. A legacy project might involve captioning photos, scrapbooking, or organizing recipes to pass on to family.

One of Johnson’s patients had an extensive record collection. She helped him write meaningful stories about his life that coincided with each album. She hung up the stories in his room for visitors to read and discuss with him.

Someone to Talk to and Cry With

Sometimes, the family needs practical or emotional support more than the person who’s dying does — especially if that person isn’t conscious or alert.

Joanna Harmon of Finksburg, MD, described her doula as “a formidable advocate” who helped her weather the stress and emotional strain when her dad was dying in 2019. The doula was trained by Gilchrist, a hospice in Maryland that has offered volunteer doulas to their clients since 2010.

“She sat with my dad for as long as 3 hours and held his hand so I could leave the room.” The doula also helped get her mind off “the inevitable” by asking about her childhood with her dad. “She was someone to talk to, to cry to, to let those things off your chest,” Harmon says.

Schauffler says that her friend’s doula dropped everything to be there for her friend’s final hours and kept in touch with her husband afterward. “It made a huge difference,” she says.

Where to Find a Doula

To find an end-of-life doula, inquire at local hospices that may work with doula volunteers. Or start with the state-by-state directory of doulas from the National End-of-life Doula Alliance.

These end-of-life doula training programs can also link you to people who completed their course work:

  • International End of Life Doula Association
  • The International Doulagivers Institute
  • The University of Vermont Larner College of Medicine
  • Lifespan Doula Association

If You Choose a Doula

Ask prospective doulas about their training, experience, and fees, and also about their availability and backup, advises Rush, who also trains doulas as owner of The Dying Year. Plus, see if they offer the services you want. Massage therapy? Meditation? Meal prep?

You may opt to hire an end-of-life doula who has completed training courses and received certification. But there is no license or credential required to practice. “There is no universally recognized local, regional, or federal authority, regulatory or accrediting body that holds liability or provides monitoring for end-of-life-doulas,” states the website of National End-of-Life Doula Alliance. “There are a growing number of organizations offering certification but it is voluntary.”

Get references and also consider whether they have the experience but not formal credentials. “The person may have a lot of experience and no certification so don’t rule that out,” Rush says.

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