That said, I will concede I lose that argument, and that moreover, my opinion has never even mattered. Die I will.
And I am not alone in this — you will die, too. After all, death, darn it, just happens. Globally, about 65 million people die each year, 180 per day, 120 each minute. 108 billion people have walked the planet, and then died. That’s a lotta dying, and while it’s incredibly difficult and tragic — this last year especially so — that doesn’t mean we shouldn’t talk about it. Avoidance is not a solution.
Indeed, I’d argue that death is a grand mystery — sacred and important — and this last physical act of our lives can either go pretty well, like a graceful well-rehearsed piano solo or free-throw, or it can go pretty darn badly. Some of how it plays out is beyond our control, but not all of it. Some of it we can prepare for — and if anything deserves our full attention, some preparation, or some renewed clarity, death might be it.
So, the deal is: Tax Day is April 15. But I’d argue the real task — and probably the less miserable one — is to get our stuff in order for Healthcare Decisions Day, which is April 16.
I know: no one wants to do it.
I know: you’re probably starting to X out this essay, or skim it, or scowl at it.
But I’m begging you — and so are your peeps — to take a few hours now in order to save them potentially hundreds of hours. Yes, hundreds of hours. And possibly a lifetime of regret or heartache.
Getting basic and important documents done, and your simple wishes on paper, can literally be your great parting gift.
We all knew someone who left behind a mess — and we all promised ourselves not to be that person. Which means we have to set aside some time and get this stuff done.
First, there’s the medical and legal stuff – Advance Directives and a will – and making sure they’re done, signed, and accessible (they’re really no help if no one can find them). Plus, heck, just leave a note with a trusted person about where some of your stuff is and what you basically want done with it. A great place to start is The Conversation Project.
But in my death-positive work (stemming from my book Making Friends with Death: A Guide to your Impending Last Breath), I advocate writing an ethical will, too — what you stood for, your best and worst times, any reckoning or forgiving or venting or whatever you need to do.
Basically, it’s a “Goodbye letter to life,” if you will. My guess is that doing so will bring you a lot of peace, and will provide peace to those around you, too. Ideally, you don’t want to write this when you’re under duress – write it when you’re feeling great, write it on a lovely spring day, write it on April 16!
Finally, our last task is to advocate simple and direct communication about end-of-life care with those that will likely be involved with it. What looks good to you? What do you want to avoid, if possible? Get clear on what “a good death” looks like for you. Me? I’ve come to believe that a good death is simply one that has been claimed, to the extent possible. For me, that will involve: My medical wishes and decisions being respected (such as my DNR wishes being followed); I would like to die outside, or with a view of nature; I’d like to be with my children and loved ones, if possible; I’d like to be as fully informed about what’s going on, to the extent possible; I want people to be honest with me and I want to be honest with them; and I wouldn’t mind the smell of vanilla or sage and a taste of good whiskey on my lips. Such wishes are written down in about 10 different places, all accessible; my children roll their eyes when I bring it up and say, “Yes, yes, we know, Mom.”
What does yours look like? And who have you told?
Completely bizarre to me is this: A recent Pew Research Center study on end-of life issues found that less than half of people over 75 had given much thought to the end of their lives, and incredibly, only 22% of them had written down or talked to someone about medical treatment at the end of their lives. However, the same Pew study finds a sharp increase in all adults putting something in writing (six in 10 of us) and thinking through our deaths, which indicates that percentage-wise, it’s the slightly younger folks who are preparing now. Attitudes are shifting, too: an unprecedented 66% of us now think there are instances in which doctors should allow a patient to die (instead of doing everything possible to save a patient’s life). A tipping point, it seems to me, has been reached—and we’d like a more mindful, respectful death. We are reclaiming the ancient art of dying.
But there is much to be done. Indeed, though our culture is death-avoidant and confused, I am heartened by the increasingly popular “Death Cafés” and new movements such as “Slow Medicine,” and I’m grateful for April 16, which is the day we should all admit that our life belongs to us, but it also belongs to everyone we interact with, and we owe them the gift of directing an honest gaze at our demise.
But best of all, spending some time now might leave us thinking of death as more of a friend rather than a spooky stranger. With our newfound peace, we can then spend our precious time really living.
In a field that is quickly growing but evolving due to the coronavirus pandemic, death doulas are providing comfort for the terminally ill and helping their family members grieve.
Similar to how a birth doula supports an expectant mother through the process of bringing a life into the world, an end-of-life doula – a trained, non-medical professional – guides a person through the final stages of life.
Mariah Riess, a certified end-of-life doula, often receives calls from new clients following terminal diagnoses.
Riess helps them navigate all aspects of death, from making legal, financial and funeral arrangements to deciding where and how they want to die.
“Death, in some ways, it’s the biggest event in our lives, and for many it’s the most disappointing to think about or have to experience,” Riess said from her Dover home. “There’s maybe a way to bring grace to this process and also information and understanding to this process of dying.”
Riess’s goal is to eliminate the stress and fear of one’s own mortality, providing comfort before and during their death and supporting their grieving loved ones after. Her work with each client can span days, months or years.
Riess believes the isolation many are experiencing during the pandemic has led clients to services like hers.
“I’ve seen quite an uptick in my practice, because I’m not sure there are places where people can talk about what’s going on with them when they’re facing the death of another or their own imminent demise, decline, diagnosis,” Riess said.
Terry and Melinda Sortwell began working with Riess last June. The Maine couple had been referred to Riess, who also provides nutrition and wellness services, as Terry struggled with digestive issues and gaining weight.
Terry, now 71, had been diagnosed with bile duct cancer in 2018 and had undergone extensive surgery and six months of chemotherapy before another cancer scare.
While further testing showed the cancer had not returned, his wife, Melinda, 66, experienced her own cancer scare. She, too, would receive good news, but considering their own mortality had been eye-opening.
“The fact is, we’re all going to die,” Terry said by Zoom. “We all think as human beings, ‘Oh, no. It’s not going to happen to me now. It’s not going to happen to me.’ Everything’s fine until it isn’t, and everything comes to a screeching stop. So you might as well plan for it.”
When the couple, married for 45 years this September, discovered Riess provided end-of-life services, they began working with her regularly, meeting virtually.
“It’s wonderful to think you can do it all yourself. But emotionally, there’s so much going on when you think you’re leaving your body, or you’re letting people down,” Melinda said. “The last thing you need to think about – or all the things you haven’t thought about – paperwork-wise and what are your desires and wants at the end of your life.”
Between Riess’s appointments, she asks her clients to complete assignments. For Terry, she instructed him to visit a hospice center so he can make his own plan for how he wants to spend his final days.
“[Riess’s] field and what she does, it takes all the worry away – a lot of the worry away,” Melinda said. “This is an important step and important support system for us and our family.”
Interest in end-of-life services has been increasing, even as doula work evolves due to the COVID-19 pandemic, according to Henry Fersko-Weiss, co-founder and executive director of the International End of Life Doula Association (INELDA), a non-profit that trains and certifies death doulas as private practitioners.
“I see people much more open to talking about death and dying,” Fersko-Weiss said by phone Wednesday. “The pandemic has made us all more conscious, aware and engaged with facing dying. That’s something that’s happening universally.”
Some death doulas have temporarily stopped providing services during the pandemic, while others, like Riess, have converted in-person meetings to online or telephone appointments.
While she already serves clients across the country remotely, Riess will soon resume appointments at her home with local clients, as she has now been fully vaccinated.
“Dying is a very intimate experience. So, I know it’s much richer and better if a doula can be physically present,” Fersko-Weiss said. “But it’s better to have a doula virtually than not to have a doula at all.”
While Terry undergoes scans and bloodwork every few months, he and his wife are stable and feeling well. Still, the couple feels their sessions with Riess are important, to prepare for their final days, whenever that may be.
“The point is to have these conversations when you’re feeling good,” Terry said, “so that you’re able to make decisions and talk to our children and think about things rather than try and solve these problems or make these decisions when you’re in a crisis mode.”
For Riess, her job is more of a calling – the most fulfilling role she could imagine.
“It’s such a privilege for me to be in the lives of the people that I’m in the lives of and to see the courage and the love,” Riess said. “And the opportunity for me to be involved with these families at the most personal, really profound time of life – I look forward to going to the end of my own life doing this.”
Renee (a pseudonym) closed her eyes, lay her head in her brother’s arms, and gently drew her last breath. Minutes before, she had chugged a bitter concoction of Seconal and juice, while the loved ones encircling her offered their final blessings and softly sang her out of this world.
This carefully choreographed scene was exactly the way Renee had imagined her death after months of careful planning. She had endured a grueling course of cancer treatments several years prior. When the cancer recurred and metastasized, she was quickly drawn to the possibility of a medically assisted death. As a resident of Vermont, she became one of the roughly 1 in 5 Americans legally permitted to end their lives when faced with a terminal illness.
As the pandemic has made avoiding the subject of death all but impossible, planning for death has taken on new urgency. Palliative care experts have urged people to document end-of-life wishes in advance directives, while end-of-life startups have tapped into the market potential of death. These developments align with what has long been a strong motivation for terminally ill people seeking MAID: to control and carefully craft the scene of death.
I am a medical anthropologist who has spent the past five years studying the implementation of Vermont’s 2013 Patient Choice and Control at End of Life Act. I interviewed over 140 patients, health care providers, caregivers, activists, and legislators to collect their stories and experiences. I also attended medical conferences and advocacy events where MAID was being discussed.
While I learned a lot about what drives people to MAID, I was particularly fascinated by what MAID does to death. The option transforms death from an object of dread to an anticipated occasion that may be painstakingly planned, staged, and produced. The theatrical imagery is intentional: An assisted death is an event that one scripts, a matter of careful timing, with a well-designed set and the right supporting cast. Through this process, death becomes not just something that happens but also something that is made.
The four friends I interviewed about Renee’s life and death all used similar words to describe her: independent, stubborn, strong-willed, even a bit of a curmudgeon. She loved being a crone, what some people define as a woman who has gone through menopause and stands in her power and wisdom. She never married nor had a significant romantic relationship, which was a source of sorrow for her. Still, her life was rich with friendships, meaningful work as an artist and teacher, and a devoted spiritual practice.
Renee was also dignified. A friend recounted how, during a spiritual retreat, a group was doing a silent meditation while walking outdoors. They stumbled upon Renee, up to her breasts in snow, waving calmly.
“She had fallen through a spot and was literally stuck in the snow up to her chest, but she was just like, ‘Um, excuse me,’” her friend recounted. “Where other people might be thrashing around or screaming for help, she was just like, ‘Hello.’ And that’s a really good way of describing her.”
As her cancer progressed, Renee was in constant pain. She rejected strong pain medications to avoid a foggy brain. Fluid built up in her chest, affecting her breathing. An intensely private and independent person, she did not want to depend on others for care at the end of life. And she did not want to be stuck in her body longer than it could be useful to her.
Renee loved her life, but she knew where her illness was headed. When she reached the limits of what she thought she could bear, MAID offered an enticing pathway out.
Historically, humans have largely been passive witnesses to their own deaths. Since the middle of the 20th century, however, technological developments in medicine have offered increasing possibilities for human control over one’s own death. These changes have led to heated debates about what counts as death and altered the kind of event we take death to be.
MAID renders not only the time of death but also the broader landscape of death open to human control. MAID allows terminally ill patients to choreograph their own deaths, deciding not only when but where and how and with whom. Part of the appeal is that one must go on living right up until the moment of death. It takes work to engage in all the planning; it keeps one vibrant and busy. There are people to call, papers to file, and scenes to set. Making death turns dying into an active extension of life.
Staging death in this way also allows the dying person to sidestep the messiness of death—the bodily fluids and decay—what the sociologist Julia Lawton has called the “dirtiness” of death. MAID makes it possible to attempt a calm, orderly, sanitized death. Some deliberately empty their bladder or bowels in advance, or plan to wear diapers. A “good death,” from this perspective, has not only an ethical but also an aesthetic quality.
Of course, this sort of staging is not without controversy. For some, it represents unwelcome interference with God’s plans. For people like Renee, however, it infuses one’s death with personal meaning and control.
Renee set the weekend for her death to avoid another hospitalization to drain fluid from her chest, a procedure she had undergone several times. Determined not to face hospitalization again, she bought a plane ticket for a spiritual mentor who lived in another state and invited a small group of family and friends to gather at her home.
It was an emotional but humor-filled weekend. “She didn’t want us to be all sad and heavy about it. She wanted to have a good time,” one friend recalled.
Medical aid-in-dying transforms death from an object of dread to an anticipated occasion that may be planned, staged, and produced.
Her friends were amused by the incongruously frenetic pace of her dying. All weekend, Renee shuffled around the house, shredding papers and making lists and phone calls. Her friends made up a playful song, “Follow the Little Blue Hose,” set to the tune of “Follow the Yellow Brick Road” from the film The Wizard of Oz, which they sang as they watched her scurry around trailed by an oxygen tank.
Renee was very organized about dying. She had thought about which people she wanted to inherit her dog, her journals, and her art. She ordered dry ice for her in-home wake and wrote a check to the crematorium and clipped it to the relevant paperwork. She even finished her taxes. She left detailed instructions for her postmortem care and funeral in a file to be opened after her death. A pine casket, constructed by a friend, had been sitting in her shed for months. The only matter left to attend to was her actual death.
Renee had never been certain she would take the lethal dose of Seconal. (In Oregon, only about 64 percent of people who obtain the medication go on to ingest it.) Initially, she hoped she might avoid it by willing herself to die. A natural death was more aligned with her worldview and spiritual practice. Her friends performed an “unbinding” ceremony in an effort to untether her soul from her body.
But she couldn’t make herself go. And if she didn’t die, her friends would need to go home, and she would be expected at the hospital on Tuesday, which had become, for her, a fate worse than death.
When Renee went to bed Saturday night, she had not yet made up her mind about what she would do. During the night, her intense coughing echoed throughout the house. Finally, she got up at 4 a.m., grabbed her laptop, and went back to her bedroom to pen love letters to friends. At 6 a.m., she emerged and announced she was ready to go.
While Renee said her goodbyes, four friends sat in a circle and prepared the medication with a makeshift ritual ceremony. Using beautiful pottery and sacred chalices, they emptied 100 capsules—the number of Seconal pills required to form a lethal dose—singing while they worked, and carefully mixed the powder with juice. They all piled on the couch for a final photo shoot. Renee laid across their laps in a favorite leopard print and purple velvet outfit.
Then, in her signature no-nonsense style, Renee got into bed and started directing everyone on where to stand. They surrounded her as she drank, chanting softly. Ten minutes later, she was dead.
Some health care providers I’ve talked to worry over the portrayal of deaths like Renee’s. There is a danger in suggesting that death should be clean and orderly, they rightfully suggest, when most deaths are far from it. Media accounts of glamorized assisted deaths may set up unrealistic expectations for what death should look like.
And some MAID deaths fail to follow the plan, as I learned from my research. There was the woman who took hours and hours to die, scaring her children when she repeatedly turned blue, then miraculously started breathing again. There was also the man who swallowed a dose of morphine that “should have killed a grizzly bear,” according to his physician, yet who nevertheless awoke the next morning.
In my experience, however, most of the bereaved remain deeply satisfied with their loved one’s medically assisted death. They tend to view supporting a loved one’s wishes for MAID as an ultimate form of care and being by their side as a consummate honor.
After she died, Renee’s friends quickly got to work implementing her plans. They called the hospice nurse to pronounce her dead. They notified people, following a list Renee had annotated with her characteristic wit: those to be nice to, those she really didn’t give a shit about but should probably know that she had died. Three women washed and anointed her body with meticulous care. The coffin was set up in the living room for a three-day in-home wake. Renee’s funeral was held in the same room, then a friend drove her body to the crematorium, followed by a caravan of other friends.
Hilarity frequently punctured the somber mood. “It was just like a comedy of errors,” a friend recalled. “The dry ice all melted, like a day or three days earlier than it should have, the casket almost didn’t fit in the car. … Right until the last minute, we were like, ‘Thanks, Renee,’ you know, like, ‘good planning on that one.’”
Despite these hiccups, the friends who participated in Renee’s death felt extraordinarily honored to be present. They saw her final act as brave and dignified, very much aligned with the way she lived her life. “It takes personality, at least that’s my impression,” one friend said. “It’s hugely courageous to go, ‘All right, in this minute, I’m gonna be here, and the next minute, I’m not. Here I go to make that happen. I’m gonna make that happen right now.’”
This comment captures an important feature of MAID: For observers, there is something startling about going from being fully alive one minute, and then, suddenly, willfully dead. Aside from suicide, this is not how we’re taught our own deaths happen.
But MAID is shifting the stakes of what we think death might be—transforming death into something we make.
Every session of the biennial Montana state legislature since then, a lawmaker has proposed a bill to formally criminalize physician-assisted death.
Those who back the bills say the aid is morally wrong while opponents say criminalizing the practice would be a backstep for patients’ rights.
But so far, lawmakers haven’t gained enough support to pass any legislation on the issue, though it has been close. The latest effort stalled on March 1, on a split vote.
Linda Heim knew her dad didn’t plan to wait for the cancer to kill him. For decades, he’d lived in Montana, which they’d thought was one of the few places where terminally ill people could get a prescription to end their life.
After two years of being sick, Heim’s dad got the diagnosis in 2019: stage 4 kidney cancer. His physician offered treatments that might extend his life by months. Instead, the 81-year-old asked the doctor for help dying. Heim said her parents left the appointment in their hometown of Billings with two takeaways: The legality of medically assisted death was questionable in Montana, and her father’s physician didn’t seem willing to risk his career to put that question to the test.
“My parents knew when they left there that was the end of that conversation,” said Heim, now 54. “My dad was upset and mad.”
The day after the appointment, Heim’s mother went grocery shopping. While she was gone, Heim’s dad went to the backyard and fatally shot himself. (Heim asked that her father’s name not be published due to the lingering stigma of suicide.)
About a decade earlier, in 2009, the Montana Supreme Court had, in theory, cracked open the door to sanctioned medically assisted death. The court ruled physicians could use a dying patient’s consent as a defense if charged with homicide for prescribing life-ending medication.
However, the ruling sidestepped whether terminally ill patients have a constitutional right to that aid. Whether that case made aid in dying legal in Montana has been debated ever since. “There is just no right to medical aid in dying in Montana, at least no right a patient can rely on, like in the other states,” said former state Supreme Court Justice Jim Nelson. “Every time a physician does it, the physician rolls the dice.”
Every session of the biennial Montana state legislature since then, a lawmaker has proposed a bill to formally criminalize physician-assisted death. Those who back the bills say the aid is morally wrong while opponents say criminalizing the practice would be a backstep for patients’ rights. But so far, lawmakers haven’t gained enough support to pass any legislation on the issue, though it has been close. The latest effort stalled on March 1, on a split vote.
Even the terminology to describe the practice is disputed. Some say it’s “suicide” anytime someone intentionally ends their life. Others say it’s “death with dignity” when choosing to expedite a painful end. Such debates have gone on for decades. But Montana remains the sole state stuck in a legal gray zone, even if the practice can still seem taboo in many states with clear laws. Such continued uncertainty makes it especially hard for Montana patients like Heim’s dad and their doctors to navigate what’s allowed.
“Doctors are risk-averse,” said Dr. David Orentlicher, director of the health law program at the University of Nevada-Las Vegas, who helped write clinical aid-in-dying guidelines published in the Journal of Palliative Medicine in 2016. “The fear of being sued or prosecuted is still there.”
Despite that, access to medical aid in dying is gaining momentum across the U.S. Outside Montana, eight states and the District of Columbia allow the life-ending aid — six of them since 2014. So far in 2021, legislators in at least 19 states have pushed aid-in-dying bills, most seeking to legalize the practice and some seeking to drop barriers to existing aid such as expanding which medical professionals can offer it. Many are repeat legalization efforts with some, like in New York, dating as far back as 1995. Only the Montana bill this year specifically sought to criminalize it.
North Dakota considered legislation to legalize medically assisted death for the first time. Rep. Pamela Anderson, a Democrat from Fargo who proposed the measure after hearing from a cancer patient, said she wasn’t surprised when the bill failed in February in a 9-85 vote. The state’s medical association said it was “incompatible with the physician’s role as healer.” Angry voters called Anderson asking why she wanted to kill people.
“But I heard from just as many people that this was a good bill,” Anderson said. “There is momentum to not let this concept go away.”
Back in Montana, now retired state Supreme Court Justice Nelson said he has always regretted joining the majority in the case that allowed the practice because the narrow ruling focused on physicians’ legal defense, not patients’ rights. Having watched a friend die slowly from disease, Nelson, 77, wants the choice himself if ever needed.
Despite — or because of — the court decision, some Montana doctors do today feel that they can accommodate such patient decisions. For example, Dr. Colette Kirchhoff, a hospice and palliative care physician, said until she retired from private practice last year she considered patients’ requests for life-ending drugs.
Physicians who help in such cases follow well-established guidelines set by other states, Kirchhoff said. A patient must have six months or less to live — a fact corroborated by a second physician; can’t be clinically depressed; needs to ask for the aid; and be an adult capable of making healthcare decisions, which is determined by the attending physician. They must also administer the life-ending medication themselves.
“You’re obviously not going to do a case that is vague or nebulous or has family discord,” Kirchhoff said. “The doctors who are prescribing have felt comfortable and that they’re doing the right thing for their patient, alleviating their suffering.” Of her few patients who qualified for a prescription, she said, none actually took the drugs. Kirchhoff noted that, in some cases, getting the prescription seemed to provide comfort to her patients — it was enough knowing they had the option if their illness became unbearable.
For the past six legislative sessions — dating to 2011 — a Montana lawmaker has proposed a bill to clarify that state law doesn’t allow physician-assisted death. Republican Sen. Carl Glimm picked up that effort the past two sessions. Glimm said the current status, based on the more than decade-old court decision, sends a mixed message in a state that the Centers for Disease Control and Prevention ranks as having among the nation’s highest suicide rates. Glimm said allowing someone to end their life because of pain from a terminal illness could normalize suicide for people living with depression, which is also a form of pain.
“It’s really hard because I do sympathize with them,” Glimm said. “What it boils down to is, if you’re going to take your own life, then that’s suicide.”
Kim Callinan, president and CEO of national nonprofit Compassion & Choices, said the comparison to suicide is frustrating. “People who are seeking medical aid in dying want to live, but they are stricken with a life-ending illness,” she said.
Glimm and his bill’s supporters say that some patients could be pressured into it by family members with something to gain, and doctors could prescribe it more often than they should.
But Callinan, whose group advocates for aid in dying, said that since Oregon first legalized it in 1997, no data has shown any merit to the warnings about abuse and coercion. One study showed no evidence of heightened risk of abuse within the practice for vulnerable populations such as the elderly. But critics have said states aren’t doing enough to track the issue.
By now, Leslie Mutchler, 60, knows most of the people on all sides of the debate after years of testifying in support of protecting aid in dying. Her dad, Bob Baxter, was a plaintiff in the case that eventually led to the 2009 Montana Supreme Court decision on medically assisted death. After leukemia whittled his body for years, he died in 2008 without the option, the same day a lower court ruled in his favor.
Mutchler said she didn’t understand how complicated the Supreme Court’s ultimate ruling was until her son TJ was diagnosed with terminal metastatic pancreatic cancer in 2016.
He was 36 and lived in Billings, Montana. By then, the 6-foot-5 man had lost 125 pounds off what had been a 240-pound frame. He couldn’t keep food down and needed a feeding tube for medicine and water. TJ Mutchler wanted to have the choice his grandfather never got. But when he went to his physician and asked for aid in dying, the response was it wasn’t legal. Eventually, Mutchler found a doctor to evaluate her son and write the prescriptions for phenobarbital and amitriptyline. TJ took the drugs more than two months later and died.
“People contact me asking how to find someone and it’s difficult,” Mutchler said. “That’s why people end up taking matters into their own hands.” Research into terminally ill populations is limited, but one national study published in 2019 found the risk of someone with cancer taking their own life is four times higher than the general population.
For Roberta King, another one of Baxter’s daughters, the ongoing fight over aid in dying in Montana means she knows every other winter she’ll make the more than 200-mile round trip from her Missoula home to the state capital. King, 58, has testified against all six bills that sought to ban aid in dying following her dad’s case. She memorized a speech about how her dad became so thin after his medicine stopped working that it hurt for him to sit.
“It’s still terrible, you still have to get up there in front of everybody and they know what you’re going to say because it’s the same people doing the same thing,” King said. But skipping a hearing doesn’t feel like an option. “If something were to happen to this and I didn’t try, I would never forgive myself,” she said.
The coronavirus pandemic dramatically changed Ms. Saoui’s work as a home hospice nurse in New York. Safety precautions created a physical distance between her and her patients and even cut some of her hospice colleagues off from their clients’ homes altogether last year. It deprived families and caretakers of ways to grieve together, and confronted hospice workers, however familiar with death, with a staggering scale of loss.
Through all the pressures, Ms. Saoui and other workers continued to provide solace and even moments of happiness to dying patients and their families.
“You sit down and you listen,” she said. “They express their fear, they express their emotions, and you guide them and tell them what to expect.” After a patient dies, she added, “I often want to hug the family members, but I cannot do that now.”
Instead, Ms. Saoui said, “I pray and do the best I can.”
More than half a million Americans have died from the coronavirus, and many have died in pain, isolated from their families. Ms. Saoui contrasted those conditions with what she called a good death: “peaceful, pain-free, at home and surrounded by their loved ones.”
While nurses have continued in-person home visits, some chaplain, social work and therapy sessions moved online because families preferred it. By August, most of that care switched back to in-person visits but with strict precautions, including wearing full P.P.E. at times and keeping six feet apart whenever possible.
Though a vast majority of Ms. Saoui’s patients in the last year did not have the coronavirus when they entered hospice, challenging restrictions have been placed on all patients and caregivers. Home hospice care can last for many months, and workers often develop close relationships with patients and their families.
But the pandemic has meant fewer occasions for families — and hospice workers — to mourn together in person at funerals or memorial services. For over a year, the size of those gatherings has been strictly limited by many states to try to stem the spread of the virus.
When hospice patients die, their caretakers often work through their own grief and loss in weekly staff meetings and gatherings with colleagues who shared the same client. These staff meetings are now online, but the loss of being able to hold each other and shed tears together has deeply affected hospice workers, said Melissa Baguzis, a social worker who specializes in pediatric cases. She has developed her own ways to handle the loss of her young patients.
“I take a moment, light a candle and read their favorite book or listen to their favorite song,” she said. “I have my own time for them. We do become connected with their families, but when I’m in their houses, that is their grief and I’m going to support them. I need to process my own loss outside of that.”
The hospice workers in the MJHS Health System, a nonprofit that covers New York and Nassau County, are comfortable around death in a way that many Americans are not. But the pandemic has put an extra weight on them and their patients, Ms. Baguzis said. “We all share in each other’s grief now more than ever,” she said.
The Rev. Christopher Sigamoney, an Episcopal priest who is a hospice chaplain, said he has tried to be there for his patients “even with their frustration, anger, hopelessness, depression and anxiety.”
He often told patients’ family members that it was “OK to be angry at God” over the loss of their loved one. But he said that the death of a beloved cousin from the coronavirus had changed his understanding of his work.
Father Sigamoney and his family were unable to be with his cousin, a retired doctor visiting from India, during the three days while she was on a ventilator in the hospital at the end of her life. He and a handful of relatives said “a few prayers” in the funeral home, he said, but they were unable to have a “proper burial” or ship the body home to India because of virus restrictions.
“I did not really understand when people would ask, ‘Why me and why my family?’” he said of the time before his cousin’s death. “Now I was asking the same questions. I said to God, ‘Now I’m angry at you, and I hope you can forgive me.’” Father Sigamoney said he was slowly recovering through prayer and helping his patients.
Last month, Josniel Castillo was hooked up to a battery of medical machines and monitors, surrounded by his parents and a multitude of stuffed animals, as Javier Urrutia, a music therapist, and Ms. Baguzis entered his cramped bedroom. Despite his declining medical condition because of a rare genetic disease, this was a happy day. It was Josniel’s 11th birthday.
Mr. Urrutia launched into “Las Mañanitas,” a traditional Mexican birthday song. Josniel’s mother and father, Yasiri Caraballo and Portirio Castillo, joined in. Ms. Caraballo wiped away tears. They were, she said, “tears of joy” because she had not expected her son would live to be 11.
She requested another tune, and played tambourine as Mr. Urrutia launched into “Que Bonita Es Esta Vida.” They sang the final chorus together, part of which can translate to:
Oh, this life is so beautiful
Though it hurts so much sometimes
And in spite of its sorrows
There’s always someone who loves us, someone who takes care of us.
Afterward, Mr. Urrutia said most people are “unaware of what’s happening behind closed doors, both the difficulty and the beauty.”
This year in countless homes, there has been “a lot of pain and suffering, it cannot be denied,” he said. But in hospice work, he said, “you also see all of the heroes out there doing the simple things of life, caring for each other. The husband taking care of his wife or the mother taking care of her son.”
“Dying is a part of life,” he added. “Only living things die.”
Hospice chaplain shares common regrets she hears from people who have less than six months to live.
By A. Pawlowski
Sitting at the bedside of dying patients, Tenzin Kiyosaki sees every day how regrets can haunt people at the end of life.
The former Buddhist nun works as an interfaith hospice chaplain for Torrance Memorial Medical Center in the South Bay area of Los Angeles, tending to the spiritual and emotional needs of people who have less than six months to live, and listening to their concerns.
It’s also a nudge for younger, healthier people to take action to resolve or prevent regrets now.
Kiyosaki wants people to remember that death doesn’t only come to the old.
Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart. — Steve Jobs
No one knows when their time is up, whether because of an accident or illness.
Life is impermanent not only for you, but your family, friends and loved ones. Kiyosaki’s own mother passed away suddenly at 49, leaving the family in shock.
“Understanding that death can come at any time can help you see how precious life is and how to really get on with our ambitions and our dreams, and to be kind to each other,” Kiyosaki, 72, told TODAY.
“We should clear the regrets now and go for our dreams rather than just hanging on to regrets that take up a lot of mental and emotional space.”
I did not live my life of dreams.
One patient always wanted to travel the world, but never did. “She felt like, ‘I never got out of here, I never got to do what I really wanted to do,’” Kiyosaki said.
For others, the “what if” regrets might center around never taking a chance on starting a business, applying for a dream job abroad or moving to a new city.
Kiyosaki urged people to examine whether they’re neglecting or putting off their dreams and if so, to turn it around and go for them now — it’s not too late. One terminally-ill woman she knew flew to Europe by herself despite all the obstacles in her way.
I did not share my love.
Many end-of-life patients are frustrated that they haven’t been able to share what’s really in their heart and say what they needed to say to their loved ones. For some, that might be “I love you.” For others, just being able to acknowledge, “I was absent, I was cruel, I was unavailable,” can transform a family and allow it to heal.
“I just feel like it’s important for people to see that they don’t have to live their whole life this way,” Kiyosaki said.
“Don’t fade away from life without saying what you need to say,” she writes in her book. “Find ways to say ‘I love you’ and express your love every day.”
I did not forgive.
This is perhaps the biggest regret many people have at the end. Old wounds and unfinished business rise to the surface, but holding on to past grievances hurts us, Kiyosaki writes, citing a quote from Buddha: “Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else — you are the one who gets burned.”
Kiyosaki recommends an exercise: Imagine you have one year left to live. Who would you call? What would you do and say to be at peace? Do it now.
“If you just clear the regrets, you have so much more open heart and receptivity to the world,” Kiyosaki said. “Let’s turn it around and enjoy our lives because they are impermanent — we’re all going to face end of life.”
On a crisp January morning, we carried Camilla’s purple coffin, covered in blooming yellow flowers, into the Art Deco chapel of a London crematorium as Leonard Cohen sang “Dance Me to the End of Love”. Her family and friends watched from their homes in New York City via a livestream link. They’d recorded voice notes in advance, which we’d uploaded to the music system. Camilla’s coffin rested on the marble catafalque, as their pre-recorded words of love, gratitude and admiration were played. As the curtains closed around her coffin, a recording of Camilla’s niece reading “Phenomenal Woman” by Maya Angelou echoed around the empty crematorium chapel.
Camilla lived a creative, vibrant and full life, surrounded by a wide circle of like-minded people. She died alone on a Covid-19 ward in a central London hospital. In the saddest and loneliest of circumstances, Camilla’s family and friends found a way to come together to say goodbye to the person who had been a huge force in all their lives.an end-of-life doula and a progressive funeral director. Anna supports people who are living with life-limiting illness, their family and friends, helping people to live as good a life as possible right up until the very end. In her doula role, Anna also works with people who are grieving. Louise supports people to put together funerals that honour, heal and inspire. Our joint mission is to normalise death and dying as part of life and living. Over the last year, our work, both together and separately, has changed immeasurably.
Many of us won’t have any idea that, worldwide, in an average year, around 151,600 people die every single day. That’s almost two people every second. Annually, in the UK alone, more than 500,000 people die. However, the Covid-19 pandemic has meant that death and dying have infiltrated and impacted our lives in ways we’ve never experienced before. As a society, we’ve been faced with the shock of horrifying death tolls on a daily basis. We’ve been unable to be at the hospital deathbed of someone we love, or if we were allowed, we’ve had to say goodbye through multiple layers of PPE. Some of us have attended restricted funerals, unable to engage with the rituals and traditions associated with loss
Where do we turn when someone dies? In normal times, we’d seek solace in the presence of others, we’d allow ourselves to be supported by the people around us. They would bear witness to our losses, keeping us close and secure in the knowledge they were near. Devastatingly, Covid-19 has changed all of this. We couldn’t reach out. We couldn’t physically be there. We couldn’t hold someone’s hand as they lay dying in hospital or give a friend or colleague a much-needed hug after a funeral service. Human touch and connection were replaced by a phone, an iPad or a laptop screen – a cold, hard, reflective surface with its ability to “connect” reliant on an intermittent internet connection. With the absence of human connection, of closeness, of the comforting arms of someone we love, how and where did we find consolation and care? How could we find ways to come together while staying apart?
We are privileged that our jobs have allowed us to witness a myriad of inspiring and beautiful ways people have found to do just that. The humanity of NHS staff has astounded us time and again. One nurse stayed with a young woman who was dying alone in hospital long after his shift was over, reading aloud the text messages she was receiving from family and friends. We saw a frightened young woman transferred from the hospital where she was receiving cancer treatment to hospice so she could be surrounded by those who loved her at the end. Her family played her favourite music and soothed her with stories from her childhood in a peaceful room overlooking the hospice gardens. And a newly married man, with his entire life ahead of him, died unexpectedly in a tragic accident. Hospital staff, despite restrictive regulations, rushed to find extra PPE so his new wife could be there to kiss him for the final time.
We watched a fractured community come together to share flowers from their gardens when florists were closed and funeral flowers were unavailable. A simple request via the neighbourhood WhatsApp group resulted in a widow’s doorstep overflowing with blooms for her partner’s coffin. We witnessed how the rules of social distancing have necessitated some radical creative thinking and we worked with a celebrant who designed a long multi-coloured ribbon that everyone at the funeral could touch and hold to feel connected, while still remaining physically distant.
We were asked to help facilitate a worldwide Zoom by a group of friends when one of them died by suicide. They wore his favourite colours, shared photos of the fun they’d had together and raised a glass of champagne in his honour. Separated by a virus, united in grief, connected via technology.
Who would have thought just 18 months ago that today we’d be watching the people we love dying over FaceTime and attending their funerals via video link? Yet the unimaginable has become our everyday reality. And it’s within the reality of the unimaginable that we’ve seen the infinite beauty and endless possibility of the human spirit shine. We’ve learned we can bear the unimaginable. We are bearing the unimaginable. Through kindness, creativity and determination, we’ve found hope in our heartbreak, discovered that our vulnerabilities are also our strengths, and realised that our resilience is born from finding fragments of optimism and wonder in the most unlikely of places
Now, the promise of spring sits in the cool end-of-winter air. Gone are the dark afternoons; the frost and biting wind are slowly disappearing, allowing these March days to tenderly unfurl, reaching expectantly into the longer evening light. They bring with them a degree of anticipation, hope and new life. There is life. There is hope. There’s always hope.