Death Doulas Adapt to Pandemic to Provide End-of-Life Support

COVID-19 prompted virtual visits, more interest in ‘death coaches’

by Robin L. Flanigan

Most Americans say they’d prefer to die at home, and indeed rates of home deaths are on the rise — a trend that may be fueled by the coronavirus pandemic and decreasing nursing home occupancy rates.

But having someone help navigate that end-of-life experience can be essential. Sometimes called a death coach or a death midwife, death doulas act as advocates for the dying, guiding everything from logistical preparations, such as advance care planning and funerals, to incorporating cultural and religious beliefs into final rituals.

“It’s kind of like being an event planner, but for death,” says Virginia Chang, a certified end-of-life doula in New York City.

COVID-19 has forced death doulas to adapt to pandemic restrictions and to new client needs. Those in private practice have had to offer more support over the phone and via Zoom, Chang says. At the same time, given a shortage of home care services, doulas have found themselves providing increased emotional support to caregivers, who may feel isolated or overburdened.

Virtual visits were an adjustment for Chang, who provides services through her business, Till the Last. “I do miss the intimate connection established between myself and the dying person through quiet conversation, presence and touch,” she says. “However, I have always said that empowering the caregivers to better care for their dying loved one meets my goal of better care for the dying person. So, I’m still doing my job.”

Chang has also noticed that patients and family members are getting in touch earlier than usual. Instead of being summoned weeks, or even days, before death, she is being contacted months, and sometimes years, before an anticipated death.

“They want to be better prepared,” she says. “By being better prepared, they’re better able to face death when it comes.”

Death doulas a ‘missing piece’ in care

Home has surpassed the hospital as the most common place of death in the United States for the first time since the early 20th century, according to a New England Journal of Medicine study published in 2019 (months before COVID-19 hit the U.S., which means that the number of home deaths is likely higher now).

Studies have shown that approximately 80 percent of Americans would prefer to die at home if possible, according to the Stanford School of Medicine. That figure may be higher now, after the pandemic focused people’s attention on death and dying, but COVID-19 has certainly amplified interest in the role of death doulas, says Henry Fersko-Weiss, 73, a licensed clinical social worker who, in 2003, created the first formal end-of-life doula program in the U.S., at a New York City hospice, and cofounded the International End of Life Doula Association.

“The recognition that death can be done differently is increasing because there’s been so much talk about death and dying,” he observes.

Though the work that death doulas do has probably gone on for thousands of years and been called different things, Fersko-Weiss says, the death doula movement gained steam two decades ago, offering meaningful services to those who felt limited by a traditional medical system.

“End of life needs more than crisis intervention,” he says. “This is a missing piece during a very demanding time in people’s lives.”

Fersko-Weiss cautions that people who are interested in working with a doula should know that no industry standards currently exist and that a certification by one organization doesn’t hold the same value as a certification by another.

Chang, for example, learned about end-of-life doulas after attending a talk that Fersko-Weiss gave. She has since been trained by the International End of Life Doula Association, the University of Vermont End-of-Life Doula Professional Certificate Program and the Visiting Nurse Service of New York.

Ask plenty of questions

Doulas support the dying, but they also provide services to those left behind.

Arlene Stepputat, 67, volunteers as a project manager for the nonprofit National Hospice and Palliative Care Organization’s End-of-Life Doula Advisory Council. The council’s Doula Grief Project, which offers free and confidential grief support services to those dealing with loss, grew out of the COVID-19 restrictions and the fact that most doulas couldn’t work in person with clients and families.

Experienced end-of-life doulas, trained in compassionate listening, provide one-hour telephone or videoconferencing sessions over four weeks as normal support systems continue to be taxed.

People who are considering the services of a death doula should ask plenty of questions, advises Stepputat, owner of Dying in Grace. “Interview that person like you would any other person you’d be making a contract with,” she says.

The National End-of-Life Doula Alliance offers an online state-by-state directory of doulas.

Some questions to ask a death doula are:

  • What is their experience?
  • What do they charge?
  • Where were they trained?
  • Why do they do this work?

Stepputat, who lives in Santa Barbara, California, was drawn to this occupation because of multiple losses: Four days before her 12th birthday, her father died in an accident; when Stepputat was 19, her girlfriend was murdered; and several street youths she worked with as a young adult died from suicide and other causes.

“Choose wisely because you are going to use this person in one of the most challenging times of your life,” Stepputat says. “It can also be one of the most sacred and beautiful times of your life. Creating a peaceful transition for someone you love is a gift.”

And the benefits of a doula-patient relationship go both ways, according to Terry Bonebrake, 58, of Grand Rapids, Michigan, a death doula who says she reaps rewards from her work.

“Anytime you do service work, your focus is on the other person, and yet you learn things you might not ever have known otherwise,” she notes. “What’s probably affected me the most is seeing how much every moment counts. This 60 minutes and the next 60 minutes will never be the same again.”

What do death doulas do?

Doulas “inform, support and guide, rather than advise or do,” explains Merilynne Rush, who offers end-of-life doula training, mentoring and certification through her consultancy, The Dying Year. Rush says end-of-life doulas can:

  • Help form a circle of support and find tasks for those who want to help.
  • Conduct a life review: Record stories, make a video or write letters to loved ones for future occasions.
  • Provide hands-on nonmedical comfort, such as guided imagery, breathing and relaxation techniques, hand massage and essential oil therapy
  • Sit bedside so family and caregivers can rest.
  • Pray; meditate.
  • Offer active listening.
  • Share information about local resources, like hospice and palliative care.
  • Prepare meals and do light housework.
  • Discuss wishes for end-of-life care (advance care planning).
  • Help arrange for (or keep) vigil during active dying.
  • Share information about home funerals, green burials and body care after death.
  • Offer grief support and ongoing visits after the death.

Complete Article HERE!

Medicalizing My Grief

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A classmate of mine committed suicide a few weeks ago. Though I’ve heard the harrowing statistics about physician and trainee suicide rates, to be honest, I never expected to personally encounter such a tragedy. The small classes at my medical school allow for a strong sense of community in which we all know each other, celebrate important life milestones, and happily reconnect when we’re together after clinical rotations scatter us throughout the hospital.

In some ways, I can’t help but wonder if the inevitable dispersion during rotations played a role in his distress. We spend much of our preclinical time leaning on our classmates as we collectively attempt to master the intricacies of medicine; oftentimes, they are the first to offer words of encouragement after exams don’t go our way, kindly explain concepts that weren’t clear the first time around, or simply provide companionship over an afternoon cup of coffee. However, during rotations, the medical school experience becomes much more isolating — joining teams often as the lone medical student, left to your own devices to navigate not only clinical challenges, but also the awkward and complicated hierarchies universally found in medical training. When considering the additional isolation that comes with social distancing due to the current pandemic, I can only begin to imagine the suffering my classmate must have been experiencing.

In the weeks since his passing, I’ve found it challenging to grieve. No tears have been shed, nor have I been able to reminisce over the warm memories of his kindness and joviality as we tackled cadaver dissection together. Instead, I’ve found myself wondering about the medical minutiae of his “case” — a word that, despite its omnipresence in our medical lexicon, takes on a cold, reductionist tone as it attempts to distill the life of a friend down to a history of present illness, physical exam, set of lab values, and assessment and plan. How long did it take for someone to find him? Was recovery even a possibility? Were his organs eligible for donation? Did his care team know he was one of their own?

When my thoughts of medicine abate, I’m left with more troubling questions about myself. Why can’t I ignore the medicine and simply grieve his loss? Has my ability to grieve morphed into a numb, medicalized replacement? Is this how I’ll “grieve” the losses of my family or other friends too?

In retrospect, these feelings shouldn’t come as a surprise. In medicine, we’re unconsciously taught to medicalize losses of all kinds as we care for patients. In the trauma bay, for example, I observed “a traumatic aortic injury with unsuccessful repair,” as opposed to a tragic car accident leaving behind a young widow with small children. The octogenarian I met on hospital service was no longer known as the life of the party at Bridge Club; instead, she was the frail elderly woman admitted for a change in mental status who would require skilled nursing placement at discharge and would have to miss her granddaughter’s birthday party. The disheveled gentleman I met in the acute care psychiatric unit wasn’t seen as the neighbor who shoveled snow off everyone else’s driveway, but rather the man with decompensated schizophrenia admitted under civil commitment for stabilization and medication optimization. In none of these instances was the impact of loss a component of the conversation; instead, we focused on the medicine.

To be clear, it is necessary that we view our patients through the lens of medicine; it is our job to address the medical issues that bring them to our doorsteps. However, when we overly medicalize our patients as they experience loss, we create an unnecessary distance, shielding ourselves from some of their grief. Based on my experience, I suspect we suffer from that distance as much as they do. I personally felt out of touch with grief because despite the losses occurring around me throughout my rotations, we seldom took time to acknowledge the elephant in the room. Grief is a normal human emotion, so why are we trying so hard to avoid it? What might hospital rounds or office visits look like if we took the time to discuss the losses our patients experience, not just with them but with each other too? How might that change the learning environment, or, more importantly, patient care?

Perhaps my feelings — or lack thereof — are simply a product of my training level that will fade as I become more comfortable with my clinical skills. Instead of worrying about interpreting lab data or performing physical exam maneuvers correctly, I hope someday to work through the medical aspects of care more efficiently, allowing me more time to sit with my patients, experience the weight of their sadness, walk through the pros and cons of difficult choices with them, and extend my condolences to loved ones. In the meantime, I can challenge myself to bring to light the grief experienced by the patients we encounter on rounds or in our outpatient clinics and encourage my peers and preceptors to pause in reverence of this emotion.

I hope as I encounter future losses, my fears about medicalizing grief are never realized, but I suspect that if I continue to acknowledge the presence of grief around me, I can safeguard myself from future hard-heartedness. I hope the same for others too.

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?

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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

By

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.

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As a doctor, I’m trying to have more empathy for my patients — and myself

By Joseph Stern

“Well, then. I’m going to die, aren’t I?” my friend asked me from a bed in the emergency room. I faced him and his wife. I had worked with Alan Davidson for 20 years. A recently retired ER attending physician, he came in with new right-sided numbness one Saturday evening.

Initially, the ER team called a “code stroke,” rushing to take advantage of the precious minutes available to administer clot-busting drugs or open blocked arteries before the patient suffers more brain damage. A CT scan suggested not a stroke but a brain tumor. I was consulted when an MRI suggested a glioblastoma. We both knew his prognosis was likely poor.

Three days later, I took him to surgery, aware that he was trusting me with his life. When he awoke, Alan and I were pleased that his numbness was no worse and he had no weakness. The postoperative scan showed we had removed virtually the entire tumor.

When the pathology came back, I met with Alan, his wife, and his son. I sat on the edge of his bed and told him his diagnosis. Pathology suggested glioblastoma, a malignant brain tumor with a terrible life expectancy. Neither of us was surprised: We both knew this was coming. But he choked up as he expressed gratitude for the care he was receiving.

Holding back my own tears, I told him how honored I felt he trusted me enough to care for him. Previously, I would not have allowed myself to acknowledge my own gratitude to Alan or accept the depths of his gratitude to me: I would have pushed these feelings away.

More than 25 years earlier, I had faced a similar situation with different results. As a resident, I helped my supervising doctor remove a tumor from deep within the temporal lobe of a man in his 30s. The surgery went well, but we knew the patient’s prognosis was dismal. I entered the cramped consultation room and encountered, for the first time, his wife and three small children. They nervously awaited our report.

I couldn’t bring myself to tell them this was an incurable tumor from which the patient would die in the near future. Instead, I parsed my words. They were technically correct, yet detached. Overwhelmed, I had no idea how to face the patient’s family. What they needed was honesty and compassion. Instead, I avoided connecting, leaving someone else to fill in the gaps. To this day, I carry a sense of shame and failure: I avoided pain, but fell short as a physician.

Physicians develop detachment and emotional distance as a coping mechanism against the pain of grief, loss and failure. Yet our attempts to protect ourselves through detachment ultimately intensify feelings of loss and deprive us of resolution. I have come to see that these unresolved feelings contribute directly to professional burnout.

Mary Buss, director of ambulatory palliative care at Beth Israel Deaconess Medical Center and associate professor of medicine at Harvard Medical School, says that physicians are afraid of, and avoid, feelings of sadness. We reason, mistakenly, that being open to pain and loss could damage us; we fear losing our composure and appearing vulnerable. Yet accepting vulnerability is what most closely connects us with our patients. This is what they remember in the end, after all. Patients crave acceptance, appreciation, and acknowledgment; we all want this for ourselves.

As the brother of a patient, I discovered how it felt to be on the receiving end of care lacking in compassion as I observed occasional blunt, insensitive or confusing comments from the medical staff. I became determined to connect more deeply with my patients and my own emotions. Yet I wondered: How could I balance connection and detachment as a neurosurgeon? Did connecting emotionally with my patients mean I could no longer detach enough to be an effective surgeon? Would it be better to become a technician and leave the emotions to others

I found my approach through a conversation with Helen Riess, a psychiatrist and author of “The Empathy Effect: Seven Neuroscience-Based Keys for Transforming the Way We Live, Love, Work, and Connect Across Differences,” who explained that through the process of developing self- and other empathy, emotional armor could be replaced by “emotional agility.” Intrigued, I went on to read Susan David’s “Emotional Agility: Get Unstuck, Embrace Change, and Thrive in Work and Life,” which characterizes this healthier stance.

Emotional agility enables us to move easily between powerful emotions, recognizing feelings without becoming bogged down by them; to move fluidly through life’s demands without becoming stuck or overwhelmed.

Emotionally agile people derive power from facing, not avoiding, difficult emotions. By allowing ourselves to be vulnerable, physicians become better able to connect more deeply with our patients and ourselves. I came to appreciate that it is possible to move between dispassionate technical precision and intense emotional connection without having to choose between them.

I sat with Alan and his family after his surgery, and we talked until I had to return to the operating room for another case. As I left, Alan remarked that I seemed to get energy and joy from my work. I was surprised to realize that I did feel energized, not depleted; privileged to witness both the beauty and fragility of life. At that moment, I knew I had discarded my suit of emotional armor. In its place was something better and more powerful: emotional agility.

Weeks later, Alan was readmitted to the hospital with increasing right-sided numbness. I read him a draft of this essay as he sat in his hospital bed, unable to control his computer or phone yet intellectually forceful and emotionally attuned. He said that he wanted me to tell his story. He felt strongly this message must be shared, agreeing that doctors often carry a burden of private grief and perceived failures.

We spoke of his children, his grandchildren, his wife. He told me of professional mistakes and a sense of failure that haunted him, yet he also spoke proudly of the thousands of patients he had cared for, their individual stories and faces no longer distinct but flowing through him.

Sitting at my friend’s bedside, I saw Alan forgive himself. He always tried to do his best.

Sometimes, he failed. Just as I often felt powerless, unable to pull someone from the wreckage I saw coming, yet I had done my best. As a resident years ago, knowing that a young husband would not live for long and that his children would lose their father, I had done all I could do — except to allow the enormity of this loss to wash over me, to share it with his family and to accept it, as Alan was doing in his own life

Alan reinforced for me that it is possible to be a skilled surgeon and also a caring and emotionally connected doctor; to hold someone’s hand, and to be present. I couldn’t repair my failed conversation with that family, but I can learn from my mistakes. As long as I continue to practice, there will be another opportunity to try to get things right.

And, as Alan told me, these lessons hold for our lives beyond practice. Part of emotional agility is self-compassion, often a sticking point for physicians. We tend to be unforgiving of ourselves (and of our colleagues). Just as we need to recognize and admit our failings, we also need to let them go. We must forgive ourselves and each other.

These are essential steps toward accepting our vulnerability and achieving emotional agility. Only then can we abandon our detached and defended selves and make the connections that sustain and enrich us.

Alan Davidson, born Jan. 6, 1942, died June 26, 2020. Joseph Stern is a neurosurgeon in Greensboro, N.C. He is the author of “Grief Connects Us: A Neurosurgeon’s Lessons on Love, Loss, and Compassion,” published in May by Central Recovery Press. His website is josephsternmd.com.

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