Tag: End of Life Care

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Resting in Peace…

Death doula Jane Whitlock on end-of-life care, grief, and the importance of telling our death stories

Jane Whitlock

by

When her husband got sick with kidney cancer and died four months later, Jane Whitlock, having had no experience with death or grief, found that the guidance and spiritual care provided by hospice just wasn’t enough. Resolving to find her own purpose while answering for the gaps she saw in end-of-life care, she followed her intuition and became a death doula.

A death doula, or end-of-life doula, is someone trained to provide holistic care to a dying individual. There is no nationally standardized certification program, which means there are multiple training options—a process that involves a set of training classes and documented hours of direct client support, plus whatever specific assessments a particular certification program requires. Death doulas represent a growing movement toward redefining our typical approaches to death.   

A death doula’s role is as nuanced as each individual who occupies that role, and Jane Whitlock sees herself first as a companion. She provides comfort and support to the dying individual and their “tribe”—as she often refers to the circle of family and friends—through a time for which most people may not be spiritually prepared. Through intentional connection, she deciphers how she and the tribe can best serve the dying person. She abides by the slogan, “Death: it’s a collaborative event!”

This Q&A has been edited for clarity and length.

The Growler: Why do you believe death doulas are important?

Jane Whitlock: A doula helps ask the big questions so this process is as spiritually comforting as it can be. Think of your deathbed and how you want to feel—at peace, right? So, how do you get there?

A doula also gives you some sense of what’s coming and can support you through these tough situations that you may not be prepared for. You haven’t been here before and often don’t have any bank of knowledge to draw from.

Cultures have evolved to include how we care for people who are dying and have died, and while some intact cultures can trace their beliefs back very far (to the Buddha, for example), Americans don’t have those deep ties.

Since the Civil War, the standardization of funeral homes, embalming, and the medicalization of end-of-life have removed death from the home. We no longer know how to care for people who are dying, how to have home vigils, how to mark significant transition points (leaving a body for the last time, a body leaving the house).

How can our modern standardized systems shift to accommodate what death doulas have to offer?

It would be amazing if hospitals employed doulas! Wouldn’t it be great if you could transfer someone who has died to a room to clean them up, bring the family in, and have someone guide them through rituals of saying goodbye and nurturing the body?

I think a lot of times this seems like a white lady movement—like, we want to cover everything in crystals and candles and aromatherapy or whatever. I push pack against that because there are so many other ways of experiencing death. This movement needs to be more inclusive, to change a whole bunch; being a death doula is a teeny, tiny door, and there is a lot of growth ahead.

What characteristics make an effective death doula?

You have to be able to empty yourself out, to be hollow and free of judgment, of any preconceived ideas about what should be happening. You have to listen without thinking and really be with someone when they’re suffering without trying to fix it. An effective death doula is someone who is calm, quiet, and vulnerable. It’s really so much about vulnerability.

I volunteer at a hospice and often have to practice that whole “soft belly” thing, to stop before every room and become wide open. Even when someone doesn’t want to see you, you have to think, “It’s not about me.” You just kind of clear your energy, go into the next door. You have to fight being defensive in order to just be vulnerable.

 

What are some ways to go about changing our death culture?

It really starts with your stories. We don’t tell our death stories; we tell our birth stories and our family stories, but we don’t tell our death stories. It would be great to just listen to a bunch of stories about how it happens, maybe know just some weird and messy stuff, too. What was it like? What would you have done differently? What went well? What surprised you?

There’s this guy, Dr. Allan Kellehear, who says our inability to talk about death is a public health epidemic. He refers to the AIDS epidemic and how you couldn’t shut a bathroom stall without a poster on the back teaching about prevention and safety. Wouldn’t it be great if we took that type of vast approach to shifting death culture?

Another maverick in the field, Suzanne O’Brien of Doulagivers, says there should be someone on every block who knows the end-of-life basics so that when somebody in your community is dying, they are supported.

Who do you think is the best at approaching death?

Well, the Buddhists, hands down. They’ve got the saying: “We are of the nature to get old; we are of the nature to suffer; we are of the nature to die.” Imagine if that’s how we started every morning—we wouldn’t be so shocked by death! There are people who think that aging is some kind of radical punishment or who feel entitled to live in a full healthy body forever. That’s just not our nature.

I would say that to prepare for death, you have to get your spiritual house in order, whatever that means to you. Life is finite, super fragile, and you are not entitled to anything! So, spend your time wisely and be grateful.

Complete Article ↪HERE↩!

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Toronto death doula helps take the fear out of dying

By Christine Sismondo

“Everyone dies and that is OK.”

Those six words are something of a mantra for Kayla Moryoussef, a Toronto “death worker” who has spent the last six years immersed in death and dying. As the program manager of the Toronto Home Hospice Association’s “Death Café” initiative, she holds sessions for people to talk about death (more about that later) and, in addition, works to help people experience a “good death.”

What might make a death good? That probably depends on the person, but one of the main things Moryoussef works to get people to let go of is fear.

And she’s not alone. While it’s still a relatively niche corner of the death care industry in Canada, there are an increasing number of people with “death doula” or “end-of-life-worker” practices and, like Moryoussef, most are participants in the “death-positivity” movement.

“It’s not that we should celebrate the fact that people died,” says Moryoussef, who works with Toronto’s Home Hospice Association and has a practice called Good Death (www.gooddeath.ca) through which she runs “Death Café” sessions in Toronto. “But we should accept the fact that people die and, even though it’s not a good thing, it’s an OK thing that’s a part of life. As soon as we recognize that, it becomes less scary.”

In a nutshell, the theory is that we’ve lost touch with death, which used to be more a part of life than it is now. Prior to, say, 100 years ago, people often died at home and, if they lived in small communities, neighbours and family dealt with a lot of pre- and post-mortem issues. As it became more “hands off,” it also became distant, invisible and shrouded in mystery. As a result, we’ve become more afraid of it. Some people use euphemisms, like “passed,” others speak in hushed tones, as though something shameful has happened. At death cafés, people learn to talk about it more openly, in hopes of getting past the fear and awkwardness.

“People get together to talk about dying and death,” says Moryoussef. “They’re not support groups, they’re not grief and bereavement groups, they’re literally just open forum events, although, since we realize that certain populations have different needs, we started to make some population-specific, so we have LGBTQ cafés and, in November, we’re having our first death café for people with chronic illness and chronic pain.”

Death cafés (or “death salons,” as they’re sometimes called) are one of the most successful components of the death positivity movement, says Dr. Katherine Arnup, retired professor at Carleton University and author of “Family Perspectives: Death and Dying in Canada,” a report published by the Vanier Institute of the Family.

“I just looked at the most recent stats, and there have been 9,261 death cafés in 65 countries,” says Arnup, pointing out that this is pretty good given that they only started eight years ago. “I’ve been to a few and it can actually be kind of fun, with a lot of laughter surprisingly. I mean, 65 countries is pretty impressive and there are other ones like “Death over Dinner” and “Death at a Bar,” you know, those kinds of things.”

There’s obviously a demand for a different conversation about death and dying than the one most of us have been having, but public and private sessions aren’t all that death workers offer. Moryoussef has been called upon to join families sitting in vigil and help dying people settle on a “legacy” — usually letters, gifts or memoirs that are to be given to loved ones, post-mortem. This, along with dying at home (when possible), is all part and parcel of the philosophy of the good death. Some death workers even help families who want a home funeral clean and preserve the body.

There are some parallels between this and the big midwifery resurgence (circa 1960-1990s) that saw feminists objecting to a medical system that tended to keep women in the dark and gave them few choices. The modern midwifery movement worked to rectify that by giving women information, encouraging them to be active in making a birth plan and, in some cases, even empowering themselves to choose to deliver at home, instead of the hospital.

So, since birth and death — the only two inevitabilities of life — arguably faced many of the same problems, why didn’t we notice that the death care industry needed some changes, too?

Dr. Arnup says demographics played a big part in the shift in attitudes toward death.

“I don’t like the stuff around the Baby Boomers so much, how you see claims that Boomers changed everything, from the way we eat to the way we die,” says Arnup. “But I think there’s something to be said for the fact that, just because there are so many of us, some have a sense that we can do anything and control things. Certainly some Boomers pushed for medical assistance in dying, which is now the law of the land, and they’re also the people who are supporting hospice.”

Boomers aren’t alone in wanting to avoid the indignities of, say, a protracted death in a hospital, but the sheer number of people in that demographic who hope for pain-free deaths, surrounded by friends and family and, ideally, in their own home, is starting to reshape the industry by supporting alternatives like Moryoussef’s.

And, as she says. It’s still sad — for everyone. It’s not a celebratory moment. But since letting go is a natural part of life, it’s also OK.

Complete Article ↪HERE↩!

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Why people choose medically assisted death revealed through conversations with nurses

Without an understanding of the complexities of medically assisted dying, it’s difficult for patients and families to make good decisions.

By and

Since Canada legalized Medical Assistance in Dying (MAiD) in 2016, as of Oct. 31, 2018, more than 6,700 Canadians have chosen medications to end their life.

Canadians who meet eligibility requirements can opt to self-administer or have a clinician administer these medications; the vast majority of people choosing MAiD have had their medications delivered by physicians or nurse practitioners. Canada is the first country to permit nurse practitioners to assess for medically assisted dying eligibility and to provide it.

The precise meaning and implications of MAiD — in particular, who can request medical assistance in dying in Canada — is still evolving through court rulings. Québec’s Supreme Court recently struck down the reasonably foreseeable death requirement under the Criminal Code and the end-of-life requirement under Québec’s Act Respecting End-of-Life Care.

Without the requirement of a reasonably foreseeable death, it is likely that other legal challenges will occur to extend assisted dying to other groups such as those whose sole underlying condition is severe mental illness.

Involvement of nurses

Our research has explored how the nursing profession is regulating the new area of responsibility towards medically assisted dying and how nursing ethics might guide policy and practical implications of nurses’ experiences.

Current legislation guards the right of health-care providers to conscientiously object to participation in MAiD. Nurses who do conscientiously object have a professional obligation to inform their employers of that objection, to report requests for MAiD, and to not abandon their clients. They also must ensure that their choices are based on “informed, reflective choice and are not based on prejudice, fear or convenience.”

The nurses who surround the process of medically assisted dying are an important source of insight into the complex and nuanced conversations our society needs to have about what it is like to choose, or be involved with, this new option at the end of life, and to be involved in supporting patients and their families toward death with compassion.

Researchers are following how the nursing profession is regulating nurses’ involvement in medically assisted dying.

Impoverished stereotypes

Our most recent research involved interviews with 59 nurse practitioners or registered nurses across Canada who accompanied patients and families along the journey of medically assisted dying or who had chosen to conscientiously object. Nurses worked across the spectrum of care in acute, residential and home-care settings.

During our research, and as we followed media stories, we became aware that as with other morally contentious issues, involvement in MAiD has often been discussed in one-dimensional ways: We noted stereotypes of health-care providers and patients who heroically conquer suffering, death and the system by taking control of what might otherwise have been a difficult and prolonged dying. We also observed caricatures of oppositional or religious right-wing persons and institutions who stand in the way of compassion and dignity.

Neither of these perspectives do justice to the complexities of MAiD as it is enacted. Without an understanding of those complexities, it is difficult for patients and families to make good decisions.

Nurses accounts of MAiD

Nurses told us that medically assisted dying is about so much more than the act itself. Medically assisted dying is a conversational journey with patients that lasts weeks or even months.

These discussions patients have over time with skilled and compassionate health-care professionals help to determine whether this is what they really want, or whether there are other options that might relieve their suffering.

Conversations between patients and their families are essential to negotiating a common understanding and moving forward together.

Indeed, evidence has suggested that these conversations, when experienced as meaningful by patients, may help to alleviate the suffering that leads to the request for a medically assisted death. This is particularly true if the suffering has arisen from the sense of isolation.

If and when patients decide to proceed with MAiD, then conversations are required to ensure that all of the organizational details (what, where, when, how) are patient-centred choices and that those who are involved know the part they are to play. After the act of medically assisted dying, it is compassionate conversations that support families in navigating an uncharted bereavement process.

So yes, medically assisted dying is about supporting autonomy, but it is also about understanding that autonomy exists within, and is shaped by, our constellation of relationships. We need to be talking more about the essential nature of what it means to have a good death.

Complex reasons to choose death

MAiD is often spoken of as the definitive intervention that ensures control over the alleviation of suffering. But, we have learned that MAiD can also be chosen as the antidote to a system that fails in compassion or equitable palliative care access.

It may seem the perfect solution for rural and remote patients who want a home death but are unable to find sufficient palliative care in their context.

It may seem the best option for patients who do not want to enter what they perceive to be the dehumanizing environments of residential care.

We heard a story of one man who had overstayed the time allowed on a palliative care unit. His doctor was a conscientious objector to medically assisted dying so each time health professionals planned to transfer him to residential care, the man asked for a medically assisted death. In doing so his stay in palliative care was assured.

We need to ensure that inequitable access or lack of caregiving networks do not become the default reasons for requesting a medically assisted death.

We heard other stories of patients who were not willing to tax their caregivers any longer, particularly if those caregivers sent cues that they were exhausted.

So, while medically assisted dying does promise control over people’s suffering, it can also be used as a form of resistance to a challenging system or depleted support.

We need to plan ways to ensure that inequitable access or lack of caregiving networks do not become the default reasons for requesting a medically assisted death.

Deeply impactful

Nurses emphasized how important it is to have preparatory conversations repeatedly. Organizing an assisted death is labour-intensive for all involved; it requires thoughtful and detailed planning within the care system and among families and support networks.

Often the first time that patients and families hear a detailed explanation of the process is when the nurse or the physician first assesses eligibility. Nurses said it is not uncommon for patients to experience uncertainty, to vacillate in their decision around an assisted death, or to experience fear at the moment of death.

It is tough to talk about your uncertainty when so many have invested time and energy into planning your death. At the time of assisted death, nurses and physicians go to extraordinary lengths to ensure a “good death” by normalizing the process, fulfilling patient wishes and providing exemplary clinical care.

Despite all of this, the death is often deeply impactful because it is so different than the death we have known where people gradually fade away. Persons receiving medically assisted death are fully there one minute, and gone the next.

Within minutes they go from talking, to unconscious, to a grey pallour that signifies death, and this “greying” affects even seasoned health-care providers. The death can provoke an array of overwhelming emotions in health-care providers and families alike, both positive and negative.

With the changing landscape of medically assisted dying in Canada, the need for reflective conversations becomes ever more urgent. We need to better understand how medically assisted dying changes the nature of death to which we have become accustomed and how those changes impact all those involved.

Complete Article ↪HERE↩!

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New program provides mobile end-of-life support to people in poverty

The new Palliative Outreach Resource Team (PORT) brings compassionate medical care and support to people living in poverty at end-of-life. Dr. Fraser Black,Island Medical Program’s associate dean of student affairs, is a team physician.

Death may be the great equalizer but the availability of good end-of-life care is rarely equitable. Now, a new mobile palliative care program designed to address that inequity is providing care and dignity to people with life-limiting illnesses who are homeless and living in poverty in Victoria. 

The Palliative Outreach Resource Team (PORT) is a collaboration of the University of Victoria, Island Health, Victoria Cool Aid and Victoria Hospice. PORT acts as a bridge between people with serious illness and their caregivers, palliative care, and other health and social support systems. 

The program is built upon lessons learned from a three-year study led by UVic palliative care researcher Kelli Stajduhar, lead investigator of the Equity in Palliative Approaches to Care program with the Institute on Aging & Lifelong Health and the School of Nursing. The study followed 25 people living homeless or barely housed while struggling with life-threatening medical conditions. The 2018 report Too little, too late: How we fail vulnerable Canadians as they die and what to do about it, found that homeless and barely housed people have to navigate many systems—health care, housing, social care—and that as their health declines, their ability to access these systems also declines. The big takeaway: despite a terminal diagnosis of cancer, heart failure or lung disease, those who were able to access palliative care actually experienced an improvement in quality of life. 

For PORT’s first year, the clinical team will be funded by Island Health and Saint Elizabeth Health Community Enterprise, a social enterprise with a commitment to end-of-life care for marginalized communities. Mirroring similar models in Toronto and Calgary, people can self-refer or be referred by their caregivers to a palliative care nurse and a physician who provide whole person care, manage the pain and symptoms related to life-limiting illness, support chosen family and caregivers, and provide grief and bereavement support. Chosen family and caregivers in this population include “street family” and shelter, housing, harm reduction, and peer and support workers from inner-city community organizations who are doing the bulk of end-of-life care for people living in poverty. 

The Vancouver Foundation is funding the UVic-led evaluation of the program, as well as the development of initiatives to increase access to and quality of palliative care in the inner city. The PORT team, which began service in July, has supported three deaths and is currently supporting seven people who are dying.

“For almost a decade, providers in our community have cobbled together resources to meet the needs of our clients who are living with unmet palliative needs,” says Grey Showler, director of health and support services at Cool Aid. “We are thrilled to see PORT come to life.”

“Over the next year, we will be implementing this model of palliative care in collaboration with organizations and people who have expertise in care and support for homeless and vulnerably housed people at end-of-life including street families,” says Jill Gerke, director of the palliative and end-of-life care program with Island Health. “We are using research and promising practices to inform the development of this model adapted to our community that bridges existing support and services.”

“Palliative care isn’t a ‘thing’ or a ‘place’ but an approach that focuses on whole-person care for the person, their family and community. This approach necessitates a community response where everyone sees their responsibility and their part in care for dying people,” says Stajduhar.

Complete Article ↪HERE↩!

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NC Women Embrace Ancient Practice of Death Caregiving

Durham, N.C., resident Omisade Burney-Scott (right) with fellow death doula Vivette Jefferies-Logan.

By Cynthia Greenlee

Ivette Jeffries-Logan and Omisade Burney-Scott are friends for life – and collaborators in death. Three years ago when a mutual friend realized she wouldn’t survive pancreatic cancer, the two central North Carolina women were within the circle of friends she summoned.

Over the course of about three months, the women stayed at Cynthia Brown’s side, as the community activist and one-time Durham City Council member went about the process of dying.

They rubbed her head, kept a watchful eye on her pain, and helped her decipher doctorspeak. And when her spirits appeared to lag, they’d tell her jokes and sing at her bedside.

This, Jeffries-Logan says, was a good death: “If I can help someone at the end of life heal and be clear, I will. There are some things we are required to do alone, but we are not isolated. We are community people. What happens to my nation happens to me. What happens to me happens to my nation.”

Jeffries-Logan and Burney-Scott are death doulas; their form of caregiving is both old and new. The ancient Greek word “doula,” meaning “woman servant” or “slave,” was repurposed in the 1960s to describe birth workers who offer encouragement, back rubs, and other assistance during childbirth.

These days, end-of-life doulas, sometimes called death midwives, are an emerging profession in the growing death positivity movement, which urges a paradigm shift for thinking and talking about death as natural and not inherently traumatic.

They provide nonmedical support to help ease the final transition for the terminally ill. But it’s not merely about that culminating moment, “The End.” They help the dying and their loved ones navigate death with all its “before and afters” – including sickness, acceptance, finding resources for all the legal housekeeping, funeral planning, and bereavement.
For Burney-Scott and Jeffries-Logan, it’s the highest calling.

Sisters in ritual, they performed sacraments of soothing and release drawn from their West African and Indigenous spiritual traditions. Burney-Scott is African American and was initiated in the West African Ife religious practice, and Jeffries-Logan is a member of the Occaneechi Band of the Saponi Nation, a tribe rooted in the North Carolina Piedmont region.

Being a death doula “is not fun. But it’s an honor,” says Burney-Scott, a healer and longtime advocate who most recently worked as a reproductive justice organizer in North Carolina.

She stumbled into the practice when her mother’s dear friend, a hospice nurse, showed Burney-Scott what to do at her mother’s passing.

“I didn’t want to do it,” she says. “The thing I feared most, from when I was a little girl and even when my mom was healthy, was losing my mother. She was that mom that all my friends would talk to, the mom who could let you know [you] were the most special person in the world even when she was yelling at you to do your laundry.”

Near the end, her mother made her retrieve a manila envelope containing her will, insurance information, deeds – the bureaucracy of death. But without ever using the word “doula,” her friend guided Burney-Scott in ushering out of this world the woman who had brought her into it.

“Aunt Cora” encouraged Burney-Scott to whisper her love in her mother’s ear, to hold her hand, play music, and to be present in “an organic practice.” One day, when her mother struggled to breathe, Cora assured Burney-Scott that she didn’t need to fetch doctors – that nothing was wrong.

“She’s leaving,” Cora told her, a simple statement that’s also a tenet of end-of-life care: Death can’t be controlled, but you can prepare for some aspects of it.

Because there is no universal or official training, no licensing and no regulation, there is no official estimate of how many death doulas operate in this country.

But death and dying are constant. And beyond the eulogies and coffins, there’s a clear and growing need for death-related services. The number of Medicare-approved home- and hospital-based hospices, for example, rose from barely 30 to slightly more than 3,400 between 1984 and 2009. A decade later, more than 4,500 exist, according to the Centers for Medicare & Medicaid Services.

Groups such as the International End-of-Life Doula Association and others train and certify doulas, providing hands-on experience, like a practicum. Still, many death doulas enter the field as Burney-Scott did, pressed into duty by a family member’s passing.

Few can make it into a full-time, paying job. Others have a background in the clergy or are people of faith, are volunteers involved in work with the sick and shut-in, or are shamans or healers.

Still others start end-of-life doulaing because they are nurses, midwives, or health care professionals who, through experience, have come to know that end of life is more than just what happens to your body.

Merilynne Rush, a nurse and home-birth midwife, co-founded Lifespan Doulas, an organization that trains and certifies end-of-life doulas. In three years, she says, the group has trained 200 people. She sees the need to educate and vet death doulas even while she thinks that community-trained doulas are valuable and necessary.

“There are so many people who are called in their communities [to do this] that no one should tell them they can’t,” Rush says. “I’d never be able to go into every community. That’s one reason for never having any kind of regulation that imposes a state-sanctioned structure that says you are in or out.

“At the same time, when you are working within a medical organization, they need to know you are OK and there are some standards,” she adds. “Training should never be mandatory, but optional.”

A diversity consultant who focuses on Native communities and trauma, Jeffries-Logan distrusts what she believes is a move toward professionalization.

Her death doula work is grounded in Indigenous customs, and communicating with the ancestors does not happen through curricula. Heeding a call from her ancestors, she did a traveling ceremony, designed to pave a deceased person’s road to the afterlife, for an infant relative who died before he turned a year old.

As part of a common tribal custom, she won’t speak the name of the deceased aloud for a year; to do so could keep the spirit tied to its temporal life – now a thing of the past – and distract it from the arduous journey to the ancestors.

Neither she nor Burney-Scott takes money for what they do. Rather, they extend their services to family and friends based on existing connections and an understanding that death is cultural and clinical. “It’s not like I was going to roll up and do this with just anyone. I don’t do shallow-ass relationships,” Jeffries-Logan says.

She questions what happens when the training moves out of informal community pedagogy and into a classroom.

“Who’s the certifying body? Who has the funds to pay for services?” she asks. She thinks of formalizing death doula work in the same vein as yoga, an Indian spiritual system that has been co-opted from communities of color and networks of caring to be dominated by White instructors who teach a fraction – the poses, the breathing – of the whole for pay.

Both women know that communities of color lag in accessing end-of-life care – whether due to cultural beliefs, experience and well-founded fear of racism in medical settings, lack of insurance or financial resources, or misconceptions about what’s available.

For example, Black people represented 8% of those receiving Medicare-funded hospice benefits in 2017, compared to 82% for White people.

In many Southern Black communities, people won’t talk about death, Burney-Scott offers. “There is truth in our mouth. You can manifest things with your word. Don’t talk about death [lest] you invite it in.”

That goes for other communities, as well. A 2010 study comparing Latino immigrant to White cancer caregivers found that the Latinos were surprised and even disturbed by transparent talk about death in hospice pamphlets and consultations.

Furthermore, Rush says that generally when death is imminent, “most people are overwhelmed and don’t know where to turn. They don’t even know that they can get hospice earlier. And even then, they may have a nurse come in for a few hours or an aide, but they aren’t there all the time. People have to rely on their community and network.”

And that’s just what Cynthia Brown did once she accepted that she wasn’t going to beat cancer, calling on the women her family members sometimes referred to as “Cynthia’s girls.”

“She invited us into the process from the very beginning. We swung into action on the logistical things: running errands, taking her to appointments, making meals,” Burney-Scott says.

“And then she said, ‘I want to cut my hair.’ She had 12 braids left. Each one of us cut two braids. Then, she called and said, ‘Hey, will you come over and help me write my memorial?”

She summoned Jeffries-Logan and another friend to help her assemble and bless her ancestors’ altar. With trademark precision and humor, she even planned who would cook at her funeral repast or meal: not her many loving White friends; she didn’t trust their chops in the kitchen.

Her death doulas and friends, in turn, called on each other, their own histories of loss, and their ancestors to help guide Brown through her own departure.

And when the end came, the friends all rolled to the hospital one last time. Burney-Scott donned her trademark white head wrap and packed a bag with crystals and Florida water, a citrusy blend believed to have calming properties.

Jeffries-Logan carried tobacco as an offering; red cedar to represent blood and life force; water from the Eno River, which courses through her tribal nation’s territory; and a ceremonial turtle rattle, used by tribes in special ceremonies.

“Cynthia fed me, I laid up on her couch, we carpooled to anti-racism trainings around the state,” Jeffries-Logan says, her eyes moist and a catch in her voice. “And when we did a ritual for my mother [who died from Alzheimer’s disease] in the ocean, Cynthia told me, since she had lost her parents at a young age and had to be like a mother to her younger siblings, she knew what it was like to be a motherless child. I was going to do whatever I could for her.”

She didn’t want her beloved sister-friend “scratching and clawing to stay here.” So she stroked the soles of Brown’s feet – which got cooler and cooler as death approached – not to bring back sensation, but to help untether her from this earth.

When Brown took her last breath, Burney-Scott’s and Jeffries-Logan’s hands were among those resting on her body. It was a fitting end: a social death for a community advocate who told her friends, “You continue to fight the good fight, and you have to promise me that you won’t leave anyone behind.”

Complete Article ↪HERE↩!

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Going gentle

A sociologist explains how to get the most out of the final months of life

By Bob Holmes

We are all going to die — and most of us will be able to see death coming, months or even years before it happens. That foreknowledge means we should embrace the end of life as a distinct life stage, just like childhood, adolescence and maturity, says Deborah Carr, a sociologist at Boston University. In the 2019 Annual Review of Sociology, Carr and her co-author, Elizabeth Luth of Weill Cornell Medicine in New York, explore how to make the most of this final stage in our lives.

Carr spoke with Knowable about how to find a good death. This conversation has been edited for length and clarity.

You claim that the end of life is a life stage that’s unique to the modern world. Why do you say that?

In past centuries, people tended to die younger, but more important, they tended to die quickly after they became ill. The end of life was basically a week, if that. People died at home. Today, with people dying of conditions like dementia and cancer, someone can experience a month or 10 years between diagnosis and actual death. And today, ventilators and feeding tubes allow people to prolong the length of their life, even if not the quality of life. So it’s a longer and more uncertain stage than in the past.

Is it fair to say that the objective of the end of life is to find a good death?

I think that is one of the main objectives. And that’s a new construct. In the days when people died suddenly, death was really a discrete event. You didn’t have to find ways to soothe them or provide music or other amenities. Today, because people tend to die over prolonged time periods, there’s a real emphasis on ensuring that the quality of that experience, whether it’s a week, a month or six months, is as positive as possible.

What are the components of a good death?

A good death typically has several pillars. First and foremost is freedom from pain. A sizeable portion of dying patients have physical pain and difficulty breathing. So the use of painkillers, palliative care, devices that allow someone to breathe comfortably, is very important.

Another is self-determination. Dying patients and their families want to have some control over the process. They want to choose where they die: at home or in a hospital. They want to choose what kind of treatment they get, whether they get life support.

And the third pillar is a broad category called death with dignity. People want to be treated as a whole person. They want their spiritual and psychological needs met. People even think about planning a funeral that has their favorite music and foods. They want to die being the human being they were in their younger years.

An increasing number of people in the US are dying in their homes or in hospices, as shown by these CDC data from 2003 and 2017. “Hospital” includes inpatient, outpatient, ER and dead on arrival. Hospice deaths in 2003 were just 0.2% of US deaths, compared with 7.8% in 2017.

Are there socioeconomic factors that affect access to a good death?

A good death, like a good life, is often a matter of socioeconomic privilege. There are stark race differences in satisfaction with pain treatment at the end of life. There are a lot of explanations for that, but one is discriminatory practices in prescribing painkillers.

Economic factors probably matter most for advance care planning. Low-income people don’t tend to have living wills. One of the main reasons is they can’t afford a lawyer, or they don’t go to a lawyer for a property will because they don’t own a home. Usually it’s when you go to make a will that the lawyer asks if you would like a living will as well.

Socially isolated people are especially vulnerable to a bad death. Family and loved ones are critical in advocating for quality care, for ensuring that one has a clergy person by their side, getting help, making decisions in a sensible way. That’s a lot more difficult for those who don’t have a spouse or child or close friend nearby. So social isolation is a risk factor for a low-quality death.

This is a life stage that most of us will pass into, and we can only do it once. What can we do to make it as good as possible?

Data show that as people get closer to death, they often change their minds about things. Their values change, they start to value things like comfort, spiritual comfort, relationships with family, and they stop fighting. There’s less of a desire to live longer, and more to live better. People need to think about priorities, think about what’s important to them and their families, and adhere to their values, whether personal or religious. That really guides a lot of decision-making. Open and honest communication, along with formal preparations like advance care planning, are healthy approaches that bring both patients and their families peace.

Families and patients can prepare for the end of life by doing things like writing a living will, and specifying what kind of treatment plan one wants, even specifying how much money to leave behind for one’s children and one’s spouse. All of that planning is guided by some sense of when one’s end is coming. That’s why it’s really important that doctors try to give some estimate of how long someone’s future lifespan is. But that’s very hard to do, both psychologically and technically.

The other thing is to communicate with the people close to you. People need support, both practically and emotionally. They need people to talk to, and literally to hold their hand, but they also need people to help them with decision-making, financial decisions, figuring out whether they’re going to spend their last week at home or in a hospital. That communication can be very helpful.

What is society doing right today?

We have rising numbers of people using hospice, which emphasizes soothing of pain and palliation, rather than treatment. I think that’s a real advance. Patients and family members who receive hospice care are almost uniformly positive about the social support they receive.

The proportion of Americans who have living wills, or who appoint a family member to be decision-maker, has skyrocketed. And under the Affordable Care Act, doctors are reimbursed for the time they spend discussing end-of-life issues with their Medicare patients. That’s really important, because doctors are so rushed today. Being reimbursed to take the time to ask older patients what they want has been another real advance. Some private insurance plans cover end-of-life discussions and others don’t. But nearly all older adults in the United States have Medicare, so in practice, nearly all older adults have this benefit. People under age 65 with a permanent disability also may qualify for Medicare, and consequently are eligible for this benefit.

For-profit hospices are on the rise in the US and nonprofit hospice numbers are falling, raising concerns about the quality of care provided and making it more difficult for some people to spend their final days at home. Data are for hospices that provide care to Medicare beneficiaries.

What are we doing wrong?

Despite all the positive trends, there are still millions of Americans who do not take steps to prepare adequately. It goes back to fear and discomfort about death. People are afraid to talk about these issues — they may think “Oh, it looks like I’m after my mom’s inheritance if I talk about it.” But these are conversations that everybody needs to have. Just like parents should have the drug conversation, people should have the death conversation, to talk about their hopes for what they will experience at the end of life. You aren’t going to achieve what you want unless you articulate it to people who can help you sort it out.

If we can normalize and destigmatize death, and recognize it as a normal part of life and aging, that will empower people to discuss these difficult issues.

The other problem is that for all the strengths of hospice, the number of nonprofit hospices has been diminishing dramatically, and the number that are for-profit has been increasing dramatically. The people who work for hospices are for the most part kind and loving workers, but the for-profits are motivated to make money, so they’re often treating only the patients who are less expensive to treat. They’re often not delivering care to rural residents who need a lot of travel time. They’re shifting hospice care to nursing homes, because that’s cheaper. But that means fewer people are given the opportunity to die at home if they wish. The move to for-profit hospice is undermining the quality of care, and it’s limiting who gets that care.

So far, we’ve been talking about the needs of people at the end of life. But does the final stage of life offer opportunities as well?

One is the opportunity to construct a “post-self,” the self people want to live on after they die. You often hear that people want to leave the world a better place. End of life is a time when they can really think about what kind of legacy they want to leave behind, whether it’s financial or emotional or social.

It’s also one of those rare opportunities to be wholly introspective. There’s long been a theory that as we get older we care less about possessions and the larger social network, and want to spend our final days dedicating our energy to those people who are nearest and dearest to us. This is an opportunity to show gratitude towards loved ones, to focus on spiritual needs, review one’s life and give love and support to those you’re going to leave behind. It’s sometimes important for dying people to tell family members, “I’m ready to go now, and you can be OK with it.” Having those difficult conversations can make people feel more prepared for the transition.

What are the areas we need to work on in the future?

A big one is physician-assisted suicide and euthanasia. That’s not something that’s taken hold in the US. There’s certainly attitudinal support for it — all the survey data show that people think if someone’s terminally ill, with no chance of recovery, and of sound mind, they should be given the option for euthanasia. I think that’s going to be one of our big questions over the next 10 years about end-of-life care.

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Exploring the End with a Death Doula

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Unlike most people, Anne-Marie Keppel isn’t afraid to talk about death. From her home office on Craftsbury Common, she works as a death doula and life cycle funeral celebrant through her businesses Stardust Meadow and Village Deathcare. When jewelry maker and Hardwick resident Cecilia Leibovitz lost Michael Secore — her partner of nearly 18 years — to cancer last September, Anne-Marie was there to help ease the transition and provide support to the family during their time of grief.

Now Cecilia makes memorial jewelry to commemorate loved ones, using pieces of clothing and personal artifacts. We sat down around Anne-Marie’s table with glasses of mint tea to talk about our experiences with death and why we are so afraid to discuss it openly.