Four years ago, a dear friend of the family, ‘Jane’, died of bowel cancer.
Jane had helped me around the house and looked after my first daughter, from the time she was a baby up until she went to school. We kept in touch over the years, and soon after my twins were born, she got the diagnosis.
The last time I saw her she was frail and could barely walk.
Sitting on the couch together in her daughter’s apartment, she took my hand and said, “Everything I have left I am wearing. I’ve got rid of the lot. I don’t want the kids to have to mess around with all my things when I’m gone”.
I was so impressed, not just by Jane’s organisation and foresight (which I knew all about), but by her generosity.
Leaving very few possessions behind was one of the greatest parting gifts she could give to her children.
Since then I’ve been thinking a lot about the things we leave behind when we die.
By ‘things’, I don’t mean the intangibles like the life lessons, memories and enduring love that sustain family and friends. Or the legacy of work done in our professional lives or the unpaid work in the community.
But the actual things. Candlesticks. Sporting trophies. Mugs.
You know, the kind of items that we occasionally wonder might be worth some mind-boggling sum if we ever managed to take them to an Antiques Roadshow. The millions, maybe billions of items, continuously gathering dust in the houses and apartments across the nation.
Of course, it has something to do with my stage of life.
As I head towards 50, I see many of my friends going through the emotionally draining and physically exhausting process of helping a sick or widowed parent pack up and sell a family home.
Friends tell me about the days and nights spent working through boxes and boxes of candlesticks, sporting trophies and mugs with an ailing or grieving parent.
And spending days working out what goes in the bin, gets donated to charity, given away or taken to the next dwelling, which is by necessity a half or a quarter of the size of the home they’re leaving.
It’s also a story echoed in the research I do with Australians.
And, on the whole, a story mostly told by daughters and granddaughters. In fact, I’ve found it’s largely these women responsible for this forced decluttering and managing of parents’ affairs at this time of life.
It takes its toll on these women, not just physically and emotionally, but even financially as they have to pull back from work to play this caring role.
It often comes at a time when the daughters are at the tail end of caring for their own children. A time when they thought they might have a chance to increase their paid work, or spend time and energy on personal goals.
Then suddenly, these women have responsibilities to parents almost as demanding as those associated with small children — with all the uncertainty and disruption, and far less of the joy that comes with looking after little ones.
In my role as a social researcher, I’ve met mothers trying to support a child through a final year of school — at the same time as helping a widowed parent find retirement living and pack up and sell their family home.
Death-induced decluttering. At the very moment you should be taking time and energy to grieve, you are knee-deep in cardboard boxes and vintage knick-knacks.
Decluttering is a global trend in affluent countries like Australia, led by a slew of ‘less is more’ advocates like author Marie Kondo and Oprah’s organising guru, Peter Walsh.
There’s Swedish death cleaning, döstädning, which is the practice of mindfully clearing out one’s own possessions during later years.
Not to mention the influential effects of the ABC’s War on Waste and how it’s challenging all of us to be more aware of what we buy and what we toss.
They’re all terrific developments. Although I worry that these messages sometimes get framed in terms of ‘good taste’ and ‘shame’.
Is it easier for some of us to declutter than it is for others? Is there a ‘clutter divide’ where the more affluent you are, the easier it is to live with less?
A single wealthy man who can afford a sparsely and elegantly decorated apartment in the centre of the city can certainly make do with fewer things, compared to a larger family living in the suburbs without social and cultural amenities within walking distance.
That said, visiting thousands of houses all over Australia for my work has made me realise many of us are living in homes full of things we find hard to get rid of — that is, until something forces us to.
Downsizing in a crisis (death, financial difficulty, illness) is doubly distressing.
I wonder whether it makes better sense to chuck the stuff and move to something smaller long before the inevitable happens.
If I am lucky enough to die of old age, I know what I want to leave behind. Saying goodbye to Jane on that couch confirmed it for me.
I will shuffle off this mortal coil with nothing left but a silk nightie, some precious paintings on the walls around me, and a handful of photos in my bony hands.
In the end, it wasn’t easy for Aaron McQ to decide when to die.
The 50-year-old Seattle man — a former world traveler, triathlete and cyclist — learned he had leukemia five years ago, followed by an even grimmer diagnosis in 2016: a rare form of amyotrophic lateral sclerosis, or ALS.
An interior and urban designer who legally changed his given name, McQ had been in pain and physical decline for years. Then the disease threatened to shut down his ability to swallow and breathe.
“It’s like waking up every morning in quicksand,” McQ said. “It’s terrifying.”
Last fall, McQ decided to use Washington state’s 2009 Death With Dignity law to end his suffering. The practice, approved in seven states and the District of Columbia, allows people with a projected six months or less to live to obtain lethal drugs to end their lives.
Although the option was legal, actually carrying it out was difficult for McQ, who agreed to discuss his deliberations with Kaiser Health News. He said he hoped to shed light on an often secretive and misunderstood practice.
“How does anyone get their head around dying?” he said, sitting in a wheelchair in his apartment in late January.
More than 3,000 people in the U.S. have chosen such deaths since Oregon’s law was enacted in 1997, according to state reports. Even as similar statutes have expanded to more venues — including, this year, Hawaii — it has remained controversial.
California’s End of Life Option Act, which took effect in 2016, was suspended for three weeks this spring after a court challenge, leaving hundreds of dying patients briefly in limbo.
Supporters say the practice gives patients control over their own fate in the face of a terminal illness. Detractors — including religious groups, disability-rights advocates and some doctors — argue such laws could put pressure on vulnerable people and that proper palliative care can ease end-of-life suffering.
Thin and wan, with silver hair and piercing blue eyes, McQ still could have passed for the model he once was. But his legs shook involuntarily beneath his dark jeans and his voice was hoarse with pain during a three-hour effort to tell his story.
“How do you decide?”
Last November, doctors told McQ he had six months or less to live. The choice, he said, became not death over a healthy life, but a “certain outcome” now over a prolonged, painful — and “unknowable” — end.
“I’m not wanting to die,” he said. “I’m very much alive, yet I’m suffering. And I would rather have it not be a surprise.”
In late December, a friend picked up a prescription for 100 tablets of the powerful sedative secobarbital. For weeks, the bottle holding the lethal dose sat on a shelf in his kitchen.
“I was not relaxed or confident until I had it in my cupboard,” McQ said.
At the time, he intended to take the drug in late February. Or maybe mid-March. He had wanted to get past Christmas, so he didn’t ruin anyone’s holiday. Then his sister and her family came for a visit. Then there was a friend’s birthday and another friend’s wedding.
“No one is ever really ready to die,” McQ said. “There will always be a reason not to.”
Many people who opt for medical aid-in-dying are so sick that they take the drugs as soon as they can, impatiently enduring state-mandated waiting periods to obtain the prescriptions.
Data from Oregon show that the median time from first request to death is 48 days, or about seven weeks. But it has ranged from two weeks to more than 2.7 years, records show.
Neurodegenerative diseases like ALS are particularly difficult, said Dr. Lonny Shavelson, a Berkeley, Calif., physician who has supervised nearly 90 aid-in-dying deaths in that state and advised more than 600 patients since 2016.
“It’s a very complicated decision week to week,” he said. “How do you decide? When do you decide? We don’t let them make that decision alone.”
Philosophically, McQ had been a supporter of aid-in-dying for years. He was the final caregiver for his grandmother, Milly, who he said begged for death to end pain at the end of her life.
By late spring, McQ’s own struggle was worse, said Karen Robinson, McQ’s health- care proxy and friend of two decades. He was admitted to home hospice care, but continued to decline. When a nurse recommended that McQ transfer to a hospice facility to control his growing pain, he decided he’d rather die at home.
“There was part of him that was hoping there were some other alternative,” Robinson said.
McQ considered several dates — and then changed his mind, partly because of the pressure that such a choice imposed.
“I don’t want to talk about it because I don’t want to feel like, now you gotta,” he said.
Coconut water, vodka, friends
Along with the pain, the risk of losing the physical ability to administer the medication himself, a legal requirement, was growing.
“I talked with him about losing his window of opportunity,” said Gretchen DeRoche, a volunteer with the group End of Life Washington, who said she has supervised hundreds of aid-in-dying deaths.
Finally, McQ chose the day: April 10. Robinson came over early in the afternoon, as she had often done, to drink coffee and talk — but not about his impending death.
“There was a part of him that didn’t want it to be like this is the day,” she said.
DeRoche arrived exactly at 5:30 p.m., per McQ’s instructions. At 6 p.m., McQ took anti-nausea medication. Because the lethal drugs are so bitter, there is some chance patients won’t keep them down.
Four close friends gathered, along with Robinson. They sorted through McQ’s CDs, trying to find appropriate music.
“He put on Marianne Faithfull. She’s amazing, but, it was too much,” Robinson said. “Then he put on James Taylor for, like, 15 seconds. It was ‘You’ve Got a Friend.’ I vetoed that. I said, ‘Aaron, you cannot do that if you want us to hold it together.’”
DeRoche went into a bedroom to open the 100 capsules of 100-milligram secobarbital, one at a time, a tedious process. Then she mixed the drug with coconut water and some vodka.
Just then, McQ started to cry, DeRoche said. “I think he was just kind of mourning the loss of the life he had expected to live.”
After that, he said he was ready. McQ asked everyone but DeRoche to leave the room. She told him he could still change his mind.
“I said, as I do to everyone: ‘If you take this medication, you’re going to go to sleep and you are not going to wake up,’” she recalled.
McQ drank half the drug mixture, paused and drank water. Then he swallowed the rest.
His friends returned, but remained silent.
“They just all gathered around him, each one touching him,” DeRoche said.
Very quickly, just before 7:30 p.m., it was over.
“It was just like one fluid motion,” DeRoche said. “He drank the medication, he went to sleep and he died in six minutes. I think we were all a little surprised he was gone that fast.”
The friends stayed until a funeral-home worker arrived.
“Once we got him into the vehicle, she asked, ‘What kind of music does he like?’” Robinson recalled. “It was just such a sweet, human thing for her to say. He was driving away, listening to jazz.”
McQ’s friends gathered June 30 in Seattle for a “happy memories celebration” of his life, Robinson said. She and a few others kayaked out into Lake Washington and left McQ’s ashes in the water, along with rose petals.
In the months since her friend’s death, Robinson has reflected on McQ’s decision to die. It was probably what he expected, she said, but not anything that he desired.
“It’s really tough to be alive and then not be alive because of your choice,” she said.
“If he had his wish, he would have died in his sleep.”
Pam Munro made the last days of her life public because she wanted people to know they could choose how and when they die, as she did.
The 62-year-old Blaine woman died July 17 – at home and surrounded by family and friends, 12 days after she voluntarily stopped eating and drinking instead of waiting to lose her mind and dignity to Alzheimer’s disease.
Bellingham resident Phyllis Shacter has been fulfilling the promise she made to her late husband, Alan Alberts, that she would share his decision to end his life by voluntarily stopping eating and drinking, or VSED, rather than entering the late stages of Alzheimer’s.
He died in April 2013, about 91/2 days after he refused food and water.
“How we die and what we say we want at our death is extremely important,” Shacter said, adding that Alberts died peacefully and consciously. “I want to have a good death. Who doesn’t?”
Both Munro and Alberts stopped drinking and eating when they still were mentally competent to do so. For those who choose this final exit, death usually occurs within one to three weeks.
People die from the effects of dehydration, which shuts down their kidneys and sends them into a coma, before they do from starvation.
Munro wanted to remind others who were ill of that choice, while they still had the ability to make it.
“You’re lost,” she said, “and then it’s too late.”
Her husband, Steve Munro, 66, said in an interview on Sept. 26: “I understood her fears. She didn’t want to be a vegetable, not know who people were.
“My job as a husband was to support what she wanted to do,” he added. “It wasn’t my choice. It was her choice.”
Deciding to hasten death by refusing to take food and liquids will be discussed at two events this month.
The first is on Oct. 14-15, at Seattle University School of Law. It is believed to be the first national conference on VSED, and it will delve into legal, ethical, religious and other considerations around the topic.
Alberts’ and Pam Munro’s decisions to go public with their choices are helping to bring greater attention to VSED as an end-of-life option, including for those who are terminally ill but don’t qualify for Washington state’s Death with Dignity measure, or don’t live in one of the five states that allow it.
Washington state’s law went into effect in March 2009. It allows terminally ill adults who have been told by their doctors that they have six months or less to live to ask for a prescription for lethal doses of medication.
Patients making the request must be mentally competent, must ask twice verbally and again in writing, and must be able to take the medication themselves. They can rescind their request at any time, and they must reside in Washington state.
The decision to forgo food and water has been recognized by courts, as long as the person making the decision is competent at the time.
Even though it’s an option in all 50 states, VSED hasn’t received as much attention as the hot-button topic of Death with Dignity.
He will be speaking at the VSED conference in Seattle. Meanwhile, End of Life Washington is assembling a team of people who will focus on it. The Seattle-based organization helps people plan for the last days of their lives.
Certain Death with Dignity requirements prevent people with Alzheimer’s and other forms of dementia from using the law when they enter the advanced stages.
Alzheimer’s attacks the brain. It is a progressive, irreversible neurological disorder that is the most common form of dementia. Most victims are older than 65, but Alzheimer’s can strike in the 40s or 50s.
Symptoms include gradual memory loss, impaired judgment, disorientation, personality change, difficulty in learning and loss of language skills. There’s no cure, though treatment can temporarily slow the worsening of symptoms. At the end, those with Alzheimer’s have to depend on others to take care of all their daily needs.
It is the sixth leading cause of death in the U.S., and people with Alzheimer’s live an average of eight years after their symptoms become noticeable to others. But survival can range from four to 20 years, according to the Alzheimer’s Association.
More than 5 million Americans have Alzheimer’s and that number is expected to skyrocket to as many as 16 million in 2050.
A window of time
VSED isn’t without controversy. Not everyone in Pam Munro’s family supported her decision, and some believe that hastening death this way is suicide.
Patients must be mentally competent, or in their right mind, to forgo food and drink. They must be able to indicate that they know doing so will lead to death, as Pam Munro did in written statements that were part of the documents she filled out as she planned for the end of her life.
Timing is important. People who choose it don’t want to start and die too soon. But if they wait into the advanced stages, dementia might make them forget that is what they wanted for themselves when their lives became unbearable.
“That window was getting smaller and smaller. Her Alzheimer’s was progressing quickly,” said Ashley Benem, a Bellingham death midwife who was helping guide and monitor Pam Munro in the last months of her life.
When Pam Munro was ready, she started eating less and then moved into a juice-only fast. Because of her Alzheimer’s she didn’t have much appetite anyway. A friend made her her last meal, a green smoothie. She stayed hydrated until the day she started VSED.
She had medical support from her doctor, who gave her a prescription for medication for pain and anxiety should she need it. She received foot massages and back rubs, spritzes of water to help relieve dry mouth, and a rotating shift of friends and family to be with her as she waited to die the way she wanted.
“I have never died, so this entire book is a fool’s advice,” writes Sallie Tisdale at the start of her latest work, Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying. However, there’s wisdom in knowing that you don’t know it all, and Tisdale’s enchanting prose searches as often as it instructs. In addition to being a writer, Tisdale is a Buddhist practitioner and teacher, a nurse, and an end-of-life educator who leads workshops on preparing for death; her depth of experience at the side of the dying is apparent throughout.
In these essays, Tisdale tells of the death of her Zen teacher, her mother, her close friend Carol, and others she has known, and asks questions many of us avoid: How do we define death? How do we manage physical pain or grief? Does our dignity depend on our health? This book, Tisdale writes, is meant to help you prepare for your own death and the deaths of those closest to you. It’s a travel guide to the end of life, a map of the territory, not a book of spiritual guidance. At its close, Tisdale even offers four appendixes for those seeking advice on the practicalities of death preparation. “My Death Plan,” “Advance Directives,” “Organ and Tissue Donation,” and “Assisted Death” prompt readers to consider their preferences for pain management, rituals and services, burial place, funerary rights, and more.
“If you die once, you will never have to die again,” Tisdale told Tricycle in February, recalling a teaching she heard when she was a young Zen student. At the time, she found the sentence perplexing. But as her practice progressed, the deep sense of release that she experienced—a “falling away of body and mind”—encouraged her to continue, and eventually led to the understanding that one can meet death as wholly as one aims to meet life. In the interview that follows, she tells Tricycle how she cultivated familiarity with her own mind while tending to her patients and loved ones, and why considering our own death just might make us happier.
—Marie Scarles, Associate Editor
Why did you feel compelled to write this book? I’ve been leading workshops and small groups about preparing for death at my Zen center for about a decade. I started to hear that people in other groups wanted to see the syllabus and material I was using. So I thought I could develop it into something that would be comprehensive and useful for people.
Preparing oneself to die is an inescapable challenge. It is also part and parcel of religious practice. I’m struck by the fact that as Buddhists we know this and yet it doesn’t come up in conversation all that often. We self-censor. We think, Oh, if you were a really good Buddhist you wouldn’t have those feelings, you’d wouldn’t have that fear, you wouldn’t be confused, you wouldn’t be struggling. You’d have it all figured out. This is very damaging to us. Our practice is about authenticity, rigorous self-examination, and honesty. If we’re honest, we’re going to admit that none of us is quite ready to die.
In the book, you write that when we’re speaking with someone who is dying, we need to avoid telling them what they should do or how they should feel. Are these “shoulds” another form of censorship? I’m going through this with a friend right now. I was with him last night, and one of the things that he’s really struggling with is his deep fear of self-extinction. I have to bite my tongue not to try to reassure him, not to try to take the fear away from him, but to let him explore it and feel it. It’s his, and his perspective on it is very different from mine. It’s not my life.
It’s so easy for us to pop in and say, “You should be feeling this,” or “Of course, you want me to do and say this.” But when we do, we’re missing the fact that nothing is more intimately the result of your whole life than how you meet death. We have to notice our urge to put our own veneer on someone else’s experience.
I’m sure I’m less uncertain and awkward than most of the people in the room, but I am still awkward and uncertain at times at that bedside: I’m not sure how to answer a question, or I’m looking for comfort with the silence, knowing there’s nothing to be done about certain things. I’m still just trying to meet the experience all the time, and stuff comes up for me, of course. It does for all of us. But it’s really myself that I’m encountering, the ways I think it should be. This is the way I want it to be for me. That fundamental egotism is still there, even at somebody else’s deathbed. You have to continually notice this fundamental egoism.
I imagine this process of getting to know your own experience—as well your nursing work—has helped you navigate encounters with death. Of course, every death is different. Yet there are remarkable similarities. We’re not that different from each other. You can really predict and expect certain things with the deaths from chronic illness. Even with sudden deaths, once the moment of death is reached, it’s the same moment. It’s something you recognize if you’ve seen it before. It’s like that line in the Theravada version of the Mahapari-nirvana Sutra where Ananda says that the hair on the back of his neck stood up when the Buddha died. There’s something we recognize there that goes really deep.
I also want to say that I had a lot of fun writing this book. I feel a lot of joy in the face of the preciousness of life—a kind of silly joy at times. Not only are there these rituals of crying and role change that every culture has around the deathbed, there’s also a deep worldwide culture of laughing at death, making fun of it, joking about it. I think it’s because it puts us face-to-face with the deep love that we feel for each other.
This reminds me of a 2007 study you mention in the bookthat says thinking about our death makes us happier.Yes, but they explained this happiness in a different way. They’re talking about terror management theory—the psychological belief that it is fundamental to human nature to be terrified of death and that you can’t escape the terror. Terror management theory states that you can’t not be afraid of death. I don’t believe that. I think we are all afraid of it until we know it. When we really know it, that’s what spares us from the terror. Terror management theory says that this is part of being human, and that we do a tremendous number of things to distract and protect ourselves from this fear. I think we’re healthier than that. In the Buddhist sense, we have the potential to be as healthy and whole around this as around everything else in our life.
An awareness of death comes and goes. We’re hyperaware of it at one moment, maybe when someone close to us is dying, and then it fades away again. How do we get to know death, or maintain this sense of awareness? I’m a Zen practitioner, so the language I’d use here is “the falling away of body and mind.” If we become familiar with what it means to arise and fall in every moment, if we become familiar with the emptiness of the purported self and we come to accept ourselves as a loosely cohering set of compounded things, we don’t believe in the self all the time. Of course, we constantly forget and remember this again, but over time we do become more familiar with ourselves as impermanent, and eventually we come to see the glory of that. The grace of impermanence is that we belong to everything, that we are not separated from anything, that we are not isolated. As I say in the book, we may be waves on an ocean, but we are waves that know we are waves. That’s what I mean by really getting to know death. It’s not just spending time at a bedside, being with people who are facing death, getting to know your reactions to it. In a practical sense, this can be very helpful. But the most effective thing in getting to know death isn’t being with dying people, but sensing myself as being a continually dying person.
There’s a saying I’ve been told as long as I’ve been practicing: “If you die once, you will never have to die again.” I heard that when I was very young, and I didn’t know what it meant, but I do now. When I first experienced the falling away of body and mind, even a tiny bit, it was as though I had been a tightly wound spring, and I thought, I’m going to continue to unwind forever. There was such relief and relaxation and peace in the realization that this constriction would keep letting go. I could just look forward to more and more relaxation. Throughout my life I have continued to feel that spring unwind, a little bit at a time. We have as many lifetimes as we need to get there. [Laughs.]
Still, I will feel afraid when it’s my time, when I get that bad diagnosis and I’m on that doctor’s table. I’m sure there will be resistance and fear. So let’s admit it: The resistance is there. The denial arises. Admit that. But there will also be curiosity and wonder at the point of facing death, just because I have looked at it enough.
Your experience as both a dharma teacher and a nurse comes through in the book: you’re writing from the perspective of someone who has witnessed countless deaths. Yes, but that doesn’t mean that I don’t feel uncertainty and awkwardness as well. We bring our whole self there. It’s significantly easier for me to do this with a client than a friend.
When my mother was dying, my siblings looked to me like, Well, you can take care of her. And I had to say, No. I’m the daughter here. I have to be the daughter here. Sometimes, no matter how much practical experience you have, you have to bow to the fact that this is not your role this time. You need to be the daughter or the mother or the friend. Most of us will lose some friends, our parents, our siblings—but not that often. So it’s always okay to be who we are in these moments. It’s always okay to have the weaknesses and the confusion and the questions that we have. It’s always all right to just say, “I don’t know. I’m not sure. I’m scared. I’m worried. I’m afraid of this. I’m not sure what to do next.” It’s okay for all of those feelings to be there. We really will trip ourselves up if we think we have to have it all together.
I was thinking about this last night while sitting at the bedside of my friend, someone I’ve known for 40 years. He’s really scared to die. We learn in our practice to deal with our own suffering. We learn to recognize other people’s suffering, and we learn to see the sources of suffering. But it’s really hard to learn that you can’t take somebody’s suffering away from them. It’s important that we remember the bodhisattva Guanyin, she who hears the cries of the world. She’s the witness; she’s not fixing everything all the time—she is just seeing it. There’s so much we can do for each other, but we can’t do it all. It’s not possible to entirely comfort and console another person. They have—we have—to feel pain. It is part of this life.
Caretakers’ Dos and Don’ts
An excerpt from Advice for Future Corpses (and Those Who Love Them)
If you are dying, you can say anything you want. You can say it when you want, and to whom you want. And you don’t have to say anything at all. Most of what I offer here is for the visitor, the companion, the helper. You have to follow some rules.
Think about how you explain ordinary information: the washing machine is on the fritz, we’re out of milk, I got a parking ticket today. Then think about how you communicate more urgent news: I wrecked the car. The power’s out. It’s different. Consider how you react in an argument. That’s different, too. Do you shut down, stop thinking? Do you start to cry or yell or leave the room? We all have a pattern for difficult conversations. If you are going to spend time with a dying person, know how you handle emotional scenes. What scares you? What makes it easier? Make a list. Practice!
Listening isn’t that complicated. It’s hard, but it’s not complicated. Few of us communicate really well. We think explaining ourselves is key, but listening is the most important part. Half the energy of caring for a dying person is listening, really listening. We are driven to think of ourselves first, and spend half the time appearing to listen while we prepare what we are going to say when it is our turn to speak. So: Listen. Say: This sounds very difficult. Say: I can tell how much thinking you’ve done about this matter. Say: Um-hmm. Tell me more. Keep bringing your mind back to the present moment when you stray. Invite detail. Ask questions and make it clear that you want to know. Anxiety makes it difficult to remember information, so repeat yourself if necessary. Speak in a calm and unhurried way. Reflect what you’ve heard, because you might have heard wrong: It sounds like you are saying you are afraid. Clarify, because you might have heard wrong: Let me make sure I understand. I think you are saying . . . If you can do these things, you are almost there. Be calm. Be nonjudgmental. Repeat.
If you are spending time with a person who is dying, you become a protector. You are the defender of modesty, privacy, silence, laughter, and many other things that can be lost in the daily tasks. You are the guardian of that person’s desires.
You will become a gatekeeper. Everyone needs a gatekeeper! Be the one who can say with a smile, Goodbye, Aunt Lucille. The one who can reach out a hand to the visitor and say, Time to go. We’ll call when we’re ready for another visit! while walking to the door.
Visitors come in many forms. Lots of friends will just drop in for a cup of tea and a few innings of the baseball game and take the garbage out when they go. Hurray for those friends. But you may also meet what the writer Glennon Doyle Melton calls the Fixer. This is the person who is certain that my situation is a question and she knows the answer. The Fixer is on the edge of her seat, ready with the solution. Melton went through a difficult breakup, and so she also knows the Comparer: the visitor who only appears to listen, who is just waiting for the chance to explain how his experience, or his nephew’s experience, or his aunt’s boyfriend’s cousin’s experience, compares to yours. Sooner or later a visitor arrives with what I think of as one-downmanship: the person with the sad face who spends their entire visit explaining why their troubles are worse than yours.
Set boundaries—for visitors, but also for yourself. Start with setting the boundaries for the visit, and do this every time. Say, I can stay for an hour, or I’ll be here until dinner, when Mary arrives. Before you leave, tell the person when you will be back. This removes the uncertainty, the unbounded edges that can make for a stressful conversation. A boundary gives both of you a space in which to be together. If you’re going to be coming regularly, you might offer a frank contract: when you will be there, for how long, to do what. If you can’t stand daytime television, can you watch Days of Our Lives anyway? If you don’t like cigarettes, can you sit easily with someone who smokes? Don’t say: I told you to quit smoking.
There are lots of ways to help besides making soup and sweeping the floor. (Those are often good things to do.) You can help people write letters or arrange a meeting. Offer to buy groceries or do the laundry, drive to an appointment or organize the bills. Offer only what you can deliver: I will stay with you through the night, or I will mail these letters for you. Be specific. (Then do what you say you will do. Not to put too fine a point on it, but you only get one shot at this.) Write all these things down and put it on the refrigerator. Your friend has enough to remember without keeping track of the calendar. Don’t say: Be sure to keep me posted.
Ask permission for everything. Be aware that you have the power here. (Be willing to discuss this fact.) Ask permission until your friend says, Quit asking for permission. Ask if a person wants to talk before you plunge in with the news of the day. Would they rather listen to music or play checkers or watch The Walking Dead? Do they want to take a shower? Do they want to eat something? If so, be clear. Vanilla or chocolate ice cream? is easier to answer than Is there anything you want to eat? Always ask for permission, but give permission, too. Permission to be sad, to be angry, to be sleepy or bored. To be something other than dying. To die.
Ask about privacy and confidentiality, favorite foods, how they want the room to be set up. Lights up, or down? Door open or closed? Music on or off? Agree on a signal for ending the visit. Know when to leave. Know when to be quiet.
You have to be honest with the dying person, but above all with yourself. There is nothing else worth doing here. Honesty is generosity, because when you are honest, you offer what you can truly give. Be honest about your own emotional state, without burdening the sick person. Resist your own impulses, your need for consolation, your wish for power, your urge for denial.
Know your limits. You have to grieve, and that means you have to go away sometimes. If you are hungry or need a rest, take care of yourself. If you’re anxious or worried, admit it. (Just don’t ask your friend to fix your feeling.) There’s a tricky balance between keeping your feelings in check and being authentic. You may try to downplay things, especially tears and anger, but you don’t have to hide them completely. On the other hand, you may be surprised by jealousy, irritation, and loneliness, and these are really yours to sort out elsewhere. Don’t say: Why didn’t you call me first? Why did you tell her before me?
Knowing these things is half the battle. The other half is watching and working with what happens.
A person who is ill may try to trigger your reactions. People may be testing whether you can handle talking about a difficult subject. Good listening goes a long way toward showing acceptance, and so does an open posture. Don’t stand over a person in bed or bustle around when they’re talking. Settle down, relax, keep your posture open, and try not to touch or soothe the difficulties away. You might feel a powerful urge to soothe painful feelings, to cover up. Don’t change the subject.
If there is a topic you absolutely cannot discuss, make that clear. Can you be still while a person cries? Don’t put a person in the difficult position of upsetting his caregiver. Don’t hide all your feelings under a bushel, but be a grown-up and manage your grown-up pain.
A person overwhelmed with illness may displace difficult feelings and shift attention away from the problem she is afraid to face. The big problem at hand. The ego is often about seven years old and prone to distractions when uncomfortable, like a kid who spills his milk just as you ask whether his chores are done. Adaptation takes many forms. Some people rationalize destructive behavior, ignore consequences. Some people will regress under stress, reverting to behaviors they used when they were much younger, refusing to take responsibility and looking for another person to act as the adult. There’s nothing inherently wrong with that; we all like someone else to be the adult sometimes. Just notice if it’s a pattern, and be careful. Watch the urge to become parental under stress, to take charge and try to manage the situation. Taking charge protects you from having to feel hopeless, but may not be what the person really needs.
Balance affect. If the person is hurried and talkative, you can speak slowly and listen. If they are withdrawn, you can start by doing the talking. If they are pacing, sit still. Notice incongruence. Is the person smiling while they tell a sad story? Are they clenching their fists while they say everything is fine? Dying tends to create incongruent feelings. You don’t have to challenge this. The person is working things out. Just be congruent in yourself. Don’t be afraid to cry a little sometimes; that’s congruent.
One way I might manage the hardest parts of being sick is to intellectualize my feelings. Perhaps I talk about the kind and brand of walker I want and ask you to check on prices. But I never say how it feels to need a walker (or a burial shroud). I may complain about how long it takes you to bring me lunch because I don’t want you to notice that I need help getting up from my chair. I don’t want to notice it, either. If I get angry at you for being late, I can briefly forget how it feels to need your help in the first place. Humans deflect when things hurt, and we are quick to project our struggles onto other people, using another as a kind of surrogate. I may talk about how Uncle Mario needs to use a walker now. I’m not just distracting you; I’m also testing you. I’m learning important information about how you feel about people who need walkers.
What not to say: Don’t talk like that. Let’s just talk about something happy. One of the most common ways we defend ourselves is by denial. We may simply deny what we’ve been told is true. Things not to say: My mother’s biopsy was negative. You look fine. Are you sure you’re sick? Denial is normal, but notice your own. A dying person may deny the truth for a long time. How often do we deny another’s denial? How often do we try to drag a person to the place where we think they should be, instead of meeting a person where he or she is? This is where open-ended responses help so much. Reflect on what you hear. Ask for more detail. Ask for what it means. Listen.
The room is dim and hushed. On the floor before me lies a shaggy bear of a dog. His name is Shep, and he’s some combination of Great Pyrenees and probably German shepherd. His owners, Anne and Rich, adopted him to guard their dairy goats from coyotes, but Shep wasn’t very good at his job and instead became a much loved house dog. I know this because I’ve been taking care of him, as his veterinarian, for his entire life. Now, as he is stretched out before me on the floor, I can see the effects of the cancer that is slowly ending his life.
Shep has osteosarcoma, an aggressive and destructive bone cancer. It starts somewhere in a long bone of the body, silently eating away at the leg until there is nothing left. The leg gives out in a painful and sudden fracture. The cancer then progresses slowly, eventually invading the lungs. Once the cancer is in the lungs, there is nothing left to be done. It is only a matter of days to weeks.
We discovered the cancer when Shep broke his leg. I had a long heart-to-heart with Anne and Rich. The typical treatment is amputation followed by chemotherapy. With that treatment, a good quality of life can be obtained for up to a year or more. There are no guarantees, of course—cancer will do what it wants. Anne and Rich spent two days deliberating the pros and cons, but since Shep was otherwise happy and healthy, they decided to amputate and pursue chemotherapy. He did great as a tripod. Often you had to look twice to notice that he was missing a leg.
That was nine months ago. Now, the chemo has stopped working, and Shep’s lungs are filled with cancer. As he lays on the floor before me, his breathing is labored. Thin, watery blood leaks from his nostrils, and he coughs occasionally. His eyes are dull, no longer the bright, shiny brown that I remember. He doesn’t enthusiastically investigate my hand for treats. His tail doesn’t thump when I softly murmur, “Shep’s a good boy.” The dog I knew isn’t here any longer. His body is a shell.
Anne and Rich are huddled on either side of him, weeping quietly. Anne runs his shaggy fur through her fingers over and over.
“It won’t hurt, right, Dr. Ashe?” she asks me again.
I shake my head gently. “No. I’m going to give him propofol to make him very sleepy, and then I am going to give him the blue injection. It will slowly stop his heart and breathing. He will drift off to sleep and then he will die. He will not feel anything,” I say. I show her the syringes again, even though we’ve already been over this. I use the word die because ambiguity is never good in these situations.
Anne takes a deep breath, looks at Rich, and then nods. It is time.
I place the Shep’s great paw in my lap, check the catheter, and slowly inject propofol. Shep’s breathing deepens, his eyes grow glassy, and his head falls to one side. I give the second injection. His breathing slows. Slows. Slows. And then it stops. Anne gives a strangled cry and lays across his still form. Rich is stoic but tears track slowly down his face. Both are focused on Shep’s body, so they miss what I see—the final gift my patients often give me. As the drugs take hold, I swear I glimpse relief in his brown eyes.
When I was a kid, I remember hearing my parents having whispered conversations about what I interpreted as “youth in Asia.” I’d be half dozing in the backseat of our car, driving through the night, the radio playing, and I would hear their low voices, the urgency with which they discussed it. At the time, I was uncertain why they were so concerned about the teen population of Japan. What did that have to do with death squads and socialized medicine? It wasn’t until years later that I realized what they were actually discussing—not “youth in Asia” but euthanasia. And it wasn’t until I became a veterinarian that I intimately understood euthanasia, the easy death.
Euthanasia was a hotly debated topic for those of us who grew up in the era of Dr. Jack Kevorkian. When I was 19, Kevorkian was convicted on charges of second-degree murder for assisting in the euthanasia of Thomas Youk. Youk was in the end stages of ALS, a disease that ravages the body but leaves the mind intact.
I paid little attention to these debates back then. I was bound for college, with the world unfurling before me. But these questions came back to haunt me almost 10 years later when I started my career as an emergency veterinarian. For what do veterinarians do besides vaccinate pets and treat diseases? We ease suffering. We help our animal companions to the threshold of death, and then we help them through that final, mysterious door. We euthanize sometimes on a daily basis. We do it for reasons of behavior, illness, injury.
And as we do it, we hold the hands of distraught owners and help them make that last painful decision. We offer words of comfort and listen to sacred stories. And we meet each pet’s eyes in those last moments, and what we see again and again is not fear but relief. Relaxation. The end of suffering has come at last. I have seen it firsthand, time and time again. The wordless thank you, as a beloved pet slips into whatever awaits us in the next life. The light dims and then is extinguished. As animal physicians, we are not afraid to acknowledge that death comes for us all and that we possess the ability to ease its final agonies.
We can talk about good deaths and bad deaths, cheating death or embracing it, but the one thing that we all seem to reach for is this: when we die, we want to do it our way.
Tony Smith* says his mother and father were lucky, if such a word can be used for death.
For while they both experienced long-running, debilitating, and often traumatic health problems in the years before each of them died, when the time came, they died the way they wanted to.
Mr Smith’s father died suddenly in bed from a massive heart attack. His mother chose to be kept comfortable in her final days and hours, no heroic measures undertaken to prolong her life, no resuscitation to bring her back from the brink. She was surrounded by her family as she exited this world at age 78, which was, as Tony says, “on her terms”.
Asking someone how they want to die is awkwardly similar to the stock line from a Bond villain. But at a certain point in our lives, it is one of the most important questions for an individual to ask themselves, for a doctor to ask their patient, and for a family to ask their ailing loved one.
This question can make the difference between someone seeing out their final hours in a peaceful setting — at home, or in a hospice, or in a care facility — surrounded by loved ones, with the only medical interventions being ones to ease discomfort; or dying in a loud, busy, bright emergency department.
We want to die at home
According to one of many surveys with similar results, a South Australian study found 70 per cent of people said they would want to die at home if they had a terminal illness and 19 per cent said a hospital.
But data from the Australian Institute of Health and Welfare showed that in 2011 about 35 per cent of older people died in an emergency care setting and just 3 per cent died in community care.
Dying in a hospital setting is also expensive; it accounts for nearly half of the health costs associated with dying in this group. According to a 2014 report from The Grattan Institute, each year more than $2 billion is spent on older people dying in hospital.
“About a third of all people who die in hospital have only one admission — the one in which they die,” the report’s authors wrote. “The average cost of that admission for those aged 50 and over is about $19,000.”
It’s easy to forget we have a choice
While some of us may want the full suite of medical options in our final days and hours, some of us want to avoid it at all costs. The thing we often forget is that we do have a choice.
Liz Callaghan, the chief executive of Palliative Care Australia, points out that while we go through an often exhaustive process of preparing for birth — going to classes, talking to our family, making a birth plan — when it comes to death there is little planning and very little conversation.
“We’re ignoring those conversations, and by ignoring them we’re leaving family and loved ones with no plan and no idea what we want at a very emotional and difficult time,” Ms Callaghan says.
The analogy with birth is a useful one because many of the same questions need to be considered:
Where would you prefer to be when you die?
What sort of medical care would you like?
What sort of interventions do you want to avoid?
Who would you like to have with you?
But there is another very important question to be considered for those facing the end of their life, and one that is less likely to apply to a birthing situation: who should speak for you when you cannot?
This is where advance care plans and enduring guardianships become vitally important.
These documents are intended to inform family, friends and medical professionals of your wishes about the sort of medical care and interventions you want at the end of your life, and to authorise certain individuals to speak on your behalf and ensure those wishes are respected.
Their form varies somewhat across states and territories, but one constant is that they are legally binding. A doctor aware of an advance care directive but who acts against its instructions could face charges of assault.
Advance care plans ask a specific series of questions intended to make us think about what interventions we would want and under what conditions.
These documents can and do evolve over time: what we might want when we are still reasonably independent and of sound mind may be very different from what we might want when illness has narrowed our options and the few choices remaining may be intensive and largely futile.
For example, the NSW advance care plan for individuals in residential care asks questions such as “If my heart or breathing stops due to old age or irreversible (not curable) health problems my choice, if CPR is a treatment option, would be to a) please try to restart my heart or breathing (Attempt CPR), b) Please allow me to die a natural death. Do not try to restart my heart or breathing (NO CPR), or c) I cannot answer this question. Let my doctor decide.”
It also asks individuals to think about how acceptable, difficult, or unbearable their life would be if, for example, they couldn’t recognise family or loved ones; have to be fed through a tube in their stomach; or cannot talk, read or write.
It provides space for individuals to write about their specific request with respect to medical care and in particular, life-prolonging treatments they do not want to have.
Mr Smith’s mother had had these conversations with her family, and was very clear about her wishes.
“Mum had strict DNR [do not resuscitate] instructions, she didn’t want any kind of life support, she didn’t want unnatural prolonging of her life,” he says. “Even when she stopped eating near the end she wasn’t force-fed or anything.”
Have the piece of paper and the conversation
But Ms Callaghan says the true benefit of advance care plans lies not in the pieces of paper but in the conversations associated with them.
“If you have those conversations and discussions with your next of kin, they will be confident that whatever they decide on your behalf is what you want,” she says.
It’s no coincidence that an online initiative to provide families with a framework for a discussion around end-of-life choices is called The Conversation Project.
As a GP of 30 years in the Western Australian town of Mandurah, Frank Jones has had that conversation many, many times with his patients. It’s not always comfortable, but he knows how important it is.
“People don’t like talking about their own mortality,” says Dr Jones, also president of the Royal Australian College of General Practitioners. “But I think it’s really important as people do age that we initiate this conversation.”
While we might be a death-defying society on the whole, Dr Jones finds that the vast majority of individuals who have life-limiting illnesses with little hope of meaningful recovery are very happy to have the conversation with their doctor, and happy to work through the one-page explainer he gives them.
The bigger hurdle comes when he suggests they also discuss it with their families.
As effective as an advance care directive might be in getting individuals to decide how they would prefer to die, it’s useless unless it is shared and at least acknowledged by that individual’s loved ones; the people who will be responsible for acting on those wishes.
Directives often missed in hospital panic
An advance care directive is also useless if the medical staff working with that individual don’t know about it.
Unfortunately, advance care directives are often missed in the panic and chaos that happens when someone with a chronic life-limiting illness is taken to hospital.
“In the middle of the night, if that elderly person has a fall, and is whisked off by ambulance to the hospital, the hospital has no idea, unless the family’s involved and unless they know there’s an advance health directive in place,” Dr Jones says.
Unless a person is actually carrying the advance directive with them when they go to hospital, or someone at that hospital knows their wishes, there’s every chance that health care professionals will do what they’re best at — try to save a life by any means possible.
This is why enduring guardianships are almost as important as advance care plans, because they identify the person or people who are legally authorised to speak on your behalf and communicate your wishes.
Those documents may need to be produced to establish that right in a situation where difficult decisions are being made, but they are an important part of ensuring that someone’s end-of-life choices are heard and acted on.
Better infrastructure needed to support end-of-life choices
The other challenge for our health system and society is setting up the infrastructure needed to fully support people’s end-of-life choices, particularly if that choice involves dying at home.
Dr Hal Swerissen, co-author of the ‘Dying Well‘ report from the Grattan Institute, says Australia needs a competent, home-based palliative care system that can support and take the pressure off carers.
“It is a challenge but there are now some really good home-based palliative care services, such as Silver Chain,” Dr Swerissen says.
“They take all the referrals for palliative care in Perth — so they do a lot of deaths each year — and they get 60 per cent of people [referred to them] dying at home.”
As well as enabling so many to see out their final weeks and months of life at home, services such as Silver Chain could also prove to be cost-neutral to the health system.
Dr Swerissen and co-author Stephen Duckett estimated that home-based care for the last three months of life would cost an average of $6,000 per person. If 30 per cent of all deaths were to occur at home, this would amount to an extra $237 million cost to the health care system.
But if these individuals are dying at home, they are avoiding hospital and residential care facilities, which Dr Swerissen and Dr Duckett calculated as a potential $233 million cost saving.
Mr Smith’s mother had hoped to die at home, but the level of medical care she needed at the end of her life meant she spent her final weeks in a palliative care facility. It wasn’t her first choice, but Mr Smith says the level of care she and the family received was excellent.
“We took turns, my siblings and I, to stay all night with her. As much as she wasn’t at home, we were there.”
Cancer has a way of forcing us to consider the inevitable notion of our own death, and whether you want to think about that or not, I want to suggest that it need not be dramatic or discomforting if we choose to simply observe the phenomenon as something both mysterious and certain.
When a lifelong friend told me she had terminal, inoperable cancer I searched long and hard for the genuine and unpretentious words to say, knowing I had only one shot at getting it right. I’ll call her by her first name, Laura.
I hired Laura to work for me in an entertainment agency I started in California back in 1978. We were both in our late 20s. She was talented and fun and did a great comedy routine as “Mae West.” We lost touch over the years, but she reappeared again when my wife was diagnosed with advanced ovarian cancer, since they had both been good friends. She checked in often as I did my best to be a supportive and loving caregiver for my wife who, despite our best efforts, died at the age of 47 in 1997.
Those of us with a cancer diagnosis, no matter the stage or grade, know all too well that people die from our disease. The end of a life is something we experience with increased frequency as we get older, and also as we come to know more and more people like us with varying degrees of cancer. Of course, many of us live long and fulfilling lives.
I want to share some of the actual words Laura and I exchanged by letter in her final days with some short excerpts, not simply to show the remarkable courage and insight she expressed, but to act as a visible example of how a conversation with a dying friend might evolve. I recall the distress I felt at having to say goodbye in my letter, knowing it would be the last exchange I’d have with her.
I wanted very badly to avoid being trite or patronizing, but most of all, I wanted to be open and honest and to find the words to express the sadness I felt to lose her, along with the joy of living my life while knowing her. Laura wrote:
“I found out today that my cancer has now grown significantly in my liver, along with other areas. At this point my oncologist said that he did not know of any other options for me as far as treatment, and I most likely have three months to live. He has taken me off the chemo I was on and has now written an order for Hospice. I am sorry to give you this news.”
I sat with this news for a day before writing back to her:
“I received the news that your cancer has advanced beyond the treatable stage and I’m writing to tell you that I love you and that no matter where you are in the universe, you are now and always will be in my thoughts, memories and in my heart. I know from my past experience with my wife, that many who know and love you are muted by grief and there is a great difficulty to find words for such things.”
I reminded her of a few incidents from our past working as entertainers – things we had laughed over long ago. I spoke briefly about our philosophical views of death and dying.
“My own cancer experience, along with my wife’s, has forever altered how I view life and death, and though I feel a tremendous sadness that you may soon be in another place where perhaps we can no longer be in touch, those feelings are tempered by my unshakable belief that life – just as it is – is absolute perfection. I know from our conversations that in having a complete trust in life’s ultimate plan and purpose as we both do, there is a comfort we feel in this mystery that lies ahead for you and me and all of us. Of course, it’s those we leave behind who suffer – perhaps the most – but life, at least from my perspective, is always about growth, even though it hurts like hell at times.
And finally, though we both had accepted that there was no turning back, I wanted her to know that she would not be forgotten.
“Being human, I have that familiar ferocious desire to hold on to all we love. I know I can’t hold on to you my friend, but I can always keep you close to my heart. There is a place there just for you. And I will never let that go. I promise.”
Stephen Murphy-Shigematsu is a psychologist in the Stanford University School of Medicine. He said, “Saying goodbye is learning what to hold onto and what to let go of. I firmly believe that by embracing our mortality with full awareness we can learn to experience life in a deeper and more passionate way. But the internal work of saying goodbye means finding a way to acknowledge that people come and go in our lives, leaving permanent imprints in our character; we inherit traits from everybody who crosses our paths or touches our hearts.”
Laura died five weeks after we exchanged our letters. Others in my life will die, too. And then one day of course, it will be my turn. And the only thing I know with any certainty is that these goodbyes are sure to repeat time and time again, until one day, that last goodbye will be the one reserved for me.