From long-term care facilities to the halls of power, Patricia Pearson explores the agonizing but necessary process of rebranding death.

As I write, a dear relative is waiting to die. She sleeps a few feet away from me in a long-term care home. An oxygen tank hums and pulses by her bed. She has removed the connecting tubes repeatedly over the last few days, only to have them refitted by the staff. When a nurse roused her to change her sheets this morning, she blinked, first, in disorientation and then roared. It was a soft roar, as her breath is profoundly compromised by pneumonia, but the look on her face was plain. After three years of demeaning institutionalization in the interest of "health," she has had enough. A gracious, private woman of great dignity has been, for all intents and purposes, infantilized and broken by a society that refuses to normalize death. Over the last several weeks, I spoke to several people who are trying to change this conversation in our culture. "We need to come out of the bubble of denial," nurse and author Yvonne Heath told me, "because we're suffering." Next: Make death part of life Make death part of life Yvonne Heath remains astonished by a particular event in her decades-long nursing career. One afternoon, a patient came in for chemotherapy. She had end-of-life symptoms, but didn't appear to be aware of it. Heath was flabbergasted that no one had broken the news to her that she was dying. "I asked my colleagues, and the answer was, 'we have one doctor who is good about talking and the other one isn't. It depends which one you get.' That was just devastating to me. It's not OK." For Heath, a health-care system that avoids discussing death enters into deeply dysfunctional collusion with patients and families who are in denial themselves. "I've seen 105-year-olds getting blood transfusions," she says. "I've seen a man who was dying, and his wife bought him a new suitcase so that they could travel. I've had cancer patients who didn't tell their kids they had cancer, as if they'd never find out. I've seen terminal patients getting rounds of chemo when we knew a long time ago that it wasn't working." Heath decided to quit nursing and start advocating, penning a book, Love Your Life to Death, that encourages people to plan. She also joined CARP, in order to expand her outreach. "We all need to get better at this," she says, "including health-care professionals. Do doctors have an end-of-life plan? Most that I've talked to haven't done it! Let's just put our big boy pants on." Everyone, Heath believes, should assume they will die at any time and create what she calls a "self-care tool box." Write a will. Make decisions about cremation or burial. Prepare an advance care directive that guides others if you lose competence. Explore your beliefs about life after death. The consequences of not doing so can rip us apart. "We've had to call security on families who are fighting," Heath says, "because someone is on life support and half the family thinks he wants off while the other half says he never said that. Wouldn't it make more sense to prepare (for these issues) long before we're facing them?" Well, yes, but what keeps people from facing their mortality? Partly it's their anxiety about what, if anything, comes next. Partly it's the social taboo. We see it in the workplace. "People get three days off work when someone dies. I can't even get my head around that. You go back to work, and people do everything they can to avoid you. To say to your co-worker, 'I'm not that comfortable with dying,' is hard. I say—just show up. It might be messy, but we need to embrace being human. If we talked about it now, then it would be a natural conversation. We can't cure death and we can't fix grief but we can normalize them." Next: Coached through the maze Coached through the maze One of the great, unsung consequences of refusing to talk about death is that we all become naive children when faced with navigating the geriatric health-care system. Fate descends, and we have no clue. Where to go? Who to talk to? What to do? The system, being stressed, responds by taking advantage of us, which is how my relative wound up being transferred from a rehab hospital to one of the worst long-term care homes in her city. There's an interesting fix to this problem being offered by St. Elizabeth Healthcare's new online portal, Elizz.com. Although St. Elizabeth, a national non-profit home-care provider, visits 18,000 clients every day, they still saw lots of "unmet needs in caregiving," according to Allyson Kinsley, VP of strategy and brand. They decided to create an information portal and coaching service for families newly stunned by a grievous diagnosis. Visit the site, and click on the Caregiver Coach button. This will enable you to make an appointment with someone like Dania Millington, a long-time nurse who can lead you on a personal tour through the maze. After 32 years in nursing, Millington's contacts are deep, and she likes doing research. "I might let them know what grants are available for equipment like wheelchairs," she says, "or link them through to support groups, or respite care, or point them to resources on Virtual Hospice. They can talk to me at night when they have time to take a deep breath. I keep my hours flexible." Millington created her own checklist for families looking at long-term care options. What time of day is it when you visit? Are the clients dressed appropriately for that time of day? Taste the food. How is it? Are special diets provided? What does the facility do if the person can't eat in the dining room? Is there an odour in the home? What happens to the laundry, where is it done? Caregiver coaching is customized and personal, which is the beauty of the idea. "Some people are overwhelmed," says Millington. "Some just want reassurance that they're making the right choices. I make sure they understand what to expect (in medical conversations.) I make sure they ask the right questions, and that they have someone with them to act as a scribe so that they don't forget what the doctor said." One bedridden man fell out of bed and hurt his tooth. His daughter needed a dentist to come to the home, so an Elizz coach arranged that (rather miraculous) event. Another man, who had retained the service when his wife was dying, now found he just wanted a fifteen-minute call every day, so that he didn't feel quite so isolated in his grieving. St. Elizabeth is looking to expand the Elizz service, so that they have more coaches and use more languages. Ideally a son or daughter in Hong Kong could use the portal to secure advice about the health needs of a parent in, say, Vancouver. Next: A time to die A time to die Choice is extremely important to boomers, and nowhere does this desire play out with more gravitas than in choosing when to die. According to the journalist Sandra Martin, whose book A Good Death came out last spring, there are two basic models for assisted death. "There's the American model," she says, "which is doctor-assisted suicide, and you have to be terminally ill. You get a prescription and the doctor walks away. You take it or you don't take it. Not everybody does. But they like the reassurance of it." Then there's the European model, which includes euthanasia, and expands the eligibility. You may request that a doctor end your life if you are experiencing unendurable physical or mental suffering. You need not be terminally ill. A depressed woman in her 20s can request and receive a beaker of proverbial hemlock. Canada, by introducing Bill C-14 in April, has set physician-assisted dying within the cautious parameters of palliative care. Life will be ending soon, and the patient can take control over when. (In a minority of cases, for instance, pain can't be brought under control by the best of palliative doctors, so the federal government envisions those cases as the ideal candidates.) The narrowness of our proposed law frustrates Martin. "Why should these people have to suffer, if that's their choice?" she asks, of people who don't meet the standard of facing an immediately "foreseeable" death. "I have a friend with ALS. Does she want to wait it out or does she want to be able to say: 'I know when it will be enough, and then I want a physician to help me die'? This is about patient choice. It's not about doctor choice. And that's a big, big switch in Canada, between the merciful doctor who ups the morphine and the patient saying 'Hey, my life is awful and it's only going to get worse. I want to end it.'" I asked Martin what she would do, hypothetically, if she were diagnosed with an advanced and aggressive cancer. "I would hope I already had my affairs in order," she muses. "I would have had a conversation with my family. Maybe I'd say, 'Let's try one round of treatment, and I want a palliative care consult.' Because they can help with symptoms, and I want that connection right away. After that, I can't predict what I would do. Because we know that we change our minds." According to Dr. Manuel Borod, director of the division of supportive and palliative care programs at the McGill University Health Centre, people do change their minds. "To a person, after a couple of months, people see their end-of-life choices differently. Suddenly, every day is a little more precious. A lot of family issues and dynamics get resolved. Some people embrace death, some are petrified, some have a hard time and yet wind up having a good death. It's hard to predict. (But) the more palliative care service there is, the more this conversation can take place." The trouble is that only 15 to 30 per cent of Canadians have access to specialized palliative care, where experienced doctors like Borod can give them, as he puts it, "a chance to journey." For the rest of us, there are ICUs with harried residents rushing by and long-term care homes, see above. What worries Borod, though, is that the lack of discussion about end-of-life experiences may actually fuel the desire for assisted death. "There's this big fear of suffering, of being a burden, of futile treatment," he says. "But there's a complete disconnect between society's preoccupation with assisted death and our actually talking about dying." I asked Martin what she would do if she had dementia rather than cancer. "If I had dementia, I don't know," she reflected, "because—who's suffering? Your family is suffering, but are you suffering? Who knows? How is a doctor supposed to know? It's a very difficult business. Because we all say 'Oh my God...' but maybe it's not the worst thing in the world. The problem is that the Supreme Court was silent on advance directives." And the federal government has tiptoed around that issue too. "So there's going to be a lot of discussion about this. We need to get it figured out in this country. We need to have the choice." Next: Reinventing the rituals Reinventing the rituals "When death knocks on your door," says celebrant Sarah Kerr, "there's a whole lot of stuff that needs to be done. But then there's this other part, that's relational and emotional and spiritual. What does it mean, spiritually, for people who have no tradition? They want it to be held in a sacred way, but how? What's the thing that you reach to that's bigger?" Now that is a very good question. Kerr's answer was to become a "death midwife," using low-key and intimate rituals, loosely adapted from indigenous traditions, to guide families before, during and after a death. "Nobody wakes up in the morning and says, 'I need a death midwife,'" she observes dryly. "They don't know what they need. They often can't articulate it. But it doesn't matter how much you've expected the death, when it happens people are dumbstruck. They need someone to tell them what to do." Having received a doctorate focused on rites of initiation, Kerr offers the families who retain her a choreography to follow. "Death is an initiation," she says, "and like any initiation process we need a container. We go into a liminal space, but we can't hold that space for ourselves. In Jewish tradition, sitting shiva is carving out a space that says, 'This is different, and you're not expected to be normal.'" Between one and three months before someone dies, Kerr enters the picture and utters the word "dying," which is often the first time that the family has felt permission to hear or say that word. What do they say next? "Nobody knows how to say 'Oh my God, I love you, you've been a good friend.' Instead, they have small talk." She offers them a story instead. "When we approach death, we find ourselves on the shore of a river," she invites them to imagine. "There's a beach, and there are footprints on the sand. Those are our ancestors. They've gone across the river. We must help the dying person cross. We build a canoe out of our love, which is propelled by our grief. The paddles are shaped like tears. We launch the canoe." At the moment of death, she will lead a family through a ceremony. "We stand in a circle. Each person names an ancestor. You pull in all the dead. (This also reminds people that they've been through this before, that this is a much bigger process.) Each person will take a turn washing the hands or feet with lavender essential oil. Sometimes there is prayer, or song. Then I take my drum and bang it as if it were a receding canoe: boom, boom, boom, getting fainter." Says Kerr: "I'm carving a new path. There's no map." She adapts the rituals to suit the family, and stays with them as they prepare for a funeral, mindful of how to mend the tattered rawness of the grieving. Without ritual, we fall into bickering over logistics or succumb to alienating silences. Siblings fight. Tiny details spark storms of emotion. "You walk into a hospital room, and there's this pool of circulating grief, eddying around," she says. "The ceremony takes that grief and gives it a direction. Now it's used in honour of the person who has just died." Kerr and her fellow death midwives—a growing number—have seen what happens when people try to minimize ritual: no fuss, keep it simple. "People say, 'Oh, we're not going to have a funeral, we'll have a party.' So they do, and everyone stands around with a cocktail. But that's misguided. We think, if the funeral is quick and shallow, then our grief will be quick and shallow. It doesn't work that way." A version of this article appeared in the July/August 2016 issue with the headline, "Fade To Black," p. 74-78.

Patricia Pearson

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