Sofie Mathiassen’s grandparents — Poul and Else — always kept a journal, jotting down in a sentence or two — sometimes more — the small joys of each of their days together. Eight years ago, Poul was diagnosed with dementia and Parkinson’s disease, and, for the past four years, their granddaughter has been photographing their daily lives in Denmark, creating a record of Poul’s last moments on earth.
The work has won the Bob and Diane Fund grant, a cash prize dedicated to raising awareness through photography of the medical crisis around Alzheimer’s and dementia.
“I have always been very close with my grandparents and spent a lot of time with them throughout my childhood,” Mathiassen said. “So, when my grandfather began to get sicker I started photographing him. I wanted to keep him as I knew him, and I could see him fading away from me and from my grandmother and the rest of the family.”
Mathiassen’s photos show the bond between Poul and Else as one’s dementia becomes overwhelming and the other works to hold onto what’s slowly disappearing.
“Their story is just one example of what many families are going through,” Mathiassen said. “I hope that people see the love before they see the disease.”
“Photographing your family takes a certain risk and vulnerability,” said Getty Images photographer Chip Somodevilla, one of this year’s judges. “And Sofie has shared her world with us in an intimate and beautiful way. Denmark may have a sophisticated welfare system — but dementia still has the same impact.”
Mathiassen will receive $5,000 to publish her images in a photo book in 2020, said Gina Martin, the fund’s founder and executive director, said.
When Rosemary Bowen hurt her back last fall, she was diagnosed with a spinal compression fracture, a common injury for people with osteoporosis. At 94, the retired school reading specialist was active and socially engaged in her Friendship Heights neighborhood, swimming each day, cooking and cleaning for herself, and participating in walking groups, a book club and a poetry cafe. Doctors assured her that with physical therapy and a back brace, she would probably recover in about three months.
Instead, she announced to her family and friends that she had decided to terminate her life by fasting. After saying her goodbyes, she stopped eating, and in the early morning of the eighth day of her fast, she died in her sleep.
But first, Rosemary asked her daughter, Mary Beth Bowen, to film her fast. The final week of her life is now documented, day by day, in a 16-minute film, which was shown publicly for the first time Saturday at the End of Life Expo hosted by Iona Senior Services in Tenleytown.
It may sound macabre to hold a camera up to a dying woman. But Mary Beth said her mother wanted to spread the word that there was a legal, relatively pain-free way to end one’s life. “She thought that more people should take advantage of it,” she said. “She wanted to show people that it could be peaceful and even joyful.”
Rosemary’s plan didn’t completely surprise her family. She had lived through the Depression, when her father lost his job and moved the family to their grandmother’s farmhouse in Magnolia, Wis. Perhaps because of that experience, she was horrified by the idea of imposing on others, even temporarily, to the point where she would stay in a hotel rather than with family. “For all my life, she used to say, ‘People should row their own boats,’ ” Mary Beth said.
Rosemary had seen friends in their 90s who had slowly declined, and as far back as 1979 she wrote about her aversion to an old age with loved ones “shuffling in and out of rest homes visiting me.” When a friend ended her life by fasting, Rosemary decided someday she would do the same.
“At every family reunion she would talk about it — ‘When I get to the point where I can’t care for myself, then I’m going to hasten my death through fasting,’ ” Mary Beth said. “… She said, ‘Old Eskimos, they would just go off and die,’ and she thought that made so much sense.”
After her injury she spent two weeks at a rehab facility, and her daughters talked her into trying out an assisted-living facility. But she hated that she needed help with basic tasks such as cleaning herself, and after two days there she decided to go through with the fast.
Family members begged her to reconsider. Didn’t she want to see her great-grandchildren start to grow up, Mary Beth asked. One of Rosemary’s daughters said she was hurt that Rosemary would not stick around to see her granddaughter graduate.
But Rosemary was adamant. “She said, ‘I’m sorry, but I have to do what’s right for me,’ ” Mary Beth said.
There is no count of how many people choose this route, but it is gradually entering the public conversation. Radio host Diane Rehm revealed on a 2014 segment that her husband, who had suffered from Parkinson’s disease, had brought about his own death by fasting.
Depending on the person’s health and other circumstances, it can take from a few days to a few weeks before death occurs, according to published studies on the method. Refraining from drinking liquids can significantly hasten the process, as a person can survive for a long time by fasting alone. Proper mouth care is essential for a comfortable death, including keeping the person’s lips moist. Aggressive treatment for pain should also be available.
In a 2015 study, 80 percent of family physicians in the Netherlands who had treated VSED cases said the process had unfolded as the patients wanted; only 2 percent said it hadn’t. The median time until death was seven days. Doctors reported that 14 percent of their patients suffered pain in their final three days, and smaller percentages experienced fatigue, impaired cognitive functioning, delirium, and thirst or dry throat.
The results were similar to that of a 2003 study in which hospice nurses in Oregon were asked if they had treated patients who chose to stop eating and drinking. Eighty-five percent of those patients died within 15 days, and the nurses’ median score for the quality of their deaths, on a scale from 0 (a very bad death) to 9 (a very good death), was 8.
Even so, many advocates for aid-in-dying laws argue that people should not have to draw out their own deaths in such a way. Rehm made that argument vociferously after the death of John Rehm, who chose VSED after his doctor said he couldn’t give him drugs to end his life.
The next step after Rosemary decided she wanted to end her life was getting into a hospice program so she could receive aggressive pain medication and other support during the fast. Although she did not technically qualify for hospice since she didn’t have a terminal illness, an Iona staff member helped find one willing to accept her.
In the days leading up to her fast, Rosemary said goodbye to close friends and family members, and started eating half-size meals. Her last meal, for dinner on Dec. 5, was crab cakes. The next day, she stopped eating — and her daughter started filming.
The first scene shows Rosemary smiling, propped up against a blue satin pillow, her short gray hair framing her face. “I am leaving life with great joy,” she says. “I cannot tell you how content I am and I recommend it highly to do it this way. Be in control. Don’t let people decide anything about you and keep you doing a lot of procedures that are not going to benefit your health at all. Just get on with it and go.”
On Day 3 Rosemary says she feels “Okay. Good. Happy. Relieved.” On Day 4, her voice is still strong, and she has returned from walking down the hall with her walker.
Around then, Rosemary became impatient. She felt fine — too fine — and wondered why death was taking so long. Her daughter pointed out that she was still having small sips of water each day with a pill. So she stopped that, instead relying on tiny wet sponges to hydrate her mouth.
By Day 5, her voice cracks as she reports feeling “weaker, and I’m delighted.”
On Day 6, Mary Beth breaks from her neutral observer role and asks if her mother has any regrets about what she’s doing.
“Absolutely none,” Rosemary says.
“But you know that I would much rather have you live for another year or two,” Mary Beth says.
“Oh God,” her mother says with a grimace.
The film does not skip over difficult parts, including the last day Rosemary is conscious, when her mind starts to wander as her organs shut down, and she slips into a deep sleep.
In the audience at Iona, the film elicited mixed reactions.
Gerry Rebach, a former hospice nurse whose mother hastened her death with a fast that took 21 days, said, “It’s not easy, and this movie made it seem easy. I would hate for it to give false impressions.”
Rebach said she cannot imagine herself following her mother’s example. “I think it takes an incredible act of will to be sentient and be able to do that.”
Jean McNelis, a Friendship Heights resident who was friends with Rosemary for 20 years and watched the film Saturday, said she is in the process of figuring out details of her living will, will, and power of attorney. “I don’t have any opinion formed yet about what I want,” she said. “She gave me things to think about.”
Carol Morgan, 78, of Columbia Heights, was upset by the film. Her mother had also fasted to hasten her death in 2006. “It broke my heart,” Morgan said. “I couldn’t bear to see it. … There’s something in me that rebels against it.”
For Mary Beth, the filming was excruciating. She would mostly hold her tears back when she was with her mother, then burst into sobs in the parking garage.
But she saw how happy Rosemary was with her decision. “I felt so gratified that I was helping her on this journey that she was on,” she said. “We were in it together. We’ve always been close, but we became even closer. We’ve never been closer than that last week.”
In the end, helping her mother end her life felt like a sacrament. And filming it felt empowering. Since Rosemary’s death, several of her mother’s friends have told her they are considering following her example, she said.
When Esther Delaplaine, 95, a friend and neighbor, visited Rosemary during her fast, she said, “I had a chance to tell her … how her manner of going was a guide to me in some future that I would be facing.”
That was what Rosemary was hoping for. In the final scene of the film, she can be heard saying, “I feel so privileged to be exiting life like this, and think of all those people who are wringing their hands and saying ‘If only God would take me,’ and all they need to do is give God a little help by holding back on eating and drinking.”
By then, the bed is empty, the blue satin pillow still on it.
Death and dying are not common topics of family conversation in American culture. Even when a loved one is critically ill, many families struggle with how and when to share their thoughts and feelings about death and dying with each other.
Hospice workers are in a unique position to interact with families as the process of dying is experienced. I recently spoke with staff members from a couple of local hospice agencies who offered insight and perspective related to individual and family responses to death and dying.
One response that these professionals regularly encounter is a request by the family to not tell the patient that he/she is dying. Sometimes it’s the patient asking the professional to not tell the family that he/she is dying. The professional is asked to not wear a name badge that might say “hospice” on it, and not to introduce himself/herself as from a hospice organization.
Families may react in this manner for several reasons:
Fear that their loved one will respond to the news by “giving up”
Personal difficulty accepting the circumstances and a “if we don’t talk about it, then it isn’t real” belief
Lack of time or energy to have emotionally intense discussions due to the pressures of physical caregiving, financial concerns, job responsibilities, etc.
A desire to avoid an appearance of weakness or vulnerability
Although family members may believe they are protecting their loved ones from emotional stress by not talking about death, avoiding these conversations may actually create additional heartache for everyone due to an inability to pursue individual goals for care and experience closure. Even when families tried to hide the fact, in the majority of cases experienced by these hospice workers, their patients who were alert and oriented were aware that they were dying.
One nurse I spoke with identified what she referred to as “the tasks of dying.” When people are aware that the end of life is approaching, their emotional and spiritual focus may change and certain activities may have greater importance, such as:
Apologizing for past mistakes
Forgiving others for uncomfortable situations/relationships
Thanking family members, friends and others who are significant
The significance of these tasks was acutely demonstrated by one couple who were receiving services from this nurse. The wife was at the very end of her life, in fact, her physicians could not understand why she had not died days beforehand. Initially, the hospice team believed she was waiting for their daughter to arrive, however, she continued to cling to life despite the daughter’s presence.
The hospice nurse finally asked the husband if he was aware of any unresolved issue for his wife, and he immediately broke down. Many years prior, he had an affair. His wife knew of the affair and they remained married, but they never spoke about it, moving forward as if it had never occurred. With encouragement from the nurse, he acknowledged this situation and requested forgiveness from his wife, and she died within 20 minutes.
How does one initiate conversations about closure and end of life goals for care? For families who are reluctant to tell a loved one that he/she is dying, a question that might be helpful is “What is the worst case scenario if you tell your loved one?”
When speaking with the individual who is dying, recognize that one important concept for those who are near the end of life is legacy. People want to know that their lives mattered. Asking “What are you most proud of?” or sharing an accomplishment of the individual that made an impression on you can open the door to deeper dialogue.
For questions that can help guide the development of goals for care, consideration should be given to not only specific medical treatments, but also how those medical treatments will influence daily life. Defining values with questions such as “What is a good death?” and “Is there something that you want to accomplish?” can help guide care decisions.
When Patricia Cassidy was at her lowest point, she had just been evicted, was overwhelmed with mounting medical bills, and was suffering from a traumatic brain injury that left her emotionally unable to cope with everyday tasks. Then her despair turned to fear as she found herself before a local judge, who mandated that she would have to cede control over her financial and medical affairs to a guardian — an organization that the court would task with managing many components of her life on her behalf.
“I went to the hearing, and it was very, very scary for me,” she recalled in a recent interview. At the time, her therapist and rheumatologist had petitioned the court to place her in a special public guardianship program for people without other means of support from family or friends. But Cassidy, a 59-year-old domestic abuse survivor facing several chronic ailments, feared losing her independence. “I was afraid of guardians,” she said. “I felt that they were going to come in and take over my life and take over everything I had and get rid of it all.”
Five years later, Cassidy said that what she most feared about guardianship — losing control — hasn’t happened. Instead, she’s stayed independent, living in a Brooklyn apartment her case worker helped secure. She now sees her guardianship, administered by the nonprofit advocacy group Vera Institute of Justice, as “just a part of my life.” But her program is part of a small, unconventional support network for extremely vulnerable seniors that aims to safeguard their lives without taking them over. For hundreds of thousands of other seniors, guardianship is an ethical gray zone, operating at the heart of a question that increasingly haunts an aging nation: When am I no longer able to care for myself?
Guardianship is one of the most ethically fraught aspects of the elder care system, hinging on the most sensitive questions about personal liberty, medical responsibility and kinship. And it all starts, for better or worse, with a judge’s decree. A court appoints a guardian when a senior is deemed unable to live independently, usually after a hearing process that reviews an individual’s medical needs or physical, intellectual, mental or psychological disabilities, and determines that guardianship is appropriate. Similar to adoption, the guardian is in most cases a relative or friend who petitions for them. But people with fewer resources might end up in the care of a public or private agency, which is tasked with managing issues like medical treatment, financial planning and end-of-life care.
Overall, about 1.5 million people nationwide are in some form of guardianship, more than three-quarters of them involving a relative. Seniors without friends or relatives who are willing to help manage their affairs may enter the care of a private guardian (who is generally arranged by family or friends and compensated directly), if they have the financial resources to do so. Elderly people who don’t have enough funds to finance their own guardians can enter a separate system known as public or community guardianship, provided by a nonprofit or government agency. But as a whole, court-appointed guardianships lack central regulation or monitoring. Advocates fear that as the Baby Boom generation ages and guardianship becomes more widespread, so will the potential for abuse or neglect.
The Vera Institute’s The Guardianship Project (TGP) is trying to get courts and communities to reimagine guardianship, both through research and advocacy and through running its own guardianship model, which now serves about 180 people across New York, including Cassidy. On a national level, TGP’s research on guardianship programs in several states suggests the system is letting many seniors fall through the cracks: Surveys of judges and other court personnel, along with professional guardians, indicate that many courts are overstretched; there is little monitoring of cases, and judges often lack expertise for handling complex cases of seniors with serious health and economic issues. Meanwhile, court-appointed guardians are in many cases attorneys, who might have no expertise in caregiving, and respondents reported a lack of guardians available with skills like social work and nursing.
“Basically, what the whole story is showing is that there’s a population of elderly, disabled and/or poor people that are largely invisible and largely ignored,” said TGP Director Kimberly George.
Meanwhile, public wariness of guardianship is growing: Media reports and government audits have revealed many cases plagued by dysfunctional bureaucracy and a pattern of elder abuse. In professional private guardianships, which often take in seniors who have some assets to pay for services, scandals have erupted in cases of neglect, exploitation or abuse of elderly people. But the poorest seniors are even more vulnerable, since their fate relies completely on the courts and public welfare systems. Poor, socially isolated seniors with complex care needs often find themselves assigned to a public or community guardian that is financed by public funds, but without adequate resources for care and legal services. According to Peter Strauss, an elder law attorney and professor at New York Law School, when funding is arbitrary and inconsistent, guardians, public or private are frustrated by “underfunding, short staff, and then they get overwhelmed with the number of cases that they can’t handle.”
“There’s a gaping hole in the system for folks who don’t have money, but who need help and don’t have anybody [who] can step in to pay their bills, make health care decisions and the like,” said Bernard Krooks, an elder law attorney who handles guardianship cases in New York. Although public guardianship programs could play a critical role for the most marginalized seniors, Krooks told Truthout, “The reality is, there has not been a funding mechanism in New York State to make this happen.”
Keeping Elders at Home
TGP’s model seeks to serve as a different kind of last resort, aiming to provide intensive services for seniors in economic hardship, with no family or friends available to serve as guardians. Funded by New York’s Office of Court Administration and other public and philanthropic funds, TGP serves clients across a range of settings, including residential care facilities, but aims to keep clients in their communities. Each client with a “wraparound team” that includes lawyers and other support staff, with specialists in managing public benefits, finances and housing. About half of the clients live at or below the federal poverty line, and half are people of color. About 60 percent of clients are living in their communities, while others live in residential institutions like nursing homes.
TGP’s multidisciplinary program intends to knit together different strands of the social infrastructure to help people avoid nursing homes and jails. If a client with mental health problems suffers a breakdown and gets arrested, TGP can provide legal representation to secure their release from jail and help connect them to a long-term treatment program that fits their needs. TGP can also support undocumented seniors by helping them obtain medical care and other services while avoiding immigration authorities and federal law that curtails non-citizens’ access to aid.
Until recently, Cassidy hardly fit the stereotype of an “incapacitated” elder. Earlier in her life, she had worked in public relation and museum curation, but over the years, her health deteriorated due to various chronic ailments and domestic abuse. Then in her mid-fifties, she was living on her own — just not very well. Her brain injury often triggered emotional outbursts; basic tasks like a visit to the bank could spiral into an angry breakdown. “I was very overwhelmed, and then therefore not able to even operate on the simplest level,” she said. Cassidy’s vulnerability was aggravated by estrangement from family members. “It was like I became an orphan at 50,” she said.
Her therapist and rheumatologist encouraged her to enter into the guardianship as a way of getting her life under control. A TGP case worker and other staff have helped her sort out her finances and secure a new apartment with a special housing subsidy based on her medical condition. While Cassidy is capable of making her own treatment decisions, her guardian also acts as an interlocutor. A conversation with a doctor can leave her “mentally fatigued,” she adds, but TGP staff “are there with me, and they’re talking to the doctor … then afterwards if they need to, [they] explain it to me five times — the doctor is not going to explain anything to you five times — [so that] I’m sure that it’s a good decision that’s being made.”
TGP works with individuals in residential institutions, but also helps them move back into their communities whenever possible. As the report explains, many clients become “stuck” in the medical system, “languishing needlessly in a hospital or nursing home,” unable to be discharged “because no one will take on the challenges of transitioning him or her back to their homes or to a less-restrictive setting with proper oversight.” Many guardians, George said, particularly those ill-prepared to deal with complex, high-needs clients, might be tempted to place a senior in a nursing home as an “easier” solution — eliminating the need for the guardian to worry about housing, food or managing the client’s bills.
When TGP steps in, the team prepares for a client’s return home by taking care of tasks like settling rent arrears with the landlord, or planning end-of-life care — services that the client would never be able to arrange while bedridden in a crowded rehab center. If a client’s condition deteriorates to the point that some form of institutionalization, such as placement in a nursing home, appears necessary, TGP would work to place them in the least restrictive setting, according to the study, perhaps seeking out a local facility “with staff who speak a client’s primary language and access to religious services and culturally familiar foods.”
Despite its personalized approach, a recent cost-analysis found that TGP’s budget saved its roughly 160 to 180 clients collectively about $3 million in annual Medicaid costs, primarily by avoiding placements in nursing homes.
The Vera Institute’s study suggests other counties and states can use a similar holistic approach to public guardianship. On the policy level, TGP’s study calls for an expansion of public guardianship nationwide — with additional funding, comprehensive monitoring of guardians and service providers, and enhanced regulatory standards, including a commitment to placing people in the least restrictive setting, and a staff-client ratio of 1 to 20 to ensure adequate resources and oversight. Overall, a more human-centered public guardianship program could enable the most vulnerable seniors to live more independently and stay close to their communities.
Safeguarding Elder Rights
Still TGP, with its limited capacity, is not itself a solution for the guardianship crisis. Some disability rights advocates criticize the concept of guardianship in general, viewing it as incompatible with the principle of independent living. They prefer alternative legal arrangements like “supported decision-making,” in which social service providers provide guidance for people on medical and financial decisions while still leaving them legally in charge of their affairs.
Meanwhile, progressive elder law advocates are also gravitating toward alternatives to guardianship that support independence whenever feasible. Alison Herschel, director of Michigan Elder Justice Initiative, says that while guardianship is necessary for some individuals, “we believe there are far too many guardianships and far too many cases that should have been resolved by utilizing less restrictive alternatives.”
The Vera Institute’s study urges court administrators to implement better training so courts can screen cases so people can opt for less restrictive options like supported decision-making. Instead of appointing a guardian for a senior with severe dementia, for example, a judge could arrange for a sibling to gain power of attorney to aid with medical or legal decisions, and provide a home health aide. Even when guardianship is strictly a last resort, the court process can be a framework for meeting a senior’s needs for both care and personal dignity, and providing support without threatening self-determination.
For Cassidy, the TGP guardianship model is not just about getting the right services, but regaining a firm sense of both her abilities and limits. Her guardian hasn’t taken over her life, as she had once feared; instead, it’s a stabilizing presence.
If she ever needs her case worker, she knows who to call. “I carry their card with me all the time.”
How should you live when you know you’re going to die?
It is perhaps the ultimate, eternal question — one we all have to grapple with, but mercifully, don’t have to, until the end is crystallized by our own illness or that of a loved one. Humans may be the only animal capable of grasping mortality, but it’s usually not something on our minds — until it is.
It’s a question I confront frequently as a physician caring for seriously ill patients. One morning some months ago, I met an older man with an aggressive cancer that had turned an avid runner into a voracious reader. He glanced up from his newspaper as I entered the hospital room.
“It’s [a] strange feeling, you know, reading about a world you’ll never get to see.”
After several rounds of chemotherapy — each more toxic than the last — he decided he had had enough. He could go long stretches without contemplating death, he said, until the sight of a far-off date or curiosity about some newly proposed legislation would bring into sharp focus the unavoidable reality: His days were limited.
“I mostly read biographies now,” he told me. “Reading about other lives helps me make sense of my own.”
I began to wonder whether the secret to a good death wasn’t looking forward, but peering backward — whether retrospective examination might be more therapeutic than prospective preparation. I thought of how often I’d focused solely on helping patients navigate the future: how many weeks or months of life they might expect, which procedures they should or shouldn’t consider. These discussions, while important, fail to address what research has revealed about the deeper wants and needs of seriously ill patients.
Nearly 20 years ago, a seminal study in the Journal of the American Medical Association explored what patients and doctors feel is most important at the end of life. Many responses were predictable and consistent across groups. Both doctors and patients, for example, thought it was important to maintain dignity, control pain and other symptoms, and have one’s financial affairs in order.
But where physicians and patients diverged is telling — and suggests both a missed opportunity and a path to progress.
Patients were far more likely to express that it was important to feel that their life was complete, to be at peace with God and to help others in some way.
In other words, to feel that their lives mattered.
A growing body of work suggests that a powerful but underused method of creating this sense of mattering is storytelling — reflecting on the past and creating a narrative of one’s life, what it has meant, who you’ve become and why.
Humans are natural storytellers. We have tremendous power to frame a narrative. The same series of events — becoming a parent, getting a divorce, losing a loved one, finding a job — can be a tale of resilience and restoration or misfortune and regret. The process of bringing coherence to one’s life story is what psychologist Dan McAdams calls creating a “narrative identity.” People get better at identifying important life themes as they age, and those who are able to find the positive amid the negative are generally more satisfied with life.
Physicians are also storytellers by profession. But we’ve traditionally focused on narrating the course of disease instead of helping patients make sense of their lives with it. Creating opportunities for patients to reflect on life experiences, however, could offer an important avenue for healing — whether at the end of life or somewhere in the middle.
In a 2018 study, researchers assigned veterans with post-traumatic stress disorder to engage in either five 30-minute writing sessions in which they reflected on traumatic experiences, or a rigorous 12-week program of cognitive processing therapy (CPT), a first-line treatment for PTSD. The study found that the short writing sessions were just as effective at reducing PTSD symptoms as the resource-intensive CPT program.
Other work suggests that the particulars of storytelling matter. Simply looking back and listing life events doesn’t seem to help. It is the constructing of a narrative — exploring linkages, formulating a plotline — that’s critical for arriving at a coherent sense of self.
And even the pronouns seem to matter.
Using the first-, second- or third-person when reflecting on past experiences can each have strategic advantages. Using the third-person, for example, seems to allow us to better appreciate how we’ve changed over time, while the first-person primes us to look for continuity. Reflecting on challenges by using the generic “you” — “you win some, you lose some” or “what can you do?” — can help create psychological distance from a tough situation and universalize the experience. “I” makes the focus your response; “you” tethers it to the human condition.
When the future is running out, can we make more of the past? I often struggle with my role as a caregiver for patients at the end of life. I know the most healing things I can offer aren’t the things I usually do: pain medications, laxatives, intravenous fluids. Rather, they are at once more challenging and more elementary. To sit. To listen. To explore what it’s all meant.
“I tell myself,” my patient said. “Even if I won’t be around to see it, I helped shape the world of the future. At least my little part of it.”
Ten residents slipped away from their retirement community one Sunday afternoon for a covert meeting in a grocery store cafe. They aimed to answer a taboo question: When they feel they have lived long enough, how can they carry out their own swift and peaceful death?
The seniors, who live in independent apartments at a high-end senior community near Philadelphia, showed no obvious signs of depression. They’re in their 70s and 80s and say they don’t intend to end their lives soon. But they say they want the option to take “preemptive action” before their health declines in their later years, particularly because of dementia.
More seniors are weighing the possibility of suicide, experts say, as the baby boomer generation — known for valuing autonomy and self-determination — reaches older age at a time when modern medicine can keep human bodies alive far longer than ever.
The group gathered a few months ago to meet with Dena Davis, a bioethics professor at Lehigh University who defends “rational suicide” — the idea that suicide can be a well-reasoned decision, not a result of emotional or psychological problems. Davis, 72, has been vocal about her desire to end her life rather than experience a slow decline because of dementia, as her mother did.
he concept of rational suicide is highly controversial; it runs counter to many societal norms, religious and moral convictions, and the efforts of suicide prevention workers who contend that every life is worth saving.
“The concern that I have at a social level is if we all agree that killing yourself is an acceptable, appropriate way to go, then there becomes a social norm around that, and it becomes easier to do, more common,” said Yeates Conwell, a psychiatrist specializing in geriatrics at the University of Rochester and a leading expert in elderly suicide. That’s particularly dangerous with older adults because of widespread ageist attitudes, he said.
As a society, we have a responsibility to care for people as they age, Conwell argued. Promoting rational suicide “creates the risk of a sense of obligation for older people to use that method rather than advocate for better care that addresses their concerns in other ways.”
A Kaiser Health News investigation in April found that older Americans — a few hundred per year, at least — are killing themselves while living in or transitioning to long-term care. Many cases KHN reviewed involved depression or mental illness. What’s not clear is how many of these suicides involve clear-minded people exercising what Davis would call a rational choice.
Suicide prevention experts contend that while it’s normal to think about death as we age, suicidal ideation is a sign that people need help. They argue that all suicides should be avoided by addressing mental health and helping seniors live a rich and fulfilling life.
But to Lois, the 86-year-old woman who organized the meeting outside Philadelphia, suicides by older Americans are not all tragedies. A widow with no children, Lois said she would rather end her own life than deteriorate slowly over seven years, as her mother did after she broke a hip at age 90. (Lois asked to be referred to by only her middle name so she would not be identified, given the sensitive topic.) In eight years living at her retirement community, Lois has encountered other residents who feel similarly about suicide. But because of stigma, she said, the conversations are usually kept quiet.
Lois insisted her group meet off-campus at Wegmans because of the “subversive” nature of the discussion. Supporting rational suicide, she said, clashes with the ethos of their continuing care retirement community, where seniors transition from independent apartments to assisted living to a nursing home as they age.
Seniors pay six figures to move into the bucolic campus, which includes an indoor heated pool, a concert hall and many acres of wooded trails. They are guaranteed housing, medical care, companionship and comfort for the rest of their lives.
“ We are saying, thank you very much, but that’s not what we’re looking for,” Lois said of her group.
Carolyn, a 72-year-old member of the group who also asked that her last name be withheld, said they live in a “fabulous place” where residents enjoy “a lot of agency.” But she and her 88-year-old husband also want the freedom to determine how they die.
A retired nurse, Carolyn said her views have been shaped in part by her experience with the HIV/AIDS epidemic. In the 1990s, she created a program that sent hospice volunteers to work with people dying of AIDS, which at the time was a death sentence.
She said many of the men kept a stockpile of lethal drugs on a dresser or bedside table. They would tell her, “When I’m ready, that’s what I’m going to do.” But as their condition grew worse, she said, they became too confused to follow through.
“I just saw so many people who were planning to have that quiet, peaceful ending when it came, and it just never came. The pills just got scattered. They lost the moment” when they had the wherewithal to end their own lives, she said.
Carolyn emphasized that she and her husband do not feel suicidal, nor do they have a specific plan to die on a certain date. But she said while she still has the ability, she wants to procure a lethal medication that would offer the option for a peaceful end in the future.
“Ideally, I would have in hand the pill, or the liquid or the injection,” she said.
New Jersey recently became the eighth state to allow medical aid in dying, which permits some patients to get a doctor’s prescription for lethal drugs. That method is restricted, however, to people with a terminal condition who are mentally competent and expected to die within six months
Patients who aren’t eligible for those laws would have to go to an “underground practice” to get lethal medication, said Timothy Quill, a palliative care physician at the University of Rochester School of Medicine. Quill became famous in the 1990s for publicly admitting that he gave a 45-year-old patient with leukemia sleeping pills so she could end her life. He said he has done so with only one other patient.
Quill said he considers suicide one option he may choose as he ages: “I would probably be a classic [case] — I’m used to being in charge of my life.” He said he might be able to adapt to a situation in which he became entirely dependent on the care of others, “but I’d like to be able to make that be a choice as opposed to a necessity.”
Suicide could be as rational a choice as a patient’s decision to end dialysis, after which they typically die within two weeks, he said. But when patients bring up suicide, he said, it should launch a serious conversation about what would make their life feel meaningful and their preferences for medical care at the end of life.
Clinicians have little training on how to handle conversations about rational suicide, said Meera Balasubramaniam, a geriatric psychiatrist at New York University School of Medicine who has written about the topic. She said her views are “evolving” on whether suicide by older adults who are not terminally ill can be a rational choice.
“One school of thought is that even mentioning the idea that this could be rational is an ageist concept,” she said. “It’s an important point to consider. But ignoring it and not talking about it also does not do our patients a favor, who are already talking about this or discussing this among themselves.”
In her discussions with patients, she said, she explores their fears about aging and dying and tries to offer hope and affirm the value of their life.
Conwell, the suicide prevention expert, said these conversations matter because “the balance between the wish to die and the wish to live is a dynamic one that shifts frequently, moment to moment, week to week.”
Carolyn, who has three children and four grandchildren, said conversations about suicide are often kept quiet for fear that involving a family member would implicate them in a crime. The seniors also don’t want to get their retirement community in trouble.
In some of the cases KHN reviewed, nursing homes have faced federal fines of up to tens of thousands of dollars for failing to prevent suicides on-site.
There’s “also just this hush-hush atmosphere of our culture,” Carolyn said. “Not wanting to deal with judgment — of others, or offend someone because they have different beliefs. It makes it hard to have open conversations.”
Carolyn said when she and her neighbors met at the cafe, she felt comforted by breaking the taboo.
“The most wonderful thing about it was being around a table with people that I knew where we could talk about it, and realize that we’re not alone,” Carolyn said. “To share our fears — like if we choose to use something, and it doesn’t quite do the job, and you’re comatose or impaired.”
At the meeting, many questions were practical, Lois said.
“We only get one crack at it,” Lois said. “Everyone wants to know what to do.”
Davis said she did not have practical answers. Her expertise lies in ethics, not the means.
Public opinion research has shown shifting opinions among doctors and the general public about hastening death. Nationally, 72 percent of Americans believe that doctors should be allowed by law to end a terminally ill patient’s life if the patient and his or her family request it, according to a 2018 Gallup poll.
Lois said she’s seeing societal attitudes begin to shift about rational suicide, which she sees as the outgrowth of a movement toward patient autonomy. Davis said she’d like to see polling on how many people share that opinion nationwide.
“It seems to me that there must be an awful lot of people in America who think the way I do,” Davis said. “Our beliefs are not respected. Nobody says, ‘Okay, how do we respect and facilitate the beliefs of somebody who wants to commit suicide rather than having dementia?’ ”
If you or someone you know has talked about contemplating suicide, call the National Suicide Prevention Lifeline at 800-273-8255, or use the online Lifeline Crisis Chat, both available 24 hours a day, seven days a week. People 60 and older can call the Institute on Aging’s 24-hour, toll-free Friendship Line at 800-971-0016. IOA also makes ongoing outreach calls to lonely older adults.
She’s just won a big prize as Australia’s most innovative nurse. It was a recognition of the way she is changing the way the elderly end their lives.
Her mission as a nurse in Canberra is to help people have what she calls “a good death”.
She says too many people have “bad deaths” where fear and loneliness dominate their last moments.
Her radical idea is to involve people who are in their last months in the planning for those final fearful moments. The dying attend meetings where their own deaths are discussed.
She says a rigorous study of the results of the new system demonstrates clearly that it is a better way, and she’s pressing politicians to adopt it in the rest of Australia and beyond.
She also thinks there is too much emphasis on research to prolong lives at the expense of spending more to ensure that people die in peace at the right age.
Ms Johnston is a “nurse practitioner” who works in palliative care – it’s the most senior type of nurse, qualified to diagnose illnesses and prescribe drugs and treatments.
She has a missionary zeal for involving the patient in (arguably) the most important process affecting them – their end.
In the residential homes where the system is now used, the dying person attends the meetings and hears how their death will be dealt with. Their views are listened to and acted on.
“If we don’t ask the questions and give people the opportunity to talk about the end of life, we risk isolating people in their last months,” she says.
“They feel like no one gets it – no one understands – what’s going on, and that can be frightening.”
Researchers have studied 1700 people in the ACT at the end of their lives, comparing those where the system is in operation and those where it is not.
The study – the first of its kind in the world – involved rigorous measurement of a raft of variables like how soundly people slept in their last months and how much medication they needed.
The researchers devised a “quality of death” index. Ms Johnston says the results show that the new way works.
She argues that there should be a switch from maintaining uncomfortable and painful lives to the quality of death. “People are living longer but their quality of life is reduced so they are not living well enough or dying well enough,” she says.
“We are not valuing the end of life because we are not putting money into it.”
With the new system, people aren’t told bluntly that they are dying.
Ms Johnston says that she might have a conversation with a resident of an aged care home and ask them how they saw their future. In that conversation, the old person might well say that they thought they were dying.
“I ask them where they are at, what’s important, and most people tell me they are dying,” Ms Johnston says.
“If they are leading this conversation, It’s not confronting. They have taken us there.”
“Gently, we normalise death and dying. We help the staff to be able to talk about it. We support the relatives and loved ones through the process.”
She said that the elderly people she deals with generally don’t fear death. “Most people are ready. They are sick and they’ve had enough. They are ready to go.
“To help someone in their last months of life, we need to know them – to sit with them and talk to them. We need to know what’s important. How do we get this right for the person?”
That is what happened, for example, with Chris Dillon, whose death on March 29, 2017 was peaceful, according to her daughter Rose.
The aged mother had been in a residential home in Ainslie for just over two years.
According to her daughter, Mrs Dillon said one day that she felt tired and she was close to the end of her life.
Once that was recognised, the palliative care team became involved.
“She was a pragmatic person,” Rose says.
“She wanted to know what it would feel like, would it hurt, how would people know that she was dying. What would they do with her body?
“And then Nikki came along. She sat down really close to Mum and said: ‘I’m Nikki. I’m from palliative care and we need to talk about some things’.”
According to Rose, her mother simply replied: “What? About me dying?”
“So the conversation started naturally,” she says.
“The impact that Nikki had on Mum’s death was massive. It allowed Mum to have a peaceful death.
“She wasn’t frightened.”
The new system involves staff keeping a kind eye on residents
At the Calvary Haydon Retirement Community in Bruce, for example, manager Kim McGovern says she and her staff quietly look at residents every month to see “who might not be there next month”.
Once people are identified, they are talked to sensitively.
An “individual care plan” is drawn up with the involvement of the resident.
“It’s their choice. We involve them early on,” Ms McGovern says. “It’s their last journey.”
The involvement of the dying person allows proper preparation, both medically and emotionally.
This means a final crisis, in which the patient is rushed to hospital to die in a chaotic emergency, is less likely.
Ms Johnston is an extraordinary character – bright and vivacious (at least when she’s expounding on the importance of helping people have “a good death”).
She may have dark moods, in that she says she needs to put her “armour” on before she attends some deathbeds.
And she does cry – after all, she’s got to know the person – but, as she puts it, “this isn’t my grief”.