Category: Preparing for Death

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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↩!

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Death-friendly communities ease fear of aging and dying


Improving death-friendliness offers further opportunity to improve social inclusion. A death-friendly approach could lay the groundwork for people to stop fearing getting old or alienating those who have.

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Death looms larger than usual during a global pandemic. An age-friendly community works to make sure people are connected, healthy and active throughout their lives, but it doesn’t pay as much attention to the end of life.

What might a death-friendly community ensure?

In today’s context, the suggestion to become friendly with death may sound strange. But as scholars doing research on age-friendly communities, we wonder what it would mean for a community to be friendly towards death, dying, grief and bereavement.

There’s a lot we can learn from the palliative care movement: it considers death as meaningful and dying as a stage of life to be valued, supported and lived. Welcoming mortality might actually help us live better lives and support communities — rather than relying on medical systems — to care for people at the end of their lives.

 

The medicalization of death

Until the 1950s, most Canadians died in their homes. More recently, death has moved to hospitals, hospices, long-term care homes or other health-care institutions.

The societal implications of this shift are profound: fewer people witness death. The dying process has become less familiar and more frightening because we don’t get a chance to be part of it, until we face our own.

Fear of death, of aging and social inclusion

In western cultures, death is often associated with aging, and vice versa. And a fear of death contributes to a fear of aging. One study found that psychology students with death-anxiety were less willing to work with older adults in their practice. Another study found that worries about death and aging led to ageism. In other words, younger adults push older adults away because they don’t want to think about death.

A clear example of ageism being borne out of a fear of death can be seen through COVID-19; the disease gained the nickname “boomer remover” because it seemed to link aging with death.

Grandparents with masks seen pressing hands against window looking at granddaughter

The World Health Organization’s (WHO) framework for age-friendly communities includes “respect and social inclusion” as one of its eight focuses. The movement fights ageism via educational efforts and intergenerational activities.

Improving death-friendliness offers further opportunities to improve social inclusion. A death-friendly approach could lay the groundwork for people to stop fearing getting old or alienating those who have. Greater openness about mortality also creates more space for grief.

During COVID-19, it’s become clearer than ever that grief is both personal and collective. It’s especially relevant to older adults who outlive many of their peers and experience multiple losses.

The compassionate communities approach

The compassionate communities approach came from the fields of palliative care and critical public health. It focuses on community development related to end-of-life planning, bereavement support and improved understandings about aging, dying, death, loss and care.

The age-friendly and compassionate communities initiatives share several goals, but they don’t yet share practices. We think they should.

Originating with the WHO’s concept of healthy cities, the compassionate communities charter responds to criticisms that public health has fallen short in responding to death and loss. The charter makes recommendations for addressing death and grief in schools, workplaces, trade unions, places of worship, hospices and nursing homes, museums, art galleries and municipal governments. It also accounts for diverse experiences of death and dying — for instance, for those who are unhoused, imprisoned, refugees or experiencing other forms of social marginalization.

The charter calls not only for efforts to raise awareness and improve planning, but also for accountability related to death and grief. It highlights the need to review and test a city’s initiatives (for instance, review of local policy and planning, annual emergency services roundtable, public forums, art exhibits and more). Much like the age-friendly framework, the compassionate communities charter uses a best practice framework, adaptable to any city.

Multigenerational family, walking, holding hands on the beach.

Age-friendly initiatives could converge with the work of compassionate communities in their efforts to make a community a good place to live, age and, ultimately, die.
There’s a lot to like about the compassionate communities approach.

First, it comes from the community, rather than from medicine. It brings death back from the hospitals and into the public eye. It acknowledges that when one person dies, it affects a community. And it offers space and outlets for bereavement.

Second, the compassionate communities approach makes death a normal part of life whether by connecting school children with hospices, integrating end-of-life discussions into workplaces, providing bereavement supports or creating opportunities for creative expression about grief and mortality. This can demystify the dying process and lead to more productive conversations about death and grief.

Third, this approach acknowledges diverse settings and cultural contexts for responding to death. It doesn’t tell us what death rituals or grief practices should be. Instead, it holds space for a variety of approaches and experiences.

Age-friendly compassionate communities

We propose that age-friendly initiatives could converge with the work of compassionate communities in their efforts to make a community a good place to to live, age and, ultimately, die. We envision death-friendly communities including some, or all, of the elements mentioned above. One of the benefits of death-friendly communities is that there isn’t a one-size-fits-all model; they can vary across jurisdictions, allowing each community to imagine and create their own approach to death-friendliness.

Those who are working to build age-friendly communities should reflect on how people prepare for death in their cities: Where do people go to die? Where and how do people grieve? To what extent, and in which ways, does a community prepare for death and bereavement?

If age-friendly initiatives contend with mortality, anticipate diverse end-of-life needs, and seek to understand how communities can indeed become more death-friendly, they could make even more of a difference.

That’s an idea worth exploring.

Complete Article ↪HERE↩!

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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↩!

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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↩!

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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.

Complete Article ↪HERE↩!

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‘Music soothes pain’

— Paris cellist plays for end-of-life patients

By Reuters

Once a week, the rooms of the Jeanne Garnier palliative care home in Paris reverberate to a different sound: a solo cello.

Claire Oppert, a concert cellist trained at the Moscow Conservatory, visits the facility on Fridays to play for its residents – many of whom are struggling with physical pain as well as coming to terms with incurable illness.

“I’m in permanent pain,” said Micheline Leroux, a cancer patient at the care centre in southwest Paris, one of the biggest of its kind in Europe.

“But I find that music helps a little to escape the pain,” said Leroux quietly, after listening to a stirring rendition of Albinoni’s Adagio, a Baroque classic.

“You pay attention, and if it’s a piece you know, you anticipate each coming note,” she said.

Besides the weekly recitals, Oppert, 55, has made it her mission to demonstrate the therapeutic effects of music by taking part in medical studies on the subject.

Cellist Claire Oppert plays music to soothe patient Bernard Genin, 79, at end-of-life care home Jeanne Garnier in Paris, France, May 21, 2021.

Staff at the care home are in no doubt.

“After Claire leaves, we find the patients in a calmer state, sometimes moved, sometimes happy,” said carer Margarita Saldana. “There can be tears or moments of joy.”

Oppert has been playing to end-of-life patients for almost a decade since she first visited a nursing home with her cello.

“In palliative care there’s sometimes still pain, in spite of the morphine and drugs,” she said. “Music really does have a calming effect on that residual pain.”

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Embracing death

— End-of-life doulas growing in popularity

Ashley Scott has worked as a death doula for more than a year and has her own private practice, Benevolent Care.

Ashley Scott wants people to feel safe, comfortable

By Kara Mason

Ashley Scott describes the emotional side of her job as a death doula like a fountain in the middle of a lake.

Her job is to help shepherd a dying person through an experience that is so intimate, common and yet mostly taboo in American culture. Scott wants people to feel comfortable, safe and cared for in their last moments.

“You’re pouring out this energy and love and compassion and space for them to consume it all,” she said. “I really didn’t realize the amount of energy it took until my last client.”

The client, a woman who had outlived her husband and daughter, was standing up and alert when Scott first arrived at her home.

“I know who you are,” Scott remembers her saying. “I’ve been waiting for you.”

It gave Scott, who has worked in hospice care for over a decade, chills. She’d taken care of many dementia and Alzheimer’s patients and somehow, even as agitation and bursts of energy can be common close to death, this was different. The statement seemed “very cognitive,” she said.

The woman’s room was disheveled, stuffy and a daytime court television show was blaring, so Scott said she put her in bed, turned on some instrumental music, rearranged the furniture a bit, opened a window and dimmed the lights. She rubbed the woman’s arms and her face to make her comfortable.

“In that five hours we were able to hold that space for her and help her go into an active dying transition,” she said.

The woman had been in hospice care for more than a year before that day.

Scott officially started her journey as a death doula a year ago, but caring for people at the end of their life has been her passion since starting as a certified nursing assistant at a nursing home.

“It was just so beautiful, like to help and be there and basically just prepare and honor the shell that this person had,” she said of the first death she experienced as a hospice nurse. “After that, it was kind of just like if anybody was on the brink, I had this inkling of magnetism to them. I want to make sure they’re cared for and comfortable and loved and appreciated in their last days because it’s their most vulnerable point in life.”

Throughout her career at nursing homes, Scott said she knew there was something missing in caring for the dying. There wasn’t anybody to “hold the space” – a phrase that many people involved in end-of-life care use frequently in reference to death doulas’ work.

It wasn’t until a friend had sent her a link to a Zoom seminar about death doulas last May that it all came together for Scott, who is 32 and lives in Aurora with her fiance. She’s part of a growing number of workers dedicated to making death a more comfortable experience.

Doulas, by loose definition, tend to all the duties of dying that medical personnel do not. In a lot of ways they’re equivalent to a wedding planner, but for your final living moments.

They can help arrange funeral services, help complete legacy projects, make sure the aesthetic of a death place is exactly what a client wants and help family members cope after the passing of their loved one.

“We treat dying like a fast food experience,” Scott said. “And it should be treated like a five-course meal.”

For people who work in hospice care, the arrival and growing popularity of the death doula is welcomed, and it’s changing the approach and culture around an experience everybody will have.

Evolving care

Katelyn Van Valkenburg, the volunteer coordinator at Denver-based Namaste Hospice, jokes that she’s a little protective of Scott, who first started volunteering her doula services in November.

Van Valkenburg said she doesn’t want Scott to become overworked or burnt out because it’s become obvious how necessary doulas are to hospice care. Before Scott, the organization consisted of nurses, social workers and volunteers, but after working with Scott they’ve welcomed five more volunteer doulas.

“Some of us in hospice have grown accustomed to the routine death,” Van Valkenburg said. “They force us back into thinking about making this unique.”

Scott arrived at Namaste after two waves of the COVID-19 pandemic, but it felt “kind of like a new beginning,” Van Valkenburg said. For months, hospice nurses had been scrambling to care for patients, some inside nursing or retirement homes. Early on in the pandemic, sometimes Namaste’s workers weren’t even allowed inside facilities and had to find ways to comfort their dying patients from bedroom windows or over the telephone or a computer.

“It shook us to our core,” she said.

Nurses and social workers had to become creative, Van Valkenburg said. They arranged the donation of more than 150 radios for their patients, and they put aromatherapy diffusers in patient rooms when they could to make the atmosphere as comfortable as possible.

This winter, adding doulas to their care model helped hold the caretakers to “being fully present,” she said.

Even though neither private insurance nor Medicaid covers the cost of doulas, like it does for end-of-life medical care through a hospice organization, Namaste wants to eventually be able to pay its doulas. For now, they volunteer their services, mostly to meet requirements through certification programs.

Scott started her own private doula practice, called Benevolent Care, where planning services can range from $70 for one hour of Death Day planning to an extensive package where Scott is available around the clock. She said she usually works those costs out on an individual basis.

“Everybody is so different, and I don’t want to deny them,” she said.

While doulas don’t administer medical care, Nancy English, an assistant professor who teaches palliative care at the University of Colorado Anschutz Medical Campus, says there’s definitely a role for them in hospice settings.

“We need to look at death as important as birth, it’s a transition from one state to another. We know it’s a major transition, even if we don’t know what’s next,” she said. “The death doula helps us make it more sacred.”

English said she recently took a course for death doulas, and while she doesn’t plan on practicing as one, she wanted to see how it could help her prepare students for providing more holistic care.

“A doula can take the time to actually address some of the things that have been fragmented in care,” English said. “I think nurses are so creative and so caring as a group, and they want to do it, but you have one patient that’s dying in this bed and the next patient is coding. It’s just a difficult role.”

English, who was a hospice nurse herself for many years before becoming a professor, said the workload just doesn’t lend itself to the kind of one-on-one attention and comfort a doula can provide.

Scott said she believes her background as a hospice nurse has helped her in becoming a doula because she understands the medical jargon and also the struggle in not being able to comfort each patient as much as they might need.

It’s also good for the families of people in hospice care.

“Imagine having someone on your side, someone who is really right there with you walking alongside you in this process,” she said. “Someone that you could call who was there with you that saw certain things that maybe you missed, and you can call them and just be validated.”

“You’re drawn to it because either you have a curiosity or an experience,” she said.

The movement

The moment Scott learned that death doulas existed, she said she knew it was for her. That tends to be the case with most people who work in end-of-life care, said Cindy Kaufman, president of the Colorado End of Life Collaborative.

“You’re drawn to it because either you have a curiosity or an experience,” she said.

Kaufman and a small group of other doulas organized the collaborative because they saw a need for a common place for people working in the field. Somewhere they could connect services if they needed or just have a support system. The community has been steadily growing over the years, but Kaufman said she really saw an uptick about three years ago.

That’s in part because of a growing “death positive” movement, she said, which is largely credited to Los Angeles-based writer, activist and mortician Caitlin Doughty. In 2011, Doughty started a collective called The Order of the Good Death, which became a foundation for much of the crusade to see death in a brighter light.

Since then, death doulas have grown in popularity, according to Kaufman. There isn’t a sure way to tell just how many doulas there are in Colorado because they tend to work in their own private practices or through volunteering like at Namaste.

The movement has also birthed “death cafes” – groups where people can gather to talk about all aspects of dying – all over the country. English started a Denver-based death cafe in 2014, which typically met Sundays at the Tattered Cover bookstore before the pandemic. For the last year, she’s been hosting a small group on Zoom.

“They’ve been wonderful,” the professor said, echoing Kauffman that Westerners are beginning to view death in a different way.

Kaufman, English and Scott each say they see the shift, and maybe the pandemic – a collective experience of sudden death – may push forward even further.

“A life lost is a life lost and we need to honor that, and during COVID we didn’t get to,” Scott said. “We didn’t get to honor the dying process. It literally just happened, and I guess that’s what really drew me into being a doula. We get to honor the process.”

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