An advance directive is basically just a written document or a series of documents explaining what you want to have happen during your end-of-life care. It may outline a variety of topics, including your wishes for your care, should you become incapacitated, as well as naming proxies and a power of attorney.
These documents will need to be drawn up by attorneys and notarized. These aren’t likely things that you’ll want to have to spend a lot of time dealing with yourself, so it’s common to delegate these tasks to others.
There’s a lot of comfort in knowing that you’ve taken care of everything ahead of time and haven’t left big or stressful decisions to be made after you’re gone. If you’re up to it, it’s important to have legal documents drawn up..
A living will describes the type of healthcare you hope to receive and whether or not you’d like to remain on life support, and under what circumstances, should you become incapacitated and unable to make your own decisions. Living wills can be prepared by attorneys and should be prepared ahead of time.
Last wills are designed to designate property to beneficiaries, assign guardians for minor children, and elucidate any last wishes. This is somewhat different than a living trust, which will transfer property immediately, as opposed to after your death.
In some cases, it may be good for you to delegate these responsibilities instead to a proxy, in the event that you’re unwilling or incapable of making these decisions for yourself. This is often an adult-aged child or spouse, who will be tasked with making choices regarding your health care as things progress.
In some cases, it may be difficult to choose or assign proxy responsibilities to a private party, and you may wish instead to assign them to an attorney. This is extremely common and can be a relatively stress-free way of turning over technical responsibilities to someone else, allowing you to deal with your own comfort and emotional responsibilities.
A health care power of attorney is different than a general power of attorney, which provides for financial assistance after death. While both of these may be appropriate options, it’s important to distinguish between them.
Though it may be slightly unnerving, it’s important to decide what you want to happen to your body after you die. There are many options and considerations, depending on your culture and religious background.
If you want a funeral, or religious ritual to be performed after your death, you may want to arrange the ceremony yourself, or delegate the responsibility to a loved one. Make the arrangements in terms of churches, funeral homes, if it helps you to find closure.
If you want to be buried, decide where you want to be buried and which family members you want to be buried near, if you haven’t made those decisions already. Secure a burial plot by making a down payment, and make arrangements with a funeral home in your area, if necessary.
If you’d like your body to be donated, make sure your donor status is up to date and accurate, according to your wishes. Contact the university or foundation to which you want your remains donated and make the necessary arrangements.
Tomorrow, Part 3 — Making the Most of Your Last Days
In China there is a traditional belief that dying people bring bad luck.
Perhaps this explains why Song Tang Hospice, China’s first palliative care center, has had to move seven times in the past 29 years. Once, dozens of protesters, who blamed the hospice for bringing a curse on the neighborhood, attacked it and smashed its windows. Staff had to move more than a hundred terminally ill patients out at midnight. Some patients were taking their IV drips down the road with them, while others were huddled together crying, worrying about whether they would have a place to stay before they died. After hours of negotiations and a deal to increase the rent on the property, the masses retreated before sunrise.
Li Songtang, the center’s founder, recalls that even his wife once balked at the thought of death: Two decades ago she required him change out of his work clothes before stepping into their home.
According to Li, the Chinese fear death so much that they’d prefer to run away from it rather than have to think about it at all. In the case of palliative care, cultural taboos related to death also play a significant role. Take, for example, the quintessentially Chinese concept of filial piety: Children who want to be seen to “do the right thing” for their ailing parents will reject palliative care and insist on more aggressive treatment, trying to preserve life at all costs.
Yet no matter how much they’re ignored, death and terminal diseases won’t be defied. Non-communicable ailments such as cancer, cardiovascular disease, and respiratory disease account for four out of every five deaths in China, according to statistics from the World Health Organization.
Palliative care — sometimes called “comfort care” because the aim is to provide relief, and not a cure, to patients with terminal diseases like cancer — is hard to come by in China. According to a 2015 global studyof death by The Economist, China ranked 69 out of 80 countries in terms of palliative health care environment — below average across five key indicators, including quality and affordability of care, as well as community engagement.
China’s medical system in general is still developing. While the country has pledged to provide affordable and high-quality health care to all citizens by 2020, it still only spends around 5.5 percent of its GDP on health care, while the United Kingdom, for example, spends 9 percent.
The Economist report described the development of palliative care in China as “slow” and access to it as “limited.” It noted that apart from the country’s 400 hospitals that specialize in treating cancer, there are only a handful of charity hospitals and community health centers that offer end-of-life care.
Song Tang is one of these non-governmental facilities, and it has been the last stop for about 38,000 terminally ill patients, the youngest being a 5-month-old girl, since it opened its doors in 1987.
Chen Wenjie is one person whose death was made more bearable through palliative care at Song Tang. In 2008, Chen suffered a serious stroke and spent one month in the intensive care unit at Wujing Hospital in Beijing. She was tethered to an oxygen tank, a urinary catheter, and nasogastric tubes. Chen’s husband, Yu Haifeng, couldn’t bear to see her red, swollen body. “I’ve never seen her endure so much suffering,” Yu told Sixth Tone. “I was so afraid that her frail body would not be able to handle so much stress.”
The doctors gave Chen seven months to live. After her diagnosis, no hospital in Beijing would accept her — in public hospitals, patients are required to leave within 10 days of an operation.
Luo Jilan, the secretary-general of the Chinese Association for Life Care, described the Chinese medical system as “broken” in a phone call with Sixth Tone. For now, she said, patients who are forced to leave hospitals have few alternatives. “Without official policies and standards, hospice care has little hope of developing,” she added.
After a failed effort to take care of his wife at home, an increasingly desperate Yu turned to Song Tang on a friend’s recommendation.
There, Chen could benefit from greater care and attention. At Song Tang every ward has a nurse on call around the clock. At mealtime, nurses remind patients via intercom to eat and take their medicine. And twice a day care workers escort or wheel patients out to the hospice’s siheyuan, a kind of quadrangular courtyard common in Beijing, for some fresh air. Around midnight, nurses get up to change patients’ diapers.
Hospice care is not covered by public medical insurance, so each month Yu had to fork out 3,000 yuan (around $450) of his own money. Yu is still paying the bill for Chen’s stint in the hospital ICU. As a former railway worker, his monthly pension is 3,480 yuan.
Yu says that thanks in large part to the palliative care at Song Tang, his wife lived longer than they had expected and died a better death. “She didn’t go through much pain when she died,” Yu said. “There were no bruises on her body, and everything was peaceful.”
On average, patients spend about a month at Song Tang before they die.
When Sixth Tone visited Song Tang, patients in an eight-person ward were playing with their pet crickets, competing to see whose could chirp the loudest.
Shi Jingbin, 81, has dementia, and in 2013 he suffered a cerebral hemorrhage. Unable to stretch out, Shi’s blanket was pitched like a tent over his bent knees. Resting on his lap was a cardboard box of dog-eared philosophy books. Today, Shi can’t even recognize his son, but he still remembers Plato, Nietszhe, and Lao-tzu.
Song Tang’s Li said that when Shi first arrived, he was very lonely because no one could talk to him or understand him. “Emotional and spiritual support are so essential to these patients,” he said.
At Song Tang, around 70 percent of patients aren’t religious. “Without a spiritual life, it is hard to face death alone, fight fear, and control anxiety,” said Li.
China’s aging society suggests that in the future the need to address palliative care will only grow with time. Still, establishing new hospice facilities often faces strong resistance from people who live near the proposed sites.
In what is fast becoming a trend across China, residents of the Yangpu and Pudong districts of Shanghai in 2014 protested against plans to build hospitals, and local officials caved to their demands. The health bureaus of both districts declined Sixth Tone’s interview requests.
Since 2012, the Shanghai municipal government has promoted government-subsidized hospice wards at community health centers. One such facility is the palliative ward at Jingan Temple Street Community Health Service Center, which is overseen by Miao Jun.
The ward only accepts patients with the most advanced stages of cancer due to a shortage of beds — there are only 25 in total. This means that, unlike hospice care in some other countries, patients who have terminal illnesses have to be turned away.
Miao is quick to cite another problem: a dearth of doctors who specialize in geriatrics. At medical schools in China there is little education about hospice care, he says. In addition, curricula usually center on curative treatment, and doctors are told to assign highest priority to extending a patient’s life, he says. In Miao’s view, quality of life considerations are broadly ignored.
In a country where violent conflicts between medical professionals and patients are common, doctors need to be especially mindful of how family and friends of the patient might react when their loved one dies.
Despite the challenges, the status of hospice in China is showing signs of improving — at least for Miao and his colleagues. The Jingan Temple Street center has not received a single complaint, and they’ve yet to have any disputes with patients since they opened in 2012.
There are some small signs of greater public acceptance of hospice care. A neighbor of the Jingan Temple Street hospice ward who declined to be named said he wasn’t bothered by the presence of the facility. “When people die, there is no hearse, no wreath,” he said. “The family just quietly takes the body of the deceased away, so the community doesn’t feel the aura of death.”
To voluntarily stop eating and drinking means to refuse all food and liquids, including those taken through a feeding tube, with the understanding that doing so will hasten death. This is an option for people with terminal or life-limiting diseases who feel that with VSED their dying will not be prolonged. One of the advantages of this decision is that you may change your mind at any time and resume eating and drinking.
The US Supreme Court has affirmed the right of a competent individual to refuse medical therapies and this includes food and fluids. This choice is also commonly accepted in the medical community.
Before You Start
You must prepare to voluntarily stop eating and drinking. It’s not something that can or should be started the day it is first discussed.
Talk with your physician to let them know of your plans. Talk with your physician about all your medications, and ask if a sedative or pain medication will be available to keep you comfortable.
Complete an Advance Directive stating in writing that voluntarily stopping eating and drinking is your wish. Have your physician sign orders to withhold life-sustaining therapies and all resuscitation efforts.
Talk with friends and family members who might care for you during this process early about your wishes and why you may want to take this course. Their support is crucial. However, beware that for many people families are often opposed to VSED and can pose a barrier.
Finalize your business and financial affairs, make funeral and memorial plans, and gather your family members to share memories and say your good-byes.
If you reside in a care facility, discuss your wishes with the staff and nursing director. You will need the staff to provide support and assistance.
If you are already receiving hospice care, your team can help you prepare. If you are not on hospice, ask your physician for a referral to a local hospice provider. Usually hospice will provide supportive care once you start the process.
If your illness is not one that is likely to cause death within six months, arrange for a psychological evaluation for depression and decision-making capacity by a mental health provider. This will reassure family, physicians, and others that your mental status is sound and this decision well considered.
You can live for a long time without eating, but dehydration (lack of fluids) speeds up the dying process. Dying from dehydration is generally not uncomfortable once the initial feelings of thirst subside. If you stop eating and drinking, death can occur as early as a few days, though for most people, approximately ten days is the norm. In rare instances, the process can take as long as several weeks. It depends on your age, illness, and nutritional status.
At first, you will feel the same as you did before starting VSED. After a few days your energy levels will decrease and you will become less mentally alert and more sleepy. Most people begin to go in and out of consciousness by the third day and later become unarousable. Hunger pangs and thirst may occur the first day, but these sensations are usually tolerable; discomfort can be alleviated with mild sedatives or other techniques such as mouth swabs, lip balm and cool water rinses.
Since dehydration will most likely be the cause of death, it is important not to drink anything once you start. Even sips of water may prolong the dying process.
I wish I could say [my father] died a gentle death. But I’m not so sure. I wish doctor-assisted death had been available to my father. I believe it is what he would have wanted.
We recommend that all medications be stopped except for those for pain or other discomfort. Stopping medications for heart problems or diabetes, for example, may speed up the process.
Finally, one of the advantages of VSED is that you may change your mind at any time and resume eating and drinking.
People who begin this process often express a sense of peace that they can finally “stop fighting.” Some people describe a sense of euphoria or pleasant lightheadedness. There is an analgesic effect caused by dehydration that may explain this response. With dehydration, people often need less pain medication, urinate less, have less vomiting, and breathe more easily due to decreased congestion.
Read this story, in which Christopher Stookey recounts his father’s death by voluntarily stopping eating and drinking.
Browse peer-reviewed, academic-journal articles on the subject.
Watch this video, in which Phyllis Shacter describes her husband’s dying after he decided to voluntarily stop eating and drinking:
Not Starting, or Stopping Treatment
For some terminally ill people, aggressive medical treatment may not be helpful and may prolong the dying process without improving quality of life. Under certain circumstances, treatments can increase suffering, ruin the remaining quality of life, or even shorten life.
Stopping treatment can result in a peaceful death but it may also result in increased discomfort. Consult with your physician and arrange for optimal palliative (comfort) care before stopping treatment.
Stopping treatment can be combined with hospice and palliative care or voluntary stopping eating and drinking to shorten the dying process and reduce suffering.
For dying people experiencing so much pain or unmanageable symptoms that they cannot get relief from medications unless the dose is high enough to make them unconscious, palliative sedation provides enough medication to keep them continuously unconscious and thereby free of pain and symptoms. All nutrition and hydration is stopped, and they usually die within a few days.
People using palliative sedation should be monitored around the clock to be sure the sedation is adequate. While this intensive monitoring can sometimes be provided in the home, it is usually provided in a skilled nursing or inpatient hospice facility.
Many [people] claim that palliative sedation effectively eases the suffering of patients when other means fail to do so. However, it is an unacceptable option for most terminally ill adults whose primary concerns are losing autonomy, quality of life and their dignity.
While palliative sedation is an ethical and legal end-of-life option, it is not necessarily a right. While you can request palliative sedation, it is up to the medical provider to determine if it is appropriate. Some physicians and hospices are reluctant or unwilling to authorize palliative sedation. If having the option of palliative sedation is important to you, discuss it with your hospice or other medical provider well before it becomes necessary.
Wise words and solid advice from BJ Miller, who thinks deeply about the end of life as head of the Zen Hospice Project.
Death is an uncomfortable topic. Although we’re well-acquainted with platitudes that remind us to seize the moment and live each day like it’s our last, few of us devote real time to envisioning the end of our lives — or the lives of those we love. In contrast, this is a focal point for BJ Miller, palliative care physician and executive director of the Zen Hospice Project, a San Francisco-based nonprofit that’s focused on improving our experience of death. His TED Talk, What really matters at the end of life, prompted such an outpouring of response that we hosted a Q&A on Facebook to hold a larger conversation about end-of-life care, dying with dignity and providing support for patients and families. Here are just some of the questions — and Miller’s answers.
Based on your experiences, what do you find that most people really want at the end of life? – Emilie S.
In general, people yearn for comfort, for their loved ones to be well cared for, to be unburdened and unburdening, to find some sense of closure and peace. But those are generalities and I would encourage all of us to remember that dying people are living and to treat them accordingly. There is so much room for personal preference.
What are good ways to talk to kids about death? – Michelle Q.
It’s important to remember that kids are not just miniature adults. This big topic, like others, needs to be couched in their developmental stage. In general, it’s helpful to avoid euphemisms or overly indirect language. Kids are generally much straighter shooters than we adults. There is a field called Child Life Services that has a lot to say about this subject and can be a great resource.
People often say they don’t like hospitals; that mental block keeps them from spending time with someone they care about at the moment they need it most. What advice do you have for people who have a loved one in a hospital? How can each of us make that space kinder and better for the senses? – Kate T.
Little things go a long way. Bringing in photographs, familiar objects, flowers are, in my book, always wonderful. Of course, you can always bring in fresh baked cookies — even if your loved one can’t eat, engaging the senses can be potent. Those are some ideas around the external space. Of course, it’s always helpful to cultivate internal spaciousness by being a source of calm.
Death is a hard subject to talk about. How do we talk about this with our families so we can plan? – Danny K.
Several US-based organizations come to mind, including the Conversation Project and the Coalition for Compassionate Care of California. Another tool that people seem to love is the card game, My Gift of Grace. At Zen Hospice Project we also proudly host “death cafes” as a social engagement, and also offer a mindful caregiving program for anyone involved in facing the challenge at end of life or anyone interested in exploring more about this topic.
How does a non-clinical person learn how to care for others at the end of life? It seems like many of us will be in that position. – Don D.
This is exactly why we created the Mindful Caregiving education program at Zen Hospice Project. Estimates are that nearly one third of American adults will either need to receive or provide care to a loved one. We realize there are very few resources to support family caregivers and “informal caregivers” and that the work can be grueling. Zen Hospice Project’s educational curriculum is uniquely designed to enhance and support the wellbeing of both the patient and the caregiver. The program’s balance of social, medical and spiritual practices enables formal and informal caregivers, doctors, nurses and administrators to experience compassion and resiliency at the bedside while reducing burnout and enhancing care.
Do you have any advice for caregivers about how they can take care of their own mental health? – Ella C.
We know from studies what works. There are two major themes for self care: one is some reflective practice, whether yoga or meditation or walking in the woods; the other is some sharing, talking, processing with people you know and trust. Especially with people who do similar work. Beyond those two major points, I would add to be good to yourself and don’t lose yourself in the role.
What do you think about end of life dialogue being considered as aphysician-reimbursed service in the United States? Given your experience, what do you think are the most important pieces of the conversation? How could physicians be better equipped to have this conversation? How could mindfulness training inform this service? – Liz M.
I’m very excited about this new legislation, both practically and symbolically. The key points are to have an open and ongoing conversation with your physician as well as your family or proxies. In fact, I think the single most important thing you can do is to name your proxy, because the situation needs to be read in real time. Remember this is not a single conversation but one that requires updates over time. Training clinicians to have this conversation is another matter and requires time: I recommend reading Atul Gawande’s book, Being Mortal, as a great resource. Insofar as mindfulness allows us to be more present in difficult situations, it can help set the stage for a more fruitful conversation.
Do palliative health centres offer psychological or other support for families after a loved one has passed? – Kasia S.
All certified hospice agencies are required to offer bereavement services to their communities. Admittedly, these services are poorly funded and generally underdeveloped. There is so much more work to be done helping families process what’s just happened and also to protect the new tenderness they may feel as they head back into the world. On an individual basis, many psychotherapists specialize in grief counseling and can be wonderful resources. On our way to developing more formal programs, we happily receive family members long after the death of their loved ones to revisit the house and the Zen Hospice community.
The last time I saw my friend Clare was two weeks ago in a hospice in Melbourne.
For a place where people come to die, it was an unnecessarily sad old building with no warmth, no comfort. Just beige walls and dull furnishings.
Terms like “palliative care” weren’t hidden away here — but instead, displayed on signs with arrows pointing the way to the sick and dying. There, among the mostly elderly patients, lay my 31-year-old dear mate.
Physically, she was a shell of her former self. Cancer had ravaged her body in 18 short months and left behind a confronting sight where vibrancy and a constantly burning energy once resided. Her stomach and legs were horrifically swollen, overrun with fluid as her organs slowly shut down.
But inside, her old spirit still glimmered.
“How are you?” I clumsily asked as I walked in. The moment the words left my mouth, I regretted them. How did I think she was?
“Well, I’ve been better,” she laughed gently. “Not sure if you can tell.”
I sat and held her hand, gently patting the bony and frail limb that once gripped a pen that wrote stunningly insightful words, and held a microphone that powerfully conveyed compelling pieces, here and abroad, for radio and television. Her remarkable but brief career in journalism seemed a million years ago in that moment, as she slipped in and out of consciousness and struggled to speak.
Like so many of the times I’d spent with her after her diagnosis, words failed me. I said nothing of the consequences at this meeting — the final one I would have with her, as it turned out. Just words to fill the silence, a forced smile painted on my face.
What was there to say anyhow?
I know now. I should’ve said that she’d been a wonderful friend for the past 11 years, from the moment we were introduced at uni and set about reviving our student association together — a task from which a cherished and close friendship was born.
I should’ve said that I’d always admire her and, truth be told, that I envied her; that I was proud of all she’d achieved — more in a third of life than most of us could dream in a whole lifetime.
Perhaps I could’ve told her that she’s one of the kindest people I’ve ever met, with not an ounce of malice in her bones.
I might’ve asked if she was frightened. She didn’t seem it, but I would be. I’d be angry too — furious at how unfair the situation was, that she was just getting started. Why was now the time she had to face this awful, daunting thing?
I should’ve told her that I’d rather selfishly become determined to live a better life than I had before, for her, I suppose. To be more adventurous, to take risks, to love, to be a good person, to be less concerned with the small and trivial things, to stop stuffing around… all of the things she had been, even before her own mortality presented itself at 29.
I should’ve shared all the many fond, happy memories I have of our antics — most of which flooded my mind the moment I stepped away from that small, depressing hospice room.
There was the night of drunken deep and meaningful chat about our futures at an end-of-year uni social.
There was the early morning SOS call after a fight with an ex-boyfriend, when I collected her from a darkened street and took her to McDonald’s for sundaes and a long whinge about stupid boys.
There were emails back and forth after she moved to Germany for work. There were excited Facebook chats when she later came home and met the charming man who’d become her husband.
There was a night — now quite funny — when we danced wildly inside a club while our unlucky friend was hit by a taxi outside. She was fine, just a bit bruised. And now, whenever we hear an ambulance siren, we announce that her cab home has arrived. Well, we did.
And of course, there was that day in early December 2014 when she dropped a bomb. She had cancer, it was terminal and it was very rare and very aggressive.
“I’m so sorry,” I said. I couldn’t think of anything else, and so I left it at that and let her speak.
On reflection, I said nothing of real consequence at any stage. I couldn’t. My role was to remain the funny one, I reasoned, to be her brief light of relief from the heavy burden of the rest of her new existence.
I told jokes, brought her old photos, suggested podcasts and books, shared funny stories about diva celebrities I’d encountered through work and generally tried to keep the mood up. In reality, I was scared to confront this thing that was stealing my friend away from me, from her family, from her adoring partner, from the rest of her mates.
I was terrified that if I was to drop my guard that I might cry, and I might never stop. And that would be selfish in light of her struggle. And so I kept the cancer chat light, treating it like a deadly elephant in the corner of the room, and tried to make her smile instead.
There was a day a few months ago though, when I went to see her and she was in a reflective mood. We spoke for several hours about the old days, about the years since, about life, and she said something that still rings in my head.
“If I could go back to the beginning of my life and choose not to have the cancer, but to miss out on everything I’ve done, in exchange for something far duller, I wouldn’t do it,” she told me.
“Because as shit as this is, I’ve had an amazing life. It’ll be over too soon but I’m pretty happy with it.”
In a rare and unfiltered moment, I was as candid as I could be without losing it.
“You did real good,” I said. And she had.
She lived how we all should live — fiercely, bravely, enthusiastically and like her life depended on it — long before it actually did.
And when it’s all said and done, isn’t that a place we all hope to be when our time’s up?
Clare Atkinson died late in the night on Wednesday June 22, peacefully and surrounded by her loved ones.
It was just days after she was able to return home from the hospice to her lovely, bright bedroom, with views out over the city.
You can donate to the Clare Atkinson Memorial Fund, supporting the Peter MacCallum Cancer Centre’s research into cancer of the unknown primary (CUP).
Katie Roiphe begins her study of writers in their last hours with the story of a near-death experience: her own. At the age of 12 she began coughing up blood, but decided not to tell anyone – not her parents, or sisters, or doctor. She had in fact developed acute pneumonia, and after an operation that removed half of a lung she came out of hospital weighing 60lb, “too weak to open a door”. Ever since that narrow escape, death became her obsession, but one that continued to defy understanding or articulation. Who could make sense of such a thing? Her answer: great writers, specifically great writers as they approached death’s door. “I think if I can capture death on the page, I’ll repair or heal something. I’ll feel better. It comes down to that.” This mini-memoir, and a coda, are the most compelling parts of The Violet Hour. They bookend a sequence of five case studies of writers whose thoughts on mortality are often arresting, sometimes moving, yet never add up to a coherent vision of what Henry James called “the distinguished thing”.
Roiphe (above), an essayist, teacher and contrarian, is a woman up for a challenge. Her most recent books – a study of literary unions, Uncommon Arrangements, andIn Praise of MessyLives, a scattershot broadside against the way we live now – reveal her tough, unbiddable, non-ingratiating character. Fittingly, her first subject is Susan Sontag, a writer whose personal and intellectual fierceness could be Roiphe’s model. Sontag’s determination to outface death became part of her legend. She had already survived cancer, twice, when she was diagnosed with leukaemia in 2004. Believing herself to be “exceptional”, she rejected the evidence, adopting a get-well-or-die-trying attitude that caused intense anguish among the people who cared for her – her son David, friends, nurses, hired hands. She took up cudgels once again, enduring chemo and the dangerous procedure of a bone marrow transplant. The treatment caused her shocking physical agony. At this point I couldn’t help thinking of Woody Allen’s line: “I don’t want to achieve immortality through my work. I want to achieve it through not dying.”
Sontag is an extreme case – and the only woman – in this book. Her example is unlikely to make Roiphe, or anyone, “feel better” about death. Sigmund Freud, on the other hand, adopted the opposite approach. Even as a young man he disliked the idea of “prolonging life at all costs”. Stricken by an inoperable cancer of the jaw, he refused any painkillers other than aspirin. “I prefer to think in torment than not to be able to think clearly,” he said. Was his stoicism a better, braver way to face the end? As Larkin wrote in “Aubade”, “Death is no different whined at than withstood”. His disciples believed that Freud had no terror of the end, but Roiphe wonders if he protested his indifference too much: he may have been trying to persuade himself that he didn’t care.
Shadowing Roiphe’s book is a tentative desire to find something consolatory – a truth, a meaning – in death. Can writers teach us how to die? The uncertain, provisional nature of her project is evident. Instead of a continuous narrative, she writes in discrete floating paragraphs, as if conducting a philosophical investigation. Either that, or she doesn’t quite know how to structure her argument. Maurice Sendak, a writer and illustrator she has revered from childhood, described death “as if it is a friend who is waiting for him”. He suffered a heart attack at 39, but lived on till his 80s. He owned Keats’s original death mask and would take it out “to stroke the smooth white forehead”. When his lover died, Sendak drew his corpse, obeying the creative instinct “to turn something terrible into art”. Here Roiphe does get at something useful, which is the consolation of work: “For the time it takes to draw what is in front of you, you are not helpless or a bystander or bereft: You are doing your job.” (I would take “or bereft” out of that sentence.)
John Updike, characteristically, worked unto the last, writing some of his most poignant poems (in Endpoint) from his hospital bed. Like Freud, he cleaved to stoicism in considering death, but unlike him had sought comfort in religious faith and sexual adventure, the latter his way – or at least his characters’ way – of cheating mortality: “If you have a secret, submerged, second life, you have somehow transcended or outwitted the confines of a single life.” In an almost too-perfect illustration of his twin drives we learn that Updike plotted Couples, his great novel of adultery, while in church – “little shivers and urgencies I would jot down on the program”. The oddness of this chapter, however, concerns what happened between Updike’s family during his last illness. His first wife Mary and their four grown-up children seem to have come a cropper under the Cerberus-like vigilance of his second wife Martha. The children felt that Martha, perhaps with her husband’s tacit agreement, restricted their “alone-time” with Updike. This is interesting as gossip, but I can’t see how it enlarges our understanding of the writer or his work.
Even less illuminating is the record of Dylan Thomas’s bibulous last days in New York, swaggering – or staggering – from hotel to pub to hospital and thence into a coma. Roiphe notes that myths have clustered around his death, and the causes of it. Some still argue that he “wasn’t an alcoholic”. Seriously? Put it this way: if Dylan Thomas was not an alcoholic then his was an even more horrifying personality than at first appears. Addiction would at least explain, if not excuse, his lechery, his flakiness, his self-pity, his self-loathing, his tendency to steal from his friends, and the fact that he had written only six poems in his last six years. At 39, Thomas is the youngest to go of this small assembly and the one whose death I felt least inclined to lament.
The Violet Hour does, however, rally at the end. For reasons the author doesn’t entirely understand she seeks an interview with James Salter, then 89 years old, and nearly the last Great American Novelist. To her surprise he agrees to talk. Perhaps it is her contact with a living subject, perhaps it is Salter’s wry, Delphic way with words, or the fact that he came close to death as a fighter pilot in Korea, but something is unlocked by their encounter and Roiphe at last identifies what her quest has been about – not death but the fear of death: “The knowing you are about to die. The panic of its approach … That’s what I’ve been trying to write my way through.” It returns her to another formative moment in her life, the sudden collapse of her father – a heart attack in the lobby of his building – and her belated realisation that he must have felt pain in the minutes before he died. She is excruciated by the idea of his pain, and that he may have panicked. “The idea that he didn’t have time to be afraid had consoled me.”
This book is Roiphe’s haunting but muddled attempt to come to terms with the mystery of extinction. Her father died, and she will never know what he was going through. Salter, who died last year, knew best: “Don’t dwell on it.”
Nearly nine years ago, I received a call from my stepmother summoning me to my grandmother’s house. At 92 years old, my Oma had lost most of her sight and hearing, and with it the joy she took in reading and listening to music. She spent most of her time in a wheelchair because small strokes had left her prone to falling, and she was never comfortable in bed. Now she had told her caregiver that she was “ready to die,” and our family believed she meant it.
I made it to my grandmother in time to spend an entire day at her bedside, along with other members of our family. We told her she was free to go, and she quietly slipped away that night. It was, I thought, a good death. But beyond that experience, I haven’t had much insight into what it would look like to make peace with the end of one’s life.
A recent study published in the American Journal of Geriatric Psychiatry, which gathered data from terminal patients, family members and health care providers, aims to clarify what a good death looks like. The literature review identifies 11 core themes associated with dying well, culled from 36 studies:
Having control over the specific dying process
Engagement with religion or spirituality
Experiencing emotional well-being
Having a sense of life completion or legacy
Having a choice in treatment preferences
Experiencing dignity in the dying process
Having family present and saying goodbye
Quality of life during the dying process
A good relationship with health care providers
A miscellaneous “other” category (cultural specifics, having pets nearby, health care costs, etc.)
In laying out the factors that tend to be associated with a peaceful dying process, this research has the potential to help us better prepare for the deaths of our loved ones—and for our own.
Choosing the way we die
Americans don’t like to talk about death. But having tough conversations about end-of-life care well in advance can help dying people cope later on, according to Emily Meier, lead author of the study and a psychologist who worked in palliative care at the University of California San Diego’s Morris Cancer Center. Her research suggests that people who put their wishes in writing and talk to their loved ones about how they want to die can retain some sense of agency in the face of the inevitable, and even find meaning in the dying process.
Natasha Billawala, a writer in Los Angeles, had many conversations with her mother before she passed away from complications of the neurodegenerative disease ALS (amytropic lateral sclerosis) in December 2015. Both of her parents had put their advanced directivesinto writing years before their deaths, noting procedures they did and didn’t want and what kinds of decisions their children could make on their behalf. “When the end came it was immensely helpful to know what she wanted,” Billawala says.
When asked if her mother had a “good death,” according to the UCSD study’s criteria, Billawalla says, “Yes and no. It’s complicated because she didn’t want to go. Because she lost the ability to swallow, the opportunity to make the last decision was taken from her.” Her mother might have been able to make more choices about how she died if her loss of functions had not hastened her demise. And yet Billawalla calls witnessing her mother’s death “a gift,” because “there was so much love and a focus on her that was beautiful, that I can carry with me forever.”
Dying can take a long time—which sometimes means that patients opt for pain medication or removing life-support systems in order to ease suffering. Billawala’s mother spent her final days on morphine to keep her comfortable. My Oma, too, had opiate pain relief for chronic pain.
Her death wasn’t exactly easy. At the end of her life, her lungs were working hard, her limbs twitching, her eyes rolling behind lids like an active dreamer. But I do think it’s safe to say that she was as comfortable as she could possibly be—far more so than if she’d been rushed to the hospital and hooked up to machines. It’s no surprise that many people, at the end, eschew interventions and simply wish to go in peace.
Author and physician Atul Gwande summarizes well-being as “the reasons one wishes to be alive” in his recent book Being Mortal. This may involve simple pleasures like going to the symphony, taking vigorous hikes or reading books He adds: “Whenever serious sickness or injury strikes and your body or mind breaks down … What are the trade-offs you are willing to make and not willing to make?”
Kriss Kevorkian, an expert in grief, death and dying, encourages those she educates to write advance directives with the following question in mind: “What do you want your quality of life to be?”
The hospital setting alone can create anxiety or negative feelings in an ill or dying person, so Kevorkian suggests family members try to create a familiar ambience through music, favorite scents, or conversation, among other options, or consider whether it’s better to bring the dying person home instead. Billawalla says that the most important thing to her mother was to have her children with her at the end. For many dying people, having family around can provide a sense of peace.
Opening up about death and dying
People who openly talk about death when they are in good health have a greater chance of facing their own deaths with equanimity. To that end, Meier is a fan of death cafés, which have sprung up around the nation. These informal discussion groups aim to help people get more comfortable talking about dying, normalizing such discussions over tea or cake. It’s a platform where people can chat about everything from the afterlife (or lack thereof) to cremation to mourning rituals.
Doctors and nurses must also confront their own resistance to openly discussing death, according to Dilip Jeste, a coauthor of the study and pediatric psychiatrist with the University of California San Diego Stein Institute for Research on Aging. “As physicians we are taught to think about how to prolong life,” he says. That’s why death becomes [seen as] a failure on our part.” While doctors overwhelmingly believe in the importance of end-of-life conversations, a recent US poll found that nearly half (46%) of doctors and specialists feel unsure about how to broach the subject with their own patients. Perhaps, in coming to a better understanding of what a good death looks like, both doctors and laypeople will be better prepared to help people through this final, natural transition.