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!

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!

Terminally ill people should be offered choice on assisted dying, says doctors’ group

Clinicians tell committee procedure can be introduced in ‘safe and fair manner’

By Sorcha Pollak, Patsy McGarry

Irish society has a responsibility to offer the choice of medically assisted dying to those suffering with a terminal incurable illness, a network of 100 doctors has said.

In its submission to the Oireachtas justice committee which is considering Dying with Dignity Bill, the Irish Doctors supporting Medical Assistance in Dying (IDsMAiD) group writes that medically assisted dying can be introduced in a “safe and fair manner”. It argues that in cases of terminal illness, “patients deserve to have their choice respected”.

The Bill tabled by People Before Profit TD Gino Kenny, which seeks to legalise assisted dying, passed to committee stage last October after a vote in the Dáil.

Members of the Irish Palliative Medicine Consultants’ Association (IPMCA) have criticised the wording of the bill saying its definition of what constitutes a terminal illness is too broad.

IPMCA chair Dr Feargal Twomey said “the bill as it stands was very open to significant misuse and abuse”.

However, the IDsMAiD submission, signed by 100 doctors across Ireland, states the bill’s criteria for qualifying for assisted dying is appropriately “conservative and restrictive” and that the safeguards proposed are “conservative, balanced and fair”.

Comprehensive regulation, monitoring and reporting of assisted dying must take place if the Bill passes to ensure accountability, transparency and to foster trust in the public, says the group.

However, it argues that the “hypothetical fears” that such legislation would harm Irish society are “insufficient reason to condemn people with terminal illness to unnecessary suffering”.

While palliative care can control and alleviate the symptoms of many patients, it “cannot eliminate all pain and suffering for all patients”, states the submission. “MaiD should be seen as complementing palliative care rather than any attempt to diminish it,” it states.

The group supports the bill’s provisions which state that assisted dying would only apply to competent adults, residents in Ireland and people with a terminal illness that is “progressive and incurable”.

It notes that a person should not qualify for assisted dying on the basis of a mental illness alone and further research is required before this is considered. Legislators should follow Canada and Victoria in Australia by excluding mental illness as qualifying as a terminal illness to “eliminate any doubt or confusion on this issue”, it says.

Access to assisted dying for patients with advanced dementia remains an “evolving issue due to the need for advanced consent”, it adds.

Dr Brendan O’Shea, a Kildare GP who helped draft the submission, says assisted dying will never be relevant to most people who die in Ireland but that for a small number, it is a “vitally important” option. Dr O’Shea, assistant adjuvant professor in public health and primary care at Trinity College Dublin, said the Bill was currently “short on detail” but that he believes all missing elements would be drafted in as the legislation passes through the Oireachtas.

“We feel most strongly that details around regulation need to be discussed,” he said, adding that medical practitioners, scientific experts and the public should be consulted during the process.

Ireland should be guided by evidence from other countries who have had similar legislation in place for years, said Dr O’Shea. The Canadian model is “well-funded, well regulated and conservative in its approach” while the Dutch approach should also be carefully examined, he said.

Dr Brian Kennedy, who was also involved in the submission, says his views were shaped by his time working as a palliative care doctor. “For the vast majority it is enough and most people in most circumstances can reframe to coping with live with their illness. But there are circumstances the patient, family and healthcare workers have to deal with which are simply too terrible for all concerned.”

Dr Kennedy believes offering the choice of assisted dying to terminally ill patients would help with Irish people’s “death anxiety” and is about putting the patient “front and centre”.

In other submissions to the committee, both the Catholic Church and the Presbyterian Church in Ireland have come out strongly against measures in the Bill.

In its submission, the Catholic bishops said the Bill failed “to recognise the reality that many patients who request assisted suicide are depressed and “to require care givers to provide adequate palliative care for the terminally ill person.”

This meant “someone might decide to end his or her own life without ever having experienced what palliative care has to offer and, thus, making this decision without being fully aware of the other options available to them,” they said.

They found it “unsatisfactory” that the Bill “gives more weight to the irreversibility of the condition than to treatments which, even temporarily, relieve the symptoms. This leads to an unacceptably loose understanding of terminal illness.”

In their submission, the Presbyterian Church said the Bill would “leave vulnerable members of our society open to abuse, duress or the weight of a perceived expectation that they will relieve others of the burden of caring for them.”

Former moderator of the church Rev Dr Trevor Morrow, who had been minister at Lucan Presbyterian Church in Co Dublin for 31 years, said “our experience as pastors is that the components that contribute to a peaceful and dignified death are social, emotional, financial and spiritual. By focusing so restrictedly on the physical aspects of dying, this legislation fails to take account of these factors which can help to mitigate, or exacerbate, human suffering and distress”.

Complete Article HERE!

Mac study looks to help families discuss end-of-life care during COVID-19

By Maria Iqbal

Long-term-care staff are so swamped with COVID-19 protocols that end-of-life discussions aren’t occurring with residents and families, says a McMaster University professor.

Sharon Kaasalainen, a professor in the school of nursing, says she’s hearing from families that they’re feeling excluded from decisions about their loved one’s care.

“Compassionate care is missing because it’s all around public health protocols,” she said, noting the absence of these conversations is causing “serous concerns.”

Kaasalainen recently met with the Ontario Long Term Care Association and other long-term-care leaders to raise the issue. The point of compassionate care, she says, is to help people become more comfortable talking about death and supporting families through that process.

Kaasalainen’s research involves helping facilitate conversations about end of life in long-term care. She recently received funding to adapt her research for COVID-19, including by developing online tools to support those discussions. The goal is to help residents, families and staff prepare for decisions at the end of a patient’s life.

While COVID-19 poses major staffing challenges, Kaasalainen says palliative care also has to do with education and a home’s priorities.

Her study will pilot online tools at homes in three provinces. Locally, that includes St. Peter’s Residence at Chedoke on the west Mountain, where she expects to roll out the online resources in spring.

The tools in the study include pamphlets on conditions common to long-term-care residents to help both residents and families learn what to expect as a disease progresses.

Pam Holliday participated in an earlier part of Kaasalainen’s research. She says the tools taught her to ask care providers more specific questions about the health of her elderly mother, a resident at Shalom Village in Westdale.

Holliday says palliative care conversations can help even before a person’s death. In her case, her mother got sick multiple times, but bounced back.

“You try to make them better, but you try to make them enjoy what they have,” Holliday said about the approach.

She adds that the resources are particularly helpful during COVID-19, when there are restrictions on visits to long-term care.

“We’re totally reliant on staff communicating any changes with us,” Holliday said. “It’s (about) asking the right questions.”

Kaasalainen says care conversations can also include the type of music a person would like to hear when they’re dying and which loved ones are with them. But avoiding the discussions affects the quality of care during a patient’s final days and how families cope after a death.

“We’re seeing families very distressed, having to make decisions unprepared, and it leads to poor bereavement,” Kaasalainen said. “They have these lingering feelings of guilt and stress.”

In March, Kaasalainen is also planning to launch a national community of practice with the Canadian Hospice Palliative Care Association. It would bring together researchers, care providers and families in long-term care to discuss palliative care.

Her hope is to see families involved in care decisions feeling better prepared.

“The goal really is good death, peaceful death and families feeling guilt-free and prepared for death when it happens.”

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