Death Doulas Give Time To Those Running Out Of It

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Chris Bruton said his dad got sick in 2017 and just never got better.

“He had fatigue and we didn’t know what it was,” he said.

By January 2018, they had an answer.

“He actually had stage four kidney cancer,” Bruton said. “He was basically given about two to four months to live.”

When Bruton was a kid, his dad travelled a lot, so he didn’t get to know his dad that well. But after Bruton’s mom died, his dad moved from North Carolina to live with Bruton in Colorado. Bruton was in his 40s, his dad was in his 70s.

A year later, his dad got sick. Once they got the diagnosis, a woman Bruton was seeing suggested a death doula.

“And of course, I’d never heard of it. It sounded a little bit, a little bit hocus pocus-y to me,” he said. “I thought, well, I don’t think my dad would be up for anything like that.”

But then his dad started to close himself off and isolate, so Bruton agreed to meet with Cindy Kaufman, an end-of-life doula who works out of Denver. And Bruton introduced her to his dad.

He remembers chatting before Kaufman asked his dad how he was doing – how he was really doing. In an uncomfortable silence, Bruton and his aunt left to give them space.

“And as I walked out, I heard sobbing from my father that I had never heard before,” he said. “This well of stress and fear, anxiety, sadness, it all just came out.”

Kaufman came by one or two times a week, and then drove down for the end. It only took about two months. Bruton said she even helped his dad’s dog through it.

“After my dad had passed, she said, ‘Hey, let’s get Matty up here on the bed and so she can see your dad.’ And I think that even helped the dog find closure and understand what was going on,” he said.

Even though he’d never heard of a death doula before, Bruton is now a convert.

“I had no idea how much work there was to do to help someone who’s going through the dying process until I saw what Cindy did. And yeah, changed our lives,” he said. “Changed our lives and changed my dad’s life at the very end of it.”

Death doulas are also called death midwives or end-of-life doulas, but whatever you call them, their numbers have blossomed in the last decade. There’s a few in every state, but Colorado is a hotspot in the Mountain West. Beyond being a doula, Cindy Kaufman leads the Colorado End-of-Life Collaborative.

“End-of-life doulas fill what we believe is a gap,” she said.

That gap is the space between hospices, which provide necessary medical care, and what she does – help someone with the actual process of dying.

Since the hospice industry started in the ’70s and ’80s, Kaufman said, it’s become more of a business with certain hours and staff caring for multiple clients. While they started as non-profits, the majority of hospices are now for-profit institutions.

“We don’t carry those kinds of case-loads, we work for (ourselves),” she said, comparing death doulas with hospice staff. “We don’t fall under insurance, we’re private pay.”

Kaufman said death doulas can bring ritual back into dying, and make it easier to say goodbye.

They can help plan legacy projects, say late-night prayers, figure out what kind of burial or cremation someone wants. For some, they just sit with people, right up to the end.

And death doulas are incredibly diverse, not only in what they offer but with their backgrounds. There’s no licensing requirement or mandatory training. Kaufman said some people use their own culture to inform how they practice as death doulas, and they don’t want more regulations.

“They want to be honored for the fact that they were trained within their own family and community to do what they do,” she said.

Still, several training centers have cropped up in recent years. Some are in places like Australia and the UK. And there’s one in New Jersey called the International End Of Life Doula Association, or INELDA.

Henry Fersko-Weiss is a death doula who created INELDA six years ago.

He said it’s good to take other cultures into consideration, but the profession needs standardization if they want to be reimbursed by Medicare or Medicaid. He said that could also improve quality of care – and help the fledgling profession evolve and gain trust.

“Anybody could call themself a doula without knowing anything, without having any training,” he said. “And I think that can do a disservice to the development of this field.”

Nancy L. Compton is an INELDA trainer based in Boise, Idaho. She’s also a certified hospice nurse assistant, palliative nurse assistant and death doula.

She’s proud death doulas can work outside normal constraints.

“Not everybody is born nor dies Monday through Friday, 8 to 5,” Compton said.

But she’s also proud of what her intimate knowledge of the dying process does for families.

“That’s where I am different and that’s where I pioneered this, especially in the Boise Valley,” she said.

Compton said a hospice paid her to practice there, and that’s unusual for a death doula. Medicare sanctions death doulas, but won’t reimburse for their care – yet. That would require a lot more standardization.

Deb Rawlings, at least, is fascinated by the diversity in this budding industry.

“It was amazing to find that there were so many differences in what the death doulas say that they do and what they offer,” she said.

Rawlings teaches palliative care at Flinders University in Australia. She’s one of the few people who’ve researched the occupation.

She found that many death doulas are former hospice workers or nurses. Some volunteer, others charge. Some help with a spiritual journey, others help with more physical tasks.

But even though they’re so different, death doulas have generally described their role to Rawlings like this: “We’ve got time. So I’ve got time to come in and sit with you. I might sit with the person who’s dying and let their family go and have a break. I might help and do the washing.”

In other words, they give time to those who are running out of it.

Complete Article HERE!

We all hope for a ‘good death’.

But many aged-care residents are denied proper end-of-life care

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Death is inevitable, and in a civilised society everyone deserves a good one. It would therefore be logical to expect aged-care homes would provide superior end-of-life care. But sadly, palliative care options are often better for those living outside residential aged care than those in it.

More than a quarter of a million older Australians live in residential aged care, but few choose to be there, few consider it their “home”, and most will die there after living there for an average 2.6 years. These are vulnerable older people who have been placed in residential aged care when they can no longer be cared for at home.

The royal commission has made a forceful and sustained criticism of the quality of aged care. Its final report, released this week, and the interim report last year variously described the sector as “cruel”, “uncaring”, “harmful”, “woefully inadequate” and in need of major reform.

Quality end-of-life care, including access to specialist palliative care, is a significant part of the inadequacy highlighted by the report’s damning findings. This ranked alongside dementia, challenging behaviours and mental health as the most crucial issues facing the sector.

Longstanding problem

In truth, we have already known about the palliative care problem for years. In 2017 the Productivity Commission reported that end-of-life care in residential aged care needs to be better resourced and delivered by skilled staff, to match the quality of care available to other Australians.

This inequality and evident discrimination against aged-care residents is all the more disappointing when we consider these residents are among those Australians most likely to find themselves in need of quality end-of-life care.

The royal commission’s final report acknowledges these inadequacies and addresses them in 12 of its 148 recommendations. Among them are recommendations to:

  • enshrine the right of older people to access equitable palliative and end-of-life care
  • include palliative care as one of a range of integrated supports available to residents
  • introduce multidiscpliniary outreach services including palliative care from local hospitals
  • require specific training for all direct care staff in palliative and end-of-life care skills.

What is good palliative care?

Palliative care is provided to someone with an active, progressive, advanced disease, who has little or no prospect of cure and who is expected to die. Its primary goal is to optimise the quality of life for that person and their family.

End-of-life care is provided by palliative care services in the final few weeks of life, in which a patient with a life-limiting illness is rapidly approaching death. This also extends to bereavement care for family and loved ones.

Unlike in other sectors of Australian society, where palliative care services are growing in line with overall population ageing, palliative care services in residential aged care have been declining.

Funding restrictions in Australian aged-care homes means palliative care is typically only recommended to residents during the final few weeks or even days of their life.

Some 70% of Australians say they would prefer to die at home, surrounded by loved ones, with symptoms managed and comfort the only goal. So if residential aged care is truly a resident’s home, then extensive palliative and end-of-life care should be available, and not limited just to the very end.

Fortunately, the royal commission has heard the clarion call for attention to ensuring older Australians have as good a death as possible, as shown by the fact that a full dozen of the recommendations reflect the need for quality end-of-life care.

Moreover, the very first recommendation — which calls for a new Aged Care Act — will hopefully spur the drafting of legislation that endorses high-quality palliative care rather than maintaining the taboo around explicitly mentioning death.

Let’s talk about death

Of course, without a clear understanding of how close death is, and open conversation, planning for the final months of life cannot even begin. So providing good-quality care also means we need to get better at calculating prognosis and learn better ways to convey this information in a way that leads to being able to make a plan for comfort and support, both for the individual and their loved ones.

Advanced care planning makes a significant difference in the quality of end-of-life care by understanding and supporting individual choices through open conversation. This gives the individual the care they want, and lessens the emotional toll on family. It is simply the case that failing to plan is planning to fail.

We need to break down the discomfort around telling people they’re dying. The unpredictability of disease progression, particularly in conditions that involve frailty or dementia, makes it hard for health professionals to determine when exactly palliative care will be needed and how to talk about it with different cultural groups.

These conversations need to be held through the aged-care sector to overcome policy and regulation issues, funding shortfalls and workforce knowledge and expertise.

We need a broader vision for how we care for vulnerable Australians coming to the end of a long life. It is not just an issue for health professionals and residential care providers, but for the whole of society. Hopefully the royal commission’s recommendations will breathe life into end-of-life care into aged care in Australia.

Complete Article HERE!

Professor emeritus has last words on death and dying

Professor emeritus Ronald Bayne was one of Canada’s first geriatricians and a lifelong advocate for better care for older adults. Dr. Bayne, shown here receiving his honorary doctorate at McMaster in 2006, died on Friday after deciding to take advantage of the opportunity for medical assistance in dying.

Dr. Ronald Bayne was one of Canada’s first geriatricians and spent much of his long career as a passionate advocate for better care for the elderly, working to solve the problems in long-term care homes.

At 98, and racked with chronic pain, he turned his advocacy to another cause critical to the elderly: planning the end of life.

Bayne, who was a professor emeritus of McMaster University, died on Friday after deciding to take advantage of the opportunity for medical assistance in dying.

Before dying, he shared his story with the media and produced a compelling video urging seniors and their families to take control of the end of their lives.

The 12-minute video is a powerful demonstration of Bayne’s passion for the cause to the very end, part reflection on death and dying, part rallying cry for better health care and autonomy for the elderly.

“I’m 98 so I am near the end of my life. Fortunately, my mind is still clear though my body is exhausted,” he says in the video.

“I want the vast majority of the population, and seniors in particular, to realize that they have far more control at the end than they realize they do. Every Canadian has the right to control their own bodies. There’s no question about it. You are legally entitled, and you must insist that your voice is heard.”

In the video, Bayne is eloquent and passionate, referring to Dr. William Osler and Shakespeare and his long experience in health care.

“I had a long career as a physician and over these many years I’ve been struck by the fact that increasingly people are fearing death and dying. I think it’s become almost universal,” he says. “People themselves have become fearful about what may happen at the end of their lives, and if they’re going to be suffering great pain, if they’ll get relief.

“I want people to get over this fear of the unknown and make it known. Discuss it openly, realizing that death is inevitable.”

He says everyone has the right to end their life if it has become unbearable. “Some people say that’s promoting death. Of course it’s not promoting death. Death is inevitable, you don’t need to promote it. No, this is to reduce suffering and pain. And if you as a person are not likely to pass on soon, you should be able to control your own end of life.”

Trained at McGill University, Bayne was a professor of medicine at McMaster’s Michael G. DeGroote School of Medicine from 1970 until he retired as a professor emeritus in 1989.

He received an honorary degree from McMaster in 2006 for his advocacy and work raising awareness of the need for better care of the elderly and chronically ill people, and his initiation of programs that work to prevent the warehousing of often marginalized populations.

It is clear from the video that his passion for this work continued through the very end of his life.

“We must have our voices heard. That’s what I’m urging people to do in later life,” he says in the video. “Take that responsibility. Let us ensure that the health-care system for long-term care is properly organized and managed and supervised.

“We know, from recent experience with COVID, that these long-term institutions were very poorly managed, and in a way, the general public is justified in their fear of what will happen to seniors in those places,” Bayne says, suggesting the seniors need to realize they have more control than they think they do.

“We as seniors should be working with our families to discuss the end and how we wish it to occur and building up their [family’s] feeling of confidence that it will be peaceful for us and bearable for them. So instead of focusing on the end, build up great memories, happy memories that the family will treasure afterwards.”

Bayne had a close relationship with the university over the years, and 13 of his family members have McMaster degrees, including the honorary degree awarded his son-in-law, Michael Hayes, in 2017.

Bayne and his wife Barbara have made several donations to the university, establishing the Ronald Bayne Gerontology Award for a graduate student conducting aging research; and the Barbara and Ronald Bayne Award to provide support for senior students in the Department of Health, Aging and Society who are engaged in practical learning experience as part of their undergraduate studies.

“Dr. Bayne has been a wonderful teacher for all of us from his days at McMaster helping create geriatrics as its own discipline in Canada, to just before his death,” said Paul O’Byrne, dean and vice-president of the Faculty of Health Sciences. “I am very grateful for all of his lifelong contributions to improving the health of Canadians.”

Parminder Raina, scientific director of the McMaster Institute for Research on Aging, added: “One of Canada’s first geriatricians and a physician at Mac, Dr. Bayne founded the Hamilton-Wentworth Group on Aging, the Gerontology Research Council of Ontario (GRCO) and led the Canadian Association on Gerontology in the ‘80s. His tireless work in the area of geriatrics and gerontology drove the infusion of a lot of provincial funding into research and training in aging at a crucial time.

“His powerful messages around death and dying are inspiring and important.”

Complete Article HERE!

Pandemic grief could become its own health crisis

By Hope Edelman

As the nation mourns more than 500,000 lives lost a year into the coronavirus pandemic, another pandemic wave is building — of grief. It poses a potential public health crisis of its own.

For the past century, Americans’ response to grief has been to minimize its impact and suppress the emotional pain. We treat grieving as an individual affair, with mourners responsible for “getting over” their losses, mostly in private. Social isolation during the pandemic has made grieving even more solitary.

But grief wasn’t always treated this way. For centuries, communities came together to mourn the passing of an individual as a loss to the polity. Victorian mourning practices were extravagant social affairs involving rituals that the bereaved and fellow citizens followed for months, sometimes years, after a death.

Then came the one-two punch of World War I and the 1918 influenza pandemic. With so many deaths occurring so fast, mourning rituals became prohibitively expensive and social mourning was effectively impossible to maintain. Like today, large public gatherings were prohibited and quarantines enforced. Funerals shrank in size, mourning periods contracted and families were left to grieve in isolation. By the 1920s, grief in America had largely gone underground.

A century later, grief is again a widespread issue. With each covid-19 death affecting an estimated nine survivors, more than 4.5 million Americans are grieving loved ones lost to the virus. Beyond deaths to other causes, there were additional U.S. fatalities last year: gatherings with family and friends, classroom learning, millions of jobs that won’t return. Collectively, we lost a way of life in 2020.

Yet there has been no sustained outpouring of public support for mourners, as happened after the devastation of 9/11. Instead of a broad acknowledgment of mass distress, our nation has been mute with grief. Pandemic skepticism has also disparaged the losses some have experienced.

This is a precarious state for a nation. Grief is cyclical, especially around anniversary dates. Even under optimal conditions, many mourners experience a dip in functioning at the one-year mark. We should expect this to happen, starting this month, with the one-year anniversaries of the first wave of pandemic deaths and lockdowns. One year isn’t far on the long arc of adjustment, but it’s well beyond the point that most people expect visible evidence of mourning to last. Collectively failing to grant each other permission to express distress beyond the first weeks after a loss can have profound health consequences.

In children and teens, unaddressed grief can manifest as trouble sleeping, depression, anxiety, behavior issues and lower self-esteem, a 2015 study found. Research from 2018 found it leads to aggression and academic or work struggles. In adults, unaddressed grief can manifest as depression, anger, anxiety, and substance use and abuse. Medical research has linked unaddressed and suppressed emotions to a host of physical ailments later in life, including hypertension and autoimmune disorders.

President Biden’s remarks on Monday, acknowledging not just the lives lost but also the loved ones mourning, are a good start. In addition to promoting professional help, there are steps that we citizens can take to address this siloed bereavement and help head off a looming public health crisis.

We can start by viewing grief support as part of our essential social contract. Those who are grieving need acknowledgment and understanding from family and friends. This starts with taking their losses seriously and accepting their reactions. Listening to their stories of a loved one’s life and death with compassion, instead of judgment, is key; so is confirming the coronavirus’s threat to human health if their loved one died of covid.

As in 1918, public health restrictions have affected the rituals people typically rely on for comfort and support. Funerals have again become stripped-down facsimiles, with some long-standing ethnic and religious traditions abbreviated or abandoned. Some families have postponed memorial services — and their own expressions of grief — in favor of planning to hold shows of respect when groups can again gather safely.

Today’s mourners should be helped to hold on to whatever rituals remain, even if that means attending a memorial service two years after a death. Rituals allow people to draw on the comforts of the past while projecting a loved one’s influence forward.

New rituals can be developed, too. Even repetitive, everyday acts such as drinking morning coffee from a mother’s favorite mug or touching a loved one’s framed photo when passing by can bring comfort if performed with intention. Folding the memory or values of a lost loved one into new traditions is a way to continue honoring the lives they lived.

Finally, participating in public acknowledgements of those who have died provides a larger meaning and context for the half-million deaths that otherwise risk being minimized or, worse, forgotten.

Everyone eventually loses someone dear, some of us sooner rather than later. Mourners’ unexpressed distress can manifest in them physically and in their interactions with others — in how they work, raise children and create policy. Validating and supporting the bereaved at the time of loss is not just the compassionate thing to do — it’s a necessary investment in the collective good.

Complete Article HERE!

How the world sends off its dead

And what that says about us

Tower of Silence in Yazd, Iran.

by

A great way to get under the skin of a living culture, especially a little-known one, is to learn about their thoughts, beliefs and rituals around death. Conversations about reincarnation, reunions with departed spirits, and the manner in which they send-off their loved ones might surprise you and lead to fascinating discoveries. While most rituals are rooted in ancient philosophies, modern science and technology is helping to develop sustainable options that can turn our lifeless barks into useful nuggets.

Whisperings of death are all around us. Statements of grief and love take form in flower bouquets and roadside memorials where a person might have lost their life in an instance. The names of loved ones are inscribed on park benches. They live on in academic scholarships, wings of hospitals, places of worship and most of all, in our memories. Their photographs are hung in our homes, shops and offices. While these may be familiar to us, in far-flung lands, other practices are thriving.

Wandering the lanes of the Old Quarter in Hanoi, Vietnam, my friend and I came upon Hang Ma street with shops selling things made from paper. The stalls were festooned with rather unique paper replicas of houses, cars, motorcycles, washing machines, refrigerators, clothes, cell-phones, shoes, wallets, eye-glasses and wads of cash. These, it turns out, are bought by relatives of the deceased and burned on Wandering Soul’s Day. People believe that on this day the gates to the afterlife are opened for spirits to come back to the earth, and their ancestors can accept and enjoy the offerings. From their vantage point, death is by no means a final departure and the next world bears a strong resemblance to the present one.

Gifts for the departed.

Driving through the countryside in Kyrgyzstan, the captivatingly beautiful hills reared up all around me and my guide Kuban. We stopped to explore curious clusters that looked like giant birdcages. Kuban explained that these airy domes housed tombs. Influenced by Islam and nomadic traditions, the Kyrgyz have uniquely adapted their grave coverings to look like yurts, with views of the open skies that are close to their hearts. While the Soviet occupation saw many mosques razed to the ground, the graves were left alone, and they continue to tell the story of the people held deep within their wombs.

High up in the folds of the Himalayas, several Tibetan Vajrayana Buddhists still opt for sky burials. In accordance with their beliefs, after a person’s passing, while the spirit is in transition, the body is a mere empty vessel to be given back to nature. In an extreme act of compassion, the naked body, often chopped into pieces, is left out in the open as food for scavenging vultures and predators. When full, they spare small creatures such as the mice, marmots, weasels and hares.

The respected priests, the Lamas, encourage people to confront death openly, and to feel the impermanence of life. Many a ritual object in the monasteries is made from human bones. The harsh, treeless landscape has also had a role to play in eliciting this practice, with the lack of wood for pyres or coffins and the earth being too hard to dig graves.

A sky burial site.

In Ladakh and the villages of the hinterland, if a baby dies before its teeth are cut, the dbon-po (astrologer) might recommend putting it in a small coffin and walling it up within the house to retain its g-yang, or good fortune and hoping its soul will re-enter the mother’s womb.

According to the ancient Zoroastrian faith, dead bodies must not defile the earth, water or air. Traditionally, they are cleansed in accordance with rituals and left in the ‘towers of silence’ to be consumed by vultures. The practice continues in a handful of places such as Yazd, Iran. In Mumbai and Hyderabad, the lack of vultures (many died from eating cow carcasses that contained the drug diclofenac) has made the community pivot to solar concentrators, where intense sunlight desiccates corpses as it passes through a fresnel lens.

In Longyearbyen, Svalbard, the northernmost town on the planet, it has been illegal to die since 1950. As the temperatures dip down to –43°C, there is constant permafrost in the ground. The archipelago belongs to Norwegians, who are mainly Christians, but they can’t bury their dead here, as the permafrost will preserve the bodies forever. Anyone expecting to die must fly to the mainland.

Over time, several polar explorers, whalers and scientists have lost their lives in Antarctica, where they might remain hidden forever, or make a macabre appearance as an iceberg calves and melts in the ocean. Similarly, as Everest melts, bodies of trekkers and Sherpas keep emerging from the ice.

On a trek through Mantadia Rainforest in Madagascar, as we looked out for creatures such as lemurs, indris and sifakas, our guide Eric Michel chatted with us about life on the island, describing the famadihana or ‘turning of the bones’ tradition. “We (Malagasy) believe that our dead ancestors influence our fortunes and fertility from the afterlife. Every 5-7 years, when enough money has been saved, our family plans a famadihana where the entire village comes together. Alcohol is passed around freely, food is served, and the festivities start. We make an opening in the family tomb to let out the bad smell, then begin pulling out one body after another. They’re re-wrapped in fresh fabric, even the crumbled ones. The band starts to play, people begin to dance, sing, and commune with the dead, rocking them, talking to them, filling them in on the latest news, introducing them to new family members, perhaps showing them a new bridge or house, and asking for specific blessings before placing them back. People are even more powerful once they die, so we must respect them.”

A famadihana in session.

Also believing in an afterlife, the San Bushmen of the Kalahari Desert add bows and arrows, pots and fabrics to the graves of their dead, whose bodies are anointed in ochre and fat and buried in foetal position, facing east. The spot is topped with a stone cairn to keep it from being dug up by any animals.

Death rites are not always achingly solemn. In Barbados, a driver commemorates his grandmother, who passed four years ago, by hanging her smiling picture on a badge on his rear-view mirror. In Ethiopia’s remote Omo Valley, the sudden loud gunshots turned out to be part of a funeral procession with a touch of gangsta-verve. Guns and bullets are a luxury, swapped with precious cows and goats, and so firing them is a way of lavishing honour on the departed. In Spanta, Romania, people believe that death leads to a better life, and so it must be celebrated. The notion is reflected in the Cimitriul Vesel, the ‘merry cemetery, dense with colourful paintings on tombs illustrating the dead person’s life that are often topped with light-hearted epitaphs.

Our death is our swansong, and the manner in which we go also reflects who we are. The religious rites that are handed down to us over generations have a consolatory feel, but many of these were established millennia ago, when there were far fewer humans, rivers were pure and thick forests covered our planet. These traditions now need to be revisited. Our awareness of environmental issues has been heightened. Let’s look outside our windows today and think afresh. By 2050, there will be 10 billion humans. Does cutting down trees for pyres and coffins, putting masses of carbon in the air and choking our waters with ashes sound right?

Shedding our reticence and donating our bodies to science and allowing our organs as hearts, livers, eyes to be used by others upon our passing is modern-day compassion. Preserving, not depleting our planet is the new mantra. Fresh ideas abound. The US-based company Eternal Reefs compresses human remains into a sphere that is attached to a reef in the ocean providing habitat for sea life. Resomation is a technique where alkaline hydrolysis breaks down and liquifies the body with no carbon emission. Capsula Mundi, an Italian company, makes organic pods into which bodies are placed and put in the earth. Seeds or saplings are planted just above, and they become nourishment for the growing tree. A simple version of this practice requires a spot, a sack and a sapling. If we can allocate land and turn our bodies into forests, it could be our most considerate legacy for future generations. A human and a tree growing into each other. What better consolation.

Complete Article HERE!

I chased the American dream.

It brought me back to my father’s deathbed in China.

Mangkuk Wong, the author’s father, in 1987.

By Xiaoyan Huang

I thought for sure he was dead: Whenever I cannot reach my father, now 86, I am convinced the day has come and that he has died alone in his apartment. It was nearly midnight in Shenzhen, China. I tried calling him on WeChat, on his cell, on his landline. No answer. I called his friend to check on him. He answered the doorbell that night and seemed okay, she reported. The picture she sent, though he was smiling, did not reassure me. I’m a cardiologist in Portland, Ore. One look at my father’s ashen color told me his end was near. A week later, he was hospitalized and diagnosed with metastatic colon cancer.

This event had a cruel symmetry, echoing what happened in 2003 when my mother suffered a fall and massive brain bleed. Same apartment. Same hospital. Even the pandemics, then and now, involve related viruses: SARS and the novel coronavirus. My mother had gone into a coma by the time I reached her bedside. After months of hospitalization, she was discharged home, comatose. My father kept her alive in a persistent vegetative state for five more years, with hired help and tube feeds, nearly bankrupting himself. Throughout that time and long after, I was overtaken by guilt. Thirty-four years ago, my parents supported their only child to pursue her education in the United States. It pained me to realize that as a physician, I was unable to save my mother’s life, and as a U.S. citizen, I never gave her the good American life she had asked of me.

This time, I was determined to do right by my father. Though I managed to leverage my connections as an established American cardiologist to get him VIP treatment in his local hospital, he adamantly declined further diagnostic testing or care. My father, a retired university professor, is fiercely independent, a loner. He told me he had lived a long, good life and wanted to die on his own terms. When I gently suggested getting a colonoscopy, tissue biopsy and perhaps advanced cancer therapy, he got mad: “I am fine, I can walk to the crematorium myself!”

Palliative and hospice care are not widely supported in China. When loved ones fall ill, spouses and children often show over-the-top devotion, fearing judgment by other family members and by society at large. In cases of terminal illness, the patients themselves almost never participate in discussions about the severity of the condition (a situation depicted in the 2019 film “The Farewell”). Family members are expected to pursue more aggressive treatment, even if medically futile, espousing blind optimism. The higher the price tag, the better the demonstration of filial piety. Dying at home is generally avoided because of superstition. In China, my father faced intimidating cultural stigma against his wish to stop treatment and die peacefully at home.

I wanted to support him, but it would mean figuring out his end-of-life care on my own. After consulting an oncologist friend, I packed my suitcase full of over-the-counter comfort care medicines. I also had to make arrangements to put my life on indefinite hold — applying for family medical leave, rescheduling appointments, asking colleagues to cover my patients and administrative duties, saying goodbye to my husband and children with no set return date.

Decades ago, I was fortunate enough to attend college in America on a full scholarship. Now it would take every inch of my immigrant success — leaning on all my resources and institutional affiliations — to take the return trip on which I would probably lose my remaining parent and sever my last tie with China. Travel during the pandemic is dauntingly difficult: I needed a special family emergency visa, two negative coronavirus tests within 48 hours of my flight and a time-stamped health clearance bar code from the Chinese Consulate. There were only a handful of flights between the countries each day; it was impossible to buy tickets online. With the help of a childhood friend’s wife, who runs a travel agency in China, I got one. The plane was packed. Everyone wore N95 masks, some with double masks, others with goggles, face shields, hazmat suits and gloves. The flight attendants wore disposable surgical gowns. People hardly ate or drank during the 15-hour flight, trying to minimize bathroom trips.

For two weeks, I was quarantined in a hotel room in Xiamen after landing. The first night, on a sleepless high, I made grandiose plans for catching up on emails and work. By day five, I started exercising by putting all 20 hotel-provided bottles of water into a backpack and pacing the room: 14 steps long, six steps wide, over and over. By day seven, each banging of the door by the hotel staff, announcing meals delivered to a chair outside, made me jump — as did the twice-daily temperature check. Finally, after 14 days and 11 negative coronavirus tests, I was released into the world.

When I finally got to my father’s bedside, suitcase in tow, it was almost anticlimactic. For a surreal second, I felt I was rounding on an elderly patient, as I do every day in my hospital. Reunion in Chinese style, even in such weighted circumstances, is restrained. No matter how many times I had cried in private, there would be no embrace, not even a handshake, no tears in front of him. I instinctively checked on key physical exam findings: Was his neck vein elevated, and legs swollen, suggesting congestive heart failure? I stopped myself just short of probing his abdomen. My hand went, instead, to tuck him into his comforter. At this moment and going forward, I wanted to be only his daughter.

A few days later, I brought my father home. Together with a friend of his, I took care of him: shopping for and cooking his favorite meals; helping him shower and dress; dispensing his few remaining pills. Back in his own environment, my father instantly began feeling better, eating more. We still don’t use the word “cancer” or talk openly about his prognosis, but this feels like neither denial nor forced optimism. Instead, we focus on the concrete tasks at hand. When he has energy, I sit by his bed listening to him talk about his life, about history, philosophy and technology. I tell him about his grandsons and their girlfriends, my work and my life.

I began this journey initially stricken by grief, and by fear of reliving the guilt my mother’s death had induced. But I came to appreciate an unexpected symmetry: Years ago, my parents sacrificed to set me free and allow me to pursue a new life in America. In returning to China, I sacrificed to set my father free and help him have a good death. The first choice is relatively common and often celebrated; the latter is unconventional, even frowned upon — seen as almost unnatural in a culture that prioritizes extending life. But the limbo of quarantine, and all the hurdles I had to surmount en route, brought me to a realization: how important it is, for the living and the dying, to share a moment of peace. In that moment, love is no longer measured by the quantity of pills, the number of CT scans or the extent of heroic medical interventions, but by time spent together.

Complete Article HERE!

Never say die

By Kristi Nichols

In March, at the beginning of the COVID-19 pandemic, I emailed my oldest son a list of my financial details, a copy of my will, and my advanced medical directive. I thought it was the prudent thing to do in case I contracted the virus and died. Almost instantly, I received his reply: “Is everything alright, Mom?” I had not expected this response and thought it was a good time to have a conversation about death.

As my children were growing up, I made sure to keep the subject of sex in the conversation. I knew that for my children, having sex was inevitable, and there were important discussions to have before it was too late. I wasn’t worried that talking about sex would cause them to have sex; I was more worried that not talking about it might make their lives more difficult. Sometimes it was uncomfortable, but the more we talked, the more approachable the subject became. It’s the same with death. Learning to talk frankly about death and dying takes the burden off everyone. The thought of me, my family members, friends, or anyone dying is uncomfortable, but we need to talk about it.

As the COVID pandemic death toll continues to rise, more people are contemplating their own death, the death of loved ones, and dying in general. Never has there been such a need to talk about death and dying. We have become a society in which talk about death is taboo. We are born, we live, and then we die. We don’t speak openly about this natural series of events; rather we allude to it. The subject has become a source of discomfort. We avoid talking about it directly, just like sex. For some reason, we no longer die. We “pass away.” Why can’t we simply die?

Birth and death used to be a family, community, and religious event. Death was not hidden in a hospital or “care” facility. Discussions about dying and death were not just between a few family members and a medical professional. People were directly and personally involved in caring for dying relatives. Conversations were necessary to plan futures. Death was considered a natural thing and not a forbidden subject. The word “hospice” derives from the Latin word “hospitum,” meaning hospitality or place of rest and protection for the ill and weary. Essentially, going home.

Death as a taboo is taking its toll. When a dying person has not been able to talk about their death, it becomes an unnecessary source of anxiety and depression. These conversations need to be about practical concerns as well as fear, pain, and loss. When final wishes have never been discussed with family members, they are hard-pressed to make decisions at the end of their loved one’s life. Creating living wills and advanced medical directives is a good way to get the conversation started. Once the subject is broached, it may create more opportunities to express emotions and answer questions.

The psychiatrist Irvin Yalom describes four ultimate concerns: death, isolation, loss of freedom, and meaninglessness. These are the most important concerns of the living, and even more concerning for someone approaching the end of life. Why not encourage conversations regarding these deep subjects. What does it mean to those aging or experiencing a fatal illness when the subject of death is taboo? Should they be embarrassed to acknowledge their own mortality? Should they be kept silent about what concerns them most? How can there be dignity and grace in dying when we can’t talk about death?

Our society’s obsession with perfection renders many people unwilling or incapable of dealing with the painful realities of life, especially death. To embrace the human experience means embracing the full spectrum of life’s events, including death. Dealing with mortality can be overwhelming, but approaching death doesn’t have to be arduous. We shouldn’t have to worry about upsetting or protecting others when we need to talk about important things.

I believe the way forward is for us to go back to acknowledging death as what naturally happens at the end of life. We need to revive our conversations about death. It will take courage. It is difficult to face our own mortality and that of those we love. It is always sad and often frightening. Conversations about death remind us that one day, those we care about may no longer be around and maybe, we will die before them. Let’s remember to enjoy and appreciate them now and cherish every moment we spend together! Now is also the time to plan a good death.

If there is one thing I know as a psychotherapist, it’s that talking about our fears eases them. It allows us to be more honest, candid, and at peace. By talking about difficult subjects such as death, you will likely learn that you are not alone and that someone is waiting to have that conversation with you.

Complete Article HERE!