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.
Sallie Tisdale has advice for all of us future corpses. And that is to talk bluntly about death—especially our own.
Tisdale has worked in palliative care and is an end-of-life educator and Buddhist practitioner who holds workshops on death preparation. Her recent book, Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying, was named one of the New York Times Top Books of 2018. In it, Tisdale explains the realities that come with dying and the importance of normalizing conversations about death.
Ideas of impermanence and rebirth after death are tenets of Buddhism, yet Tisdale finds they don’t make the prospect of dying easier to grasp. At 62, she still finds it difficult to imagine herself as a future corpse. When death hits close to home, everything feels clumsy and uncertain, she said. “We’re beginners at this. Everything you know falls away.”
Rather than planning too meticulously for a “good death,” Tisdale suggests adopting a “mastery of death”—just coming to peace with the fact that we all must die eventually—because we can’t know how our death will go.
Still, that doesn’t mean you shouldn’t prepare. I spoke with Tisdale, and here’s what she suggested we can do.
Sydney Worth: How has your experience with end-of-life care affected the kind of advice you give in your workshops?
Sallie Tisdale: A lot of what I do as a nurse is to normalize [death]. One of the things I want people to consider if they’re going to be with someone who’s dying, is what do you bring into that room. Are you bringing ideas of what you think is a good death that might start to impact how you care for a person? A good death—most people think that means peaceful, no pain, and at home with family. That’s not realistic for a lot of people. I want people to get in touch with their own state and realize that we’re all carrying around some kind of idea about death.
Worth: Where do you think our avoidance of death comes from?
Tisdale: We in the modern West are in a unique position. In less than 100 years, [death has] disappeared from the home in the U.S. That change happened because families became more mobile and scattered. It’s the current generations that have not been exposed to it very much.
Worth: So, this lack of exposure is a result of modernization?
Tisdale: We have a fantasy that we’re going to die in our home like we did 150 years ago, but that world doesn’t exist anymore. [Death] may not look like the fantasy we’re still carrying around. A body gradually loses all of its integrity as we die. We need to say you might have diarrhea at 3 in the morning. How is that going to be handled? And how does that fit into your fantasy? I like this idea of a mastery of death meaning that I am at peace in myself. My dignity and self-worth have nothing to do with what happens to my body.
Worth: Can we start mastering death now?
Tisdale: Notice I didn’t say “master” death, because we don’t get to stop it. Mastery of death would mean acceptance. It’s this old Zen saying, “We love the china bowl because it will break.” We love the fragile. And that’s why we love each other—because we only have so much time. We see the fragility of change.
Worth: What are some things people forget to do before they die?
Tisdale: An awful lot of people never tell their friends or family or doctor what kind of death they want to have. There’s nothing more difficult than being handed this awkward object of a loved one’s corpse and being told what to do with it in a moment when you’re in emotional distress. Why would we consign our family to make that decision instead of being willing to talk about it?
Worth: When should we start preparing for death, then?
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.”
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.
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.
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.
Judy Chicago is well-aware she’s going to die one day — and she’s coming to terms with it. In her newest body of work, the 80-year-old feminist artist reckons with her own mortality, as well as the untimely death she fears for the planet’s threatened species and ecosystems.
“The End: A Meditation on Death and Extinction,” at the National Museum of Women in the Arts, consists of nearly 40 works of painted porcelain and glass, plus two large sculptures. It’s divided into three sequential sections: “Stages of Dying,” “Mortality” and “Extinction.” Chicago’s new series is “luminous,” according to exhibition curator Virginia Treanor. “I think it’s going to be a really contemplative experience. People will be moved by it, for sure.”
Here’s a closer look at five of the pieces on display.
Stages of Dying 5/6: Depression
An aged, bald woman cradles her face in her hands in this white porcelain piece, which is part of the “Stages of Dying” section of the exhibition. The figure personifies one of the five stages of grief: denial, anger, bargaining, depression and acceptance. These stages can apply both to those who are grieving the loss of someone and to those grappling with their own end. The older woman Chicago depicts is intended to represent an Everywoman, as well as the indiscriminate inevitability of death. “For so much of human history, the male figure has been the archetype of humanity,” says Treanor. “We say, ‘mankind.’ She wanted to shift that paradigm and make an Everywoman rather than an Everyman.”
A woman’s eyes are closed, her head resting on a pillow, hands clasped around a bouquet of lilies. The bronze sculpture is a self-portrait of the artist, who in the “Mortality” section of the show imagines different scenarios in which she might die. “Mortality Relief” pays homage to traditional death masks, which were used from the Middle Ages until the 19th century — before the advent of photography — to preserve someone’s likeness after death. Treanor describes the sculpture as “peaceful and serene.”
In the Shadow of Death
Thirty of the pieces in “The End” — including this one from the “Mortality” section — are kiln-fired paintings on black glass: a laborious process that requires multiple firings. Each time something’s put into the kiln, there’s a risk that it’s going to break, which means that the artist needs to be exacting. “In the Shadow of Death” is engraved with a quote from philosopher Todd May, reading, in part: “To forge our lives under the haunting shadow of death is both our reality and our opportunity,” with an emphasis on the word “opportunity.” It’s Chicago’s way of noting that there’s no need to fear death. “We have this opportunity in life because we know it’s finite,” Treanor says. “It’s going to end at some point.”
How Will I Die? #2
A woman, once again a self-portrait of Chicago, is curled into the fetal position, text wrapped around her body — “Will I leave as I arrived?” — in this kiln-fired painting on black glass. “Linking the experience of birth and death is powerful in a visual way, but also in an existential way,” Treanor says. She particularly lauds Chicago’s use of a wrinkled, aged figure. “This is classic Judy Chicago, and it’s one of the reasons I love her and her work so much,” she says. “She’s constantly pushing the boundaries. Nude women in art are a dime a dozen, right? But very rarely do we see an older nude woman. Very rarely do we see older women at all.”
In “Extinction,” the final section of the exhibit, Chicago turns from pondering individual death to the obliteration of entire ecosystems and species. A gaunt polar bear clings to a melting iceberg in the black-glass painting “Stranded.” Other works depict elephants killed for their tusks and trees flayed of their bark. Capturing that kind of destruction requires extensive research, which Chicago has described as an emotionally draining experience. “It was interesting to hear her speak about these works, and equating the physical exertion that went into them — like multiple [kiln] firings — with the emotional toll it took on her,” Treanor says. “She said it was really gut-wrenching.”
If you go/
Judy Chicago — The End: A Meditation on Death and Extinction
National Museum of Women in the Arts, 1250 New York Ave. NW. nmwa.org .
Dates: Through Jan. 20.
Admission: $10; $8 for seniors and students; free for members and visitors 18 and under.
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.
It’s not quite the peaceful drifting off I’d imagined for my dad.
By Harriet Brown
At age 86, my father had survived both colon cancer and a stroke that left him with aphasia. His mind was sharp, though, and he wasn’t depressed. A crack bridge player with a passion for Italian restaurants, he was popular at his assisted living facility even though he couldn’t speak much. He told me he’d lived a good life and wasn’t afraid of dying, and he didn’t want to go through any more medical trauma. No chemo, no radiation, no surgeries, no treatment.
His advance directive read DNR and DNI — do not resuscitate, do not intubate. No one would break his ribs doing CPR or make bruises bloom along his arms trying to find a vein. As his health-care proxy, I was completely on board. I’d read Sherwin Nuland’s “How We Die,” Atul Gawande’s “Being Mortal,” Elisabeth Kubler-Ross’s “On Death and Dying.” Comfort would be the priority and any pain would be “managed,” which I assumed meant erased.
Up to 80 percent of Americans die in hospitals or nursing homes, and a third spend at least 10 days in an intensive care unit before they die, many of them comatose or on a ventilator. A week after his sudden diagnosis of widespread metastatic disease, my father was lucky enough to get a bed in our town’s only hospice, a homey facility staffed with attentive and experienced caregivers. The alternative would have been a hospital bed in my living room, so it was a relief to know that my father was in the hands of professionals. They would know what to do.
And they did. The nurses and caregivers were gentle as they repositioned my father in bed, explaining each move even when it seemed he couldn’t hear or follow. When he could no longer swallow they squirted morphine into his cheek and rubbed it so the medicine would be absorbed. “This will make you feel better,” they would say, and my father would turn his head and open his chapped lips like a baby bird.
But his death was not the peaceful drifting away I’d always imagined, where you floated into a calm, morphine-induced sleep, your breath came slower and slower and then simply stopped. He vomited blood over and over. A lifelong stoic who never complained of pain — even when he’d broken a hip the year before — he twitched restlessly in bed, eyes closed, his brow furrowed and his skin clammy.
The magical “managing” of pain and nausea I’d anticipated turned out to be more aspirational than real. The hospice nurse prescribed one anti-nausea medication, then another, without success. Eventually, Ativan and Haldol settled the nausea, and morphine helped the pain. My father was lucky it helped; about 25 percent of people die in pain. One caregiver confided to me, “There are people whose pain we never get under control.”
For days we watched my father’s cheeks hollow, watched him pluck at the thin blanket that was all he could bear on his body. His kind brown eyes glazed over, and some trick of the light made them look blue under his half-closed lids. Sometimes he sat up suddenly, reaching forward, and then fell back on the pillows. I knew there was a name for this behavior, terminal restlessness, that it’s common during the dying process. I knew the gurgling sounds he made as he breathed came from his body’s inability to clear secretions, and that — according to hospice — it probably wasn’t uncomfortable for him.
Leaving the hospice facility one night, I told my 81-year-old aunt that I wished I had the nerve to put a pillow over his face. “I’ll stand guard at the door while you do,” she replied. Dying is hard work. And it’s hard to watch.
On the last night, I sat with my father until the summer sky began to darken. Then I gathered my belongings and leaned over the bed where he lay unresponsive, his eyes closed, his mouth half-open. I kissed his stubbled cheek. “Dad, I’m going now,” I told him. “It’s time for you to go too.” He died a few hours later. He was alone, as most people are when they die, so I don’t know if it was peaceful, if he made a sound or opened his eyes or just stopped breathing.
After he died, I was haunted by scenes of his suffering. I remembered looking out a hospital window nearly 30 years earlier with my newborn daughter in my arms, realizing that every one of the people I saw on the street had been born. For every person walking down Seventh Avenue, a woman had borne pain that tore her body open. It was a horrifying thought.
Drugs help with the pain of childbirth, but they can’t take it away completely. It’s the same with dying.
“Suffering is an ineradicable part of life, [like] fate and death,” wrote psychologist Viktor E. Frankl in his bestseller “Man’s Search for Meaning.” He was something of an expert, having survived nearly three years in a variety of Nazi camps.
Of course, my father’s suffering was nothing like the kind Frankl witnessed. But still, death, like birth, is a creaturely process, a force that wrenches us onward without consulting our preferences or respecting our sensibilities.
In the weeks after my father’s death, I began to understand in a deeper way the meaning of a good death. No drugs took away all my father’s physical pain and nausea. But in the care he was given, the morphine, the quiet words, the repositioning and cool cloths on his forehead, his suffering was addressed even if it couldn’t be “managed.”
And that, I think, is what we all want. Not just freedom from beeping machines and needles and the cold lighting of an ICU, though that matters, too. Not just the absence of pain, which isn’t possible for everyone. But the solace of being seen and heard and acknowledged brings comfort even in the face of deep suffering.
I hope it’s something we can remember as we move toward a society where more of us can have a truly good death.