Why I believe in the concept of a ‘good death’

‘There comes a time, I suggest, at which the end needs to be accepted and embraced – with dignity.’, writes Paul Monk.

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Two recent essays and an opinion piece in this newspaper have expressed grave concern about the wave of euthanasia legislation being passed in Australia. The essays were by medical specialists Haydn Walters and Marion Harris and staff writer Jamie Walker. The opinion piece was by Angela Shanahan. As a survivor of a long battle with cancer, I write to take issue with crucial aspects of their arguments.

I am a Fellow of the Rationalist Society of Australia, which supports sound VAD (voluntary assisted dying) legislation. I am also a member of the steering committee for the cancer school for patient education and empowerment at the Peter MacCallum Cancer Centre. On several grounds, therefore, I am implicated in this debate. My cancer was melanoma, so I ­literally have skin in the game.

Walters and Harris argued that “the pro case is a simplistic appeal for autonomy” and, more pointedly, that “suicide has never been an acceptable solution to any problem, even if it is quick, easy and cheaper than care. Such actions impact all of us.”

Walker wrote with evident concern that, with the passage of these laws in state after state, “we as a society are entering uncharted territory”.

Shanahan wrote fiercely that VAD would send doctors into ­hospitals to kill.

The other lines of argument, conversely, are based on special pleading. Opponents of euthanasia – a word based on the Greek for “good death” – insist that legalisation of it will lead down a slippery slope to involuntary ter­mination of afflicted lives or, at the very least, to unnecessary ­suicides. All the above writers line up on this position.

But such an argument implies that the voluntary nature of euthanasia isn’t the problem. What is feared is involuntary termination or poor judgment on the part of stranded or afflicted people. If so, then it is precisely autonomy that needs to be accentuated. Opponents of euthanasia can’t have it both ways. What is it to be, insistence on autonomy or denial of it?

If, as Jamie Walker put it, we are “entering uncharted territory”, we’d best get busy charting it. There are now many case studies overseas and a rich literature on the subject. The territory is by no means as uncharted as Walker appears to believe. But there is every reason to explore it further and to deepen our collective understanding of what is at stake.

A splendid recent exploration of the matter is Katie Engelhart’s The Inevitable: Dispatches on the Right to Die (Atlantic Books, London, 2021). It is impossible to read her reflections without coming to appreciate both sides of the debate and the irreducible dilemmas and complexities entailed in euthanasia. Her case studies are poignant and often excruciating, but she hasn’t written a polemic, whether for or against euthanasia. She charts the territory.

It is equally clear that the Walters/Harris line of defence is problematic. Rather than asserting that we are not entitled to autonomy in end-of-life choices, they would have done better to argue that we need to educate for and facilitate authentic autonomy in such matters. Quite plainly, that is what opinion polls show a majority of people want, which is why state after state has come around to passing legislation permitting euthanasia under closely defined conditions.

The word euthanasia has been disowned by some, in favour of “voluntary assisted dying” (VAD) or “dying with dignity”. Opponents such as Walters and Harris prefer the expression “physician-assisted suicide/euthanasia”, or PAS/E. There’s a history to this. But, perhaps because of my classical education, I don’t have a problem with the term euthanasia. It seems to me entirely appropriate that we should desire and seek a “good death”, rather than a lingering, incapacitated, painful one. There comes a time when saying “Enough, no more!” is both dignified and appropriate.

The question that ought to exercise us, I submit, is not whether this is desirable, but how to facilitate it, while minimising abuses or ill-considered decisions.

Over the course of more than a decade grappling with recurrent and then metastatic melanoma, I was often given to pondering this subject and it was clear to me that I would want the option of calling it quits under certain circumstances and that, importantly, this seemed a natural right. Walters and Harris assert that suicide is never an appropriate solution. Really? They must know, given their fields of expertise, that cells die based on a programmed process called apoptosis – they reach their use-by date and give up the ghost.

Cancer cells are those that refuse, as it were, to accept the rules of the game. We need to naturalise dying as human apoptosis, instead of prolonging physical life under any and all circumstances by any means possible.

One of my favourite case studies in suicide, as distinct from VAD or PAS/E, is the great Carthaginian general Hannibal, in 182 BCE. He was then the age I am now. He had devoted his life to war with the rising power of Rome. Defeated, he sought other allies, other means, but these, too, had been thwarted and the Romans were coming for him.

Hannibal could have awaited them and suffered capture, humiliation and execution, or he could have tried fleeing and hiding. He had had enough, however. In dignity and pride, he swallowed poison and died. He didn’t require legislated permission or a doctor’s authorisation.

There have been other cases in history. ­Socrates took his hemlock. Was that inappropriate? There comes a time, I suggest, at which the end needs to be accepted and embraced – with dignity.

Why should a lucid and dignified option not be available to us, when we have concluded that “the Romans are coming”, at last, for us? The question, surely, is not whether it should be, but how to make possible authentic autonomy in the face of end-of-life ­dilemmas. If our new legislation seems inadequate for one reason or another, let it be amended. But let’s frame our approach around apoptosis and autonomy, not fear and patient disempowerment.

Complete Article HERE!

The Dancing Skeletons

By John Harvey Negru

One of the more enchanting costumed Tibetan Buddhist dances involves a couple of jovial skeletons (citipati) who perform a jig that is, to me, vaguely reminiscent of Abbot and Costello in a vaudeville routine. Their grins are ear-to-ear, one holds a skull cup full of blood and the other holds a wand comprising a child’s spine and skull. Charming.

There are many images of these two clowns; it’s not a particularly obscure bit of tantric exotica. They’re just part of the entourage. They come on between the multi-octave throat singers and the more elaborately gowned Black Hat re-enactment or Yamantaka dance.

Clearly this is not an image of death that was part of the zeitgeist when and where I grew up as a nice Jewish boy, down the street from Leonard Cohen in Westmount, the English enclave in Montreal, Québec, a Canadian province still in the fading grip of the Catholic Church after the Quiet Revolution.

And yet, as I and my generation have grown older and older, we find ourselves with a ticket to the Greatest Show on Earth: our demise, like it or not. Leonard has already made his own curtain call.

These days, we have a cornucopia of narratives about how our end of life will go. And as you can imagine, each of us is pretty darn committed to finding the one that will bring the greatest peace of mind and no regrets.

As we have learned over the past year and a half, dying is a much more difficult passage than being dead. Tragically, many of us have found ourselves unprepared to deal with the passing of a loved one or recognizing that we ourselves are leaving lots of loose ends for those we love.

Linda Hochstetler. Photo by Kristina Ruddick. Image courtesy of the author
Linda Hochstetler.

The end of life is not something folks like to talk about, but it is our ultimate mystery. On another plane, it is also a tricky logistical path across a gameboard, with pitfalls such as dealing with hospital bureaucracy, filling in forms, searching for hospice care, making advanced care plans, and so much more.

I know several Canadian Buddhists who have served as death doulas. A few months ago, I was approached by a Buddhist social worker from Toronto, Linda Hochstetler, who has specialized in death work for many years in a variety of capacities. She explained that she had written an end-of-life guide and asked if I would be interested in publishing it. The short answer was yes and the book will be out this autumn.

It seemed worth interviewing her because I wanted to learn more about her perspective on the end of life, and to explore some of the themes she raises in her book but which were subsumed to the need to keep it practical for its intended Canadian audience. Here is a portion of our conversation.

Buddhistdoor Global: When we talk about death and dying, reversing the order of things, we make death the focus of our attention at the expense of understanding and working with the process of dying. In the best of all possible worlds, how would you change that?

Linda Hochstetler: I would spend much more time teaching about the dying process. Everyone should know the death process intimately before they graduate high school. The dying process is not really understood or taught anywhere. Not to adults and certainly not to kids. I would love it to be a part of school curricula. It’s too often avoided at all ages. Switching the order within the phrase dying and death allows us to really look at dying up close and to spend much more time and interest here, understanding this before we try to move on to death.

BDG: The pandemic has transformed our awareness of the fragility of life, our interbeing, and our relationships with old and young. In offering spiritual care to frontline healthcare workers, what do you see and how do you respond?

LH: Frontline healthcare workers are called to do their work because it matters to them. They want to be a part of a system that they approve of and where they feel they can make a difference. The pandemic has been challenging because many of the policies in healthcare were not in line with healthcare workers’ priorities. Healthcare workers were asked to work without PPE initially, and there were often staff shortages when staff were sick themselves or just stressed out. These situations were unfortunate because they pitted the workers against families, and even when the healthcare workers wanted to work together with families to provide good care to sick family members, they were unable to do so. We have been hearing that we’re all in the pandemic together, but too often our needs have been competing and we have not been able to work together well. Under these conditions, spiritual support is often considered to be superfluous and the easiest part to cut out. This is unfortunate, because it is our spirituality that is the core of our common humanity.

BDG: What is “a good death” and is this a goal we need to strive toward?

LH: A good death will differ for everyone. It is one that is in line with one’s values. It is also one that is the best in those circumstances from the options available. It is helpful to aim for a good death but not to cling too tightly to the idea, because sometimes things come up that are a surprise. It’s easier to say what is not a good death than what is a good death. What is not a good death is hanging on and slowing down death with the idea that it can be prevented. Attached to this is the idea that resisting death increases interventions at the end. Interventions create activity and distraction from the dying process, and often require professionals and hospital rules to take precedence over the dying process, which belongs to the dying person and their loved ones.

BDG: How is death work different from grief work?

LH: Death work is the honest seeing of the process of dying. It is witnessing the changes in the body, understanding how this affects the mind and ultimately our conversations and interactions with those remaining. Grief work is both the work of the dying person, who is letting go of this lifetime, and the work of the loved ones, who are releasing the dying person, and imaging a life without their loved one even while they are still alive. Very basically, death work has a greater focus on the body, while grief work has a greater focus on the mind and feelings. And both can happen both before and after the final breath.

BDG: The use of self is one of the benchmarks by which neophyte chaplains are evaluated in their CPE training. Yet the role of a spiritual caregiver demands the abandonment of self for the benefit of the patient or client. Since Buddhism negates the idea of a self, is there some special advantage a Buddhist approach can offer here?

LH: The use of self in a therapeutic sense begins with an awareness of self and an awareness of other. Buddhism negates the idea of a self—not in the sense that it doesn’t exist but that it is not inherently different from the other. Awareness training helps to hold this seeming dichotomy together. In this way, a Buddhist chaplain has the experience and training to see the patient or client as themselves and can more easily offer help from this perspective. They can go between their needs and their client’s needs seamlessly without needing to drop either side. Buddhist chaplains are way more comfortable with “both/and” situations.

BDG: When a loved one is dying, it is often the nexus for family conflict that can leave lasting scars. Of course, preventing such conflict is important, but when it has been unavoidable, what is the best way to repair the damage?

LH: Preventing family conflict around the death bed is so much easier than repairing it afterwards, so whenever possible, resources and time should be spent here. Making room for all loved ones to share in the dying process is best, even if that means making a schedule and taking turns in the care. However, when damage has occurred, it is best to find a neutral person—a chaplain or social worker—to speak with all sides individually and invite them to consider the wishes of the dying person. The dying person’s wishes should be of greatest importance, and ideally this priority can guide the overall decision-making.

BDG: How do Western Buddhist views of dying and death differ from those of Asian Buddhists? How are they the same?

LH: Buddhism is always a combined product of the scriptures/teaching and the local culture. As such, it is often hard to know what is influenced by Buddhism and what is influenced by culture. In many ways, there are fewer differences between Western and Asian Buddhists, and more differences between traditional Buddhist interpretations and modern options. For example, 50 years ago if someone was close to dying, they would be doing so at home and tended by family members into a natural death. Today, modern medicine presents many options for extending life and often these extensions are what is considered controversial. These options, which involve feeding and breathing tubes, are offered around the world. Taking someone off of life support, medical assistance in dying, or organ donations are all options that have come up in the last 50 years and were not even imaginable in the Buddhist scriptures or teaching, so much must be extrapolated from the culture on the rightness and wrongness of these choices. I think Western Buddhists and Asian Buddhists have much more in common than is often assumed and would do well to look at their similarities rather than their differences.

BDG: Briefly, what is the difference between palliative and hospice care, from a Buddhist perspective?

LH: There is no difference between palliative care and hospice care from a Buddhist perspective. In actuality, palliative care can involve a greater resistance when it includes death hidden from the community, but this doesn’t have to be so. Hospice care often occurs in locations—home or residential hospice—that allow for fewer rules regarding spiritual practices, but this is not inherently so.

BDG: What is the difference between spiritual care and psycho-spiritual therapy?

LH: Spiritual care emphasizes both the individual and the community aspect of spiritual practice. This might include formal practices such as prayer and chanting, with the support of spiritual leaders or lay chaplains or sangha members. Psycho-spiritual therapy often involves a relationship that works on individual ego work, often throughout one’s life. It includes explorations of where spiritual practices and aspirations fit into an individual’s life. Ideally, therapy is done long before the dying process so as to clear away energy for dying without also having the weight of previous relationships unresolved.

BDG: Is it possible to celebrate dying?

LH: Absolutely. Just like there are many challenges in one’s life, dying is a final one. Celebration comes from training for death and then completing it according to the training. As with many challenges, the focus doesn’t have to be on the exact result, but more in the effort in a particular direction. And the celebration of dying includes the celebration of living. Look at the whole life and see that dying is one more step of the life, and celebrate when it all hangs together consistently and as a whole.

Complete Article HERE!

‘Death Doulas’ Provide Aid at the End of Life

End-of-life doulas support people emotionally, physically, spiritually and practically: sitting vigil, giving hand massages, making snacks.

By Abby Ellin

As parents of a child with a progressive and potentially fatal illness, Maryanne and Nick O’Hara lived on hope. Hope that their daughter, Caitlin, who was diagnosed with cystic fibrosis at age 2, would prove the statistics wrong and live longer than the 46 years expected. Hope that she would receive the lung transplant she spent two and a half years waiting for in her early 30s. Hope that her body wouldn’t reject it.

That hope faded on Dec. 20, 2016, when Caitlin O’Hara died of a brain bleed at the University of Pittsburgh Medical Center, two days post-transplant. She was 33.

Shattered, her mother decided to try to give meaning to her grief. And so she signed up for a certificate program at the University of Vermont’s Larner College of Medicine to become an end-of-life doula, or “death doula,” working with individuals and families as they moved from this life into whatever is next. (The terms “end-of-life doula” and “death doula” are used interchangeably, though some find the latter a little too blunt.)

“In our culture, we go overboard preparing for birth, but ‘hope for the best’ at the end of life,” said Ms. O’Hara, 62, who lives in Boston and Ashland, Mass., and is the author of “Little Matches: A Memoir of Grief and Light,” published in April. “The training was really a way of going even deeper into my own grief and realizing how I could take my own experience and help other people have a better end of life.

“I saw for myself how horrifying it is during a medical crisis and then after a death, to realize that life keeps going and needs attending to,” she continued. “As soon as Caitlin passed, suddenly it’s over and the person is gone and you have to deal with the business of living. A good doula will support you with that.”

The word “doula” comes from the Greek word meaning “woman who serves,” though most people associate it with someone who helps during birth to usher in life. In recent years, however, more people have come to recognize the need for as much assistance at the end of life as the start, part of the so-called death positivity movement that is gaining momentum in the United States and other countries. The movement, popularized by the mortician and writer Caitlin Doughty, encourages open discussion on death and dying and people’s feelings on mortality.

“The beginning of life and the end are so similar,” said Francesca Arnoldy, the lead instructor at UVM’s End-of-Life Doula program. “The intensity of it, the mystery, all of the unknowns. You have to relinquish your sense of control and agenda and ride it out, and be super attentive in the moment.”

Unlike hospice workers, doulas don’t get involved in medical issues. Rather, they support clients emotionally, physically, spiritually and practically, stepping in whenever needed. That could be a few days before someone dies, sitting vigil with them in their last hours, giving hand massages, making snacks. Or it could be months or even years earlier, after someone receives a terminal diagnosis, keeping them company, listening to their life stories or helping them craft autobiographies, planning funerals. Prices range from $25 an hour on up, although many, like Ms. O’Hara, do it voluntarily. And like Ms. O’Hara, many have signed on to help give new meaning to their own grief while helping others in the process.

More than 1,400 people have graduated from the UVM program since its inception in 2017. Coursework, which costs $800 for eight weeks, includes writing farewell letters to loved ones, crafting their own obituaries, completing legacy work or a “Life Story Project” with a trained volunteer, and starting or updating their own advance care planning files. The program also recently started a “StoryListening” research project in which mourners across the country are invited to share their stories of loss during the pandemic with a trained doula. At the end of the hourlong session, participants are given a recording of their own conversation.

Since its founding in 2018, the National End-of-Life Doula Alliance, a professional organization of end-of-life practitioners and trainers, has grown to nearly 800 members; membership nearly doubled in the last year, said its president, Angela Shook. Interest has increased in training programs with the International End-of-Life Doula Association, Doulagivers, and the Doula Program to Accompany and Comfort, a nonprofit run by a hospice social worker, Amy L. Levine.

Much of the growing interest in these programs has come from artists, actors, young people and restaurant workers who found themselves unemployed during the pandemic and recognized that they could still be of service.

“People were reaching out from a variety of different ages, younger than we would normally see, because they realized that people were dying in their age category, which doesn’t usually happen,” said Diane Button, 62, of San Francisco, a doula facilitator at UVM and a member of the Bay Area End-of-Life Doula Alliance, a collective of death workers. “It made them more aware of their own mortality and really made them want to plan and get their documents and advance directives in order.”

Rebecca Ryskalczyk, 32, a singer in Vergennes, Vt., had always felt “kind of comfortable” with death. She lost two cousins in a plane crash when she was 12 and a friend to suicide four years later. When Covid put her performing schedule on pause, she enrolled at UVM. Her goal is to let people know that they don’t have to be afraid of death; nor do they have to do it alone. “Being able to help advocate for someone and to spend the last moments of their life with them and help them stick to their plan when they may not be able to express that is an honor,” she said.

Before the pandemic, Kate Primeau, 35, also worked in the music industry. Last June, after her grandfather died of Covid-19, she began researching how to host a Zoom memorial and came across the concept of a death doula. “I felt a huge gap between the amount of grief everyone was feeling and the resources available,” she said. She got certified as an end-of-life doula through Alua Arthur’s company, Going with Grace, and also volunteers in a hospice program. “I can’t believe how much I’m geeking out over all this death education.”

During the pandemic, of course, doulas had to shift the way they worked. That was one of the main challenges: They couldn’t interact in person. So like the rest of the world, they resorted to Zoom calls and FaceTime. Families often reached out for their own healing.

“A lot are coming to me for ritual and ceremony when they can’t be with their loved one physically and they’re alone in the hospital room,” said Ash Canty, 34, of Eugene, Ore., who refers to himself as a “death walker.” “There’s a curiosity that wasn’t there prior to Covid. They’re wanting to know, ‘How do I make sense of this spiritually? How do I be with this? Because I’m really struggling.’”

As for Ms. O’Hara, who is also a novelist, she is primarily helping people write their life stories. Her training at UVM was “humbling.” “I went into it thinking ‘I’ve been a volunteer with people who are dying, I’ve lost my daughter, I’m an expert in grief,’” she said. But the longer she studied, the more she realized that she was only an expert in her grief.

“You really can’t tell anyone else how to grieve,” she said. “You can offer advice, but there’s no timeline for grief. As soon as people get a diagnosis, they’re grieving. Their way of life is over. Everyone has suffered some kind of grief with the pandemic, even if they haven’t lost a person.”

She believes that grief and joy can coexist. “My grief is never going to go away,” she said. “I wouldn’t want it to. Grief and joy and love — it’s all part of the same spectrum. I’m grieving because I loved someone so much.”

Complete Article HERE!

What Is a Death Doula?

Here’s Everything You Need to Know

by Sydni Ellis

Doulas are compassionate people who help others navigate some of life’s biggest transitions. Some doulas provide support and care to women bringing babies into the world, while others help ease individuals through the difficult and emotional passing of a loved one. These people are known as death doulas, or end-of-life doulas.

Recently, Riley Keough — granddaughter of Elvis and Priscilla Presley — announced on Instagram that she recently completed The Art of Death Midwifery training by Sacred Crossings and is on her way to becoming a certified death doula. In the post, she said, “I think it’s so important to be educated on conscious dying and death the way we educate ourselves on birth and conscious birthing. We prepare ourselves so rigorously for the entrance and have no preparation for our exit.” Riley’s decision to become a death doula comes almost a year after her brother, Benjamin, died by suicide in July 2020 at the age of 27.

Many other women have decided to take on this noble role of helping people in their final days. There are various courses that will certify you as a death doula, including the International End of Life Doula Association (INELDA). This association trains doulas to a high standard of professionalism, where they learn how to listen deeply, work with difficult and complex emotions, explore meaning and legacy, utilize guided imagery and rituals, assist with basic physical care, explain signs and symptoms of last days, guide families through the early days of grieving, and more. We talked to a few death doulas to find out more about this unique profession.

Dana Humphrey, a New York-based life coach and death doula who is certified through INELDA, told POPSUGAR, “Death doulas help the active dying transition with ease. We help them have difficult conversations with their loved ones, so they may say goodbye with grace. We help them figure out their legacy project and help them complete it. We add presence to the dying during a busy hospice environment. We also provide support to the family if they are having a hard time with the transition.”

Death doulas are the people that hold the hand of a dying person, ask them about their wishes and try to make them happen, and advocate for them every single day, according to Humphrey. Some of the things she might do include asking the dying person what mood they would like to see and feel when the family comes to visit and then setting that tone, like by having guests take a minute to sit down and move to a place of gratitude before visiting their loved one. Or she might have visitors meet in a “fun station” to put on funny hats or bedazzle themselves in glitter to add lightness in the room.

How Is This Different From Hospice Care?

Suzanne O’Brien, RN, is the founder of the International Doulagivers Institute, who’s mission is to provide awareness, education, support, and programs to communities, patients, and their loved ones worldwide to ensure the most positive elder years and end-of-life process. She told POPSUGAR that a death doula is “a nonmedical person trained to care for someone holistically (physically, emotionally, and spiritually) at the end of life.” This job “recognizes death as a natural, accepted, and honored part of life.”

After years of working as a hospice and oncology nurse, O’Brien felt unfulfilled working hospice, where nurses manage the dying patient’s care but teaches the family how to do the actual 24/7 care. She said she typically didn’t have enough time with patients on hospice as she was only allowed about one hour, once a week with the patient, and she encountered many families afraid of death. This helped her realize that death is “a holistic human experience and not a medical one,” and she wanted to become a death doula instead.

“Every day brings different needs, but it will always center around support,” O’Brien explained. “I will get called by a family whose loved one was just given a terminal diagnosis and they do not know what to do next, or a family whose loved one is actively transitioning and needs more help in the home. [I also get] many calls from families and community members looking for education and resources to help facilitate the most peaceful passing possible.”

How Do Death Doulas Help Marginalized Communities?

Donna Janda, Thanadoula practitioner (another term for death doula) and registered social worker, and Ananda Xela, Thanadoula practitioner and life coach with over 20 years’ experience in social work who has trained with INELDA, both founded Embracing Daisies to empower clients to “see the cycle of life and death not as something to simply rise above but as something to move through with soul and awareness, creating a living and lasting legacy.” They chose this profession to deal with their own feelings about death, as it helped them let death inform the fullness of their own existence, as well as to become part of this burgeoning field in which they didn’t see themselves or other BIPOC well-represented.

“There can be different ways of seeing and dealing with death, and when we talked to both clients within our Black communities and other doulas outside of our communities, we noticed the differences in approach and practice,” Janda and Xela told POPSUGAR. “A lot of the work that takes place in our own communities involves more emphasis on creating comfort around the idea of just talking about death in an honest and open manner before reaching the point of being able to plan for it. It can be a challenge for people who are already in vulnerable positions, historically and personally, to find the desire to face death and accept the idea that it can create more joyful living and offer more control over one’s own narrative — something that is often denied to marginalized peoples.”

Janda and Xela said, “To us, a death doula is someone who can hold space and offer support to both an individual and their loved ones in various areas all along the path between living and dying — from the parts where death seems unimaginable to the parts where it seems inevitable.”

As Thanadoula practitioners, these women hope to aid their clients in seeing that “life and death are connected and give meaning to each other.” They believe that deaths can matter as much as lives, and their job as death doulas is to help patients “discover, create, articulate, and manifest your heart’s wishes.” They also give families space to grieve by taking care of some of the more practical aspects that come from someone nearing the end of life.

What Else Does Someone Need to Know Before Becoming a Death Doula?

If you are thinking about becoming a death doula, you should have a passion for other people, an open-mindedness about death, and the courage to help people through difficult times. O’Brien said, “People often ask, ‘How can you do that work? It must be so depressing.’ I have to say that it is the exact opposite. Working as a death doula has been the hardest thing I have ever done, but the most fulfilling and rewarding. It is an honor and privilege to work with families at this sacred time. What you learn from those at the end of life is wisdom that teaches us about life. It is the best decision I have ever made.”

Complete Article HERE!

Why is access to medically assisted death a legislated right, but access to palliative care isn’t?

By

John started his first appointment in the Neuropalliative Care Clinic with, “I want to talk about MAID.” In our clinic, his request for medical assistance in dying is common. As legislated by government, I referred him to the MAID navigator. I had one request: that John wait to make his MAID decision until after seeing a community palliative care physician.

At his next appointment, John informed us he had withdrawn his MAID request because his primary symptom —pain — was now well controlled after our suggestions and those of the community palliative care doctor. John lived for two more years, during which he became closer with his daughter and continued to enjoy the company of his siblings.

John is not unusual. Neurologic illness accounts for 18 per cent of deaths in the Canada but rarely has palliative care involvement. By contrast, cancer accounts for 20 to 30 per cent of deaths, but typically receives 75 per cent of palliative care.

Part of the challenge is that palliative care services are often hospital-based, but most people who could benefit get their care in the community. Similarly, patients have recently refused palliative care in the belief that is the same as MAID. In 2017, MAID accounted for 1.07 per cent of deaths in Canada, increasing to two per cent in 2019.

In June 2016, the passed legislation that gave all eligible Canadians the right to request MAID. Colleges of Physicians and Surgeons required physicians to refer people who request MAID to services or arrange for a physician who would make the referral.

A male doctor consulting with an older female patient
The workforce for palliative care is inadequate to meet the needs for Canadians with chronic burdensome illnesses.

Since then, every province and territory devoted resources to navigate requests and assessments for MAID. Typically, provinces have a website for self-referral, easily found by internet search and/or dedicated health-care staff to help navigate the MAID process or inform those who are MAID-curious.

Complicated referrals

By contrast, the referral process for palliative care is often convoluted. Many provincial web pages simply give a definition of palliative care (some confuse the issue by including the MAID navigation site) but do not provide a central access point for physicians or nurses. Referral forms (where available) are complex, which creates another barrier to access. Many palliative care programs have an unofficial prognosis of three to six months’ life expectancy for services, despite research demonstrating that early palliative care improves outcomes and in fact, can prolong life.

What is the disconnect? Health-care providers are an unexpected barrier as they often cling to the belief that palliative care is for the imminently dying or means to give up hope. For the public, palliative care means dying soon.

But modern palliative care is about living well now, meeting patients’ goals and finding meaning in life. For John, we helped him set goals, focused on the positive in his life, like his better relationships with his children and ongoing closeness with his siblings. His sharp sense of humour emerged despite communication challenges.

Additionally, many palliative care programs exist in the oncology (cancer) department and thus, their focus is cancer-based. Twenty per cent of people die from cancer, but receive 75 per cent of palliative care services. Current training for palliative care physicians requires exposure to other patient populations like heart failure, kidney failure and neurologic illnesses, but health-care systems are slow to change.

A man in a hospital bed and a woman holding his hand, listening to a doctor whose back is to the camera.
Placing as much importance on palliative care as we do on MAID might make navigation to palliative care less difficult.

And finally, the workforce for palliative care is inadequate to meet the needs for Canadians with chronic burdensome illnesses.

Making palliative care more accessible

The solution requires a multi-faceted approach. All health-care providers need to have general palliative care skills because, in the way we all learn to control blood pressure and read a basic electrocardiogram, palliative care is part of good medical care.

At a systems level, placing as much importance on palliative care as we do on MAID might make navigation to palliative care less difficult for patients and clinicians. Given the broader applicability of palliative care, it is time for palliative care to become an independent department. Up to 28 per cent of Canadians will be seniors, which means more people with multiple, chronic conditions that could benefit from a palliative approach.

Building the palliative care workforce is essential. The palliative care workforce in Canada is estimated to be 773 doctors for a population of 39 million. Once the palliative care workforce is established, educating the public that palliative care includes a holistic approach to wellness and meaning in life can help re-frame and increase acceptance.

There are more people like John who should connect with a palliative care team before walking down the road to MAID. Let palliative care help you live well, now.

Complete Article HERE!

Dr. Ruth talked about sex in the 1980s. Now it’s time to talk about death

‘The pandemic has waved death in our face. Mortality is now at the forefront’

Karen Hendrickson and Jo-Anne Haun founded the Death Doula Network of BC, an online community devoted to the death positive movement operating out of their homes in B.C in April, 2020. They started the network to help people dealing with grief during the pandemic

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Only Karen Hendrickson and Jo-Anne Haun, co-founders of Death Doula Network of BC (DDNBC), can approach the topic of death with the perfect balance of positivity, passion, and of course, dark humour.

“Back in the 1980s, Dr. Ruth talked about sex,” Haun said in a Zoom interview from B.C. “She brought education and humour to it and now our children are learning about it in schools. That’s what we would like to do with death.”

Commonly associated with births, doulas offer physical and emotional support. They often handle administration and act as a go-between for patients and medical staff to minimize stress for patients and their families.

But doulas also play a role in end of life. “Death doulas” not only fill the gaps between patients and the health-care system, but also bridge the gap between the health-care and funeral industry. Their work has become particularly important during the COVID-19 pandemic, which has isolated dying patients, interrupted death rituals and placed extra stress on families.

Hendrickson and Haun, who have been friends for 20 years, became death doulas together back in 2018. They founded the virtual group to start a discussion around death and dying for anyone interested in the death-positive movement.

DDNBC has grown quickly and continuously since their first virtual meeting in April 2020. The network now has close to 140 members throughout Canada and around the world.

Karen Hendrickson and Jo-Anne live four hours apart and saw the opportunity to work together to create the virtual network DDNBC, during the pandemic, April 2020.

Gaps in the health-care system

Hendrickson and Haun have been part of the fight to include doulas within the health-care system to help fill some of the gaps between the system as its patients.

“You have likely heard of the rock metaphor before. Basically, The big rocks are the diagnoses. The medium rocks are your support people. The small rocks are your treatments. The sand in between the rocks is the doula,” Hendrickson said.

Things like confusing paperwork, new medical teams, and unfamiliar systems have a devastating emotional impact on patients and their families.

Hendrickson described an instance where a young patient with terminal cancer kept having to renew his burial permit but the medical staff continued to insist that it wasn’t important. That form is required by funeral services to take the person’s body from their home. Without an up-to-date form, the funeral service would refuse to take the body and the family would have to call the police.

“They would arrive with their sirens on and everything, and be forced to treat it like a crime scene because that’s their mandate,” Hendrickson said. “Imagine grieving families having to witness that.”

Ingrid Ollquist, based in Los Angeles, started as a birth doula in 2017, mainly supporting people through abortions and miscarriages. She decided to become a pre-planning and post-death doula after receiving emotional support from a doula mentorship program herself.

After a 10-year battle, Ollquist lost her mother to multiple sclerosis (MS). During this process, she was in and out of hospitals dealing with lots of administration with little support. As a death doula, she hopes to prevent others from experiencing this stress and isolation.

“It brought distance between my mom and I,” Ollquist said. “It was so frustrating to just live in logistical spaces with a person that you love that you can see dying in front of you.”

Ollquist is now the founder of the free grief support group Nurture Ing after being mentored by Jill Schock, the founder of Death Doula LA (DDLA).

COVID-19 has changed how we die

COVID-19 has made the gaps between health-care and funeral industries larger. Government regulations restrict patients from having more than one support person when in a hospital.

For death doulas, these restrictions mean patients die without their loved ones by their side. Doulas and family members must connect with the dying patient virtually.

“A COVID death is horrific. It’s the worst. You are losing more than just life, but all end-of-life rituals,” Ollquist said.

Many memorial and funeral events have been cancelled, and burial and cremation services have been substantially delayed.

Olliquist hasn’t personally dealt with more clients but she has played a larger role in supporting other doulas. She says that many doulas are now experiencing death anxiety after witnessing numerous horrific deaths all over the world. People of all different ages are dying without family and without rituals.

DDNBC and Ollquist suspect that more people are going to be thinking about (and planning for) their deaths after the pandemic.

“The pandemic has waved death in our face. Mortality is now at the forefront,” Haun said.

Complete Article HERE!

What matters in the end?

Couple chronicles life’s final chapter in new book

Photo of Irvin and Marilyn Yalom in the entry hall of their Palo Alto home.

Authors Irvin and Marilyn Yalom probe questions around love, loss

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Is it possible to plan a “good death?” Can one gracefully leave this world to the next generation? Can one live meaningfully until the very end?

Prompted by a serious medical diagnosis, longtime Palo Alto residents Irvin and Marilyn Yalom probe these questions in “A Matter of Death and Life,” which the duo wrote just before Marilyn died by medically assisted suicide in 2019.

Married 65 years, both Yaloms already were widely published authors — translated into many languages — when they began writing their book in spring 2019 after Marilyn was diagnosed with multiple myeloma, a cancer of the plasma cells.

Irvin, a psychiatrist and leader in the field of existential psychotherapy, had some 20 fiction and nonfiction titles to his name. Marilyn, a cultural historian, French professor and early director of Stanford’s Center for Research on Women, had published at least 10 books.

With her prognosis bleak, Marilyn persuaded her husband that they should document, in alternating chapters, the experience of her illness and likely demise from the disease.

“We now live each day with the knowledge that our time together is limited and exceedingly precious,” the two, both in their late 80s, write in the preface. “This book is meant, first and foremost, to help us navigate the end of life.”

As scholars, both Yaloms are steeped in the great philosophers’ contemplations on exemplary life and death, and have wrestled in their own work with themes of mortality.

In “American Resting Place,” co-authored with their son, the photographer Reid Yalom, Marilyn documented how 400 years of gravestones, graveyards and burial practices reflect changing American ideas about death, class, gender and immigration.

As a psychotherapist, Irv had counseled countless patients, including many with terminal illnesses, about facing death, and written extensively about their — and his own — death anxieties.

“Of all the ideas I’ve employed to comfort patients dreading death, none has been more powerful than the idea of living a regret-free life,” Irv recalls in the book.

Sitting together in their yard, admiring the trees, “Marilyn squeezes my hand and says, ‘Irv, there’s nothing I would change,'” he writes. With four children, eight grandchildren and extensive world travels in addition to their professional accomplishments, both Yaloms feel they’ve seized their days to the fullest.

Even as death approaches, the pair celebrate “magic moments,” such as the evening they abandon television and Marilyn pulls “Martin Chuzzlewit” down from the bookshelf and begins reading aloud. “I purr in ecstasy, listening to each word,” Irv writes. “This is sheer heaven: What a blessing to have a wife who delights in reading Dickens’s prose out loud.” He recalls the day — more than 70 years before — when the two had first bonded over their mutual love of books as classmates at Roosevelt High School in Washington, D.C.

When chemotherapy fails and Marilyn is placed on immunoglobulin therapy, she begins inquiring about medically assisted suicide — legal in California since 2016 — in the event the new treatment does not work.

Irv is horrified, but Marilyn is at peace. Though sad to leave the people she loves, “The idea of death does not frighten me,” she writes. “I can accept the idea that I shall no longer exist. … After 10 months of feeling awful most of the time, it’s a relief to know that my misery will come to an end.”

After some weeks the couple is told the immunoglobulin therapy, too, has failed.

Marilyn accepts various tributes and goes about saying her goodbye, and giving away her treasured books to a large network of friends and colleagues. “It’s weird to realize that if I want to do anything, I’ll have to do it quickly,” she writes.

Ultimately, about a week before Thanksgiving 2019, she chooses to end her life, ingesting lethal medication in the presence of Irv, their four children, a physician and a nurse. (She was among the 405 people to use California’s End of Life Options Act in 2019, according to the annual tally from the state health department.)

Shortly before, Marilyn had reviewed the writings of Greek and Roman philosophers on how to live and die well. “For all the philosophical treatises and all the assurances of the medical profession,” she writes, “there is no cure for the simple fact that we must leave each other.”

The final chapters are written by Irv, recounting the agony of grief and his halting attempts to resume some kind of normal life — including venturing out to a Barron Park Senior Lunch at the Corner Bakery.

After more than 70 years with Marilyn beside him, he struggles with the idea that “something can have value, interest and importance even if I am the only one to experience it, even if there’s no Marilyn to share it with.

“It’s as if Marilyn’s knowing about a happening is necessary to make it truly real,” he writes.

He rails at the irrationality of this. “I’ve been a full-time student, observer and healer of the mind for over 60 years, and it is difficult to tolerate my own mind being so irrational,” he writes.

Reached at his home in late May, two months after the book’s publication, Yalom said he’s been busy with the “strong feedback,” including virtual book talks with large audiences all over the world. The book is licensed for publication in 25 countries, some already in print and others likely between now and the end of next year, according to literary agent Sandra Dijkstra.

Yalom, who turns 90 this month, continues to work on his next book and also to do single-hour therapy consultations.

“I’m growing old now and my memory’s beginning to disappear,” he said. “I’m not seeing ongoing patients anymore but I think I’m able to do a lot for some people just in the single hour.”

His new book is intended as a training manual for young therapists. “I’m always writing, and as long as I’m writing I feel very well,” he said.

He also takes walks daily to a nearby park, where he’s had a bench installed in memory of Marilyn. Yalom said he enjoys sitting on the bench, taking in the surroundings and thinking of her.

Complete Article HERE!