— A meditation on dignity and comfort in the last days of a parent’s life
By Abeer Hoque
In 2020, in the midst of a worldwide pandemic, my 85-year-old father suffered a heart attack in Pittsburgh and was rushed to the hospital.
The stent, a minorly invasive procedure, was the easy part.
But the two days he spent in UMPC’s state-of-the-art ICU were a nightmare. The anesthesia made him groggy and aggressive. The sleep meds made him perversely restless and short of breath. The IV he constantly fiddled with, once even ripping it out, much to our horror.
Instead of restraining him, which I imagine to be a cruel and unusual punishment for an Alzheimer’s patient, the ICU staff let me stay with him overnight (a massive kindness made greater by the strict Covid protocols of that time). This way, I could keep him from wandering, from pulling out the IV, from being confused about where and why and what. Every two minutes—I timed it, and it was comically on the clock—I explained and comforted and explained again. By midnight, I thought I would go mad with worry and exhaustion. By 3 a.m., I was seeing stars, my father and I afloat in an endless hallucinatory universe of the now. By 6 a.m., we were both catatonic.
After he came home, my father was in a bad state. Physically he was fine, if a bit unsteady, but emotionally, he was depressed, anxious, raging, unresponsive. His appetite was out of control and he raided the fridge at all hours. He barely slept, wandering the house like a ghost of himself. It took almost three months for him to return to his ‘normal’—another immense gift from the universe, as medical crises often spell inexorable decline for the elderly.
A year later, the doctors discovered a giant (painless) aneurysm in his stomach, which could rupture and kill him “at any moment”.
Operating would mean a five-inch incision, at least five days in the ICU and up to a year to recover fully (if at all). For someone with dementia, major surgery also seemed a cruel and unusual punishment. From New York to Philadelphia to Pittsburgh, my siblings, my mother and I met over video chat to discuss at length. We made the difficult decision to let the aneurysm be, to keep my father comfortable and at home.
Initially, my mother felt tortured. Were we giving up on my father? Was she abdicating her responsibility?
These are questions that modern medicine is not always fully equipped to answer.
Doctors (especially surgeons) are often focused on finding and fixing the physical problem. But Alzheimer’s is a uniquely mental condition and it forced us to consider my father’s health and well-being on more than just the physical front. We wanted to prioritise his dignity, his comfort, his pain-free state: namely, his overall quality of life.
Days later, the doctors told us that the aneurysm was actually inoperable because of its position in his body. Moreover, there were two rogue blood clots that, if disturbed, could travel to the brain and kill him instantly. Our decision had been the right one, not just mentally but also medically.
Our family made another big decision at this time: we would not take my father to the hospital anymore—instead we would start palliative care.
I have been recommending Atul Gawande’s brilliant book Being Mortal to everyone since I read it five years ago. It lays out the case for palliative medicine (a.k.a. hospice care) in compelling detail. Instead of trying to prolong life, palliative care prioritises a patient’s physical and mental well-being and focuses on pain management. Not only does this kind of care drastically reduce the chances of family members developing major depressive disorder, but the patient outcomes are astonishing:
Those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25% longer. If end-of-life discussions were an experimental drug, the FDA would approve it.
Atul Gawande, in his book ‘Being Mortal’
In February 2023, my parents moved to Dhaka after 54 years abroad (in Libya, Nigeria and the States), abandoning the isolating, exorbitant, often neglectful care networks of America for the familial support and affordable at-home caregiving of Bangladesh. We were privileged to have this option, to have extended family so loving and helpful, to have enough money to pay rent and hire multiple caregivers.
For my mother, who had been my father’s full-time caregiver for over a decade, it was a new lease on life, letting her visit childhood friends, walk in Ramna Park every morning, get a full night’s sleep. We were additionally lucky that over 10 months, we did not have to see a doctor because my father’s occasional tummy upsets and falls did not result in serious illness or injury.
In December 2023, my mother left for the US for five weeks to visit my sister and her three children and to hold her newest month-old grandchild (my brother’s first child) in her arms. It would be the first time in more than a decade that she would leave my father for more than a few days, and she agreed to this vacation only because I had taken an extended break from my life in New York to be in Dhaka while she was away.
Three days after she landed in Pennsylvania, my father suffered his first medical crisis in over a year: a distended belly and extreme stomach pain.
I immediately called my cousins who live down the street. Two of them brought over their mother’s doctor, a young generalist who worked in the ICU of the hospital around the corner from us in Bonosri. Seeing my father’s taut and grossly swollen stomach, the doctor advised urgent hospitalisation. Thus started a gruelling, repetitive, exhausting conversation about palliative care, all while my father cried out in pain from the bedroom.
Despite several palliative and hospice centres in Dhaka, the concept seems unknown to many Bangladeshis, perhaps even heartless.
Neither of my cousins could sleep that night after hearing my father’s cries. I explained why we had decided against hospitalisation, against X-rays, ultrasounds and blood tests, against antibiotics and IV-administered fluids. I predicted that the hospital would likely have to restrain or sedate him or both. I said that even if we eased his physical state, mentally he would be traumatised.
This resistance to palliative care is not uniquely Bangladeshi. Families across the world are torn apart because family members have different ideas on how to best take care of a loved one. Too often, no one has asked the patient their preferences about resuscitation, intubation, mechanical ventilation, antibiotics and intravenous feeding. Too often, it’s too late to ask by the time these medical interventions come into play.
The doctor finally offered pain and gastric medicine via intravenous injections. One bruised wrist later, my father was more comfortable. Over the next 24 hours, he had two more injections, but by the third one, the pain meds were no longer working.
At 2 a.m. on a cool Dhaka winter night, we levelled up, the doctor generously taking time off his night shift to come to our house with a nurse and administer an opioid that eased the pain for another day and half.
By Christmas, or Boro Din as they call it in Bangladesh, I had defended palliative care more than half a dozen times to my relatives, each one aghast at how my father could suffer so, without my helping, i.e., hospitalising him.
This then was my struggle: to remember I was not there to fix anything, but to ensure that he remain in familiar surroundings, in his sunny airy bedroom. That he not be in pain.
This too was my struggle: to get my extended family on board with palliative care.
The cousin who came to live with us in America when he was in high school and who idolised my parents. The cousin who asked me to bring my father’s nice shirts and blazers from Pittsburgh so he could wear them. Their sweet wives, my bhabis, and their lively loving children who visited my father almost every day. To hold back my kneejerk reactions:
Are they questioning my family’s judgement? Is this the patriarchy at work? Do they understand that it is no easier for me to see my father in pain?
My challenge was to set my defensiveness aside and try to infuse their love and concern with knowledge and perspective, so they could help me help my father spend his remaining days in comparative ease, rather than more aggressive medical treatment.
My last struggle was the hardest of all: The one that questioned the kind of life my father had been living these last few years.
Nine years after his Alzheimer’s diagnosis, he could not do a single thing that used to bring him pleasure: dressing nicely each morning, making himself breakfast while exclaiming over the newspaper headlines, reading history books and novels, writing fiction in Bangla, teaching geology in English, wandering the Ekushay February book fair, visiting his ancestral home in Barahipur, playing cards and watching action films, making his grandchildren collapse into giggles, walking on the deck at sunset with Amma, holding court with the Bangladeshi community in Pittsburgh, speaking to his two beloved remaining siblings, my Mujib-chacha and Hasina-fupu, delighting my mother with his quick-witted jokes.
If he could make no new memories and the only joys he had were fleeting—the chocolate chip cookies from Shumi’s Hotcakes, my mother’s smiling face, his caregivers’ tender ministrations—were these enough?
Was there some Zen-level lesson here on living in the moment?
And when these brief moments were interleaved with longer troubling periods of confusion, distress, rage and sadness… What then?
What about the endless hours spent restless and awake, his eyes lost and searching?
My father and I had had a fraught relationship my whole life.
Patriarchal and emotionally distant, he threw me out on several occasions, literally and figuratively. I didn’t speak to him for years at a time, and even reconciled, our exchanges were limited to politics, education and writing. He seemed uninterested in anyone’s emotional life, unable to engage in conflict without judgement and anger. His gifts of intellectual brilliance, iron-clad willpower and moon-shot ambitions did not make him an easy father—or easy husband, for that matter.
But now, none of that mattered. The only thing that did was my attempt to attend to him with kindness.
Linking his dementia-fueled rage to his life-long habitual rage would make the already difficult task of caregiving impossible. I had read enough studies that showed that caregivers died earlier because of their stress. It wasn’t hard to see the toll it had taken on my mother over the years. She had been hospitalised for rapid heartbeat issues twice last year and, despite a lifetime of healthy living, had developed high blood pressure to boot.
In his sleep-deprived, pain-addled state, my father didn’t always respond or recognise those around him. But one night, in a moment of lucidity, he reached for my hand and asked urgently, “Are you doing ok?”
“Yes Abbu,” I assured him, “I’m doing fine.”
And then he said—faint, incomplete, clear—“Take… your Amma.”
I said, “Of course I will.”
He was telling me what I’d always known, that despite everything, he had always looked out for my health and self-sufficiency, and more importantly, that looking after my mother was our shared act of service.
If this winter of struggle and sorrow gave my mother more time in the world, then I was ready for it. Would that the path were palliative for us all.
Complete Article ↪HERE↩!
Death by Doctor May Soon Be Available for the Mentally Ill in Canada
— The country is divided over a law that would allow patients suffering from mental health illnesses to apply for assisted death.
By Vjosa Isai
Canada already has one of the most liberal assisted death laws in the world, offering the practice to terminally and chronically ill Canadians.
But under a law scheduled to take effect in March assisted dying would also become accessible to people whose only medical condition is mental illness, making Canada one of about half a dozen countries to permit the procedure for that category of people.
That move has divided Canadians, some of whom view it as a sign that the country’s public health care system is not offering adequate psychiatric care, which is notoriously underfunded and in high demand.
The government of Prime Minister Justin Trudeau, which has been criticized for its rollout of the policy, has defended its actions by pointing to a 2019 court decision in Quebec that officials say mandates the expansion.
Members of the Conservative Party have accused the government of promoting a “culture of death.” There has also been opposition from politicians on the left who would like the government to focus its health policy on expanding mental health care.
Jason French is among those building a case for why a doctor should help him die.
With copies of a document describing his troubled mental health history tucked in his backpack, he attended an event in Toronto to lobby for making assisted dying available to people like him.
He has severe depression and has tried twice to end his own life, he said.
“My goal from the start was to get better,” said Mr. French, of Toronto, who agreed to share his name, but not his age because so many in his life don’t know about his illness. “Unfortunately, I’m resistant to all these treatments and the bottom line is, I can’t keep suffering. I can’t keep living my life like this.”
But Dr. John Maher, a psychiatrist in Barrie, Ontario, who specializes in treating complex cases that often take years to improve said he was concerned that hopeless patients will opt for assisted death instead.
“I’m trying to keep my patients alive,” he said. “What does it mean for the role of the physician, as healer, as bringer of hope, to be offering death? And what does it mean in practice?”
Canada’s existing assisted death law applies only to people who are terminally ill or living with physical disabilities or chronic, incurable conditions. The country’s Supreme Court decriminalized assisted death in 2015 and ruled that forcing Canadians to cope with intolerable suffering infringes on fundamental rights to liberty and security.
About 13,200 Canadians had an assisted death last year, a 31 percent increase over 2021 according to a report by the federal health ministry. Of those, 463 people, or 3.5 percent, were not terminally ill, but had other medical conditions. Patients who are approved have the option to end their lives using lethal drugs administered by a physician or nurse, or by taking drugs prescribed to them.
There is still uncertainty and debate over whether assisted death will become available to the mentally ill early next year as scheduled. Amid concerns over how to implement it, Parliament has delayed putting it into place for the past three years and could delay it again.
Clinical guidelines were released to address those concerns last March, but some people involved in providing mental health care say they are insufficient.
But supporters say denying mentally ill people access to the same humane option to end their suffering amounts to discrimination.
“I have a very deep empathy for patients who suffer deeply,” said Dr. Alexandra McPherson, a psychiatry professor at the University of Alberta and assisted death provider. She said she treats a small number of patients “with severe disabling mental health disorders who suffer equally to the patients that I see in cancer care.”
Lisa Marr, a former paramedic diagnosed with post-traumatic stress disorder who lives in Nova Scotia, said she was desperate to take advantage of the new law. She has bipolar disorder, depression and excoriation disorder, or skin picking, from anxiety and has made, she estimates, 15 attempts on her life but “always managed to pull myself out.”
Canada amended its criminal code to legalize assisted death for the terminally ill in 2016, and in 2021, responding to the court ruling in Quebec, the country loosened the law to add other severely ill people experiencing “grievous and irremediable” conditions.
Eligible patients must wait 90 days before receiving an assisted death and be approved based on the assessments of two independent physicians. One of the assessors must be a specialist in the patient’s illness or have consulted with a specialist.
A panel of experts and a special parliamentary committee have worked to address concerns from the public and medical community, by laying out practice standards and advising clinicians and regulators.
The government has also funded the development of a training program for physicians and nurses who assess patients for assisted death.
“The work has been done,” Dr. Mona Gupta, the chair of a government-appointed expert panel — who is a psychiatrist and bioethics researcher at the University of Montreal — told a special parliamentary committee in November. “We are ready.”
Anyone in Canada seeking assisted death must be deemed by the physicians or nurse practitioners who assess them as not impulsive and not suicidal, and those who are mentally ill would need to be evaluated to show that their condition is “irremediable.”
But even some psychiatrists worry that they may not always be able to determine if someone seeking an assisted death could actually get better or not.
“The research that we have shows psychiatrists are no better at identifying who’s not going to get better,” said Dr. Maher, the psychiatrist in Ontario. “The challenge for us is it’s not a short term process. When people have been sick for years, healing takes years.”
The Centre for Addiction and Mental Health, Canada’s largest teaching hospital for psychiatric care and research, has said that clinicians need more guidance to assist them in assessing who is acutely suicidal or capable of making a rational choice to end their lives.
“We’ve been clear that we have concerns about expansion at this time,” said Dr. Sanjeev Sockalingam, chief medical officer at the center, which has convened several professional groups to assist physicians in preparing for March.
Ms. Marr, the paramedic, said the wait for the law to take effect has been grueling. She takes eight psychiatric drugs every day. “All the medications I take just barely keep me together,” said Ms. Marr, who is on disability leave and spends most days in her room, leaving home only for therapy.
Her father had an assisted death after being diagnosed with prostate cancer, and her mother died shortly after, all while she was juggling her job as a paramedic.
“Then, my mental health started to rear its ugly head,” she said.
The uncertainty over whether the mentally ill would be allowed assisted death motivated Mr. French to leave his home after work, something his depression rarely allows him, to attend a screening of a documentary financed by Dying With Dignity, a charity promoting assisted death.
He went with several copies of a five-page document he created explaining his case, hoping to give it to medical experts at the screening.
Death doesn’t scare him.
“My biggest fear is surviving,” he said.
He said he’s not suicidal. But, he added, “I don’t want to have to die terrified and alone, and have someone find me somewhere. I want to do it with a doctor. I want to die within a few minutes, peacefully.”
Both Canada and the United States have a three-digit suicide and crisis hotline: 988. If you are having thoughts of suicide, call or text 988 and visit 988.ca (Canada) or 988lifeline.org (United States) for a list of additional resources. This service offers bilingual crisis support in each country, 24 hours a day, seven days a week.
Complete Article ↪HERE↩!
Why You Should Consider a Death Doula
— End-of-life doulas are compassionate and knowledgeable guides who can walk with you through death and grief.
We’re all going to die, and before that, we will probably navigate the deaths of several people we love along the way.
Too dark? Discomfort with the idea of death may be the reason that people rarely talk about it, plan for it, or teach each other how to cope with it.
“Many people in our society are death phobic and do not want to talk about it,” said Marady Duran, a social worker, doula, and educator with the International End-of-Life Doula Association. “Being an end-of-life doula has been so much more than just my bedside experiences. I am able to talk with friends, family, and strangers about death and what scares them or what plans they have. Being a doula is also about educating our communities that there are many options for how end-of-life decisions can be made.”
When you or a loved one inevitably faces death, there can be an overwhelming feeling of What do I do now? What do I do with these feelings… and all this paperwork? End-of-life doulas (also called death doulas or death coaches) are compassionate and knowledgeable guides who can walk with you through death and grief.
The experience of supporting a childhood friend through her death at the age of 27 motivated Ashley Johnson, president of the National End-of-life Doula Alliance, to commit herself to this role.
“Walking alongside her during her journey, I recognized the tremendous need for education, service, and companionship for individuals and their families facing end-of-life challenges,” Johnson said. “The passing of my dear friend only solidified my commitment to this path. I saw it as my calling to extend the same level of care and support to others who were navigating the complexities of end-of-life experiences. I firmly believe that every individual deserves the dignity of a well-supported end-of-life journey, and that starts with demystifying the process, reducing fear, and helping families achieve the proper closure they need to heal.”
What to expect from a death doula
The services provided by an end-of-life doula are actually pretty varied and flexible. Much like birth doulas, they do not provide any medical care. These are some of the services Johnson said she provides in her work:
- Advance health care planning. This might include a living will, setting up durable power of attorney for health care, and advance directive decisions. “We help individuals and their families navigate the complex process of advance healthcare planning, ensuring their wishes and choices are respected and documented,” Johnson said.
- Practical training for family caregivers. End-of-life doulas can teach caretakers and family members how to physically care for their loved ones as they near death.
- Companionship to patients. “We provide emotional support and companionship to patients, helping to ease their feelings of isolation and anxiety,” Johnson said.
- Relief for family caregivers. Caring for a dying family member can be relentless, but caregivers need time to step away and care for themselves too.
- Creating a plan for support at the patient’s time of death. A person nearing the end of their life may be comforted by many things in their environment, from the lighting, music, aromatherapy, and who’s present. A doula can help coordinate all the details.
- Grief support. “Our role extends into the grieving process, offering support to both the dying person’s loved ones and the patient during the end-of-life journey and beyond,” Johnson said.
- Vigil presence for actively dying patients. “We ensure that no one faces the end of life alone by being a comforting and compassionate presence during the active dying process,”Johnson said.
- Help with planning funeral and memorial services. Planning services is a complicated task to tackle while you are likely exhausted with grief. Doulas have been through this process many times and can be a steady hand while you make decisions.
“Our aim as death doulas is to enhance the quality of life and death for all involved,” Johnson said. “We provide a range of non-medical support, fostering an environment where individuals and their loved ones can find comfort, guidance, and a sense of peace during this profound and delicate phase of life.”
When is it time to bring in a doula?
Death doulas can provide comfort and support to both the dying person and their loved ones at any stage of the process. They can step in to help before, during, or after a death.
- At any time, before you even receive a terminal diagnosis, doulas can help you prepare emotionally and practically with planning for end-of-life wishes, advance care planning, and creating a supportive environment.
- During the end-of-life phase, doulas are more present to offer emotional, spiritual and practical support. They may be available weekly or daily, as needed.
- After death, doula services continue for the family of the deceased.
“There really is no timeline for grief,” Duran said. “Some will want to meet one or two times after the death, and some do not want to do grief work at all. It is a personal journey, and some people may take years to do the work.”
Support for an unexpected death
Not all deaths come with an advanced warning or time to prepare and plan. Even in the case of an unexpected death, an end-of-life doula can help you handle practical details and process grief. They can:
- Provide emotional support
- Help you understand the grief process
- Teach you coping strategies
- Help with arrangements, legal, and financial matters
- Help you create meaningful memorial rituals to honor the deceased
- Provide connection and community
- Listen and validate your feelings
- Provide long-term support
“My mentor Ocean Phillips, who is also a doula, always reminds me that ‘grief is another form of love,’” Duran said. “Grief gets a bad rap, and many people do not want to feel grief, but it can be transformative for many who experience it. People who go through an unexpected death of a loved one may feel guilt—‘If only I…I could have…’ The doula can hold space for them and allow them to share that. We can never fix or change, but we can stand with them and provide loving kindness along the way.”
Other professionals to help you navigate a death
Death doulas work in conjunction with many other professionals, including healthcare workers and hospice staff, to help families go through the process of death and all that follows.
“The whole team has a piece in being able to connect with those navigating grief and death. I always recognize that I am just one small part of the larger community that will help support those facing death and loss,” Duran said.
These are a few other professionals you might want to reach out to when facing the death of a loved one:
- Grief counselor
- Social worker
- Chaplain
- Community leaders
- Estate planning lawyer
- Probate lawyer
- Funeral service professional
- Financial planner
- Tax accountant (to help you file on behalf of the deceased and the estate)
- Estate liquidator or clean out-service.
Complete Article ↪HERE↩!
Message From A Death Doula
— Everyone Needs A Death Plan (Not Just A Will)
By Hannah Frye
Death is a taboo subject in American culture. So much so that, by the time someone close to you passes, you may not have any idea how they want their affairs handled.
But according to death doula Alua Arthur, getting an “end-of-life plan” in place can make death easier to think and talk about at any age. And this plan goes far deeper than the financial and logistical items covered in a will.
Here’s how Arthur recommends making your end-of-life plan and the benefits it can bring for a well-lived life.
What is an end-of-life plan?
Arthur thinks everybody should have an-end-of-life plan. While the exact contents will be unique to each person, here are some items she recommends including:
- Your end-of-life care: When you’re nearing the end, what kind of environment do you want to be in? Where would you like to be? What type of food do you want to eat? How do you want to feel? This will help your loved ones make the best decisions for you if you’re physically unable to.
- Your body & funeral service: What do you want done with your remains? Do you want a funeral? What does it look like? Any places you’d prefer not to have it? If you don’t know your options, consider looking into it. There are so many innovative and beautiful ways to handle remains you probably haven’t heard of yet.
- Your possessions & financial affairs: This tends to be covered in a will, but can be included in your end-of-life plan as well.
- Your pets & non-relative dependents: Are there any living beings you take care of that you want to pass on information about but may not be included in your will? If so, add a plan for them in this document. Consider pets here if you have any.
Now, it’s important to remember that these end-of-life plans are meant to change and evolve with you.
If you learn about a new burial service that interests you, add it to the document. If you went to a funeral and saw something you wouldn’t want for yourself, put it in your document. This way, when you do eventually pass, your loved ones will know it’s up-to-date with your honest wishes.
Why are end-of-life plans important?
For those who prefer to shy away from discussions about death, don’t worry—you’re not alone. But here are a few reasons that making an end-of-life plan and talking more openly about death can actually help us live healthier lives:
1. Too often, we see death as “a failure”
Shoshana Ungerleider, M.D. has a unique perspective on death as an internal medicine physician and the founder of End Well–a nonprofit on a mission to change how the world thinks about the end of life.
Ungerleider says some of the strong distaste toward the topic stems from how Western medicine views death in a hospital setting. “It’s partly because we as doctors see death very, very often as a failure. And we try to do everything we can to avoid failure in medicine,” she explains.
But in the end, she notes, “Death keeps us awake to our lives.” By pushing thoughts of death away, we can actually increase the power they have over us. Making an end-of-life plan is a way to accept death for what it is and take away some of the stigma that surrounds it.
2. Speaking about it can help with death-related anxiety
On an individual level, death can be scary and anxiety-inducing to think about. The unfortunate truth is that we don’t control how we pass or when. But, what you can control (at least a little bit) is how your death is handled, hence the freeing effect of the end-of-life plan.
Knowing this part of the equation is sorted can actually bring an element of known to the unknown, potentially easing death-related anxiety.
3. A plan can help support your loved ones when the time comes
Having these big questions answered ahead of your death is a service to your loved ones who will care for you in your final days. By taking some of the work off your loved ones’s plate through pre-planning, you’ll help them grieve your passing with just a bit less stress related to logistics. Think of it as paying it forward to those who will care for you during this time.
Though it may not be accessible for everyone, working with a death doula could also prove helpful for you and your loved ones (and you can even request that in your end-of-life plan).
4. Acknowledging death can make you more present
Your considerations around death don’t need to stop once you wrap up your end-of-year plan. Instead, Arthur strongly recommends that everyone start talking about death more often. This doesn’t need to involve serious sit-down conversations. In fact, sometimes easing into it with casual topics can take away the initial shock and overwhelm.
Having more casual conversations around death can improve your quality of life and presence. Ungerleider notes that her colleague Lucy Kalanithi, M.D., often says that living and dying aren’t separate things. We’re doing both at the same time. This perspective can make death a bit less scary and unfamiliar since it reminds us that while we are living every day, we are dying every day, too.
Death keeps us awake to our lives
Making an end-of-life plan probably won’t make you completely fearless when it comes to death. But there’s a chance that it can ease your anxiety around it a bit, as well as provide support to your loved ones.
5. Don’t be afraid to ask for help
If you feel strong anxiety or fear when you think or speak about death, consider reaching out to a therapist for help. They can guide you through difficult emotions that come up and process any potential trauma that could be impacting your fear of death.
The takeaway
Death doula Alua Arthur recommends making an end-of-life plan that includes preferences related to remains, funeral services, how you’ll be cared for in your final days, and other important considerations that may not be covered in a will. If you find the topic of death uncomfortable to talk about, you’re not alone. However, getting familiar with your wishes and desires may benefit your mental health and presence, and help those around you in the long run.
Complete Article ↪HERE↩!
‘Financial Ruin Is Baked Into the System’
— Readers on the Costs of Long-Term Care
Thousands of people shared their experiences and related to the financial drain on families portrayed in the Dying Broke series.
By Jordan Rau and Reed Abelson
Thousands of readers reacted to the articles in the Dying Broke series about the financial burden of long-term care in the United States. They offered their assessments for the government and market failures that have drained the lifetime savings of so many American families. And some offered possible solutions.
In more than 4,200 comments, readers of all ages shared their struggles in caring for spouses, older parents and grandparents. They expressed their own anxieties about getting older and needing help to stay at home or in institutions like nursing homes or assisted-living facilities.
Many suggested changes to U.S. policy, like expanding the government’s payments for care and allowing more immigrants to stay in the country to help meet the demand for workers. Some even said they would rather end their lives than become a financial burden to their children.
Many readers blamed the predominantly for-profit nature of American medicine and the long-term care industry for depleting the financial resources of older people, leaving the federal-state Medicaid programs to take care of them once they were destitute.
“It is incorrect to say the money isn’t there to pay for elder care,” Jim Castrone, 72, a retired financial controller from Placitas, N.M., commented. “It’s there, in the form of profits that accrue to the owners of these facilities.”
“It is a system of wealth transference from the middle class and the poor to the owners of for-profit medical care, including hospitals and the long-term care facilities outlined in this article, underwritten by the government,” he added.
But other readers pointed to insurance policies that, despite limitations, had helped them pay for services. And some relayed their concerns that Americans were not saving enough and were unprepared to take care of themselves as they aged.
“It was a long, lonely job, a sad job, an uphill climb.”
Marsha Moyer
What other nations provide
Other countries’ treatment of their older citizens was repeatedly mentioned. Readers contrasted the care they observed older people receiving in foreign countries with the treatment in the United States, which spends less on long-term care as a portion of its gross domestic product than do most wealthy nations.
Marsha Moyer, 75, a retired teaching assistant from Memphis, said she spent 12 years as a caregiver for her parents in San Diego County and another six for her husband. While they had advantages many don’t, Ms. Moyer said, “it was a long, lonely job, a sad job, an uphill climb.”
In contrast, her sister-in-law’s mother lived to 103 in a “fully funded, lovely elder care home” in Denmark during her last five years. “My sister-in-law didn’t have to choose between her own life, her career and helping her healthy but very old mother,” Ms. Moyer said. “She could have both. I had to choose.”
Birgit Rosenberg, 58, a software developer from Southampton, Pa., said her mother had end-stage dementia and had been in a nursing home in Germany for more than two years. “The cost for her absolutely excellent care in a cheerful, clean facility is her pittance of Social Security, about $180 a month,” she said. “A friend recently had to put her mother into a nursing home here in the U.S. Twice, when visiting, she has found her mother on the floor in her room, where she had been for who knows how long.”
Brad and Carol Burns moved from Fort Worth, Texas, in 2019 to Chapala, Jalisco, in Mexico, dumping their $650 a month long-term care policy because care is so much more affordable south of the border. Mr. Burns, 63, a retired pharmaceutical researcher, said his mother lived just a few miles away in a memory care facility that costs $2,050 a month, which she can afford with her Social Security payments and an annuity. She is receiving “amazing” care, he said.
“As a reminder, most people in Mexico cannot afford the care we find affordable and that makes me sad,” he said. “But their care for us is amazing, all health care, here, actually. At her home, my mom, they address her as Mom or Barbarita, little Barbara.”
Insurance policies debated
Many, many readers said they could relate to problems with long-term care insurance policies, and their soaring costs. Some who hold such policies said they provided comfort for a possible worst-case scenario while others castigated insurers for making it difficult to access benefits.
“They really make you work for the money, and you’d better have someone available who can call them and work on the endless and ever-changing paperwork,” said Janet Blanding, 62, a technical writer from Fancy Gap, Va.
Derek Sippel, 47, a registered nurse from Naples, Fla., cited the $11,000 monthly cost of his mother’s nursing home care for dementia as the reason he bought a policy. He said he pays about $195 a month with a lifetime benefit of $350,000. “I may never need to use the benefit(s), but it makes me feel better knowing that I have it if I need it,” he wrote. He said he could not make that kind of money by investing on his own.
“It’s the risk you take with any kind of insurance,” he said. “I don’t want to be a burden on anyone.”
Pleas for more immigrant workers
One solution that readers proposed was to increase the number of immigrants allowed into the country to help address the chronic shortage of long-term care workers. Larry Cretan, 73, a retired bank executive from Woodside, Calif., said that over time, his parents had six caretakers who were immigrants. “There is no magic bullet,” he said, “but one obvious step — hello people — we need more immigrants! Who do you think does most of this work?”
Victoria Raab, 67, a retired copy editor from New York, said that many older Americans must use paid help because their grown children live far away. Her parents and some of their peers rely on immigrants from the Philippines and Eritrea, she said, “working loosely within the margins of labor regulations.”
“These exemplary populations should be able to fill caretaker roles transparently in exchange for citizenship because they are an obvious and invaluable asset to a difficult profession that lacks American workers of their skill and positive cultural attitudes toward the elderly,” Ms. Raab said.
“For too many, the answer is, ‘How can we hide assets and make the government pay?’”
Mark Dennen
Federal fixes sought
Others called for the federal government to create a comprehensive national long-term care system, as some other countries have. In the United States, federal and state programs that finance long-term care are mainly available only to the very poor. For middle-class families, sustained subsidies for home care, for example, are fairly nonexistent.
“I am a geriatric nurse practitioner in New York and have seen this story time and time again,” Sarah Romanelli, 31, said. “My patients are shocked when we review the options and its costs. Medicaid can’t be the only option to pay for long-term care. Congress needs to act to establish a better system for middle-class Americans to finance long-term care,” she said.
John Reeder, 76, a retired federal economist from Arlington, Va., called for a federal single-payer system “from birth to senior care in which we all pay and profit-making removed.”
Mark Dennen, 69, from West Harwich, Mass., said people should save more rather than expect taxpayers to bail them out. “For too many, the answer is, ‘How can we hide assets and make the government pay?’ That is just another way of saying, ‘How can I make somebody else pay my bills?’” he said, adding: “We don’t need the latest phone/car/clothes, but we will need long-term care. Choices.”
<h2″>Questioning life-prolonging procedures
A number of readers condemned the country’s medical culture for pushing expensive surgeries and other procedures that do little to improve the quality of people’s few remaining years.
Dr. Thomas Thuene, 60, a consultant in Roslindale, Mass., described how a friend’s mother who had heart failure was repeatedly sent from the elder care facility where she lived to the hospital and back, via ambulance. “There was no arguing with the care facility,” he said. “However, the moment all her money was gone, the facility gently nudged my friend to think of end-of-life care for his mother. It seems the financial ruin is baked into the system.”
Joan Chambers, 69, an architectural draftsperson from Southold, N.Y., said that during a hospitalization on a cardiac unit she observed many fellow patients “bedridden with empty eyes,” awaiting implants of stents and pacemakers.
“I don’t want to be a burden on anyone.”
Derek Sippel
“I realized then and there that we are not patients, we are commodities,” she said. “Most of us will die from heart failure. It will take courage for a family member to refuse a ‘simple’ procedure that will keep a loved one’s heart beating for a few more years but we have to stop this cruelty.
“We have to remember that even though we are grateful to our health care professionals, they are not our friends, they are our employees and we can say no.”
One physician, Dr. James D. Sullivan, 64, from Cataumet, Mass., said he planned to refuse hospitalization and other extraordinary measures if he suffered from dementia. “We spend billions of dollars, and a lot of heartache, treating demented people for pneumonia, urinary tract infections, cancers, things that are going to kill them sooner or later, for no meaningful benefit,” Dr. Sullivan said. “I would not want my son to spend his good years, and money, helping to maintain me alive if I don’t even know what’s going on,” he said.
Thoughts on assisted dying
Others went further, declaring they would rather arrange for their own deaths rather than suffer in greatly diminished capacity. “My long-term care plan is simple,” said Karen D. Clodfelter, 65, a library assistant from St. Louis. “When the money runs out I will take myself out of the picture.” Ms. Clodfelter said she helped care for her mother until her death at 101. “I’ve seen extreme old age,” she said, “and I’m not interested in going there.”
Some suggested that assisted dying should be a more widely available option in a country that takes such poor care of its elderly. Meridee Wendell, 76, from Sunnyvale, Calif., said: “If we can’t manage to provide assisted living to our fellow Americans, could we at least offer assisted dying? At least some of us would see it as a desirable solution.”
Complete Article ↪HERE↩!
End-of-life doulas are changing conversation around death in Central Oregon
By Genevieve Reaume
We’re all going to die. While we don’t know when or how, the sun will set on each of our lives.
American culture struggles with this, in turn making the inevitable insufferable. This is where end-of-life doulas are breaking new ground.
Cheryl Adcox has been working as an end-of-life doula in Central Oregon since 2018. That’s when the registered nurse opened Hand-in-Hand End of Life Doula Services. For her, death is “sacred and it’s magical and it’s part of the mystery of life.”
It’s a view that few people understand. It’s one these death doulas understand intimately.
“Part of this is about normalizing conversations around death, dying, loss, grief,” Elizabeth Johnson, the Executive Director of the non-profit Peaceful Presence, said.
Johnson opened Peaceful Presence, which offers end-of-life doula care, in 2019. It was founded just before COVID-19 shut down the world, but thrived as the world began to see death more regularly through the pandemic.
What are end-0f-life doulas?
End-of-life doulas are caregivers who help people find peace with the circle of life. Most often, they work with people who are dying, along with their families. But they also help healthy people come to terms with life’s inevitable end.
Erin Walker is one of those people who was deeply impacted by death during the pandemic. Before this, she hadn’t had any real life-changing relationship with death.
“I hadn’t had anybody close to me die,” Walker explained.
When her husband, Hans, became gravely ill in 2021, shortly after the two welcomed their first daughter, Harper, she had to handle death head-on.
“He didn’t care about what people thought, in the best way,” Walker said, describing her husband.
Hans was diagnosed with stage-four liver cancer in the middle of a pandemic. An already challenging time was made nearly unbearable.
The two decided an end-of-life doula could help them navigate this foreign path. The decided to work with Peaceful Presence.
“An end-of-life doula is a non-medical companion to someone,” Johnson explained. “We do a lot of legacy work, life review work.
Doulas treat the family, not just the patient
For Johnson, the goal of a doula is to help families like Walker’s deal with death and all the logistics that come with dying. They treat the whole family unit, not just the patient, in a way that compliments medical care received in the hospital and hospice.
Walker said Hans was afraid of being alone as he got closer to death. Walker had to balance both being a wife and mom. Sometimes she couldn’t do it all, having to leave her husband in the hospital or hospice to take care of their daughter.
With Peaceful Presence, Hans didn’t have to be alone during these moments. As Walker explained, the doulas were “there to just be there, to just be that person in the room for when and if Hans woke up, to be present with him.”
Walker also got essential support.
“They’re there to hold your hand. They’re there to hug you when you’re crying. They’re there to get you tea,” Walker explained. “It was having people to call — not the friend, not the sister, not the people with baggage or their own relationships with Hans.”
In September of last year, Hans died. Memories of him sit on shelves and side tables throughout their Sisters home. His urn is below a pair of paintings the couple did together. His death still isn’t easy to talk about, but through the experience, she found a greater understanding of life.
“It can be a traumatic experience to have someone die, or it can be something that you can talk about and that you can share with others and that you can connect with them on,” Walker said.
That connection is catching on in Central Oregon.
“We actually have a lot of hospice and palliative care professionals who come and say, ‘I was in medical school. I learned a lot, but I didn’t learn, you know, some of these ways of just being with somebody during this end-of-life window,’” Johnson explained.
Johnson said when she joined the National End-of-Life Doula Alliance board pre-pandemic, they had about 250 members. She says that’s grown to more than 1,500. International End-of-Life Doula Association says it had a 36% increase in learners between 2021 and 2022.
Adcox has found, since starting Hand-in-Hand back in 2018, that people are more willing to have these death conversations.
“People are much more receptive to it now than when I first started,” Adcox explained.
Death Cafés come to Central Oregon
In 2018, in addition to starting the doula service, she began hosting Death Cafés. The practice, which originated in Europe, offers free, public meet-ups just to dish about death.
“We have people in their late seventies, early eighties. We have people in their early twenties,” Adcox said of the cafes. “It’s so beautiful that we can all sit in a circle and share this one commonality that we all have as human beings.”
The meet-ups happen about once a month, except during the summer when they are paused. They’re also now sponsored by Deschutes Public Library. Plus, with their popularity, Adcox has expanded the cafes beyond Bend to Redmond. The next Death Café is on January 30. Adcox says this work is a part of a growing “death-positive movement.”
It’s a mission Peaceful Presence is also on. One way they help people of all ages and health do this is through their guidebook End Notes.
“What are all the life logistical things I might wanna have in place if I were to die tomorrow? What do people need to know about my life, right?” Johnson said, explaining End Notes. “Are there letters that you want to write? Are there things you want to communicate? Are there places where you need to ask forgiveness?”
Johnson also notes that the work is expanding across Oregon. Thanks to funding from three different foundations, Peaceful Presence is going to rural Oregon communities, not necessarily to establish more end-of-life doulas there but to embed the doula training into existing professions, helping people better handle death.
By May, Johnson says they’ll have trained 60 people in rural Oregon communities.
The death doulas, cafes and guidebooks — all changing the conversation around death in Central Oregon. Helping people, like Walker, change their perspective on dying.
“Do you feel like having worked with a doula that your perspective on death has changed?” I asked Walker.
“Yeah. I have a lot less fear, which I didn’t even know I was holding before,” Walker responded.
Complete Article ↪HERE↩!
A Hospice Nurse on Caregiving, Fear of the Unknown, and Having a ‘Death-Positive Household’
— Author Hadley Vlahos watches people die for a living. Here’s what she’s learned.
Hadley Vlahos is a 31-year-old hospice nurse, mother of three, and, as of this past summer, a New York Times bestselling author: Her debut book, The In-Between: Unforgettable Encounters During Life’s Final Moments, recounts her journey to end-of-life caregiving, delves into some of the more mystical things she’s witnessed as her patients die, and explores the impactful relationships she’s made along the way. The In-Between—SELF’s November Well-Read Book Club selection—is a deeply moving reflection on many of the fears that plague all of us, bringing inevitable life experiences like illness, pain, and death gently to the surface.
I recently chatted with Vlahos about her job, caregiving, grief, talking to her kids about dying, and how to support the people you love when words simply don’t feel like enough.
SELF: What advice would you give to a first-time caregiver for someone who is living with a terminal illness or dying?
Hadley Vlahos: Don’t be afraid to ask for help and take it day by day. For many people, caregiving is a marathon, not a sprint. I come in during the last six months of someone’s life—by that point, it’s not uncommon for patients’ caregivers to have already been in that role for many years. It’s not sustainable to care for someone else for that long without a break. If your neighbor offers to sit with your loved one so you can go get groceries by yourself or take a nap, take them up on it! There is no shame in asking for or accepting help.
Do you have any tips for caregivers on how they can take care of their own mental health?
Recognize that anticipatory grief—grieving a person who is still physically alive but no longer themselves due to their illness—is completely normal, but it does make the task of caregiving more difficult. If it’s feasible, I would absolutely recommend getting a therapist or licensed mental health counselor. Caregiving can be isolating and overwhelming. Having someone to help you through those emotions can make a world of a difference.
Is there a part of death and dying that you used to be afraid of but no longer scares you?
I used to be very scared of the unknown. What happens when we die? Does nothing happen? Is it going to hurt? Now that I’ve been with so many patients as they’ve died, I no longer fear it. I witness patients process their inevitable death and come to peace with it. I watch patients see their deceased loved ones before they die and feel very comforted by their presence. For me, I now know that no matter what happens at the end, I have the option to be comfortable and calm. Knowing what a good death looks like and that I should be able to have it makes the thought of death not scary for me.
What’s a common misconception about death that more people should be aware of?
I think that most people feel like their death is out of their hands and out of their control. Many patients feel like they get a terminal diagnosis and are told what to do and when to do it: Get this surgery, get labs drawn, take this medication, etc. They feel like they have no other choice.
The reality is that patients are allowed to say “okay, enough,” and elect to go home on hospice care. Patients are allowed to prioritize what’s important to them at the end of life. For some people that is treatment, but I often hear that patients were not aware that they could choose hospice sooner than they did.
What do you think more people should know about hospice care?
It isn’t as depressing as it seems. I know, death seems depressing, but the reality is that it is unavoidable. I think that most people think of death as an if instead of a when. Death is going to happen to all of us. Hospice care is attempting to make it better by putting the patient’s comfort as the priority. I think that’s beautiful.
I’m curious to hear your take on what planning and logistical discussions about death we should have with loved ones, but also what we should be asking them about life in general. Have you noticed any patterns after guiding so many families through the process?
Absolutely! Practical questions should include “What does a good death look like to you?” This is different for everyone. Some people absolutely want to be at home, while others would rather be anywhere else. Some people want all of their loved ones there while others want privacy. At some point, you should find out your loved one’s funeral wishes as well—are religious traditions important to them? What do they want for a final resting place: burial or cremation?
I always ask my patients what their goal is while on hospice, and their answers vary greatly. Sometimes it’s as simple as slightly reduced pain, and others want to be able to get out of the house one last time and check something off their bucket list.
When it comes to asking personal questions, I tend to go with the flow, as every patient is different. If a patient is naturally reviewing their life and telling me stories, I will ask them if they have any regrets. The answers people have are fascinating. I not only like to listen to their stories, but I like to think about why that instance in particular stands out to them. I had a patient recently who told me multiple times about missing his daughter’s dance recital when she was younger because he had to work. I imagine that he probably missed many family functions due to his job, but for some reason that one really stood out to him. One day, I asked him why he thought that was. He said that he missed the recital because he had picked up an overtime shift after buying a car that was priced above his means. “That car is probably just rusty parts in a junkyard now,” he said, which really stood out to me.
What can we all do to support the caregivers in our lives, especially for those who are coping with a terminally ill loved one?
If you live near someone, offer specific help. Oftentimes, I see people saying, “Let me know what I can do for you.” While this is well-intentioned, many caregivers feel burdened by it. They don’t know what that includes. Are you willing to come stay with their loved one for an afternoon? Or are you just offering a phone call? Instead, offer specific help. Try: “I’m dropping off dinner this week. Does Tuesday work for you?” Or “I’d love to stay with [their loved one’s name] for a few hours so you can do anything you need to. Does Sunday afternoon work?”
If you’re further away, my go-to is sending a Doordash (or another delivery service) gift card with a heartfelt text. I do this both for my friends who are caregivers and my friends who are grieving.
How did your experience as a young, single mom shape your career as a caregiver?
It taught me a lot of empathy. It taught me that we’re all just doing the best we can and that the best someone can do is going to look different for everyone. I learned that casting judgment on someone, as so many people did to me, isn’t going to change their circumstances. It’s just going to make someone feel bad about their circumstances. If we have the choice to make someone feel worse or better about themselves, why wouldn’t we choose the latter?
You’ve spoken on TikTok about raising your three kids in a “death-positive household.” What does that mean and look like?
For me, it’s about not avoiding the topic. I was raised in a death-positive household as well—my grandparents are funeral directors, and I think that normalizing the topic of death is very important. If someone dies I say that they died. If my kids have questions I answer them honestly in an age-appropriate way. I don’t ever change the subject to avoid feeling uncomfortable.
How early did you start having those conversations with your kids?
As soon as they could talk and understand. A simple way to incorporate this is with bugs and flowers. When your child notices that a bug or a flower has died, you can say that it died. I don’t make a big deal about it, but I do use those words—dead, died, and dying—in my day-to-day language. If I’m talking about my day and a patient died, I will tell my children that they died. My 10-year-old sometimes has questions and I answer them honestly. I recently explained to him what the process of a death visit is like for me, including calling time of death, talking to the family, and assisting the funeral home. He listened intently, then went back to eating his dinner.
Complete Article ↪HERE↩!