[S]tatistics about the US homeless population are staggering. More than a million people face homelessness each year in the United States, and these individuals often have multiple complex illnesses and comorbid mental health conditions. Orchestrating care for the homeless population poses significant challenges.
Little is known about the end-of-life (EOL) experiences of homeless persons. A major gap in knowledge exists regarding the symptoms experienced by homeless persons at or near the EOL—information that would help clinicians not only manage these symptoms but also assist homeless persons with advance care planning and decision-making around death and dying.
To characterize these symptoms, Tobey and colleagues[1] surveyed homeless persons at a medical respite program who were approaching the EOL. The demographic data derived from this study speak to the distinct palliative care needs of the homeless. Sociodemographic data from this study, showing that 60% had substance use disorders and 85% abused alcohol, will greatly affect the provision of care for this population. All homeless patients interviewed reported experiencing pain, and psychosocial needs were equally significant. Nearly all (95%) of the sample had experienced the death of a loved one, 25% worried daily about their own mortality, and 75% worried that no one would even know that they had died.
Viewpoint
The palliative care needs of various subgroups of people with serious illnesses are well documented in the literature, providing data about the unique physical and psychosocial needs of patients across many diagnoses and clinical settings.[2,3,4] The study by Tobey and colleagues adds to the body of literature by describing the distinct needs of the homeless population. The findings of this study provide insight for clinicians and for health policy administrators to attempt to meet the challenging needs of the homeless.
The study’s design was commendable. Direct interviews with homeless persons helped to understand their unique needs during their last months of life. The use of a medical respite center serving the homeless provided an ideal environment for the study.
Although the study sample size was small, the findings are rich in meaning and have implications far beyond the medical respite unit where the study was conducted. These findings will also apply to the many diverse settings where homeless persons seek care: public hospitals, emergency departments or urgent care centers, Veterans Affairs hospitals, and other settings.[5,6] Continued research and clinical advances in the care of the homeless are obligations of palliative care, a field committed to comfort and respect for all patients.
[M]ore New Yorkers are choosing to spend the last moments of their life in the comfort of their own home — rather than a hospital bed.
The percentage of terminally ill Big Apple residents who pass away at home has been on the increase for the past eight years.
“It’s become understood it’s more comfortable to die at home,” said Arthur Caplan, director of medical ethics at NYU Langone Medical Center.
“It’s become acceptable to think and plan about dying at home.”
Back in 2007, just 18.9 percent of deceased New Yorkers passed away at in their own home, according to figures compiled by the city’s Department of Health & Mental Hygiene.
That figure has been climbing every year — reaching 23.4 percent in 2015, according to the most recent data available.
“I do think it’s a trend,” said Dr. Susan Cohen, section chief of palliative care at the NYU School of Medicine. “If we’re having the conversations that will offer [home death] as an option, they will take it.”
City hospitals still remains the most preferred the place to pass. But hospital deaths have been sliding down for years — from 51.4 percent in 2011 to 46.4 percent in 2015.
While city data doesn’t specify what ailment ultimately leads to home death, palliative care researchers and medical ethicists said that dying patients are choosing comfort over more medical treatment.
In addition, data on deaths at licensed hospices in the city has risen to 5 percent from just 1.8 percent in 2011.
It’s not clear to medical professional what might have changed patients minds about where they choose to live out their last days.
Cohen – who is also director of the Palliative Care Program at Bellevue Hospital – cited the American Board of Medical Specialties’ move in 2006 to formally recognize palliative care as an official specialty.
That recognition could have eased the concerns of patients and their families about the process.
Caplan traced roots of this die-at-home trend back to the 1980s and early 1990s when AIDS ravaged America’s gay community.
“HIV led to people re-think how to care for the dying. For a gay man (in that era) being in hospital was not a comfortable place to be,” Caplan said. “There was a stigma [in a hospital] but [at home] you could be surrounded by your loved ones and friends.”
[D]awn Burnfin’s 94-year-old grandmother recently had a massive stroke in a Missouri nursing home. She quickly recovered well enough to tell the end-of-life hospice workers caring for her to go home, since she had no plans to die.
But the Medicaid funds that help pay for her care are now up in the air.
“I don’t know where she would go,” Burnfin, 43, says of her grandmother, if she loses her bed in the nursing home. “It’s really scary.”
Included in the Better Care Reconciliation Act, the bill Senate Republicans have proposed to replace the Affordable Care Act, are an estimated $772 billion in federal cuts to Medicaid through 2026, plus a reduction in the funding formula that would sharply decrease spending beyond that. The nonpartisan Congressional Budget Office projected on Thursday that federal Medicaid spending in 2036 would be 35% less than under current law.
Proponents of the bill say the new Medicaid structure would increase states’ flexibility to design their Medicaid programs around the unique needs of their populations. But the proposed cuts have many like Burnfin wondering who will pay to keep her grandmother cared for?
While Medicaid is best known for insuring low-income Americans, the government program also provides a vital safety net to elderly Americans who need long-term care, either at home or in a facility. Medicaid covers about 60% of nursing home residents, and according to a 2015 study by Truven Health Analytics, roughly 2.2 million elderly Americans received Medicaid-financed long-term care in 2011. As more baby boomers reach older age, these numbers will only grow
Burnfin lives in Chisholm, Minn., not close enough to provide hands-on care to her grandmother, although though she has plenty of expertise: Burnfin herself works as a home care worker, providing in-home assistance to an elderly woman on Medicaid. Her own livelihood depends on the program’s health.
Medicaid is such an important safety net because Medicare, the federal health insurance program for those ages 65-plus, does not cover the kind of routine assistance that most elderly need: help with dressing, bathing, eating and other activities of daily living. According to government estimates, 70% of people turning 65 will eventually need such assistance in older age.
When it comes to finding—and financing—long-term care for older loved ones, most families are on their own. And many end up turning to Medicaid when their money runs out. It’s not hard to drain your life savings on nursing home care that runs around $82,000 per year but can go much higher in costlier areas of the country. To qualify for Medicaid for long-term care, applicants need to have depleted most of their resources. Criteria vary by state; in New York, for example, the asset limit is about $14,000, not including a certain amount of home equity.
Eligibility criteria would likely get even stricter under the Better Care Reconciliation Act, experts say. That’s because the bill would fundamentally change the entire Medicaid program, not just the parts affected by the ACA: it would switch Medicaid financing from an open-ended benefit to one that’s capped.
Instead of receiving increased federal funding to meet mounting needs—say, to fund opioid addiction treatment or to pay for a new breakthrough drug—beginning in 2020 states would receive a capped amount. This would represent “a transfer of risk, responsibility, and cost to the states of historic proportions,” according to a statement by the National Association of Medicaid Directors, a bipartisan organization representing leaders of state Medicaid agencies nationwide.
Spending caps would become even more harsh in 2025, when Medicaid spending could only rise each year with general inflation, which tends to lag medical inflation by several percentage points. “The bill’s Medicaid cuts are really about starving the program, and states won’t think about the long-term, they’ll think about surviving until the next year,” says Edwin Park, vice president for health policy at the Center on Budget and Policy Priorities.
Medicaid finances are already stretched, and there’s not that much fat to cut in the system. “It’s not like Medicaid systems have been rolling in cash under the current system, due to the need,” says Eric Carlson, a directing attorney in Justice in Aging, a nonprofit legal advocacy organization.
Nobody knows yet how states would respond to the cuts, but experts say all long-term care supports and services are vulnerable–that includes quality care in nursing homes for patients whose needs are best met in such facilities, and also in-home care for patients who can stay at home with assistance.
Among the limited choices states would have to cope with the cuts: they could restrict Medicaid eligibility, reduce the already-low payments Medicaid makes to medical providers, and reduce the number of services that Medicaid covers. In-home care is generally considered an optional benefit in state Medicaid programs, so it would likely be on the chopping block if the Senate bill becomes law. Nursing home care, by contrast, is considered mandatory. “What’s horrible about the bill is it will force institutionalization,” says Michael J. Amoruso, president-elect of the National Academy of Elder Law Attorneys and a practicing attorney in Rye Brook, N.Y. In other words, the bill would force older, vulnerable citizens out of their homes and into nursing facilities.
This week, Senate Majority Leader Mitch McConnell postponed the Senate’s vote on the bill until after the July 4 recess, hoping to shore up support. Burnfin agrees with critics who say the Senate’s actions are shortsighted. Keeping older patients at home for as long as possible not only increases their quality of life, it also generates economic activity in their communities, Burnfin says: the residents continue to pay property taxes on their homes and consume goods and services in their area. They also employ caregivers in greater numbers than nursing homes. The ratio of caregivers to care recipients is 1:1 at a patient’s home, but about 9:1 in a typical nursing home, Amoruso says.
Burnfin has an even more personal connection to Medicaid: her family is also insured through the program. She works full-time as the primary breadwinner for her family, but her income remains low enough that they qualify. Her husband is disabled, and the four of her children who live at home have complex medical needs. She worries for their future as well.
“We couldn’t survive without the Medicaid,” she says. “We just couldn’t.”
A palliative care specialist reveals what she’s learnt
[W]ith two decades of experience in helping people approach their final days in the best way possible, Adrienne Betteley shares her most touching and disturbing moments
First as a nurse, and then working with Macmillan Cancer Support, I have spent nearly 20 years helping people during the final months of their lives – and making sure that as many as possible have a “good” death is a great privilege.
If my experience of end-of-life care has taught me anything, it’s that there is indeed such a thing as dying “well”. Of course, the way we die varies depending on the cause of death, as well as the individual needs of the person, but there is also a tragic variation in the care and choice that people have as they approach their end.
At Macmillan, we believe the first step in achieving a “good” death is talking about it more – as we set out in our recent report, No Regrets. We looked at the taboo around discussing death, and how planning ahead can help people to die in a place of their choice and to have more control over their treatment.
So, in the spirit of talking more, and being honest, I’m sharing some of my experiences. I hope that it inspires others to do the same.
Dennis’ late wife, with her son (Adrienne’s husband) and grandchildren.
Closure is important
The first time I encountered death was when I was seven years old and living in Australia in the 1970s. My best friend, Stephen, died of leukaemia at the age of 11. He was the son of some close friends of my parents and was like a big brother to me. He was so kind-hearted, and I really looked up to him.
Death wasn’t seen as something children should know about, so I never visited him at hospital or went to his funeral. No one talked about Stephen dying, and I had recurring nightmares about it. I feel that I never had closure, and still think about it now sometimes.
Adrienne Betteley
Don’t let fear stop you
When I was 25, and living in Cheshire, my maternal grandmother Eileen was diagnosed with oesophageal cancer. Her reaction to finding out she was dying was calm; she began talking about her memories and writing them down.
I was pregnant and my granny “held on” until my daughter, Jasmine, was born. I took my daughter to hospital to meet her great-grandmother, a few weeks before she was moved to a hospice.
The experience with Stephen had scarred me, and I didn’t visit her in the hospice. I was too afraid. I thought it would be like a Victorian sanatorium, with people wailing and crying out.
Years later, while I was a student nurse, I realised a hospice can be a place of joy and peace – somewhere to treasure the end of life, rather than focus on death.
I regretted that I had let fear stop me saying goodbye to someone I loved dearly.
Adrienne Betteley couldn’t face visiting her grandmother in a hospice
Trust a professional
My first career was in architectural stained glass, but I also had a part-time job at a nursing home. One of the nurses asked me to help her lay out a woman who had just died. I was very nervous, but it turned out to be an amazing experience.
I had never seen anyone treat another person with such gentleness and respect. As the nurse washed her and did her hair as though she were still alive, I was in awe. She made her look lovely, in her favourite clothes and make-up.
I understood the huge value that this nurse placed on another person’s life. It was this moment that helped me choose my own future in caring for people at the end of their lives.
Focus on pain relief
While waiting for my nursing training to start, I worked in a different nursing home, where I had an awful experience.
I was looking after an elderly woman who was dying of uterine cancer and had become bedbound. One day, the nursing sister on duty told me to get her out of bed to use the commode. I went to do as I was told, but as soon I touched the woman she dug her nails into me and screamed out in pain. I had never witnessed such agony.
Filled with rage, I went straight to the nurse and shouted at her that nobody in this day and age should be allowed to experience such pain. Why were we moving her when it was clear she needed to be catheterised?
She listened to me and sorted out a catheter and a syringe driver for the pain. But it made me determined that no one should have to experience pain like that.
Communication is key
My father-in-law Dennis had been employed on the Crewe railway works, and after years of exposure to asbestos he was diagnosed with terminal lung cancer.
It was the poor communication we encountered that was really upsetting. He was never told his prognosis by a medical professional; in fact a hospital doctor, knowing my nursing background, asked me to tell him instead. I couldn’t believe they would put that kind of pressure on me. But I went ahead and did it; I felt that at least I would do a better job than this doctor.
Adrienne Betteley’s late father-in-law, Dennis
As soon as I’d told my father-in-law, I felt like the grim reaper. The whole experience blurred the boundaries between my professional life and my private relationship with him – it was damaging and I felt a mixture of guilt and anger.
Dennis was encouraged to have palliative chemotherapy, without being warned of the side effects. Any extra time the chemo bought him was overshadowed by painful mouth ulcers, nausea and fatigue. The treatment destroyed any quality of life, and barely extended it: he died within six months.
If he had been given an informed choice about treatment, I’m sure things could have been different.
Say goodbye the right way
A few years ago, my mother died of oesophageal cancer, like her own mum. My dad and I were at her side, and I’d spent the last week in a camp bed next to her, mopping her forehead as we shared memories.
On the night she died, she put her arm around me and said: “Adrienne, I have to thank you for being the most wonderful daughter.” What a privilege to be able to use my knowledge and experience to support my mum and make her death easier.
Adrienne Betteley’s late mother
A Macmillan occupational therapist had transformed mum’s quality of life, making it possible to fulfil her wish of dying at home. As a nurse, I could advocate for her, and demand the right pain relief – but it really brought home how hard it would be for people without my professional background.
Knowing I’d done everything possible to fulfil her wishes made the grieving process easier, but I still had frustrations about what could have been better – especially the lack of support available at the very end. It sounds clichéd to say “dying is inevitable” or “death is the only certainty” – of course we all die, everyone knows that. But all too often, it feels like we are hiding from it. The fact that it will affect every one of us should galvanise us into action, so we demand a “good” death that is pain-free and meets our preferences about treatment and location – for ourselves and those we care about.
[M]aggie Norris endured two significant family deaths just six years apart. First, her stepfather was diagnosed with bladder cancer, which spread to his lungs and his brain. He passed away in 2008. Then, her biological father was diagnosed with lung cancer, which metastasized to his spine. He died in 2014.
Caring for her biological father and her stepfather before their deaths meant that she, her sister and her mother had to put their lives on hold. Caring for them meant everything from bathing and administering medications to planning meals and overseeing care, all of which she said amounted to a full-time job. While her stepfather was more forthcoming about his illness, her father was not as open about his, which led to Norris and her sister not finding out about his prognosis until things had gotten difficult.
In between all of this, Norris said her family conducted research in order to understand the illnesses. It was not clear how these conditions would progress or what they should do to ensure the best care was provided.
“He didn’t openly talk about it with family or his primary oncologist, so by the time we found out he was really in a tough spot,” Norris said, referring to her biological father. “What people don’t understand is death is a process. It doesn’t happen in a day or a week. It is over the course of several months or several years. It’s an emotionally and situationally really complex to navigate.”
An idea emerged in the aftermath of her grief. What if there was a way to making end-of-life planning easier? How can discussing advanced care be simplified in a way that keeps family members, medical professionals and other stakeholders in the loop? Those questions led her to create After, an end-of-life planning software that provides informational healthcare videos, organizes key legal and healthcare-related forms, and coordinates end-of-life care requests with stakeholders involved in patients’ healthcare decisions. Norris founded the company in January 2017 and is preparing for a soft launch this August.
The software features animated videos that walk patients through what to expect with their diagnosis for the most common causes of death including cancer, heart disease, Alzheimer’s, chronic lower respiratory disease, diabetes and stroke. It also allows patients to organize their advance care planning and power of attorney information. But what distinguishes the software, Norris said, is its personalized, compassionate questions regarding how the patient wants to spend their last length of time.
“No one likes talking about death and dying, even if it’s your job to have conversations with patients about death and dying,” Norris said. “A lot of times physicians wait for families and patients to come to them with questions. The problem with that is the first stage of grief is denial.”
Norris is in the process of determining where to best place her software. It’s a natural fit for the healthcare industry, but she said she could also see the software being applied by lawyers and financial planners, or pharmacist. Navigating bureaucratic hospital systems and healthcare laws could also be tough for the company going forward, she added.
Still, Norris is aiming to provide vulnerable patients with a way to regain control over their final moments and initiate the uncomfortable, yet necessary conversations surrounding death.
“How do you make this conversation happen more often and easier and more accessible?” Norris said. “There’s this empty space there, and we’re trying to fill it with software.”
Death doulas offer education, support to those seeking alternative options while dying or grieving
A screenshot of a video documenting a home funeral shows family members visiting their deceased loved on in a home setting. The video was produced by Lee Emmert and the University of Oregon’s School of Journalism and Communications Department.
By Courtney Vaughn
[W]hen both of her parents died six weeks apart, Nancy Ward had to confront death in a profound way.
She was lucky, sort of. Her parents had prearranged for their care after their deaths, but Ward recalls being uneasy with the post-mortem process when her father died of congestive heart failure.
“Up until this point, I had never seen a dead body because I was about as death-phobic as they come,” Ward says. “A man came into the room, he looked about 14, and unrolled a black plastic body bag on the gurney. I’m going, ‘Oh my God. This man was just living and breathing and now you’re gonna put him in a black plastic bag and do what?’ Put him out on the curb for waste management to pick up?”
Ward succinctly recalls the emotional sterility of the situation.
Nancy Ward
“This doesn’t feel right, this doesn’t feel good, it doesn’t feel loving, or respectful,” she thought to herself. “He doesn’t know my father. I know my father.”
Six weeks later, her mother died.
“I knew what was coming and didn’t like it, but I had nothing to replace it with,” Ward says.
Afterward, she became a death midwife, or “death doula” as some call it, availing herself to others so they didn’t have to go through the same process she did with her parents.
Ward is now used to confronting death. In fact, she and others have made a living out of it.
A few years ago, Ward and other colleagues in the death directives industry teamed up to form the End of Life Care Collaborative. Members help educate and guide people in their quest for home funerals and other self-directed death practices.
The group focuses on serving those who are dealing with the death of a loved one, or preparing for their own death.
Services range from home funeral preparation and arrangements, to help with navigating the traditional funeral process, to emotional and practical support for those delving into the end of their own lives, and a gamut of other services to serve those confronting death.
The ultimate goal, members say, is to help people achieve greater meaning, or a more comfortable process around dealing with death and accepting loss. To get there, clients must be willing to shake off some of the cultural stigma of death.
“As a society, we aren’t comfortable with dealing with death because it reminds us of our own mortality,” Ward says. “We think everybody should know what their options are and right now, they don’t. We’re trying to reach the people who want it done differently but don’t know what different looks like.”
Ward and the collaborative team help educate people on what their options are for preserving a loved one at home after they’ve died, or bringing the body of a loved one home if they choose.
Ward says most members of the collaborative try to operate on a sliding-scale fee system, to make sure no one is turned away because of finances.
“We all have different areas we like to focus on and that’s what makes the collaborative so important,” she says. “We can do everything from the totally esoteric to the toally practical.”
That means being a listener and helpful guide, or doing a load of laundry or providing a meal for a grieving household.
She points to a recent client she worked with- a woman dying of cancer- who wanted to be prepared when her final moments came, but more importantly, wanted to rely less on her family for her physical and emotional needs.
“She said, ‘my family is having a really hard time with this …I don’t want to burden them with my own questions and expressions, this is what I need you for,'” Ward recalls.
“Their psychological and emotional needs are unmet,” Ward says of many terminally ill patients. “My involvement is just simply working with the person on a psychological, spiritual, emotional level.”
Members of the collaborative are not isolated in their quest to provide resources and support for death directives, but their services aren’t widely available, or even widely culturally accepted.
Asher Wallis
“I have seen a good deal of anxiety arise from family members who are trying, in the midst of disorienting grief, to figure out what their loved ones, who had not planned logistically or financially for the events that would follow their death, would have wanted,'” Asher Wallis, an End of Life Care Collaborative member and grief counselor, explains.
He attributes some of the sources of that unnecessary stress to “culturally sanctioned misinformation about the physiological and psychological nature of dying such that both the family caregivers and the dying person think they are doing it wrong.”
Deborah Threadgill, a collaborative member who is also a certified funeral director, says the End of Life Care Collaborative focuses on making “everything family-directed,” meaning they never suggest or push services on clients. Rather, they try to educate them on their full range of options surrounding death and dying.
“We take something that is very, very traumatic in our society and taboo and make it something natural and beautiful,” she says.
Every Sunday Mindy Gillenwater volunteers for hospice care at the Robison Residence. Over the course of four years she as served as a companion to many patients like Kevin Sweat.
by Richard C. Gross
[W]hen I once conveyed concern to my father about his eventual death, his matter-of-fact response was, “We all die.”
And he did. At 89, of complications of pneumonia. Some say it was the best way to greet the hereafter: He went to sleep, into a coma, helped by doctor-administered doses of morphine. Yet when the ambulance initially came for him at the assisted living facility, his light brown eyes widened with fear.
I’m deathly afraid of dying. The idea of no more Richard weighs on me the older I get, and I’m getting up there. There’s so much more to do, so many more people to meet, so much to see, so much to live for, so much more to know. But there is no cure for aging.
I learned my fear of dying is not irrational; I have lots of company.
“Death is still a fearful, frightening happening, and the fear of death is a universal fear even if we think we have mastered it on many levels,” wrote Swiss-American psychiatrist Elisabeth Kübler-Ross in her seminal 1969 book, “On Death and Dying.”
Cultural anthropologist Ernest Becker, in his Pulitzer Prize-winning 1973 book, “The Denial of Death,” writes that “anxiety about death is a constant fact of life for everyone and that it is the underlying cause of the many other fears and phobias people experience.” Fears of being alone or stuck in a confined space, for example, are substitutes for fear of death.
Maybe singer Neil Diamond, now 76, expressed those very fears in the lyrics of his 1971 song about loneliness, “I Am … I Said:”
“But I got an emptiness deep inside/And I’ve tried/But it won’t let me go/And I’m not a man who likes to swear/But I never cared/For the sound of being alone.”
Alone or not, one’s mortality and the inevitability of death becomes more real the older we get, especially as relatives, friends and onetime coworkers — people with whom we’ve spent many years — die, shrinking our world, reminding us with a jolt that one day we will join them. Attending funerals becomes commonplace.
Seeking others for opinions about the fear of death, I attended a 90-minute seminar, called “Santa Fe Doorways,” hosted by Denys Cope, a registered nurse for nearly 50 years, including about 30 of them in hospice care. About 30 elderly people attended, all but three of them women; we sat in a wide circle in a windowless room in a retirement home.
Ms. Cope said, “We are all hard-wired to fear death,” and threw out a question: “When you think about death, what matters to you most?”
“To be able to die resting in God’s mercy,” replied one woman, acknowledging she is Christian.
Deep faith in one’s religion must be potently comforting, providing virtually certain assurance of peace as death approaches, perhaps, as another woman said, because of an abiding belief in an afterlife. Enviable. And for the secular among us?
One white-haired man, who experienced a near-death episode, approached the subject lightheartedly, maybe because he appeared so organized. He said he since has written his own obituary, letters to his loved ones and has paid for his cremation. This is a man who will meet his maker head-on.
Another woman took an amazingly positive approach toward death, reveling in its opposite: life.
“What I love about death is thinking how I’m going to live,” she responded to Ms. Cope’s question.
I’m not as sanguine and stubbornly turned back to Becker’s “Denial of Death” to reinforce my feelings about dying. For me, he hit a bull’s eye:
“This is the terror: to have emerged from nothing, to have a name, consciousness of self, deep inner feelings, and excruciating inner yearning for life and self-expression — and with all this yet to die. It seems like a hoax.”
Ms. Cope has another way of looking at death.
“When first faced with the fact they are dying, many people experience a tremendous amount of fear,” she wrote in her 2008 book, “Dying: A Natural Passage.” “Often, I am told, it is not death but the process of dying that is frightening. … As long as we remain attached to this world and to our life, it is a struggle to die. … When we surrender to the process of dying, there is an incredible inward flow of peace and grace.”
