One in four people aged 65 or older has diabetes. The disease is the seventh leading cause of death in the United States and a major contributor to heart disease. Experts have recommended that the best way to slow the progression of diabetes—and help prevent its many complications—is to maintain strict control of blood sugar levels. For healthy younger people, this means keeping the target blood sugar level (known as A1c or HbA1c) lower than 6.5 percent to 7.0 percent.
For older adults who have a limited life expectancy or who have advanced dementia, however, maintaining that target blood sugar level may cause more harm than good. For example, these older adults may not live long enough to experience potential benefits. What’s more, maintaining these strict blood sugar levels can raise the risk of potentially harmful events such as low blood sugar (also known as hypoglycemia). This can cause falls or loss of consciousness.
For these reasons, many guidelines now suggest targeting higher HbA1c targets—such as between 8.0 percent and 9.0 percent—for older adults who have multiple chronic conditions or limited life expectancy, or who live in nursing homes.
There is not much existing research to guide health care practitioners as to what the appropriate levels of diabetes medications are for this group of older adults. There is also little information about the effects for these individuals of taking fewer or lower dose of diabetes medications.
Experts suspect that lessening diabetes treatment in these older adults has the potential to prevent unnecessary hospitalizations due to lowering the risk for harmful drug events and increasing the patients’ comfort.
In order to investigate the issue, a team of researchers conducted a study—one of the first national studies to examine potential overtreatment and deintensification of diabetes management in nursing home residents with limited life expectancy or dementia. The researchers chose nursing home residents to study because admission to a nursing home could give healthcare practitioners a chance to learn more about patient goals and preferences and to review and adjust medications accordingly. The researchers published their results in the Journal of the American Geriatrics Society.
The researchers examined information from Veterans Affairs nursing homes from 2009 to 2015. Their goal was to learn more about older adults with diabetes, particularly those nearing the end of their life or who have dementia. The researchers investigated whether these older adults were overtreated for diabetes, whether they had their diabetes medication regimens lessened, and what effects might result from lowered doses, types and/or different kinds of medication.
The researchers wanted to learn specifically how often diabetes treatments were lessened. Among the nursing home residents identified as potentially overtreated, the researchers examined how much their diabetes treatment regimens were lessened during the 90 days of follow-up.
The researchers did not consider insulin dose changes, because insulin doses may be influenced by factors such as eating habits.
The researchers said they observed potential overtreatment of diabetes in almost 44 percent of nursing home admissions for veterans with diabetes and veterans who had limited life expectancy or dementia. Potentially overtreated residents were about 78 years old and were nearly all male and non-Hispanic white. Two-thirds of the residents had been admitted to nursing homes from hospitals. A total of 29 percent had advanced dementia, almost 14 percent were classified with end-of-life status, and 79 percent had a moderately high risk of dying within six months. Many were physically dependent and had heart disease and/or potential diabetes-related complications. In addition, about 9 percent of overtreated residents had a serious low blood sugar episode in the year prior, emphasizing the need for deintensification.
Nearly half of residents received two or more diabetes medications, and those with higher HbA1c values of between 6.5 percent to 7.5 percent received more diabetes medications than those with lower HbA1c.
The researchers concluded that many veteran nursing home residents with limited life expectancy or dementia may be overtreated for their diabetes at the time of admission. The researchers suggested that future studies examine the impact of deintensification on health outcomes and adverse events to better understand the risks and benefits of diabetes management strategies in this group of older adults.
What is it like to care for someone you love who is dying from advanced cancer at home during lockdown? Kate Binnie discusses it can heighten isolation and moral distress for the family caregiver
One evening in early May during lockdown, Alan calls me almost raving with exhaustion. He’s caring for his mum, my friend Mary, who is in the final stages of stomach cancer and who has chosen to die at home. It seems to him that this last part—where she has stopped eating or drinking and is in bed hooked up to a syringe driver for pain relief and sedative medication—is going on forever. Tonight she seems irritated and upset although she is not coherent, and Alan cannot soothe her. There is a live-in carer who is helping with the heavy lifting, changing of sheets and so forth, but otherwise Alan is completely alone apart from short daily visits from the community nurses. We talk for a while and I suggest he a) tells the palliative care team what is going on and b) writes down how he feels. An hour or so later an email arrives:
In lockdown with having more than too much time on my hands, I question how in 2020 this cruelty is continuing without any other choice than to endure it or look away.
The nurses keep saying that the drugs are “keeping Mum comfortable” but I can’t see there is any way to describe what I witness to display any kind of comfort—a slow death is not comfortable for anyone no matter how you sugar-coat it.
Alan is right. There is no evidence to prove that sedation improves quality of life for the patient with terminal delirium/agitation and of course we have no first-hand accounts from dying patients to draw on. [1] What he describes is the shock and moral dilemma of a totally untrained and unprepared member of the public, caring for a loved one in the last phase of life and finding it hard to communicate effectively with the professionals charged with his mother’s care. All this is made worse due to physical isolation during the covid-19 pandemic.
I feel like I’m failing my Mum, but actually it’s the law that is failing us both. I have had to administer oral morphine as the carer is not allowed because it is a controlled substance. My mind has turned to helping her end it, but I know she would not want me to ruin my life by doing something that would put me in prison. The desperation to see my mum in peace is a hugely strong emotion. It made me wonder how stressed I, or someone in a similar position, has to get before the wish to end the suffering becomes stronger than self- preservation.
I have also considered taking some of the anti-anxiety medication that has been provided for her just so I can sleep. If I found it all too much, I could drink the three bottles of morphine and I assume that would do the trick. Being someone that has struggled with life in the past and has turned to drink and drugs as a coping mechanism I’m amazed that I am the person that has to administer and has access to all these drugs.
Alan’s complex feelings about being in charge of controlled medications do not appear to be singular. A recent review of family caregiver experiences of managing medications for patients dying at home revealed a lack of training and support for family caregiver who worry about over or under-medicating their loved one. [2] Patient and family attitudes to anticipatory medications and issues around misuse in home deaths are under-explored in the literature. As Alan discovered—and the Wilson review corroborates—health professionals lack confidence in discussing the ethical implications of family care givers becoming medication gatekeepers at a time of extreme stress and anticipatory grief. [3] A stress that is magnified during lockdown where normal structures of support are unavailable leaving Alan feel traumatised, angry and abandoned.
How on earth is it kind to put a family pet out of its misery but somehow say it’s ok to drag dying out like this in a human? Do you ever stop being a child when it comes to watching your parent deteriorate and have no real belief that they are not suffering? Surely this is traumatic for anyone?
With the lockdown as it is, I cannot share this with people properly and have to make do with video and phone. I’m glad I’ve managed to hold on to rational thought and have not acted illegally due to immense pressure added to the temptation of having the means left right under my nose.
How many people will maintain that rationality in this lockdown, and whose fault would it be if they buckled under the strain? At the very least collective responsibility but most likely the individual would carry the blame, and all the people that can’t face up to the truth about this problem with the law will continue to live in the world they describe to themselves as ‘kind and comfortable’ without acknowledging that other people feel their loved ones are being effectively tortured and the onlookers traumatised. It would never have been mum’s choice to die this way.
In spite of current urgency in the media and within health and social care cultures during the pandemic to talk about death, dying and grief, there’s another level of this conversation about dying that we are still not having. Yes, advance directives are important so that treatment plans, place of care, and death can be discussed, and informed choices made in good time. But what about the end bit? Is the messy reality of and fallout from a home death really considered?
Specialist palliative care professionals are trained to meet the physical, emotional, and ethical needs of patients and families, but they are not resourced to be available for all home deaths, all of the time. Getting adequate home support (especially during lockdown when resources are directed elsewhere and infection risk reduces human contact) requires hugely responsive joined-up thinking, enough manpower and resources, competent relatives and excellent communication. It only takes a few mis-timed, mis-judged, and overly stressed conversations for this fragile system to break down. And still—the body takes its sweet time. There is nothing more lonely than waiting for someone you love to die. Even experienced doctors in this position are pushed to re-appraise what amount of suffering is acceptable at the end of life. [4]
A survey from 2019 by Dignity in Dying revealed that 73% of people with a life-limiting illness with six months or less to live would choose to change the law so that they could choose an assisted death. And yet in practice conversations about this are often taboo. My mother—who died nine months ago at home from heart failure—kept asking about the possibility of assisted dying in spite of her strong spirituality and huge optimism. This was not depression or despair, but a fine mind and a loving heart wanting to maintain her dignity and protect her child (me) although I reassured her constantly that we would cope and that it would be OK. I was there when she asked the specialist about it and there was a sense of real discomfort in the room, as if she’d made a bad smell at a polite dinner party. It took the two of us, supported by a fantastic GP and heart failure nurse, working calmly and consistently with everyone involved with Mum’s care to have open conversations about dying, until we had clarity about no more hospital admissions, no more oral drugs, or other treatment.
I have over 10 years’ professional experience of being with dying so knew what to expect when Mum’s time came. For example, I understood that there was a complex and delicate relationship between the patient (Mum) the family care giver (me) and the healthcare professionals, and that the maintenance of this relational triangle was key. [5] In terms of actual dying, I recognised that the introduction of sedatives would reduce mum’s ability to communicate, and towards the end I knew what the frightening changes in Mum’s breathing meant and also that this might go on for some time until her last breath. But for most family members, watching someone die at home with all of the responsibility that this entails, is an un-familiar and un-held experience, broken only by the precious 30 minutes a day when the community nurse visits to introduce some calm, practical sense into what feels like a Kafka-esque alternate reality. [6] And remember, this was pre-lockdown. I was not alone and had my family and friends around to help me rationalise, to provide physical comfort and time to eat and sleep.
I suggest that alongside the current policy-level drive for supporting home death underpinned by evidence that this is what many people would choose, there needs to be a rapid re-appraisal of what this means for family members who are not trained or supported to do the job of extreme caring (which includes the administering of controlled drugs), and for which they are totally unprepared. [7] Funding and provision must be made within primary care, informed by the principles and practices of palliative care, to properly educate and support families through the dying process and into bereavement so that what Alan describes in the desperate last 12 hours of his mother’s life does not end in long-term mental health consequences or worse, a suicide or prison sentence. On a more subtle, emotional level we need to understand that calling NHS111 at 2am when your mother is terminally agitated is a cry for help from someone experiencing the searing pain of a breaking attachment.
The next morning, I check my phone. Mum died at 3.45am.
I call Alan who is relieved and exhausted He is facing the organisation of his mum’s cremation, the sorting out of her stuff and his life onwards in a seemingly endless lockdown. There isn’t going to be a funeral. I suggest he try to get some sleep, talk to his GP, think about bereavement counselling, but he is in no mood for any sort of healing conversations with the professionals. I want people to know about this Kate he insists. I can’t be the only one this is happening to, can it? No, it can’t be. Around 450 people die every day in the UK from cancer, and about 25% of all deaths occur at home. What is it like for those families at the moment with huge pressure on services and hands-on community support from friends and relatives an infection risk and therefore forbidden?
The covid-19 pandemic has shone a fresh light on the importance of talking about dying, loss and grief in strange times where relationships are cruelly truncated by sudden hospitalisations, induced comas and separation from loved ones and community rites of passage. But deaths like Mary’s from cancer are happening every day, all the time.
Alan’s story shows us that what is a difficult and lonely experience at the best of times is made so much more traumatic during lockdown. Alan hopes that sharing his experience will lead to a greater awareness of just how traumatic it can be to facilitate a home death (which sounds cosy yet can be anything but). He wants to tell us about what he feels is a cruel lie that dying is kind and comfortable, and he challenges us to examine the dissonance between the reality of his lived experience and the beautiful idea of the “good death”.
“When the nurses told Else that Poul could die soon, she stayed with him all the time at the nursing home, sleeping on a mattress next to his bed,” said Sofie Mathiassen, the recipient of this year’s Bob and Diane Fund grant.
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.”
Poul, 82, at the dinner table with his wife, Else.Else, 83, at the dinner table with her husband, Poul.
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.
Poul and Else Mathiassen in their house in Skanderborg, Denmark.Dinnertime at Poul’s nursing home.A mural at Poul’s nursing home.One week after Poul died, Else celebrated her 84th birthday. She lives alone in their house and plans to stay there.
Mary Beth Bowen holds a portrait of her mother, Rosemary Bowen, who died last year at 94. Mary Beth started filming her mother’s last days as she stopped eating and her body shut down.
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.
A ‘good death’?
Rosemary would have preferred to take a pill to quickly end her life, but only a handful of states have aid-in-dying laws, and Maryland is not one of them, though it came close to passing such a bill earlier this year. Fasting, or Voluntarily Stopping Eating and Drinking (VSED), is not prohibited by any state.
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.
David L. Bowen and his wife Rosemary Bowen.Rosemary Bowen’s beloved sewing machine
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.
Mixed reactions
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
Sharing love
Saying “goodbye”
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?
Aging Gaps
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.”
