In 1998, Cindy Spence watched in horror as her hospitalized, cancer-stricken father-in-law was denied the massage he desperately requested. Then and there, the Texas woman’s career path became clear.
“He entered a pain-filled and despondent state in which the only thought that gave him any pleasure at all was to have a hospice therapist come to his hospital room,” Spence recalls. But in 1998, massage therapy was contraindicated for cancer patients. The thinking was that massage would spread cancer cells or might break a tumor.
“That just felt wrong to me,” Spence says.
Now Spence is one of hundreds of hospice massage therapists nationwide, working at the T. Boone Pickens Center at Faith Presbyterian Hospice in Dallas. MK Brennan, president of the Society for Oncology Massage, estimates that at least 250 U.S. hospitals provide hospice massage, and the number is growing.
According to the American Massage Therapy Association (AMTA), massage therapy was a $16 billion industry in the country in 2017 — more than twice the revenues of a decade earlier.
“Ever since the 1940s and ’50s, we’ve been working to establish ourselves as health care providers rather than adult entertainers,” Brennan says.
This perception had changed little when massage therapist Irene Smith basically launched the hospice massage field in 1982. Nor had the other part of the equation — hospice care — caught on.
“You had two topics within the field that have been very scary to the general public,” Smith says. “Massage was not a mainstream modality of care for many, many years, and death has never been a dinner-table conversation until the past decade.”
It didn’t help that, at least literally, we were not a “touchy-feely” society.
“Touch has been very misunderstood,” Smith says. “Touch is in the forefront of neuroscience, with more information coming to the mainstream public in relation to the positive outcomes of being touched. More and more people are becoming aware of its benefits from birth to death.”
That’s why Smith founded the influential California-based Everflowing program, whose mission is “to teach mindful touching and the practice of therapeutic presence as opportunities to recognize and express tenderness in caregiving.”
The Public Presses the Issue of Hospice Massage
Integration of massage at medical facilities often requires public demand. As hospice massage therapists toiled as freelancers and volunteers, patients and their families saw the benefits of the practice and increasingly have come to insist on it.
“We have seen a definite acceptance and growth for requesting massage,” says Meg Robsahm, an independent hospice massage therapist in Rochester, Minn. “We have also seen an increase in hospice companies adding it to their service menus simply because of demand.”
Massage therapist Theresa J. Herman of Allina Health’s hospice program out of Minneapolis has observed a similar progression.
“I started as a volunteer. The patients were beginning to ask for this, so all the big [facilities] realized they couldn’t provide coverage with just volunteers,” Herman says. “Insurance wouldn’t cover it, so we had to come up with donations, philanthropy or pulling it out of little corners of the budget.”
Still, Brennan says, staff positions for hospice massage therapists remain relatively limited, and there are few signs that insurers will start including it in their standard coverage. On the contrary, independent massage therapists are strongly advised to buy liability coverage to work in hospice care.
Touching in Many Ways
At least for now, advocates for hospice massage have research on their side.
According to the AMTA, a 2014 study focused on integrating massage therapy into palliative care found “statistically significant changes in pain, anxiety, relaxation and inner peace of patients, decreasing both pain intensity and anxiety while increasing the patients’ sense of relaxation and inner peace.” (Palliative, or comfort, care is appropriate for people of any age at any stage of a serious illness. Hospice care is generally for those who have six or fewer months to live and who are no longer receiving active treatment.)
The study’s results are why these therapists recognize that their role is, as Smith puts it, “to comfort — not cure — to validate, to honor, to soothe and to respect.”
Other therapists often point to the wide-ranging, even holistic nature of their work.
“The dying process involves physical, spiritual, mental and emotional pain,” Spence says. “RNs can work with the physical pain, chaplains with the spiritual pain and social workers with the mental and emotional pain. I feel that massage and music therapy are the only ones that treat all of those modalities.”
Getting the Family Involved
Smith and her peers strive to have family members present during hospice massage sessions, not just to observe but to participate — to learn how to be gentle with touch.
“Families sometimes have no way to connect with their loved ones, and massage can offer that connection,” Robsahm says. “It can bring a sense of peacefulness in the end stages.”
Families are generally relieved that their loved ones are finding relief and relaxation.
“Especially as someone is close to death — say 48 hours — if I’m in the midst of that family and they’re interested, I will have them sit next to me and have them do what I do,” Robsahm says. “At a certain point, my time will be up, and they will get to be the person to hold their hand, stroke their neck, put oil or lotion on their feet.”
The patient and the family are not alone in reaping something profound out of the experience, according to Spence.
“I have made a commitment to find every ounce of joy,” Spence says. “I knew when I came in that there would be a lot of sorrow, but I didn’t know I would laugh with patients and their families as much as I have.”
Or, as Robsahm puts it: “It moves beyond physical contact. We touch people’s bodies, and in the end, we touch them in their soul.”
Our mortality is not something to be overcome. It is integral to our humanity.
By Allison Arieff
Consider this fact of modern life: Nearly all of the technological products that we buy and use are designed with planned obsolescence in mind. They are built specifically to fail after a relatively short period — one year, two, maybe five. If you doubt that, think about how often you have to replace your smartphone. Gadgets are designed to die.
The irony, however, is that the same Silicon Valley culture that produces these gadgets seems to be obsessed with living forever.
Today’s “life extension” movement includes venture capitalists like the tech billionaire Peter Thiel pouring money into anti-aging and life extension start-ups. (While the rumor that Mr. Thiel receives regular blood transfusions from 18-year olds turned out to be false, there is, of course, an actual company — Ambrosia Plasma — that provides young plasma infusions for $8,000 a liter.) And Google launched the biotech company Calico to increase its “understanding of the biology that controls lifespan,” and bolstered that goal by conducting research on the long-living naked mole rat, a species that shows little to no signs of aging.
In recent years, the lure of disrupting death has become a hot industry. Paul Bennett, a partner at the design consultancy IDEO, was among the first to tap into it. A profile in The California Sunday Magazine in 2015 described an epiphany he had: “ ‘Oh,’ he told himself. ‘You need to redesign death.’ ” Since then, an entire new market has flourished. Death as a conduit for innovation. Death as a participatory exhibition. Death as the organizing principle for networking dinners. Death as an app.
There are now people who refer to themselves as “longevity entrepreneurs,” who see death not as a problem but rather as something to be eliminated. Instead of pursuing a good death, why die at all? Beneath the surface of this quest for eternal life seems to be an unwillingness on the part of its proponents to imagine the world without themselves in it.
In a very fundamental way, this tendency is inhuman.
In her new book, “Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer,” Barbara Ehrenreich writes: “You can think of death bitterly or with resignation, as a tragic interruption of your life, and take every possible measure to postpone it. Or, more realistically, you can think of life as an interruption of an eternity of personal nonexistence, and seize it as a brief opportunity to observe and interact with the living, ever-surprising world around us.”
I was taken by Ms. Ehrenreich’s formulation, this notion that our experience of life, though unique to us, is just part of a broader continuum. Our time here is but a blip, and when we leave, the great world continues to spin. As such, the appreciation of our own lives has much to do with the ever-increasing awareness of its relative brevity. It is this — an awareness and acceptance of our own mortality — that makes us human. And it is the impetus, I’d argue, for living our lives to the fullest.
There was a brief period in my own life — less than two years — in which I got married, lost my mother to cancer, had a miscarriage, bought a house and gave birth to a child. Experiencing all this in so short a time span made me feel almost too human. That barrage of ends and beginnings left me intensely aware of the fragility of life as well as enthralled by the glorious intensity of it: I lost and simultaneously gained so much. Today this awareness of the temporal nature of it all leaves me determined to seize, observe and interact with the days that remain. It is the knowledge of how quickly, sometimes tragically, things can change or disappear that fuels my urgency to be in the present.
As a teenager I remember lamenting how horrible and unfair life was, only to have my parents respond that one couldn’t appreciate the good without experiencing the bad. Back then, hearing that was annoying; as an adult, it remains annoying, but it is also completely true.
It is rare for us to give much thought to the challenges we would face if there were no end to our time on earth. Would the condition of our bodies affect the condition of our minds? Would everyone live forever, or just those with the means to afford it? Could you opt out of eternal life? Would inequality dissolve, or would it become even more of an intractable problem? Would we still gain the empathy, wisdom and insight that can come with age?
Technological breakthroughs can be life-changing. But I believe that our humanity — our humanness — is inextricably intertwined with the fact of our mortality. And no scientific fountain of youth can ever cause that to change.
Is it better to declutter and move to something smaller long before the inevitable happens?
By Rebecca Huntley
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.
“No candlesticks, just memories.”
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.
Death cleaning helps those family and friends we leave behind, but it’s emotionally draining and physically exhausting.
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.
Aaron McQ, 50, sits in his Seattle apartment on Jan. 31. The interior and urban designer had been battling leukemia and a rare form of amyotrophic lateral sclerosis, or ALS, for five years.
A former world traveler, triathlete and cyclist McQ had been in pain and physical decline for years. Last fall, he decided to use Washington state’s 2009 Death With Dignity law to end his suffering.
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.
Aaron McQ stored his aid-in-dying prescription in a brown paper bag in the cabinet above the refrigerator. He filled the prescription in late December, planning to use them within weeks. The hard part was deciding exactly when to die.
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.
Aaron McQ and his friend Karen Robinson go boating on Seattle’s Portage Bay in 2013, before he fell ill with leukemia and a rare form of ALS, or amyotrophic lateral sclerosis.
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.”
The recent, untimely deaths of Kate Spade, reportedly from depression-related suicide, and of Anthony Bourdain, also from apparent suicide, came as a surprise to many. How could a fashion designer and businesswoman known for her whimsical creations and a chef, author and television personality who embodied a lust for life be depressed enough to end their lives? Crushing sadness can hide behind many facades.
According to a report by the US Centers for Disease Control and Prevention (CDC), suicide rates for adults in the United States are on the rise; since 1999, suicide rates in 25 states increased by more than 30%. In the US, suicide accounted for nearly 45,000 deaths in 2016.
Each person who dies by suicide leaves behind an estimated six or more “suicide survivors” — people who’ve lost someone they care about deeply and are left grieving and struggling to understand.
The grief process is always difficult. But a loss through suicide is like no other, and grieving can be especially complex and traumatic. People coping with this kind of loss often need more support than others, but may get less. Why? Survivors may be reluctant to confide that the death was self-inflicted. And when others know the circumstances of the death, they may feel uncertain about how to offer help.
What makes suicide different
The death of a loved one is never easy to experience, whether it comes without warning or after a long struggle with illness. But several circumstances set death by suicide apart and make the process of bereavement more challenging. For example:
A traumatic aftermath. Death by suicide is sudden, sometimes violent, and usually unexpected. Depending on the situation, survivors may need to deal with the police or handle press inquiries. While still in shock, they may be asked if they want to visit the death scene. Sometimes officials discourage the visit as too upsetting; other times they encourage it. “Either may be the right decision for an individual. But it can add to the trauma if people feel that they don’t have a choice,” says Jack Jordan, Ph.D., clinical psychologist in Wellesley, MA and co-author of After Suicide Loss: Coping with Your Grief.
Recurring thoughts. A suicide survivor may have recurring thoughts of the death and its circumstances, replaying over and over the loved one’s final moments or their last encounter in an effort to understand — or simply because the thoughts won’t stop coming. Some suicide survivors develop post-traumatic stress disorder (PTSD), an anxiety disorder that can become chronic if not treated. In PTSD, the trauma is involuntarily re-lived in intrusive images that can create anxiety and a tendency to avoid anything that might trigger the memory.
Stigma, shame, and isolation. There’s a powerful stigma attached to mental illness (a factor in most suicides). Many religions specifically condemn the act as a sin, so survivors may understandably be reluctant to acknowledge or disclose the circumstances of such a death. Family differences over how to publicly discuss the death can make it difficult even for survivors who want to speak openly to feel comfortable doing so. The decision to keep the suicide a secret from outsiders, children, or selected relatives can lead to isolation, confusion, and shame that may last for years or even generations. In addition, if relatives blame one another — thinking perhaps that particular actions or a failure to act may have contributed to events — that can greatly undermine a family’s ability to provide mutual support.
Mixed emotions. After a homicide, survivors can direct their anger at the perpetrator. In a suicide, the victim is the perpetrator, so there is a bewildering clash of emotions. On one hand, a person who dies by suicide may appear to be a victim of mental illness or intolerable circumstances. On the other hand, the act may seem like an assault on, or rejection of, those left behind. So the feelings of anger, rejection, and abandonment that occur after many deaths are especially intense and difficult to sort out after a suicide.
Need for reason. “What if” questions can arise after any death. What if we’d gone to a doctor sooner? What if we hadn’t let her drive to the basketball game? After a suicide, these questions may be extreme and self-punishing — unrealistically condemning the survivor for failing to predict the death or to successfully intervene. In such circumstances, survivors tend to greatly overestimate their own contributing role — and their ability to affect the outcome.
“Suicide can shatter the things you take for granted about yourself, your relationships, and your world,” says Dr. Jordan. Some survivors conduct a psychological “autopsy,” finding out as much as they can about the circumstances and factors leading to the suicide. This can help develop a narrative that makes sense.
Sometimes a person with a disabling or terminal disease chooses suicide as a way of gaining control or hastening the end. When a suicide can be understood that way, survivors may feel relieved of much of their what-if guilt. “It doesn’t mean someone didn’t love their life,” says Holly Prigerson, Ph.D., professor of psychiatry at Harvard Medical School and Director of Psycho-Oncology Research, Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute.
Support from other survivors
Suicide survivors often find individual counseling (see “Getting professional help”) and suicide support groups to be particularly helpful. There are many general grief support groups, but those focused on suicide appear to be much more valuable.
“Some people also find it helpful to be in a group with a similar kinship relationship, so parents are talking to other parents. On the other hand, it can be helpful for parents to be in a group where they hear from people who have lost a sibling — they may learn more about what it’s like for their other children,” says Dr. Jordan.
Some support groups are facilitated by mental health professionals; others by laypersons. “If you go and feel comfortable and safe — [feel] that you can open up and won’t be judged — that’s more important than whether the group is led by a professional or a layperson,” says Dr. Prigerson. Lay leaders of support groups are often themselves suicide survivors; many are trained by the American Foundation for Suicide Prevention.
For those who don’t have access to a group or feel uncomfortable meeting in person, Internet support groups are a growing resource. In a study comparing parents who made use of the Internet and those who used in-person groups, the Web users liked the unlimited time and 24-hour availability of Internet support. Survivors who were depressed or felt stigmatized by the suicide were more likely to gain help from Internet support services.
You can join a support group at any time: soon after the death, when you feel ready to be social, or even long after the suicide if you feel you could use support, perhaps around a holiday or an anniversary of the death.
Getting professional help
Suicide survivors are more likely than other bereaved people to seek the help of a mental health professional. Look for a skilled therapist who is experienced in working with grief after suicide. The therapist can support you in many ways, including these:
helping you make sense of the death and better understand any psychiatric problems the deceased may have had
treating you, if you’re experiencing PTSD
exploring unfinished issues in your relationship with the deceased
aiding you in coping with divergent reactions among family members
offering support and understanding as you go through your unique grieving process.
A friend in need
Knowing what to say or how to help someone after a death is always difficult, but don’t let fear of saying or doing the wrong thing keep you from reaching out to a suicide survivor. Just as you might after any other death, express your concern, pitch in with practical tasks, and listen to whatever the person wants to tell you. Here are some special considerations:
Stay close. Families often feel stigmatized and cut off after a suicide. If you avoid contact because you don’t know what to say or do, family members may feel blamed and isolated. Ignore your doubts and make contact. Survivors learn to forgive awkward behaviors or clumsy statements, as long as your support and compassion are evident.
Avoid hollow reassurance. It’s not comforting to hear well-meant assurances that “things will get better” or “at least he’s no longer suffering.” Instead, the bereaved may feel that you don’t want to acknowledge or hear them express their pain and grief.
Don’t ask for an explanation. Survivors often feel as though they’re being grilled: Was there a note? Did you suspect anything? The survivor may be searching for answers, but your role for the foreseeable future is simply to be supportive and listen to what they have to say about the person, the death, and their feelings.
Remember his or her life. Suicide isn’t the most important thing about the person who died. Share memories and stories; use the person’s name (“Remember when Brian taught my daughter how to ride a two-wheeler?”). If suicide has come at the end of a long struggle with mental or physical illness, be aware that the family may want to recognize the ongoing illness as the true cause of death.
Acknowledge uncertainty. Survivors are not all alike. Even if you are a suicide survivor yourself, don’t assume that another person’s feelings and needs will be the same as yours. It’s fine to say you can’t imagine what this is like or how to help. Follow the survivor’s lead when broaching sensitive topics: “Would you like to talk about what happened?” (Ask only if you’re willing to listen to the details.) Even a survivor who doesn’t want to talk will appreciate that you asked.
Help with the practical things. Offer to run errands, provide rides to appointments, or watch over children. Ask if you can help with chores such as watering the garden, walking the dog, or putting away groceries. The survivor may want you to sit quietly, or perhaps pray, with him or her. Ask directly, “What can I do to help?”
Be there for the long haul. Dr. Jordan calls our culture’s standard approach to grief the “flu model”: grief is unpleasant but is relatively short-lived. After a stay at home, the bereaved person will jump back into life. Unfortunately, that means that once survivors are back at work and able to smile or socialize again, they quickly get the message that they shouldn’t talk about their continuing grief. Even if a survivor isn’t bringing up the subject, you can ask how she or he is coping with the death and be ready to listen (or respect a wish not to talk about it). Be patient and willing to hear the same stories or concerns repeatedly. Acknowledging emotional days such as a birthday or anniversary of the death — by calling or sending a card, for example — demonstrates your support and ongoing appreciation of the loss.
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.
In an interview in the days before her death, Munro said that reading a story in The Bellingham Herald about Alberts’ decision and hearing a talk Shacter gave about it – both occurred in September 2015 – made her decide that was how she would die.
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.”
Growing awareness
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.
