Tag: End of Life Care

Posted on

How to prepare yourself for a good end of life

By Katy Butler

My parents lived good lives and expected to die good deaths. They exercised daily, ate plenty of fruits and vegetables, and kept, in their well-organized files, boilerplate advance health directives. But when he was 79, my beloved and seemingly vigorous father came up from his basement study, put on the kettle for tea, and had a devastating stroke. For the next 6½ years, my mother and I watched, heartbroken and largely helpless, as he descended into dementia, near-blindness and misery. To make matters worse, a pacemaker, thoughtlessly inserted two years after his stroke, unnecessarily prolonged his worst years on Earth.

That was a decade ago. Last month I turned 70. The peculiar problems of modern death — often overly medicalized and unnecessarily prolonged — are no longer abstractions to me. Even though I swim daily and take no medications, somewhere beyond the horizon, my death has saddled his horse and is heading my way. I want a better death than many of those I’ve recently seen.

In this I’m not alone. According to a 2017 Kaiser Foundation study, 7 in 10 Americans hope to die at home. But half die in nursing homes and hospitals, and more than a tenth are cruelly shuttled from one to the other in their final three days. Pain is a major barrier to a peaceful death, and nearly half of dying Americans suffer from uncontrolled pain. Nobody I know hopes to die in the soulless confines of an Intensive Care Unit. But more than a quarter of Medicare members cycle through one in their final month, and a fifth of Americans die in an ICU.

This state of affairs has many causes, among them fear, a culture-wide denial of death, ignorance of medicine’s limits, and a language barrier between medical staff and ordinary people. “They often feel abandoned at their greatest hour of need,” an HMO nurse told me about her many terminally ill patients. “But the oncologists tell us that their patients fire them if they are truthful.”

I don’t want this to be my story.

In the past three years, I’ve interviewed hundreds of people who have witnessed good deaths and hard ones, and I consulted top experts in end-of-life medicine. This is what I learned about how to get the best from our imperfect health care system and how to prepare for a good end of life.

Have a vision. Imagine what it would take you to die in peace and work back from there. Whom do you need to thank or forgive? Do you want to have someone reading to you from poetry or the Bible, or massaging your hands with oil, or simply holding them in silence? Talk about this with people you love.

Once you’ve got the basics clear, expand your horizons. A former forester, suffering from multiple sclerosis, was gurneyed into the woods in Washington state by volunteer firefighters for a last glimpse of his beloved trees. Something like this is possible if you face death while still enjoying life. Appoint someone with people skills and a backbone to speak for you if you can no longer speak for yourself.

Stay in charge. If your doctor isn’t curious about what matters to you or won’t tell you what’s going on in plain English, fire that doctor. That’s what Amy Berman did when a prominent oncologist told her to undergo chemotherapy, a mastectomy, radiation and then more chemo to treat her stage-four inflammatory breast cancer.

She settled on another oncologist who asked her, “What do you want to accomplish?” Berman said that she was aiming for a “Niagara Falls trajectory:” To live as well as possible for as long as possible, followed by a rapid final decline.

Berman, now 59, went on an estrogen suppressing pill. Eight years, later, she’s still working, she’s climbed the Great Wall of China, and has never been hospitalized. “Most doctors,” she says, “focus only on length of life. That’s not my only metric.”

Know the trajectory of your illness. If you face a frightening diagnosis, ask your doctor to draw a sketch tracking how you might feel and function during your illness and its treatments. A visual will yield far more helpful information than asking exactly how much time you have left.

When you become fragile, consider shifting your emphasis from cure to comfort and find an alternative to the emergency room.

And don’t be afraid to explore hospice sooner rather than later. It won’t make you die sooner, it’s covered by insurance, and you are more likely to die well, with your family supported and your pain under control.

Find your tribe and arrange caregivers. Dying at home is labor-intensive. Hospices provide home visits from nurses and other professionals, but your friends, relatives and hired aides will be the ones who empty bedpans and provide hands-on care. You don’t have to be rich, or a saint, to handle this well. You do need one fiercely committed person to act as a central tent pole and as many part-timers as you can marshal. People who die comfortable, well-supported deaths at home tend to have one of three things going for them: money, a rich social network of neighbors or friends, or a good government program (like PACE, the federal Program of All Inclusive Care for the Elderly).

Don’t wait until you’re at death’s door to explore your passions, deepen your relationships and find your posse. Do favors for your neighbors and mentor younger people. It doesn’t matter if you find your allies among fellow quilters, bridge-players, tai chi practitioners, or in the Christian Motorcyclists Association. You just need to share an activity face-to-face.

Take command of the space. No matter where death occurs, you can bring calm and meaning to the room. Don’t be afraid to rearrange the physical environment. Weddings have been held in ICUs so that a dying mother could witness the ceremony. In a hospital or nursing home, ask for a private room, get televisions and telemetry turned off, and stop the taking of vital signs.

Clean house: Hospice nurses often list five emotional tasks for the end of life: thank you, I love you, please forgive me, I forgive you, and goodbye. Do not underestimate the power of your emotional legacy, expressed in even a small, last-minute exchange. Kathy Duby of Mill Valley was raised on the East Coast by a violent alcoholic mother. She had no memory of ever hearing, “I love you.”

When Duby was in her 40s, her mother lay dying of breast cancer in a hospital in Boston. Over the phone, she told Duby, “Don’t come, I don’t want to see you.” Duby got on a plane anyway.

She walked into the hospital room to see a tiny figure curled up in bed — shrunken, yellow, bald, bronzed by jaundice, as Duby later wrote in a poem. Duby’s mother said aloud, “I love you and I’m sorry.”

Duby replied, “I love you and I’m sorry.”

“Those few moments,” Duby said, “Cleared up a lifetime of misunderstanding each other.”

Think of death as a rite of passage. In the days before effective medicine, our ancestors were guided by books and customs that framed dying as a spiritual ordeal rather than a medical event. Without abandoning the best of what modern medicine has to offer, return to that spirit.

Over the years, I’ve learned one thing: Those who contemplate their aging, vulnerability and mortality often live better lives and experience better deaths than those who don’t. They enroll in hospice earlier, and often feel and function better — and sometimes even live longer — than those who pursue maximum treatment.

We influence our lives, but we don’t control them, and the same goes for how they end. No matter how bravely you adapt to loss and how cannily you navigate our fragmented health system, dying will still represent the ultimate loss of control.

But you don’t have to be a passive victim. You retain moral agency. You can keep shaping your life all the way to its end — as long as you seize the power to imagine, to arrange support and to plan.

Complete Article ↪HERE↩!

Posted on

Changing the National Conversation around Death

School of Public Health symposium explores how we approach dying so we can live richer lives

SPH symposium panelist George Annas, a William Fairfield Warren Distinguished Professor, suggested that that people should consider prioritizing quality of life over quantity of years lived.

By Jillian McKoy

From anti-aging beauty regimens to strict diets and medical screenings, Western culture places immense value on the quality and preservation of life. Death, however, is a subject largely absent from daily conversation, and when raised, it evokes fear and anxiety.

But talking about death—and the policies and attitudes that shape it—is a healthy practice, speakers at the School of Public Health Dean’s Symposium Death and Dying: A Population Health Perspective concluded Tuesday. More than 150 people attended the daylong event, which gathered authors, scholars, professors, physicians, storytellers, and public health experts for a frank conversation about an inevitable part of being human.

“The data is clear that 100 percent of us will die,” Sandro Galea, Robert A. Knox Professor and dean of the SPH, said at the start of the program, to the amusement of the audience. “And that’s okay,” he continued. “Our goal should be to think about how we approach death and dying at the population level, so we can live the healthiest, fullest, richest lives we can until such time.”

The notion of a good death—what it constitutes and if it even exists—was a central component of the day’s conversation.

“Death and dying is an issue that is characterized by a great disconnect between the universal experience we all share witnessing the deaths of our loved ones and a reluctance to discuss honestly and publicly the policies and attitudes that have gotten in the way of ensuring the good deaths that we all no doubt seek,” said Jon Sawyer, executive director of the Pulitzer Center, which cohosted the symposium, along with BU’s College of Communication, College of Arts & Sciences Center for the Humanities, and Program for Global Health Storytelling.

Sallie Tisdale, a nurse at Providence ElderPlace, pushed back against the concept of a good death. She said the National Academy of Sciences, Engineering, and Medicine definition of a good death—one that is “free from avoidable pain and suffering and in general accord with patients’ and families’ wishes”—is a fantasy.

“Death is a solitary experience,” Tisdale said. “How can we as a group decide what avoidable distress and suffering is? Only the person in the deathbed knows what that means.” Instead, there is such a thing as a “mastered death,” she said, where people are able to “express themselves as long as possible.”

Many of the speakers’ analyses were informed by personal experience. Michael Hebb, author and founder of the Death Over Dinner movement, described how his initiative was born from a communication breakdown within his family after the death of his father. Hebb was 13, and his family members, unable to talk about the devastating loss, ate meals alone and mourned in silence.

But repression creates the perfect environment for disease, he said, while talking about death “makes you funnier, improves intimate relationships, and increases your capacity to love.”

Death and Dying: A Population Health Perspective panelists Barbara Moran (COM’96), WBUR senior producing editor (from left); George Annas, a BU William Fairfield Warren Distinguished Professor; Tracy A. Balboni, Harvard Medical School; author and physician Samuel Harrington; journalist Christopher de Bellaigue; and Amy Appleford, a CAS associate professor of English.

Jamila Michener, a Cornell University assistant professor of government, recounted how her mother’s battle with stage 3 pancreatic cancer was initially misdiagnosed as acid reflux years prior by doctors in her low-income Queens neighborhood. The cancer wasn’t discovered until she saw a doctor in a predominantly white neighborhood in Ithaca. (Michener’s mother survived the cancer and is still living.)

“My brother jokes that she lived because she fled where black people were,” Michener said. “The experience of dying wasn’t something she wanted to do in her own neighborhood.”

Other speakers explored ways that people can exercise some control over their own dying.

“Spirituality is a primary strategy for integrating death into the human identity,” said Tracy Balboni, a Harvard Medical School associate professor of radiation oncology. Citing oncology studies conducted at four academic centers in Boston, Balboni explained that 78 percent of participating cancer patients said that religion was an important factor in dealing with their illness and that it provided coping skills and a way to understand their illness and their life.

“We need a creative reintegration of spirituality into medicine in order to care for dying patients well,” she said.

Another speaker, journalist Christopher de Bellaigue, discussed the practice of physician-assisted death in the Netherlands, dubbed the “euthanasia capital of the world.” The practice is now widely supported therecafter it was legalized in 2002 for patients experiencing “unbearable suffering with no prospect of improvement.”

De Ballaigue noted that the majority of the Dutch population opposed euthanasia when it was first enacted into law: “What interests me is where legislation leads to a change in dynamic in character and narrative, or the other way around. Public attitudes follow legislation.”

George Annas, a William Fairfield Warren Distinguished Professor and an SPH professor of health law, ethics, and human rights, challenged the American cultural approach that humans have to do everything they can to live as long as possible.

“Avoiding death is the goal of modern medicine,” said Annas, director of the Center for Health Law, Ethics & Human Rights, arguing that people should instead consider prioritizing quality of life over quantity of years lived. He suggested that it would be valuable to shift a portion of research funding into “things that make life worth living, such as decent housing and public transportation.

“There is such a thing as dying healthy, and it can be a worthy public health goal,” Annas noted.

Author Barbara Ehrenreich (Nickel and Dimed: On (Not) Getting By in America and Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer) was scheduled to be a panelist, but was unable to attend. Sharon Begley, senior science writer at the Boston Globe publication STAT, a morning session moderator, read a portion of Ehrenreich’s prepared statement to the audience: “I’m 77 years old and I love cheeseburgers and Popeye’s Fried Chicken. I exercise when I feel like it, and I refuse to submit to medical tests and screenings recommended to all people over 50.”

This approach to her health, she explained, makes her an “outlier in our culture…where death is seen as some kind of failure.”

Panelists also discussed dealing with grief after a loved one dies, and the lack of resources available to properly treat mourning family members and friends. Katherine Keyes, a Columbia University Mailman School of Public Health associate professor of epidemiology and codirector of its Psychiatric Epidemiology Training Program, detailed how unexpected loss can lead to symptoms such as depression and to post-traumatic stress disorder.

“There’s something very specific to the loss experience itself,” said Keyes, who lost her ex-husband to suicide. “Losing someone close to us is very destabilizing.”

Afternoon session moderator Diane Gray, Acclivity Health Solutions chief innovation and advocacy officer and a board member of the Elisabeth Kübler-Ross Foundation, urged the audience to “become more engaged in the community of healing, empathetic, compassionate, caring individuals.

“There is no reason in our country for us to continue the legacy of shame and stigma that surrounds grief,” Gray said.

Complete Article ↪HERE↩!

Posted on

How can we deal with death better?

From DIY funeral services to death doulas, B.C. is on the leading edge of a trend that wants to make death a part of life, and a better experience for everyone. Meet the women leading the trend.

 

By Denise Ryan

There may be no table more full of life than the corner booth at Paul’s Omelettery on Granville Street, where a group of women are talking over breakfast about death.

Three of the women are licensed funeral directors, two specialize in end-of-life planning, one is a celebrant, another an apprentice death doula — someone who assists families before and after death, the way a midwife does with a birth.

They call themselves the D’Posse.

The name is a playful nod to the word “death,” but their aim is thoughtful and resolute: to transform the way we commemorate and bury our dead, to bring death back to life.

Glenn Hodges, manager of Vancouver’s Mountain View Cemetery, has dubbed them “the disruptors” — part of what he says is a growing number of end-of-life workers, many of them women, who are quietly, respectfully, and often joyfully, working to take death out of the hands of the corporate monopolies, and give it back to families.

Although many funeral homes in B.C. still bear the names of the families that originally established them, many of these are owned by Service Corporation International, a conglomerate headquartered in Texas. SCI owns 45 funeral homes in B.C., about a third of the funeral service providers in the province. (SCI, which trades on the New York Stock Exchange, has repeatedly tangled with consumer advocates over everything from its pricing to sales techniques.)

Funeral director Ngaio Davis spent 20 years working for a number of providers in the corporate funeral industry before breaking away to start Koru Cremation, Burial and Ceremony (korucremation.com), which she runs out of a cheerful space on Kent Avenue in Vancouver.

Like the other women at this monthly breakfast, Davis says she was drawn to the funeral industry because she wanted meaningful work. “I wanted to do something that felt worthwhile,” says Davis.

Coming face to face with death never made Davis uneasy — but the funeral industry did.

“There are a lot of wonderful, compassionate people in the corporate funeral homes,” says Davis. What bothered her, she says, was the focus on profit: “What’s the bottom line?”

Davis says one funeral home she worked for stipulated that commissioned sales staff be in every meeting with grief-stricken clients to have the “face time” to push extras. At another job interview, she was grilled on what her average sales “per call” were — this was not the work she wanted to be doing.

Lisa Hartley is a ‘celebrant’ who officiates at weddings as well as funerals.

‘What can I help you do?’

Despite decades of scrutiny, the North American funeral industry has changed little since Jessica Mitford’s 1963 expose, The American Way of Death, in which she called the funeral industry a “huge, macabre, and expensive practical joke on the American public.”

A big part of that macabre joke is the cost.

The average traditional funeral in Canada costs $10,000, according to Stephen Garrett of the Memorial Society of B.C., and GoFundMe counts funerals among its fastest-growing fundraising categories.

“From a basic cremation at about $1,200, costs range up to $15,000 or $20,000 — which is fine if it’s in line with your budget. But that’s where we get into problems with funeral homes pushing that on people,” said Garrett.

In addition to basics, such as registration of death, transportation, sheltering and disposition of the remains, costs — and funeral home profits — skyrocket once the bells and whistles are added: the expensive casket, which may be incinerated days later, embalming (not a legal necessity in B.C.), makeup, hairdressing, flowers, grief counselling, memorial, and follow-up house calls to sell products, such as future burial services, to survivors.

Five years ago, Davis decided to do something different.

Davis says her approach to death is informed by her Maori heritage. “Maori practices around death and dying are very strong. You are with your dead. You don’t just let them be taken away and be controlled by others. The family is the one who is crafting and planning what happens, and what will be the final ceremony.”

At Koru, the reception room is simply decorated with none of the trappings of a traditional funeral home: no sombre music, heavy curtains, or staff in dark suits.

Clients can plan as elaborate or as simple a funeral, ceremony and cremation or burial as they wish. Koru also specializes in green burials — biodegradable casket or a simple shroud, and no embalming — and will facilitate DIY, family-led or “home funerals.”

“This week, I’m looking after a family that wants to take their father and husband back home to his condo in North Vancouver. They want to have him there, they want to give him a sponge bath, dress him, and let him spend his last night there with his wife,” Davis explains.

Davis will transport the man and bring a special table so he can be laid out in his own home. “We will move him onto the table so it’s more comfortable for them to bathe him and dress him,” said Davis.

The next day, Davis will return with the casket, which will be placed in the condo’s common room because it won’t fit in the elevator.

“They are lining the casket with sheep wool that one of the kids brought from Scotland, and then we will go to the cemetery,” said Davis.

“His wife knows what she wants. They’ve been married for 60-plus years — they want those last moments together.”

At Paul’s Omelettery, over the warm clatter of breakfast dishes, cups and spoons, Lisa Hartley, a celebrant who officiates at weddings as well as funerals, recalls meeting Davis when her father-in-law died unexpectedly in his West End apartment.

His death had come quickly and the family was unprepared.

“We didn’t know what to do. Someone said, ‘Call Ngaio,’” says Hartley. “Her first question to us was, ‘What can I help you do?’”

They didn’t have to go to a funeral home, something Hartley was uncomfortable with.

“Ngaio came over to the apartment, and sat on the sunny balcony with her checklist, and we went through all the options.”

The family chose to keep Hartley’s father-in-law at home for a short period, and her husband decided he wanted to participate in the washing of his father’s body. “I never expected him to do something like that,” says Hartley. “But it really helped him.”

While the family gathered in the apartment, Davis completed the preparations.

“When she had him ready, she wrapped his body in a beautiful red velvet cloth, but she came to us first and said, ‘Peter is ready to go now.’”

Hartley was deeply moved by the experience, and now works closely with Davis and other alternative providers as a funeral celebrant. “My special interest is in sustainability in death care,” says Hartley. That means being more hands-on, in DIY and home funerals.

Hartley’s ceremony design process includes in-depth meetings with the client and family and friends to talk about the person. “It’s quite beautiful, and it’s often the start of the healing process. People get to tell stories about the person that has died. I recently had one person who said, ‘I feel better already,’” says Hartley.

Jennifer Mallmes is a death doula who founded the End-of-Life Doula program at Douglas College.

When death is expected, a death doula can help the family prepare for what Jennifer Mallmes, founder of the End-of-Life Doula program at Douglas College, calls “a gold-star death.”

“Planning really does help with the death and bereavement process, even when people don’t want to die,” said Mallmes. “Barring sudden or unexpected deaths, you can have some choice in how you go. Who do you want around? Who do you not want around?”

A death doula will help individuals and families faced with an illness or a diagnosis that a death is coming plan home care or hospice care, work with funeral services. They can also help with making what life is left fulfilling: “We can help with a life review, ask what are the things I still want to do? We might look at services to help them accomplish those things.”

Death isn’t just a business, it’s a way of life

Garrett said that although the funeral business is slow to change, Baby Boomers are pushing the trend toward the “reclamation” of death and dying.

“The Boomers demographic changed the world they lived in — they questioned authority, lived through the Summer of Love, built the environmental movement,” says Garrett. “We’re on our way out, and that’s going to change things, if only because of the large numbers.”

About 34,000 to 35,000 people a year die in B.C. “That death rate in the next 10 to 12 years is going to head north of 45,000,” says Garrett. “We’ve got 916,000 Baby Boomers living in British Columbia with only one way off the planet.”

Glen Hodges is the manager at Mountain View Cemetery in Vancouver.

Although Statistics Canada doesn’t keep numbers on the kinds of funerals people hold, Glen Hodges says he has seen changes in people’s attitude toward death. Part of that has been the renaissance of the city’s only cemetery.

Mountain View shut down briefly after running out of grave space in 1986, but a new master plan created more space. Mountain View built columbaria (condos for cremains) to house niches for cremated remains, and reclaimed unused graves from families — a complex and provincially regulated process that applied to plots purchased at least 50 years ago and never used by family members in that time.

Hodges says the city has also been working to re-establish the cemetery as a place for the living.

“A cemetery is not just a utilitarian place for disposal of the dead and keeping of public records,” said Hodges. “(It is also) a sacred place to remember and commemorate, and it has a larger role within the community.”

That includes family oriented community events, such as its annual All Souls Night, which draws up to 2,000 people.

“We invite people to wander into the cemetery to light candles and leave mementos for their loved ones and be in a contemplative atmosphere filled with candles and music and in a place that is safe for them to speak of the dead and talk with others.”

Mountain View doesn’t require grave liners, so green burials are possible, as well as reburials, an option that allows families to open the grave and reposition any remains still there so a new casket can be added.

Hodges regularly hosts free workshops hosted by D’Posse members Reena Lazar and Michelle Pante of Willow EOL (end of life).

The workshops, says Pante, are designed to help people figure out how embracing their mortality can change the way they live. “Our lives are limited, they are precious and finite, so we ask how does that fact affect how we live?” said Lazar.

The workshops help people explore their thoughts and feelings about death and guide them through the process of creating what Pante calls “heart wills,” or love letters for the family and friends who will survive them.

Their clientele ranges through all age groups, says Pante, although many are healthy and in the Boomer demographic.

Boomers may be fuelling the trend toward a more compassionate, affordable, personalized experience after their final exits, but for Davis and her growing network, death isn’t just a business — it’s a way of life.

Many find their way to Koru after a negative experience elsewhere, says Davis — whether it was sales pressure that shamed them into overspending, a service that didn’t reflect their loved one’s personality, or a makeup job that made them look like a stranger.

“Here was this very important moment in their lives, and they were robbed of it. It could be a special time, or it could be something you never want to go through again. So I’m just doing my little bit to change that.”

Stephen Garrett, seen here at Mountain View Cemetery in Vancouver, is the executive-director of the Memorial Society of British Columbia.

The Planner

Stephen Garrett, executive director of the Memorial Society of B.C., a non-profit society serving 240,000 members, believes that much of the expense and discomfort families inherit when a loved one dies can be avoided with good planning. To help people making final arrangements, Garrett has designed the “All Ready To Go Binder” to help with the death planning process.

“When my sons were 21 and 23, I invited them over for beer and pizza. I had the death binder in the middle of the table,” said Garrett. “They were a bit shocked — they didn’t want to think about me being dead and I didn’t want to think about it either — but as a responsible parent, this was my gift to them.”

The mood changed as he went through his wishes and let them know that he would be throwing in a family holiday: an all-expenses-paid trip to India, where he wants his ashes to be sprinkled in the Ganges River. Making a plan that’s personal, that includes opportunity for meaning, is part of what can make the process fun, said Garrett.

The binder is available on the society’s website for a nominal fee, and Garrett would like to see every family in B.C. have one.

The All Ready to Go Binder is a place for everything from your last will and testament, to advanced care directives, funeral arrangement forms, and other details such as people to call, copies of personal identification, and celebration-of-life plans.

The purpose of the Memorial Society is to help families prepare for and plan affordable services by partnering with ethical providers. The Memorial Society of B.C. offers lifetime membership for a one-time $50 fee. Members receive discounted prices of 15 to 30 per cent with participating funeral providers and access to support, advocacy and planning.

By The Numbers

$7,181: Average Cost of a traditional funeral (includes viewing, burial, embalming, transport of body)

28.6%: Percentage increase in average traditional funeral costs between 2004-2014

87%: Percentage increase in average traditional funeral costs between 1980-1989

90%: Cremation rate in B.C., up from 60% in 1986

Source: B.C. Memorial Society

Complete Article ↪HERE↩!

Posted on

How we can truly support those facing death or grieving over loss

By Dr. Nick Busing

Living well and dying well are what we all hope for. As we face dying and death, we need all the support we can get. It comes from many places, but we all know about the challenges associated with crowded emergency departments, the wait for hospital beds, the inadequate number of community placements, the stress on home care, the shortage of personal support workers … the list goes on.

Most Canadians (75 per cent in recent surveys) want to die at home, but most cannot. Most palliative care today is still provided in the hospital. The reasons are complex and include the lack of adequate home care palliative services and the limited support available to families and caregivers as they struggle to support a loved one at home. Conversations about dying and death are often left too late, when families and friends are in a state of panic, and are unsure what to do, and therefore turn to the local hospital to help them out.

In my more than 40 years as a family doctor, I learned so much from my patients and their families. When I provided end-of-life care in the home, I often noted the critical role of the family and friends in providing support and care to the dying person. Those families who spoke to the dying person well before the last days to understand the values, wishes and beliefs that were important, coped better, as I am sure the patient did as well. This reinforced for me that dying, death, care-giving and loss are social problems with medical aspects and not medical problems with social aspects.

We need to mobilize our communities (person by person, street by street, neighbourhood by neighbourhood) to become better able to support each other as we age. Compassionate Ottawa, a grassroots organization, only two years old, lives by the following vision: A compassionate Ottawa supports and empowers individuals, their families and their communities throughout life for dying and grieving well.Compassionate Ottawa was started by volunteers, and is sustained by volunteers, all of whom want to help our community normalize discussions about dying, death and grieving so that we can reach out to each other to provide support when needed.

The compassionate city movement was started in the United Kingdom and advocates for the role of the community in providing support and care. The long-term goal for us is to achieve a new model of care for those dealing with dying, death and grieving. Compassionate Ottawa is working with schools, workplaces and faith organizations to educate them about planning for dying and death so that they foster resiliency at the individual level. We are conducting advance care planning (ACP) workshops with many community groups. Our compassionate city strives to be one that recognizes that caring for each other should not be left to the health and social services but is the responsibility of all of us.

Amongst its initiatives, Compassionate Ottawa is proud to bring the HELP project (Healthy End of Life Project) to Canada from its origins in Australia. This three-year research project, with funding from the Mach-Gaensslen Foundation of Canada and led by researchers at Carleton University, will work with two faith groups and two community health centres in Ottawa to develop the skills and confidence to offer, ask for and accept help near the end of life. We will identify the challenges and successes we encounter and hope to have lessons that will be of use not only in Ottawa but also in communities across Canada.

We cannot continue to look only to the government’s health and social services to support our friends and relatives as they near the end of their lives. A push for more resiliency in the community would be a great benefit to all of us. And downstream it would mean fewer visits to the emergency rooms, fewer admissions to hospital, less demand for experts, less costly care and, hopefully, a more satisfied and stronger population.

Complete Article ↪HERE↩!

Posted on

Love at the end of life

By Maryse Zeidler

Meaghan Jackson has a surprising amount of insight into death and love for a 36-year-old.

“Working here, it’s changed me,” Jackson said from a wood-panelled room at the North Shore Hospice, where she has worked as a music therapist for four years.

“It’s completely changed the trajectory of my life.”

Meaghan Jackson is a music therapist at the North Shore Hospice. Jackson says working in palliative care has changed her life.

Jackson guides the residents at the hospice through their final days. She helps them write songs for their loved ones, and plays music for them as they take their last breaths.

Jackson has worked in “death and dying” since she was 22. She says her experiences prompted her to have children early in life, and focus on the present, no matter how difficult.

“I practice the art of being present when that present isn’t pleasant,” she said.

Health practitioners like Jackson say their experiences working with dying patients offer insights into love, relationships and how to focus on what matters.

A room at the B.C. Cancer Centre in Vancouver. Health practitioners say patients facing death tend to prioritize their relationships.

Each of the four practitioners interviewed for this story — a doctor, a social worker, a nurse and a music therapist — say dying patients tend to focus their energy and attention on the people they love.

Dr. Pippa Hawley, a palliative care doctor at the B.C. Cancer Centre, says she has seen couples and families reconcile after decades apart. She’s also seen several of her dying patients get married in the palliative care unit, sometimes in their beds.

Hawley says dying patients don’t have time to take loved ones for granted.

“All of that stuff that we bother with on a day-to-day basis just fades into irrelevancy,” she says.

Dying patients face many challenges with their partners, even when they prioritize love.

Melanie McDonald, a social worker who also works in palliative care at the B.C. Cancer Centre, says every couple she helps deals with death differently.

Couples who thrive during difficult moments are often those who can balance sadness with joy and love, she says.

Social worker Melanie McDonald says couples face many challenges when faced with death.

Nurse Jane Webley, who leads Vancouver Coastal Health’s palliative care unit, says the strongest couples are best at honestly communicating their needs, feelings and end-of-life plans.

Webley says patients who find it too difficult to discuss those matters are often the same ones who push loved ones away and face death alone.

“I think that’s a protection mechanism,” she said. “I would say 90 per cent of the time, it’s fear — and that fear is brought about by lack of communication.”

Dr. Hawley says some of her patients are never able to communicate their feelings and needs. Often, she says, that’s been a long-standing issue for them.

“People tend to die as they have lived,” she said.

Talking about death and end-of-life plans is often easier for older couples who are often more in touch with mortality. But Webley says it’s never too soon to have those difficult conversations.

Another challenge couples face when one is dying is learning to give or receive help, health practitioners say.

Social worker McDonald says people who aren’t used to being caregivers, typically men, often struggle when they’re suddenly thrust into that position. But most people learn to take on that role, she says.

Health practitioners say that learning to ask for help can be a steep learning curve for some patients.

Dr. Hawley says patients can face problems as they lose their independence. But she says it’s important for people to let their partners care for them.

“Don’t feel like you’re a burden,” she said. “It’s actually a wonderful gift to be allowed to care for somebody, to show them that you love them.”

All four of the health care practitioners say love at the end of life can take many shapes.

“Love looks differently in different situations,” says social worker McDonald. “Love shows up in the end of life in friendship and in families and pets and faith traditions and all sorts of different ways.”

Complete Article ↪HERE↩!

Posted on

A Good Enough Death

“Katy Butler is the author of “The Art of Dying Well,” from which this essay was excerpted in Tricycle magazine. (C) 2019 Katy Butler.”

What does it look like to die well?

By Katy Butler

If someone you love has died in a hospital, you may have seen modern death at its worst: overly medicalized, impersonal, and filled with unnecessary suffering. The experience can be a bitter lesson in Buddha’s most basic teaching: the more we try to avoid suffering (including death), the worse we often make it.

Even though roughly half of Americans die in hospitals and other institutions, most of us yearn to die at home, and perhaps to experience our leavetaking as a sacred rite of passage rather than a technological flail. You don’t have to be a saint, or be wealthy, or have a Rolodex of influential names to die well. But you do need to prepare. It helps to be a member of at least one “tribe,” to have someone who cares deeply about you, and to have doctors who tell you necessary truths so that you can decide when to stop aggressive treatment and opt for hospice care. Then those who care for you can arrange the basics: privacy, cleanliness, and quiet, the removal of beeping technologies, and adequate pain control. They can listen and express their love, and provide the hands-on bedside care hospice doesn’t cover.

From then on, a more realistic hope for our caregivers, and for ourselves when we are dying, may not be an idealized “good death” by a well-behaved patient, but a “good enough death,” where we keep the dying as comfortable and pain-free as possible, and leave room for the beautiful and the transcendent—which may or may not occur.

Hospice professionals often warn against high expectations. Things will probably not go as planned, and there comes a point when radical acceptance is far more important than goal-oriented activity. They don’t like the idea, inherent in some notions of the “good death,” of expecting the dying to put on a final ritual performance for the living, one marked by beautiful last words, final reconciliations, philosophical acceptance of the coming of death, lack of fear, and a peaceful letting go.

“In It Together” by Nancy Borowick. Nancy Borowick’s photo series (January 2013 through December 2014) depicts the experiences of Howie and Laurel Borowick, partners for over 30 years, who found their lives consumed by doctor appointments and the shared challenges of chemotherapy.
“The Calm before the Storm”
“His and Hers”

“I don’t tell families at the outset that their experience can be life-affirming, and leave them with positive feelings and memories,” said hospice nurse Jerry Soucy. “I say instead that we’re going to do all we can to make the best of a difficult situation, because that’s what we confront. The positive feelings sometimes happen in the moment, but are more likely to be of comfort in the days and months after a death.” This is what it took, and how it looked, for the family of John Masterson.

John was an artist and sign painter, the ninth of ten children born to a devout Catholic couple in Davenport, Iowa. His mother died when he was 8, and he and two of his sisters spent nearly a year in an orphanage. He moved to Seattle in his twenties, earned a black belt in karate, started a sign-painting business, and converted to Nichiren Shoshu, the branch of Buddhism whose primary practice is chanting. He never left his house without intoning three times in Japanese Nam Myoho Renge Kyo (“I Honor the Impeccable Teachings of the Lotus Sutra”).

He was 57 and living alone, without health insurance, when he developed multiple myeloma, an incurable blood cancer. He didn’t have much money: he was the kind of person who would spend hours teaching a fellow artist how to apply gold leaf, while falling behind on his paid work. But thanks to his large extended family, his karate practice, and his fierce dedication to his religion, he was part of several tribes. He was devoted to his three children—each the result of a serious relationship with a different woman—and they loved him equally fiercely. His youngest sister, Anne, a nurse who had followed him to Seattle, said he had “an uncanny ability to piss people off but make them love him loyally forever.”

When he first started feeling exhausted and looking gaunt, John tried to cure himself with herbs and chanting. By the time Anne got him to a doctor, he had a tumor the size of a half grapefruit protruding from his breastbone. Myeloma is sometimes called a “smoldering” cancer, because it can lie dormant for years. By the time John’s was diagnosed, his was in flames.

Huge plasma cells were piling up in his bone marrow, while other rogue blood cells dissolved bone and dumped calcium into his bloodstream, damaging his kidneys and brain function. He grew too weak and confused to work or drive. Bills piled up and his house fell into foreclosure. Anne, who worked the evening shift at a local hospital, moved him into her house and drove him to various government offices to apply for food stamps, Social Security Disability, and Medicaid. She would frequently get up early to stand in line outside social services offices with his paperwork in a portable plastic file box.

Medicaid paid for the drug thalidomide, which cleared the calcium from John’s bloodstream and helped his brain and kidneys recover. A blood cancer specialist at the University of Washington Medical Center told him that a bone marrow transplant might buy him time, perhaps even years. But myeloma eventually returns; the transplant doesn’t cure it. The treatment would temporarily destroy his immune system, could kill him, and would require weeks of recovery in sterile isolation. John decided against it, and was equally adamant that he’d never go on dialysis.

After six months on thalidomide, John recovered enough to move into a government-subsidized studio apartment near Pike Place Market. He loved being on his own again and wandered the market making videos of street musicians, which he’d post on Facebook. But Anne now had to drive across town to shop, cook, and clean for him.

The health plateau lasted more than a year. But by the fall of 2010, John could no longer bear one of thalidomide’s most difficult side effects, agonizing neuropathic foot pain. When he stopped taking the drug, he knew that calcium would once again build up in his bloodstream, and that he was turning toward his death.

An older sister and brother flew out from Iowa to help Anne care for him. One sibling would spend the night, and another, or John’s oldest daughter, Keely, a law student, would spend the day.

Christmas came and went. His sister Irene returned to Iowa and was replaced by another Iowa sister, Dottie, a devout Catholic. In early January, John developed a urinary tract infection and became severely constipated and unable to pee. Anne took him to the University of Washington Medical Center for what turned out to be the last time. His kidneys were failing and his bones so eaten away by disease that when he sneezed, he broke several ribs. Before he left the hospital, John met with a hematologist, a blood specialist, who asked Anne to step briefly out of the room.

Anne does not know exactly what was said. But most UW doctors are well trained in difficult conversations, thanks to a morally responsible institutional culture on end-of-life issues. Doctors at UW do not simply present patients with retail options, like items on a menu, and expect them to blindly pick. Its doctors believe they have an obligation to use their clinical experience to act in their patients’ best interests, and they are not afraid of making frank recommendations against futile and painful end-of-life treatments. When the meeting was over, the doctor told Anne that her brother “wanted to let nature take its course.” He would enroll in hospice. Anne drove him home.

John knew he was dying. He told Anne that he wanted to “feel everything” about the process, even the pain. He took what she called “this Buddhist perspective that if he suffered he would wipe out his bad karma. I said, ‘Nah, that’s just bullshit. You’ve done nothing wrong. The idea that we’re sinners or have to suffer is ludicrous.’” She looked her brother in the eye. She knew she was going to be dispensing his medications when he no longer could, and she wasn’t going to let him suffer. She told him, ‘You’re not going to have a choice.’”

The drive to treatment takes half an hour, and Howie and Laurel Borowick take turns, resting and driving, depending on who’s getting treatment that day. “The Drive to Chemo”
In Laurel’s final moments, her family assured her that all would be OK.
“Last Touch”

Anne said she “set an intention”: not to resist her brother’s dying, but to give him the most gentle death possible and to just let things unfold. On January 15, her birthday, she and John and a gaggle of other family members walked down to Pike Place Market to get a coffee and celebrate. John was barely able to walk: Anne kept close to him so that she could grab him if he fell. It was the last time he left the house.

The next morning, a Sunday, while Anne was sitting with John at his worktable, he looked out the window and asked her, “Do you think I’ll die today?” Anne said, “Well, Sundays are good days to die, but no, I don’t think it’s today.” It was the last fully coherent conversation she had with him.

He spent most of his last nine days in bed, as his kidneys failed and he grew increasingly confused. He didn’t seem afraid, but he was sometimes grumpy. He had increasing difficulty finding words and craved celery, which he called “the green thing.” He would ask Anne to take him to the bathroom, and then forget what he was supposed to do there. His daughter Keely took a leave of absence from law school, and Anne did the same from her job at the hospital. Fellow artists, fellow chanters, former students to whom he’d taught karate, nephews, nieces, and sign-painting clients visited, and Anne would prop him up on pillows to greet them.

Anne managed things, but with a light hand. She didn’t vet visitors, and they came at all hours. If she needed to change his sheets or turn him, she would ask whoever was there to help her, and show them how. That way, she knew that other people were capable of caring for him when she wasn’t there. “The ones that have the hardest time [with death] wring their hands and think they don’t know what to do,” she said. “But we do know what to do. Just think: If it were my body, what would I want? One of the worst things, when we’re grieving, is the sense that I didn’t do enough,” she said. “But if you get in and help, you won’t have that sense of helplessness.”

Each day John ate and spoke less and slept more, until he lost consciousness and stopped speaking entirely. To keep him from developing bedsores, Anne would turn him from one side to the other every two hours, change his diaper if necessary, and clean him, with the help of whoever was in the room. He’d groan when she moved him, so about a half an hour beforehand, she’d crush morphine and Ativan pills, mix them with water as the hospice nurse had showed her, and drip them into John’s mouth.

One morning her distraught brother Steve accused her of “killing” John by giving him too much morphine—a common fear among relatives, who sometimes can’t bear to up the dose as pain gets worse. At that moment, the hospice nurse arrived by chance, and calmly and gently explained to Steve, “Your brother is dying, and this is what dying looks like.”

The death was communal. People flowed in and out, night and day, talking of what they loved about John and things that annoyed them, bringing food, flowers, candles, and photographs until John’s worktable looked like a crowded altar. Buddhists lit incense and chanted. Someone set up a phone tree, someone else made arrangements with a funeral home, and one of the Buddhists planned the memorial service.

Most of the organizing, however, fell to Anne. It may take a village to die well, but it also takes one strong person willing to take ownership—the human equivalent of the central pole holding up a circus tent. In the final two weeks, she was in almost superhuman motion. She leaned in, she said, “into an element of the universe that knows more than I know. I was making it up as I went along. People contributed and it became very rich.

“That’s not to say there weren’t times when it was phenomenally stressful. I was dealing with all the logistics, and with my own mixed emotions about my brother. I was flooded with memories of our very complicated relationship, and at the same time I knew my intention was that he be laid to rest in the most gentle way possible.”

Hospice was a quiet support in the background. Over the two years of his illness, John’s care had perfectly integrated the medical and the practical, shifting seamlessly from prolonging his life and improving his functioning— as thalidomide and the doctors at UW had done—to relieving his suffering and attending his dying, as the hospice nurses and those who loved him had done.

There were no demons under the bed or angels above the headboard. Nor were there beeping monitors and high-tech machines. His dying was labor-intensive, as are most home deaths, and it was not without conflict.

A few days before he died, two siblings beseeched Anne to call a priest to give John last rites in the Catholic church. “It was a point of love for my siblings. They were concerned that John was going to burn in hell,” Anne said. “But John hated priests.” In tears, Anne called the Seattle church that handled such requests, and the priest, after a brief conversation, asked her to put her sister Dottie on the phone. Yes, Dottie acknowledged, John was a Buddhist. No, he hadn’t requested the sacraments. Yes, his children were adamantly opposed. No, the priest told her, under the circumstances he couldn’t come. It wasn’t John’s wish.

Ten days after the family’s last walk through Pike Place Market, the hospice nurse examined John early one morning and said, “He won’t be here tomorrow.” She was seeing incontrovertible physical signs: John’s lips and fingertips were blue and mottled. He hadn’t opened his eyes in days. His breathing was labored and irregular, but still oddly rhythmic, and he looked peaceful. The hospice nurse left. Anne, helped by John’s daughter Keely and his sister Dottie, washed and turned John and gave him his meds. Then they sat by his side. Anne had her hand on his lap.

“It was January in Seattle,” Anne said. “The sun was coming through the window and we could hear the market below beginning to wake up. We were just the three of us, talking and sharing our stories about him and the things we loved and didn’t love, the things that had pissed us off but now we laughed about. I can’t ever, in words, express the sweetness of that moment.

“He just had this one-room apartment with a little half-wall before the kitchen. I walked over to put water on to make coffee, and Keely said, ‘His breathing’s changed.’”Anne stopped, ran over, sat on the bed, and lifted her brother to a sitting position. He was light. She held him close, and during his last three breaths she chanted Nam Myoho Renge Kyo, as her brother had always done, three times, whenever he left his house. “I was really almost mouth-to-mouth chanting, and he died in my arms,” she said. “We just held him, and then my sister Dottie said her prayers over him.”

Anne sat next to her brother and said, “John, I did well.”

“I know he would not have been able to orchestrate it any better than how it unfolded,” she said.

“It was a profound experience for me. I realized what a good death could be.”

Complete Article ↪HERE↩!

Posted on

Palliative-care doctor left wondering ‘what if?’ after patient takes his own life

Dr. Susan MacDonald reflects on ‘Leo’ and whether she should have told him about assisted death

Dr. Susan MacDonald, a palliative care doctor in St. John’s, wonders if more could have been done for her patient ‘Leo.’

By Ariana Kelland

Susan MacDonald can’t quite pick one reason why Leo sticks with her, pushing her to put pen to paper to tell the story of her patient, and how she feels she failed him.

Asked what sets Leo — a pseudonym — apart from the rest, the palliative-care doctor shakes her head and sets her gaze away, “About Leo … I think, for one, I really liked him. I just really liked him.”

The second fact, MacDonald said, is that his death — suicide by taking his own opioids for insufferable pain — was not his only option.

Medically assisted death would have allowed Leo to die without having health-care professionals standing over him in a fruitless attempt at reversing his overdose, she said.

“He was such an intensely private person and his death was so public, and it didn’t need to be that way,” MacDonald said. “There were options. It just really struck me and made me think.”

MacDonald, an associate professor of medicine and family medicine at Memorial University of Newfoundland, reflected on her patient and what she could have done differently, in an article in the Canadian Medical Association Journal, titled Leo Died The Other Day.

The patient died within the last couple of years, MacDonald said, unable to comment further due to physician–patient confidentially. 

To raise — or not to raise — the option of assisted dying

For five months, she and Leo worked hard to control his intense nerve pain. But Leo’s death was inevitable. He had cancer, and by MacDonald’s estimation, had only weeks — maybe months — to live. 

Whether it was the physical pain that became too unbearable or the emotional struggle of his impending death, MacDonald doesn’t know why he took his own life. 

“It was a very distressing clinical case for me because I felt, at the end of the day, I hadn’t done the best I could for this particular patient,” MacDonald said.

“It was a reflective exercise for me to look back and say, ‘What could I have done better? Where are the problems? And what do we need to do about it?'”

MacDonald said she never raised medically assisted death as an option for Leo. Neither did he. But she wonders if some patients want to bring it up but can’t. 

Medically assisted death in Canada is legal. However, MacDonald said, there are no strict guidelines on how a doctor should broach the topic with a patient.

Changing the way she does things

Until Leo’s death, MacDonald would wait for the patient to bring it up, but the manner in which he died has her pausing for second thought. 

“There may be people like Leo, who could avail of that option if they knew about it or if it was offered to them,” she said.

“On the other hand, you have the potential to do harm by raising that question,” she said, adding doctors run the risk of offending patients by even mentioning assisted dying as a option.

Medically assisted death is legal in Canada. However, there are no strict rules guiding how physicians should broach the topic with patients.

“I’ve been doing this for 25 years now, and I still haven’t figured out always the right thing to say and the right thing to do for people.”

MacDonald hasn’t gotten many more inquires about medically assisted death since it was legalized, she said. “Not nearly as many as you’d think.”

Now, as she continues caring for those whose deaths are inescapable, she has Leo to think about.

Complete Article ↪HERE↩!