Ask Me About Death and Dying

— On the Work of Palliative Care

Anna DeForest Wrestles With the Calculus of Whether a Life Is Worth Living

By Anna DeForestIt has never been obvious to me that life is worth living. Throughout my medical training, where we have ample exposure to the tools of psychiatry, the taxonomy, I have considered that this disposition may be an illness, a disorder of mood or personality, or a maladaptation secondary to the traumas of my upbringing. But try as I might I cannot seem to be otherwise.

For almost a decade now my life has been in medical training, which is schooling that is also labor, for five years paid but the first four I paid for, and part of what they train us to do at these elite institutions is to be leaders in whatever fields we go into. We are made to practice giving academic talks, and whenever it is my turn, almost without meaning to I start talking about Rene Descartes, about thinking in relationship to being, about how wrong he was and how fucked up the world got, or I’ll talk about neuroscience and free will and confabulation, and I wonder if people with psychiatric illness feel the way I feel when I give these talks, the comforting grip of an ultimately ineffable concern.

The title of the training I have just wrapped up is Hospice and Palliative Medicine. Hospice means a roadside inn for pilgrims and indigent travelers. Palliative means more concerned with the experience than the reason it happened to occur. It is very important to the people who advocate for the field of palliative medicine, for its funding, legitimacy and worldwide integration into medical practice, that we always stress at every public opportunity that palliative care is for the living. Of course we are all of us dying, but their concern is worth a note. Because doctors care poorly for patients who are on the way out, and they wait too long to talk with the dying about death.

On the spectrum of death, unless you are to die instantly, in your sleep, say, or as my father did recently, in a chair in front of the television, so suddenly you do not even have time to rise, to try to get to a phone, so shocking and abrupt it can hardly register for you, the participant, the decedent, as having any quality, a good death requires a little bit of time—to rest, to reflect, to say the four things they say it helps to say: I am sorry, I forgive you, and the other two I forget. Hospice, though etymologically a place, is in modern usage a philosophy of care you can receive in your home or a nursing home or a hospital or anywhere, a team of nurses, doctors, social workers, chaplains and others who help you navigate the process of becoming dead.

Once on hospice, you stop receiving treatments that slow down the dying process and your care is focused on medications, practices and routines that can make your experience at the end of life less unpleasant. Palliative care, distinct from hospice, is a broader concern for anyone in a body enduring illness, a team performing symptom-focused assessments on anyone whose health is at times at odds with their quality of life.

Doctors care poorly for patients who are on the way out, and they wait too long to talk with the dying about death.The first person I ever saw die, and the second, and the third, were people in late age, their seventies or eighties, who died of cardiac arrests in the hospital. It goes like this: A call goes out overhead and a team comes at a run through the halls of the hospital, to where whoever found the patient pulseless is already over them, performing chest compressions. The body is stripped, legs and arms each a separate place, a project, someone placing a new line or stabbing for an arterial blood gas. The air fills with a tension you could tell yourself is excitement, although in tenor it is more like watching someone being arrested, surrounded, attacked. Every action argues for itself, right on the line of brutality.

Even before I saw all this, I often feared my heart would stop, mostly when it was night and I could not sleep. I would listen to my heart beat and beat, willing another, on and on and on. One of the unit physicians, when he learned I was not even enrolled yet, still in my first line of work, adjuncting in an English department, begged me to stay where I was. This job, he said, it eats your whole life, it is terrible. I can only guess what he meant, that his hours were long and his life and work not clearly delineated, that whatever he had imagined that his life would be like here, he had been wrong. The patients with heart failure were unfixable, noncompliant, always coming back.

Years later, I had finished medical school and was resident, training as a specialist in disorders of the brain. The patient was well-appearing, able-bodied, mid-fifties, a construction worker presenting with a few weeks of dizziness. An MRI showed small bright lesions all over his brain, a shower of metastasis. The word innumerable is never one you want to hear from a doctor. A pan CT showed the likely source of the mets, a large chest mass concerning for lung cancer. He had no idea, no other symptoms, just a little lightness in the head.

What does this mean, he asked, and his doctor, the attending physician who was my boss, told him he would have to wait, to see a number of specialists: the interventional radiologist, who would biopsy the lung mass; the medical oncologist, who would match the tissue sample to a course of chemotherapy; the surgeon, who would tell him his tumors are inoperable; the radiation oncologist, who would blitz his brain and chest with radiation.

He waited for days in bed as we coordinated the other doctors. The teams came and went, each saying its piece, in long speeches of words that made sense one by one but kept not adding up to anything. I had been taught not to tell him much, and it was true, we wouldn’t know the whole picture until after the biopsy, until the tissue was sent for tumor markers, and the treatment course sketched out. What I wonder, he said to me one afternoon when I was at the bedside, is why no one will just tell me that this is really bad.

One reason he never quit smoking was he was afraid of gaining weight. He didn’t want to get diabetes, which is the disease that killed his father around his same age. On the bloodwork we sent before his scans came back we found out that he had diabetes anyway. When I told him this, he laughed, and we shared the cannoli his wife brought in from their favorite Italian bakery. It is bad, I told him. It is really bad. He died, he did, a few months later.

As soon as there are choices to make, it is reasonable to talk about goals and values, because the math you do is about what makes your life worth living, what your life is not yours without.There is a stance that appears most in medical-school application essays that the purpose of medicine is to relieve human suffering, but it is truer to say, in Western medicine, that the goal is the prolongation of life. Nothing wrong with that, on its face, in some cases, though it may be reasonable to wonder, since everyone dies, what is the cumulative effect on medical practitioners, our hearts and heads, that we miss our goal in every case; a failure rate of one hundred percent.

But for you, for now, you have high blood pressure, high cholesterol, so take this pill to bring it down so that it doesn’t give you a stroke or kill you. If the cost is low and the benefit is high, the choice is clear, but in chronic illness and in life-limiting illness we find a need to add a little background math: this treatment, say it is whole-brain radiation, will prolong your life, and the cost of that prolongation is, say, aging your brain by forty years. This treatment, a percutaneous endogastric tube, will prolong your life but you will never be able to eat food by mouth again. As soon as there are choices to make, it is reasonable to talk about goals and values, because the math you do is about what makes your life worth living, what your life is not yours without. And this is the work that palliative care is about.

What is it, exactly, that you want me to do? The woman who was asking had metastatic cancer in her abdomen. Yesterday we told her that she had no options  left for treatment. With her permission we shared a prognosis of weeks to a few months. Her face didn’t move as the news broke. She looked off to the left at the wall. And someone gave the speech on the philosophy of hospice, and she shared a hope to go home. It is the next day, with the logistics all already in process, that she asks.

What am I supposed to say now, what am I supposed to be thinking about? I can’t tell you how everyone I meet feels about the things we tell them, though young in this work I have seen a few trends. And something I see a lot is people who feel that their lives got away from them, they were always just watching, as from the station looking at faces flicking by on a moving train, and what is left to them now in the time they have left is only fear and suffering of unclear significance. What do I do with a thing like that? I hear it, and I help where I can.

What I am always saying in my Descartes speech is that we are not what we think, but we become what we are doing. I am worried about what this means for the doctors. Whenever I am lost, I try to stop moving, in case I am running off again in the wrong direction. It is never too soon to sit down and map out our values, to consider if we want to end up in the place where we are going. No, not yet, we aren’t there yet, says the oncologist. This is just a bump in the road.

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A History of Present Illness by Anna DeForest is available now via Little, Brown.

Complete Article HERE!

Cancer treatment took my mojo. Hospice gave it back

The author with her grandchildren, Lily and Ella, at Sofra in Cambridge, June 2022.

By

Eating is one of my greatest pleasures, and it was the first thing to go. Everything I put in my mouth tasted metallic. My taste buds were distorted. The nausea wouldn’t go away with any medication, not even marijuana. I was in starvation mode.

When the cancer had returned after 23 years to finish its job, I thought the targeted hormonal therapy wouldn’t be as drastic as the chemotherapy I had the first time.But it was worse. The daily pill I was prescribed to take indefinitely — or until such time when it no longer worked — subverted my bodily functions.

My blood counts plunged to critical levels. I had to have two pints of blood monthly to bring up the hemoglobin to carry more oxygen through my body. My liver enzymes rocketed, indicating toxicity. By January this past year, I was in bed all day, getting up only to use the bathroom.

I felt like I’d lost my mojo. My spark. My life.

In March, a nurse practitioner visited my infusion room at the oncology facility where I was receiving intravenous rehydration and asked if I would consider transitioning to hospice. I had no clear picture of what hospice was, except that it’s where you go when you are about to die. But I trusted my medical team’s judgment.

The author with her daughter, Elizabeth, in Portsmouth, N.H., and baby Lily who accompanied Elizabeth to care for Grace when she first entered hospice. (Courtesy Grace Segran)
The author with her daughter, Elizabeth, in Portsmouth, N.H., and baby Lily who accompanied Elizabeth to care for Grace when she first entered hospice.

I went into hospice. And to my surprise, that’s how I got my mojo back.

I was taken off all cancer drugs and cared for at home by the hospice medical team. They also supported my daughter, Elizabeth, and taught her how to care for me.

Elizabeth came by with newborn baby Lily, every day, and took care of my personal needs. Then we would go out for a lunch or at teatime, or take a drive to nearby towns. The short wobbly walks to the car while holding on to her arm soon became more steady, and I could walk further as my muscles became reconditioned. I began to pick at my food rather than reject it outright. A month later, I no longer needed the electric cart in Target, or for Ben, my son-in-law, to lift me into the car seat or out of the dining chair.

About six weeks after stopping the drugs, I woke up and I wanted an egg salad on sourdough bread and iced oat milk latte. For lunch, I wondered if we should do the dim sum carts at Joyful Garden. Or rasam and thosai at Dosa n Curry. We should definitely stop at Sofra on the way back for lemonade and tahini shortbread. The nausea and aversion for food was gone. I was delighted to be eating again and entered into it with abandon, especially in the company of family and good friends.

The Segran women -- from left, Elizabeth, Grace, Lily and Ella -- at a church park party, June 2022. (Courtesy Grace Segran)
The Segran women — from left, Elizabeth, Grace, Lily and Ella — at a church park party, June 2022.

With all the lunches I was booking with friends whom I’d not seen for months, I called Laura, my hairdresser, for an appointment. My hair had grown unruly now that the drug wasn’t curtailing its growth.

“You remember, right? Not too short and lots of texture,” I told Laura. When I got home, I dug deep in the closet for summer dresses and shoes. I had places to go!

I took baby steps towards traveling, another love of mine. Over a month, Elizabeth, Lily, and I took overnight trips to Newport, Rhode Island, Portsmouth, New Hampshire, and Portland, Maine, hoping to veer towards the airport after that and venture on to Chicago and New Orleans.

I started writing again. I’d scoured the internet but couldn’t find anything on first-person accounts about dying and hospice (always written by caregivers), so I wanted to write about that. And here I am.

My life is not perfect. I don’t walk nine miles a day as I did pre-cancer. I limp badly, and it’s a good day if I can make a quarter mile. I’m in bed for days after an overnight getaway. I don’t feel like seeing anyone some days. But I have the support of the beloved hospice team who comes to my home to help with my disabilities and take care of infections and pain, enabling me to live the life I want for as long as I can.

The window will close at some point, and I will go into decline as the cancer takes over. But I’m grateful for this interregnum. Hospice care has given me back my life, for now. I don’t know when the window will close — none of us do, really — but I’m cherishing every moment while it lasts.

Complete Article HERE!

Why L.G.B.T.Q. Adults Are More Vulnerable to Heart Disease

Experts say that a leading cause of death often goes overlooked.

By Dani Blum

As lots of U.S. residents have been celebrating Pride this month, many in the medical community have highlighted the devastating disparities in health outcomes for L.G.B.T.Q. adults — disproportionate cases of monkeypox in men who have sex with men, high reported rates of alcohol abuse, obstacles to accessing screening and treatments for cancer.

But according to some health experts, one of the most critical health inequities among L.G.B.T.Q. adults often goes overlooked.

A mounting body of research shows that L.G.B.T.Q. adults are more likely to have worse heart health than their heterosexual peers. Lesbian, gay and bisexual adults were 36 percent less likely than heterosexual adults to have ideal cardiovascular health, the American Heart Association concluded in 2018, based on surveys of risk factors like smoking and blood glucose levels. In 2021, the organization released a statement on the high rates of heart disease among transgender and gender diverse individuals, linking these elevated rates in part with the stress that comes from discrimination and transphobia.

The data supports what clinicians, and those who research L.G.B.T.Q. health, have observed for decades — that the community faces particular, pervasive obstacles that take a toll on the brain and body.

Cardiovascular disease is the leading cause of death in the United States. The Centers for Disease Control and Prevention estimates that 80 percent of premature heart disease and strokes are preventable. But there are disparities in where this burden falls among the general population. We spoke to doctors and health researchers about why these inequities persist, and what steps L.G.B.T.Q. adults can take to bolster their heart health.

The strain of stress

Experts said L.G.B.T.Q. adults face unique stressors — stigma, discrimination, the fear of violence — which can both indirectly and directly lead to disease.

Stress directly impacts certain hormones that regulate your blood pressure and heart rate, said Billy Caceres, an assistant professor at the School of Nursing and the Center for Sexual and Gender Minority Health Research at Columbia University.

Hypervigilance — the sense of always being on edge, constantly scanning for the next threat — causes cortisol levels to surge, which can lead to long-term cardiovascular issues, said Dr. Carl Streed, an assistant professor at Boston University School of Medicine.

Plus, stress can lead to chronic inflammation, said Dr. Erin Michos, associate director of preventive cardiology at Johns Hopkins University School of Medicine, and it can raise your blood pressure and heart rate.

Researchers sometimes refer to the allostatic load, the cumulative toll that chronic stress takes on the brain and body, said Scott Bertani, the director of advocacy at HealthHIV, a nonprofit focused on advancing prevention and care for people at risk for H.I.V. “It only stands to reason that our bodies respond to these really complex and challenging life events and demands,” he said. For instance, he added, the act of coming out, and in some cases, coming out repeatedly, often comes with severe stress.

To cope with the constant threat of discrimination or harassment, many in the L.G.B.T.Q. community self-medicate with drugs like tobacco and alcohol, said Dr. Streed, who is also a researcher at the Center for Transgender Medicine and Surgery at Boston Medical Center. These industries have targeted the L.G.B.T.Q. community through advertising, he said, especially during Pride month. The Centers for Disease Control and Prevention reports that around 25 percent of lesbian, gay or bisexual adults used a commercial tobacco product in 2020, compared with 18.8 percent of heterosexual adults, a disparity the agency partially attributes to the tobacco industry’s long history of aggressive marketing campaigns.

Research has also identified a link between sleep and heart health, Dr. Caceres said. Mounting evidence shows that L.G.B.T.Q. adults experience more sleep issues and interruptions than the general population, which may also be tied to chronic stress.

Obstacles to seeking care

A 2017 survey of nearly 500 L.G.B.T.Q. adults by researchers at Harvard T.H. Chan School of Public Health and the Robert Wood Johnson Foundation found that more than one in six reported avoiding health care because they worried about discrimination. That hesitancy means that L.G.B.T.Q. adults are less likely to access potentially lifesaving preventive health care, said Dr. Michos. All adults should be screened at least once a year for cardiovascular risk factors, which is typically part of an annual physical, she said.

Finding medical providers that you feel comfortable and safe around can be key in preventing heart disease, experts said. Dr. Streed recommends that L.G.B.T.Q. adults seek out supportive medical practitioners. The Gay and Lesbian Medical Association offers a directory on its website that allows patients to find health professionals. The Human Rights Campaign creates an annual Healthcare Equality Index — a list of health care facilities that say they are inclusive of L.G.B.T.Q. patients.

What L.G.B.T.Q. adults should know about improving heart health

While gender-affirming hormones have been shown to positively impact mental health, Dr. Michos said, there is some evidence that high amounts of testosterone and estrogen can have cardiovascular risks. People who are taking these hormones should consult their doctors about how to maintain their heart health.

The American Heart Association recommends seven steps for optimal heart health: managing blood pressure, keeping cholesterol levels low, reducing blood sugar, exercising daily, eating a nutritious diet, maintaining a healthy body weight and not smoking. Dr. Michos also recommended minimizing consumption of processed foods, sugar-sweetened beverages and highly refined carbs, instead opting for whole grains, lean proteins, and plenty of fruits and vegetables. Adults should also aim for at least 30 minutes of moderate-intensity exercise each day, like brisk walking, jogging or cycling.

These are critical facets of preventing heart disease, she added, “but we can’t just preach ‘You need to live a healthy lifestyle’ if individuals are under significant psychological distress and discrimination.”

Social support can help buffer against the physical and psychological strain of stress, she said, and seeking out community can be particularly crucial for L.G.B.T.Q. health outcomes. Several organizations can help L.G.B.T.Q. people connect with one another: SAGE, a nonprofit focused on aiding older adults, matches volunteers with L.G.B.T.Q. people over the age of 55 for weekly phone calls. The Trevor Project, which provides crisis intervention and suicide prevention services to L.G.B.T.Q. young people, also offers an online community for those between 13 and 24. The Bisexual Resource Center, a nonprofit focused on bisexual issues, maintains a list of online and in-person support groups for bisexual people.

“L.G.B.T. health isn’t just about H.I.V. prevention,” Dr. Caceres said. “A lot of the time, it ends up being focused on that. Sexual health is not the only dimension of health that we as queer people should be thinking of.”

Complete Article HERE!

What if hospice services weren’t just for the dying?

By Michael Ollove

Gloria Foster wasn’t ready for hospice, even though, with a prognosis of less than six months to live, she qualified for it. She was debilitated by diabetes and congestive heart failure, and was living with both a pacemaker and a device to help pump blood from her heart to the rest of her body. She also was tethered to an oxygen tank.

But Foster didn’t want to enter hospice, if, as is normally required by Medicare, she would have had to forgo treatments that might, against all odds, reverse the course of her disease.

“Why did I need hospice?” Foster, 73, asked in a phone interview recently from the home she shares with a grandson in Asbury Park, New Jersey. “Hospice is more or less when you’re ready to die. I just wanted to work my way back to doing as much as I could.”

But under a Medicare pilot program that began in 2016, Foster was able, for a time, to receive home care generally available only to hospice patients. Unlike hospice rules that normally govern Medicare, the public health plan for seniors, she wasn’t required to give up treatments for her terminal health conditions.

Still alive long beyond her prognosis, Foster credits the program, which ended for her in December 2019, with stopping her frequent hospitalizations, improving her mobility and greatly boosting her spirits.

“When it came to an end, I was very upset,” she said of the at-home services. “I cried, as a matter of fact.” She said she’s been hospitalized six times since then.

An independent evaluation of the five-year pilot — the Medicare Care Choices Model — recently provided its most robust data so far: The results found that participants were able to stay out of the hospital and live longer at home than a comparison group while also saving Medicare money.

The results were so encouraging that many who work in palliative and hospice care think the study’s conclusions will lead to some of the most important policy changes ever undertaken in the field — and not just for those in Medicare but also for patients with Medicaid, the state-federal health plan for low-income Americans, and for patients with private insurance as well.

Many who work in the field of hospice or palliative care hope the pilot project’s results will be the catalyst for bureaucratic changes that could deliver a raft of traditional hospice and palliative care services to millions more Americans struggling with debilitating chronic disease, whether imminently terminal or not.

The changes they would like to see include permanent removal of the requirement that patients give up curative treatments to access hospice-style benefits. Many also hope Medicare, Medicaid and private insurers will reexamine the requirement that home-based comprehensive palliative care services be provided only to those with a prognosis of six months or less to live. That denies many with serious chronic health conditions services they say would be beneficial and might also cost less, in part by keeping patients out of hospitals.

“This is a huge deal,” said Edo Banach, president of the National Hospital and Palliative Care Organization, which represents hospice and palliative care providers, and was among those who lobbied the U.S. Centers on Medicare and Medicaid Services, known as CMS, to undertake the pilot.

Hospice has evolved

When Congress created a Medicare hospice benefit in 1982, lawmakers and advocates mainly were focused on cancer. At that time, when treatments for cancer patients proved ineffective, the trajectory toward death often seemed clear. Hospice care was seen as an alternative to heroic but also, for patients, often agonizing measures to keep people alive at all costs.

Hospice switched the health care emphasis to symptom relief while enabling dying patients to use their remaining time in as fulfilling a way as possible by, for instance, spending time with family or simply sitting outside on a pleasant day.

But since 1982, cancer treatments have dramatically improved, extending lives, while higher percentages of Americans are dying of diseases other than cancer, particularly of illnesses related to dementia and respiratory illnesses such as chronic obstructive pulmonary disease, known as COPD.

And, as with many cancers today, the timetables of those diseases are less predictable.

“Six months for a patient with COPD isn’t realistic, because the trajectory of the disease isn’t the same as cancer,” said Susan Lloyd, CEO of Delaware Hospice, which participated in the pilot. “Even cancer is more chronic because of better treatments available. There needs to be a change in viewing the time frame to meet where patients actually are today.”

Many advocates and providers think other patients with serious but not necessarily terminal conditions also would benefit from a full array of palliative care services delivered in the home. The goals of both palliative and hospice care are to relieve symptoms and align medical care with the patient’s wishes and values. The main difference is the terminal prognosis in hospice.

CMS said it plans to issue a final report on the pilot early next year that will include data from the most recent report as well as qualitative results from interviews with participants, their families and providers.

Advocates hope that the latest data ultimately will result in changes that would enable many more Americans to receive full palliative care services at home, including those unwilling to give up on their disease treatments.

The pilot “opened up an avenue for so many more people to enter the program without having to admit, ‘My God, this is the end of my life,’” said Dr. Marianne Holler, chief medical officer at the VNA Health Group, which participated in the Medicare pilot and provides hospice services in Ohio and New Jersey. Foster was one of the group’s patients.

“Patients should not have to pick Column A or Column B at the end of their lives,” Holler said.

Holler and other providers said the pilot’s results demonstrate the cost-effectiveness of hospice care and argue for rules changes on eligibility and reimbursement.

Fewer hospitalizations

The pilot followed 4,574 participants from January 2016 through September 2020. They were entitled to services identical to — with some exceptions — those typically available with the Medicare hospice benefit. The project sought to answer whether participation would improve patients’ quality of life, increase election of the full hospice benefit and lower overall Medicare expenditures.

Among the findings:

— Compared with a control group not enrolled in the pilot, participants required less intensive medical interventions. For example, they had 26% fewer inpatient hospital admissions and 14% fewer outpatient emergency department visits and observation stays. They also spent 38% fewer days in an inpatient intensive care unit and 30% fewer days in other inpatient hospital units.

— A large majority of participants — 83% — made the transition to the traditional Medicare hospice benefit. Participants were nearly 30% more likely than nonparticipants to elect the Medicare hospice benefit before death.

— Participants were less likely to receive aggressive life-prolonging treatments in the last 30 days of life than their counterparts. They also were able to spend about six more days at home than those in the comparison group.

— As a result of all the findings above, Medicare expenditures for participants were 17% lower than for nonparticipants. The savings were even greater for those who lived less than six months after entering the pilot.

“When you give people more choice and greater freedom to make choices in their best interests, they make decisions that are better for them in terms of quality of care but better for the country in terms of costs,” Banach said. “The demo worked.”

The pilot waived a key requirement of Medicare’s hospice benefit: Patients weren’t forced to forgo treatments of their terminal conditions, such as chemotherapy, immunotherapy and radiation, intended to promote recovery or even a cure.

The pilot was open only to those with one of four diagnoses: cancer, chronic obstructive pulmonary disease, congestive heart failure or HIV/AIDS. To be eligible, people still needed to have received a prognosis of six months or less.

Once deemed eligible, patients could receive traditional hospice services in their homes, delivered by a multidisciplinary team of doctors, nurses, counselors, social workers and chaplains.

The services they received were similar to those provided under the Medicare hospice benefit: case management and care coordination, around-the-clock access to their hospice team, counseling services and symptom management.

The pilot did not cover some services that are part of the traditional Medicare hospice benefit, such as in-patient respite care, a care aide in the home and coverage for durable medical equipment, such as hospital beds.

Before she joined the pilot in 2017, Shirley Klionsky, 91, of Marlboro, New Jersey, recalled, “It was hard. Something was always going wrong, and I was always going to the hospital.”

That ended during the pilot, thanks to the hospice team’s weekly visits and monitoring of her advanced lung and heart disease. “It was the best thing I could have done,” she said.

Klionsky wouldn’t have entered the program if it had meant giving up the treatments for her disease. Hospice wasn’t for her.

“That would have meant dying,” she insisted, “and I said no to that.”

Complete Article HERE!

Supporting dignity at end of life

by

At the end of life, people may have to rely on others for help with showering, dressing and going to the toilet. This loss of privacy and independence can be confronting and difficult.

Now Australian occupational therapy (OT) researchers have interviewed 18 people receiving about how they feel about losing independence with , specifically their intimate hygiene, as function declines with .

The study aims to raise awareness of how to provide better care for people at the end of life.

Lead researcher Dr. Deidre Morgan, a Flinders University with 26 years of clinical experience, says the clear message is there are specific ways to provide assistance with intimate hygiene that may conserve or compromise a person’s dignity.

At its core, it comes down to effective two-way communication and providing opportunities for the person to influence how they receive care.

“Asking a person which parts of their intimate hygiene they want help with, which parts they want to do themselves, and how they want this help to be provided can boost a person’s and control over their care,” says Dr. Morgan.

The researchers, including OT experts from the Flinders University, Peter MacCallum Cancer Centre, Monash University and SA Government agencies, say the study is a vital reference for to raise awareness about their responsibilities to enable agency and even support partial independence.

“What we do and what we say can have a profound effect on a person’s dignity—especially if we are helping in intimate tasks like showering and going to the toilet,” says co-author Celia Marston, from the Peter MacCallum Cancer Centre in Melbourne.

“It is critical that we hear what a person wants the care to look like, or not look like.”

One participant, a 65-year-old professional woman with advanced cancer, told researchers that loss of agency and intimate hygiene dependency was so confronting that she couldn’t ask for the help she actually wanted.

This shows how important it is for carers to create opportunities for people to voice the help they want, researchers conclude.

The article, “Conserving dignity and facilitating adaptation to dependency with intimate for people with advanced disease: A qualitative study” has been published in Palliative Medicine.

Complete Article HERE!

‘We Have to Make a Concerted Effort to Be Less Alienated from Death and Dying’

A conversation with Anita Hannig, author of ‘The Day I Die: The Untold Story of Assisted Dying in America’

By Richard Harris

Like taxes, death is still a certainty. But in America, the end of life isn’t what it used to be.

Today, one in five Americans lives in a state that permits medical aid in dying, sometimes simply called assisted dying. The idea is terminally ill individuals who have six months or less to live can apply for a medically assisted death to limit their suffering. And if they meet the criteria, they can have some say when they will take their last breath.

It’s been nearly 25 years since the country’s first assisted death law — Oregon’s Death With Dignity Act — went into effect. And since then, eight other states — Washington, Vermont, California, Colorado, Hawaii, New Jersey, Maine and New Mexico, as well as Washington, D.C., have enacted their own versions. What all jurisdictions with medical aid in dying have in common is the requirement that the patients must be of sound mind, have less than six months to live and they must be able to self-administer the lethal medication, prescribed by a physician, to end their lives.

Eleven other states have introduced medical aid in dying bills during the 2021-22 legislative session. It’s a growing movement that’s largely under the radar, much as death is in this society.

Assisted death is “not the path of least resistance. For many it’s the path of most resistance.”

In the latest survey by Susquehanna Polling & Research, two out of three voters (67%) said if they “had an incurable, terminal illness, still had a sound mind but less than six months to live and met the legal requirements,” they would want the option of medical aid in dying.

As the baby boomers age, medical aid in dying is expected to be an even bigger issue in the years ahead.

Anita Hannig, associate professor of anthropology at Brandeis University in Waltham, Massachusetts, says assisted death is “not the path of least resistance. For many it’s the path of most resistance.”

Indeed, the assisted dying laws in the ten U.S. jurisdictions are among the most restrictive in countries with such laws. That hasn’t stopped opposition from some religious and right-to-life groups, among others.

For her new book, “The Day I Die: The Untold Story of Assisted Dying in America,” Hannig spent hundreds of hours over five years on the frontlines of assisted dying in the Pacific Northwest, including witnessing several deaths among those who availed themselves of the law.

Next Avenue: You’ve taken a very deep dive into assisted dying in America, a world few families have experienced. As a cultural anthropologist, you’ve gone from researching birth and the beginning of life in Ethiopia to the opposite end of the life cycle. Why the shift?

Anita Hannig: I was showing a film called ‘How to Die in Oregon’ in my Medicine and Religion class at Brandeis. It’s such a lovely documentary about the law in Oregon and about all those assisted dying volunteers who go and help people die. And I was immediately hooked and thought, wow, birth and death are like bookends. You have home births and home deaths. And so I was curious to go over to the other side. I was very surprised by what I found.

You must have a unique perspective on birth and death as an anthropologist studying assisted dying and as a new mother who also lost a child during an earlier pregnancy.

Definitely. We’re so used to thinking about birth and death as opposites when they’re actually very similar. One of the main figures in my book, a former nurse and longtime assisted dying volunteer in Oregon, Derianna Mooney, taught me that birth and death are both sacred transitions — from one state of being to another, from nonbeing into being and being into nonbeing. And culturally we revere one, but we shun the other.

“I think part of the issue is that we have all the technology now, but our ethical and moral compass hasn’t really caught up with how we should use it.”

As a new mother, I can see people’s eyes light up when they watch us stroll by with our oversized pram. There’s so much positive attention. And all of this has to do with the fact that we love the beginning. It holds so much promise.

And yet we’re so afraid of the end. Similar to a birth, people do need help at the end of life. I love when Derianna says, “You’re going to the gate with them and you are letting them go, but you’re nurturing them through the gate.” What a beautiful vision.

One of the vexing issues surrounding death in our country especially is the role high-tech medicine plays in extending life — even when a longer life doesn’t always promise more quality. Is the assisted dying movement a sign that technology is frequently not making our final years better?

Yes. I think part of the issue is that we have all the technology now, but our ethical and moral compass hasn’t really caught up with how we should use it. And it’s not just in the United States. My 87-year-old grandmother, who passed away in Germany in March, underwent radiation for her breast cancer when she was two weeks away from dying. I’m flabbergasted when I think about why we offer this extremely invasive treatment to somebody who is close to dying. Thankfully, she was soon admitted to a beautiful hospice by a lake to spend what became her final days.

I got interested in this topic when a friend’s husband, suffering from Parkinson’s and no longer able to feed himself, was forced to starve himself to death since he lived in Maryland, a state without a medical aid in dying law. For people consigned to such a horrific death, can a doctor truly say they are following the Hippocratic Oath that tells physicians to do no harm?

That’s exactly the conclusion that a lot of doctors who help patients die come to because in that case doing nothing — such as not helping somebody die — is doing harm. Physicians who are at the forefront of assisted dying say their task is to prevent suffering. And how you prevent suffering in many of these cases is to help somebody die. I always come back to this question: Who is telling these patients that they need to hang on? For what? For whom? Sometimes they themselves are ready to go, but they want to stick around for the family or because there’s a societal expectation to fight.

At the beginning of your book, you almost took my breath away when you were helping one of the volunteers opening the capsules of Seconal and pouring powder into a bowl in one room while the patient, Ken, was waiting in the next room to receive the lethal medication. What were your thoughts as you prepared the medicinal mix that you knew would end a man’s life?

It’s a really good question. Anthropologists have a tool in our toolbox called “participant observation.” And that means you’re never just an impartial observer because your presence alone already changes what’s happening in the room. In order to really relate and put ourselves and the reader into the shoes of these people, you have to bring yourself into the situation wholeheartedly and authentically. And often that means becoming a participant in what is happening.

It’s an extreme privilege to be invited into that kind of intimate space. So, it would have felt very off- putting to just be sitting in the corner taking notes. Everybody in the room is carrying this person over the threshold together. And so you just kind of take your cues from what’s happening.

You don’t want to feel like a voyeur?

Exactly. You want to be in the moment and going through all the emotions other people are going through. It’s a different way of being present that allows you to faithfully experience the death alongside the people whose loved one is dying.

But this must have been a difficult moment for you. In your book, you described “a heavy sense of transgression rise up inside” of you as prepared the lethal medication.

You know what I think it is? It’s the feeling of internalizing some of the stigma that we carry and some of the taboo with which we treat death. And so being part of somebody’s death in this participatory way makes you ask, ‘Am I doing something wrong? Am I, in some bizarre way, enabling that person to die?’

But even if I hadn’t been there, things would have gone probably in a very similar way. I think it’s the cultural baggage that we feel around what it means to hasten the end of your life. Everyone there knew this is what Ken wanted. He chose this with one-hundred percent of his cognitive abilities. His wish was to be delivered from this world and you are enabling that transition.

Among the deaths you researched but didn’t witness was that of Louis, who was an outlier. His experience turned into a nightmare for the person who supervised his assisted death. Louis actually woke up after taking the lethal medication. What happened?

“Everybody in the room is carrying this person over the threshold together.”

Medicine is a human art and as an art, is prone to failure. And it just goes back to the ways the laws are written. They insist on self-administration. But when you are limited that way, you’re going to run into a bunch of problems such as people with gastrointestinal issues who can’t quite absorb the medication. And then you have people who can’t physically self-administer, like a lot of folks with ALS or other illnesses that affect their mobility or their hand range or who can’t drink something on their own or push the syringe on their feeding tube.

And people are getting a little more innovative with things like rectal catheters now, but there’s still a requirement that this has to be an act of volition — you have to be the one to push the plunger on your feeding tube or catheter, what have you. And in almost all other countries, you don’t have that requirement. A doctor can administer if you’re unable to administer yourself.

So after immersing yourself in this world of assisted dying for five years, whats your takeaway from this experience?

As a society, we have to make a concerted effort to become less alienated from death and dying. Of course, one could ask how alienated are we when the biggest newspaper in the country, the New York Times, can post images of corpses in Ukraine on its front page? But that doesn’t create closeness or connection. That just creates more fear.

Ideally, I think everybody should have to take a class on death and dying that could cover estates, hospice, and what life-extending procedures there are. In my death and dying class, I talk about people in South Korea who fill an entire gymnasium with coffins and the public comes in and gets inside the coffin to simulate what it would be to die. And they come out of this experience with a totally new zest for life.

This is what contemplating our mortality can do for us. It can take away some of the fear and some of the surprise when a loved one passes away because you will have thought about it in advance. I’m not saying assisted death is the way to go for everyone. We really need to pay more attention to end-of-life issues and prepare for the inevitable and have all of that be less stigmatized.

Book over of "The Day I Die" by Anita Hannig. Next Avenue, medical aid in dying

As the country’s pandemic death toll inches toward one million, has America’s attitude toward death changed at all?

Certainly it’s brought death into the lives of lots of people but not in a way to make them feel more connected to death. Many people weren’t able to see their loved ones in assisted living homes or couldn’t go to the funeral or they weren’t allowed to be present at a nursing home.

When I see the way that we’re tumbling back into life as it was before the pandemic, I don’t know that we’ve really thought critically about death. We just have this big fear-based relationship with death and it’s not lifting the curtain, really. I think people are thrilled to have escaped the pandemic. They see themselves on the other end of that mostly unscathed.

They dodged a bullet?

That’s exactly what it is. But I don’t think it’s made us really contemplate our mortality that much more.  

So what will give you a signal that something has shifted in the American attitude toward death?

That people don’t automatically associate the topic of death with fear. And when people begin to realize what I witnessed and write about in the book — some of the empowerment that can come from determining the end of your life and even some of the joy. I hope I’m not out of line to call it joy. When I think of the deaths I witnessed, they weren’t unambiguously sad. There were also serene and heartfelt moments, some laughter and families felt at ease because their loved one wanted to die and they were helping them.

And those who chose to end their lives wanted their death to resonate beyond themselves and their families. Jean, one of the people whose death I witnessed, unbelievably spent the last few minutes of her life promoting her chosen way to die. I still remember her words:

“There are all these baby boomers who will want a better way to die. Our society doesn’t recognize that yet. They will someday.”

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