Category: Healing and Helping Professionals

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Understanding Hospice

— The emotional difficulties of hospice care have made it underutilized and, to some, taboo — medical professionals are trying to change that

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Carla Thompson has worked in hospice care for more than two decades, and she knows first-hand just how difficult it can be to make end-of-life decisions.

“You can’t always see the future,” says Thompson, a registered nurse and administrative director for Bon Secours Home Health & Hospice. “When you’re given a diagnosis, you have all these treatment options in front of you. You have to make decisions to keep trying to cure the disease or choose to live with it, focusing on comfort and spending time with family.”

Thompson’s daughter Jessica died last year in hospice services at the age of 31. She fought fiercely for years, but when her breast cancer came back despite aggressive treatment, the family knew it was time to enlist hospice care.

“Jess wasn’t laying in the bed waiting to die,” Thompson says. “She was able to stay home for three months, get the support she needed, and spend time with her four children. She was given medications to help her be comfortable and functional for as long as she possibly could. She was at peace.”

Her hospice team managed her pain and symptoms, brought in a hospital bed and other equipment and provided frequent medical care, services that Thompson says are a blessing for patients as well as their caregivers.

Bon Secours is one of about two dozen hospice providers in Central Virginia. On any given day, hundreds of Richmond-area nurses, chaplains, social workers, home health aides, volunteers and physicians are paying home visits to terminally ill patients, providing them with critical and compassionate support.

Destigmatizing Hospice

While the concept of hospice care dates to medieval times, the first hospice practice in the United States was founded just 50 years ago by a nurse, two doctors and a chaplain who believed patients should pass in their own comfortable environment. Since then, it’s expanded to many providers in all states with two major directions: palliative care and hospice care. In most cases, patients in palliative care are still seeking active treatment, while patients in hospice have a terminal diagnosis and have forgone or exhausted treatment options.

Zach Holt, CEO of Crater Community Hospice in Petersburg, says after 15 years in the business he’s still surprised how many people have misconceptions about hospice. His company is part of a statewide coalition of hospice services working to raise awareness of its benefits. According to a recent report by American Health Rankings, Virginia is 30th in the nation for hospice use, with less than half of Virginians who are eligible for hospice choosing services.

“There’s a big stigma,” Holt says. “People think it’s designed for your last days of life when, in reality, it’s designed for your last six months of life. Studies have shown people across all disease states typically live longer on hospice than they do not on hospice. Our specialized teams are equipped to give patients a higher level of comfort.”

Trish Evans, a registered nurse and director of VCU Health Hospice, admits that hospice is a scary word and fear is a contributing factor for low utilization. “People don’t want to think about death and dying,” she says. “But it’s not about giving up, it’s about your quality of life. It’s a choice on how you want to spend your time with a terminal diagnosis if those are the cards that have been dealt to you.”

Holt encourages Virginians who qualify for hospice to sign up earlier, before they are actively dying, to receive the full benefit. According to the National Hospice and Palliative Care Organization, the median stay for patients in hospice care is 18 days, while Medicare approves stays that are 10 times longer.

Another misconception that leads people to avoid hospice is the possible high cost; in most cases, it’s financially reasonable. According to Debt.org, more than 90 percent of hospice care is covered by Medicare, and patients may be covered through private insurance and charity care.

On the personal end, Evans points out that some believe hospice patients are permanently bedridden at home. “Life can go on,” she says. “There are hair appointments and vacations and family events. We want to give patients the support they need and the comfort they need to continue to do those things before the end stage of their disease.”

Pediatric Hospice Care

When the unimaginable happens and a child is given a life-limiting diagnosis, Noah’s Children provides palliative and hospice services at no cost to families. While run by Bon Secours Richmond, Noah’s Children partners with all health systems in Central Virginia to help families navigate the most harrowing times.

In addition to nurses, physicians, social workers and chaplains, Noah’s Children employs a music therapist, an art therapist and bereavement counselors who visit the patient’s home. They also offer programming for parents and siblings. Nurses are available to attend doctor’s visits, helping parents manage complex treatment plans from multiple sub-specialists.

“We want to debunk the myth that we’re focused on death,” says Dr. Kelly Lastrapes, Noah’s Children medical director. “We’re focused on the best life children can live for as long as they can.”

Planning Ahead

Holt recommends that everyone of all ages have an advanced directive, a legal document that indicates an individual’s health care wishes. “As a society, we don’t like to talk about death, but you have to get uncomfortable and have those conversations,” he says. “I see close-knit families get ripped apart when they haven’t discussed end-of-life care. One sister thinks one way, one sister thinks another, but Mom never told them what she wanted.”

Holt advises families to discuss financials and set realistic expectations. “You hear parents all the time joke about not putting them in a nursing home, so discuss the alternatives,” he says.

As a society, we don’t like to talk about death, but you have to get uncomfortable and have those conversations.
—Zach Holt, CEO of Crater Community Hospice

Some states with high hospice use, like Oregon and Maine, have also passed legislation allowing patients with terminal diseases to self-administer life-ending medication. The Death with Dignity National Center reports that legislation not only eases suffering but brings important conversations about death and dying out of the shadows and into the spotlight. The Virginia Senate passed a “Death with Dignity” bill in February, but members of the House of Delegates chose to table the bill until 2025.

Richmond-area hospice experts recommend that any time a family member has been diagnosed with a terminal illness, they should work with their medical team to prepare a treatment plan as well as an end-of-life plan.

Lastrapes adds that it’s helpful to keep a 10,000-foot view of the patient’s care, understand the trajectory of the prognosis, and set goals early on. While life is filled with unknowns, surrounding yourself with the right people can help ease the pain.

“When you’re born, you have a room full of people to support that baby,” Evans says. “It should be very similar when your life is over. It’s the one thing we’re all going to experience. You should have the ability to surround yourself with your family and your pets and those people who can support you and keep you comfortable.”

Choosing a Hospice Provider

  • Start your hospice conversation with your health care team and ask about preferred partners.
  • Medicare patients can enter their ZIP code at medicare.gov to find certified providers in the Richmond area.
  • Talk to friends, family and neighbors about their experiences with hospice.
  • Once you narrow down several hospice providers, interview them about specific services, additional resources, areas of specialty, organizational culture, religious affiliation and other differentiating factors that are important to you or your family.

Complete Article ↪HERE↩!

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Understanding Palliative Care

— And when it may help

By Dr. Rachel L. Ombres AHN

Caring for people with serious illnesses or chronic conditions is one of health care’s most complicated — and important — challenges.

While medicine continues to improve the way we treat diseases such as cancer or heart failure, it doesn’t always do a great job of caring for the things that matter most to patients and their families, such as physical and emotional distress.

And despite their frequent visits to doctors and hospitals, people living with serious medical conditions may still have unaddressed symptoms like pain or fatigue, and often report poor communication about those symptoms with their health care providers.

In other words, medicine is pretty great at treating the disease — but not as good at caring for the whole person.

That’s where palliative care specialists enter the picture, helping people live and feel better throughout the course of a serious illness.

Palliative care is a growing field of medicine that focuses on helping patients and their families cope with the physical and emotional stressors of advancing health problems. There is strong evidence that palliative care not only can improve quality of life for seriously ill patients, but also may reduce avoidable hospital admissions and enable patients to spend more time at home doing what matters most to them.

What is palliative care?

Palliative care focuses on providing people with relief from the symptoms and stressors of serious illnesses, such as cancer, chronic heart or lung disease, dementia, neurologic diseases like Parkinson’s, chronic liver disease, kidney failure, and many others.

Delivered by a specialty-trained team of doctors, nurses, social workers and other clinicians, palliative care provides expertise in symptom management, care coordination and communication, with the goal of improving quality of life for both the patient and their loved ones. Palliative care is appropriate for people at any age, and any stage of a serious illness.

Importantly, palliative care is not the same thing as hospice.

While palliative care is led by clinicians specifically trained in that field, it’s provided in collaboration with other health care providers, including primary care doctors and specialists — and, unlike hospice care, it can be administered at the same time that the patient is receiving curative treatment, and at any stage of serious illness from the time of initial diagnosis.

A person with cancer undergoing chemotherapy, for example, might benefit from palliative care, as would a person with lung disease seeking a lung transplant. In fact, when people facing a serious illness receive palliative care early in their disease and alongside treatment for their underlying condition, evidence demonstrates that it may even prolong survival.

Unfortunately, the historical misunderstanding about palliative care’s association with hospice — and the general lack of awareness about palliative medicine as a specialty, even among providers — means that millions of people who could benefit from palliative care don’t get it.

Worldwide, only about 14% of people who need palliative care currently receive it, according to the World Health Organization.

Where can I receive palliative care?

Palliative care is provided in all settings. To best meet the needs of their patients, palliative care teams see people in the hospital, outpatient clinics, nursing facilities — and even in the comfort of their own homes.

Providing home and community-based palliative care is not only convenient for patients and their families, but it also aims to reduce certain complications of advanced illness that would otherwise require emergency room visits and hospitalizations.

The benefits — patients who feel better, have fewer unnecessary hospitalizations and have more support during stressful times — are attractive to patients, families and insurers alike. As a result, insurance providers such as Medicare are changing the way they reimburse for home-based palliative services, while health systems and other agencies are actively expanding access to palliative care across Pennsylvania and nationwide.

Today, there are more options than ever for home- and community-based palliative care.

How palliative care can help: One patient’s story

Barbara had just retired from a career in management at a local grocery store. She looked forward to the added time retirement would give her to do what mattered most, like spend time with her family and tend to her garden.

Unfortunately, a new cancer diagnosis thwarted these plans, and she was soon spending more time in the chemotherapy suite than with her grandchildren or her prized perennials. Barbara’s pain and fatigue prevented her from being active outside and limited her appetite.

When her primary care provider referred her to palliative care, Barbara was unsure what to expect.

The palliative physician suggested several interventions to help Barbara feel and function better, including medication changes and gentle exercise techniques, and provided additional resources for her family. The palliative care team also helped Barbara understand her care options and encouraged her to speak up about her preferences to her other health care providers and to her loved ones, so that everyone was on the same page about supporting her goals.

In time, these interventions helped lessen Barbara’s symptoms and streamline her care. Throughout her cancer journey, the palliative care team has remained a constant layer of support for Barbara and her family. With close attention to her goals and symptoms, the palliative care team helps Barbara live as well as possible, despite having a serious illness.

If you or a loved one has a serious medical condition, ask your doctor or insurance provider about a referral to palliative care.

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Patients limited from accessing Voluntary Assisted Dying at some hospitals and palliative care units

Miki says she and her mother felt they had to choose between getting the best possible care or the best possible death.

By Annika Blau

It’s July 2021, and Miki is begging for help.

Her mum is trying to ask her doctor something, but in recent weeks, she’s lost the ability to speak.

Miki’s mum has motor neurone disease (MND) and her only means of communicating is with a letter board, where she blinks to spell out what she’s trying to say.

She needs staff from her hospital to operate the equipment, but they’re refusing to be involved.

“It really sent a … message that what we were doing was wrong,” Miki says.

Eventually, Miki’s begging reaches the hospital CEO, who grants special permission for an occupational therapist to set up the letter board.

“There were rules that [the occupational therapist] could set my mum up with the equipment, but they were not to be present in the room for any conversations,” Miki says.

And then, letter by letter, Miki’s mum blinks to spell out her request: She wants to die.

Voluntary assisted dying (VAD) has been legal in Victoria since 2019, meaning people like Miki’s mum who are suffering from a degenerative condition can choose to take certain medication to end their life.

But healthcare providers can refuse to facilitate VAD if they object to it on ethical grounds.

This is the situation Miki and her mother found themselves in.

“I was really shocked to learn that a publicly funded hospital could have policies that existed on ideological or religious grounds,” Miki says.

“Someone like my mum, who can’t talk, can’t move, can’t advocate for themselves… is facing just about as many barriers as a person can face. So every little hurdle that’s added to that is just an enormous stress to overcome.”

‘Forbidden to raise the topic’

At her home in the west of Melbourne, Miki stops in the hallway and gazes into a bedroom.

It’s stacked floor to ceiling with boxes — her mum’s entire life — but Miki can’t bear to face it just yet.

Her mum was a dance teacher and later a librarian, but when she started having falls in 2019, she was diagnosed with MND.

A photograph of a woman with dark hair sits beside an open jewellery box containing a pearl necklace.
Miki’s mother was a dance teacher and later worked as a librarian. 

Miki’s mum was living in South Australia at the time, but they were told one of the best places to get care for MND was in Melbourne, at Calvary Bethlehem Hospital.

“We also knew she’d be able to access VAD in Victoria, which she couldn’t in South Australia, so we moved her over,” Miki says.

What they didn’t realise was that Calvary Bethlehem is one of 21 public Catholic hospitals around Australia with a blanket policy against VAD.

Miki noticed right from the first appointment “an undercurrent of nervousness in everyone we spoke to at Calvary Bethlehem — if you mentioned VAD, it was like hitting a brick wall.”

But they didn’t know where else to turn. To Miki, switching hospitals felt like choosing between the best possible care, and the best possible death.

“As we understood it, Calvary Bethlehem was the place that people with MND go. It was never discussed with us that there was an alternative that might be better able to support my mum’s desire to apply for VAD,” Miki says.

A woman gazes into a room stacked high with moving boxes.
Miki had her mum’s possessions remotely packed and moved from South Australia during the pandemic. By the time her mother was ready to apply for VAD, they were both exhausted.

One doctor, speaking on the condition of anonymity, told Background Briefing that referring doctors can’t warn their patients about Calvary Bethlehem’s stance, because raising VAD with a patient is illegal.

Doctors can only answer questions about VAD if the patient raises it first, and many have not yet considered it when they’re first diagnosed and choosing a hospital.

“Patients who are inadvertently admitted to Catholic hospitals may never learn of their rights and as doctors we are not allowed to educate them — the questions must come from them,” the doctor said.

“I am forbidden by law to raise the topic. Therein lies a massive problem.”

The doctor said they’d had to remove patients from Calvary Bethlehem’s “superb service” due to its refusal to be involved in VAD.

In a statement, Calvary Bethlehem confirmed the team caring for Miki’s mother were following its policy of not being involved with VAD.

It said it responds “openly, sensitively and respectfully to anyone expressing a wish to explore VAD” and “would not block a person’s access”.

Miki's mum's necklace
Miki says her mum’s decline was “swift and devastating”. “On the one side of [Melbourne’s] lockdown she could hug me and on the other she couldn’t.”

Personal views influencing policy

Objection to VAD is also prevalent in the palliative care sector, where Catholic-run organisations are major players.

But objection is not limited to faith-based organisations — many secular public facilities also refuse to be involved.

QUT Professor of end of life law and regulation, Ben White, says the policy for entire institutions is often influenced by the views of individuals in leadership positions.

Professor White interviewed dozens of families in Victoria about accessing VAD.

He says the majority described objection by healthcare facilities, with their loved ones blocked from having VAD doctors or pharmacists visit, or prohibited from taking the medication on site.

Objection was particularly problematic for regional families he interviewed, who “didn’t have the ability to just go to the next institution down the road,” he says.

A man wearing a suit and tie and glasses stands smiling in front of a shelf full of books.
QUT Professor of end of life law and regulation Ben White.

‘He scolded me’

Like Miki, Julius Pieker had to watch his mother decline during the pandemic.

She had ovarian cancer, and after a bad fall, was sent to Wantirna Palliative Care Unit — a secular public facility servicing Melbourne’s eastern suburbs.

During her stay, she summoned Julius to her bedside and told him she wanted to use VAD. Under the legislation, this is available to anyone expected to die within six months.

“I said to her, look, we’ll support you in whatever you want to do,” he says.

Julius looked around the facility for someone to tell, and spied his mother’s doctor.

But the doctor’s reaction floored Julius.

“He scolded me. And tried to say that I was not to encourage my mum to do this,” Julius says.

“I was distressed by him making that sort of accusation that I would do that, and I told him so.”

Julius says the doctor was silent.

“He didn’t try to console me or say, you know, ‘I didn’t mean to give you the wrong impression’. He was just like stone,” he says.

Legally, there’s no obligation for objecting doctors to refer people like Julius on to a service that might be able to provide more information.

“I was left feeling that I had nowhere to go after I spoke to that one person,” Julius says.

What Julius didn’t realise was that until recently, Wantirna had been transferring patients who requested VAD out of this public facility.

“I didn’t know about the politics of palliative care,” Julius says.

“They have no right to stop people from accessing [VAD], because it’s legal.”

Julius’s mum was transferred back to the public hospital she’d initially come from, where she was able to access the VAD medication to end her life.

Melbourne oncologist, Prasad Cooray, says the transferring of patients out of Wantirna has been an “ongoing problem” for him and his colleagues.

In some instances, patients have been transferred upon requesting a VAD permit — before they even decide whether to go ahead with using the medication.

“[Transferring patients] takes away dignity and adds unnecessary distress to these last moments of their lives,” Dr Cooray says.

A man wearing a light grey jacket sits side on on a stool smiling at the camera with a dark grey backdrop behind
Melbourne oncologist Prasad Cooray says the transferring of patients has been an ‘ongoing problem’.

His biggest fear has been that one of his patients could die in the back of an ambulance during a transfer — “a dying patient is dying, unstable,” he says.

Patients can also be distraught on having to move facilities, and feel chastised, he says.

“It’s a judgement that’s passed upon you. How terrible is that — that we are passing a judgement on the dying patient in a place where we need to be infusing humanity and love?”

The other public palliative care centre in Dr Cooray’s catchment is Caritas Christi, a Catholic organisation with limitations around VAD.

The main option left for patients wanting VAD has been the acute medical wards of local hospitals, which Dr Cooray says are “one step down from an emergency department” and “not designed for dying”.

“Palliative care places are … a much more peaceful environment, as homely as you can make it,” Dr Cooray says.

“These institutions exist for the benefit and for serving the patients.

“And I do not understand how it’s been flipped around that it exists to serve the conscientious objections of staff. Those people should … step aside and allow people who do not have objections to carry it out in that place.”

In other instances, patients had been transferred home, where families often felt ill-equipped to provide 24/7 care for their dying loved one.

Dr Cooray said the local health authority, Eastern Health, had been long aware of the situation at its Wantirna Palliative Care Unit.

But last year, Victoria’s VAD Board got involved after a complaint from a patient’s family.

Eastern Health then changed its guidelines to mandate that VAD be accessible at all its sites, and in recent months, Wantirna stopped transferring patients seeking VAD.

Complete Article ↪HERE↩!

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Cancer patients often want ‘one more round.’

— Should doctors say no?

Studies show that when cancer returns, patients are often quite willing to receive toxic treatments that offer minimal potential benefit.

By by Mikkael A. Sekeres, MD

My patient was in his early 30s and his leukemia had returned again following yet another round of treatment.

He was a poster child for the recently reported rise in cancer rates in the young, and had just asked me what chemotherapy cocktail I could devise for him next, to try to rid him of his cancer.

I hesitated before answering. Oncologists are notorious for always being willing to recommend to our patients one more course of treatment, even when the chances of success are negligible.

One grim joke even poses the question, “Why are coffins nailed shut?” The answer: “To keep oncologists from giving another round of chemotherapy.”

This unflattering stereotype is unfortunately backed by data. In one analysis of patients with a cancer diagnosis treated at one of 280 cancer clinics in the United States between 2011 and 2020, 39 percent received cancer therapy within 30 days of death, and 17 percent within two weeks of dying, with no decrease in those rates from 2015 to 2019.

My patient had received his leukemia diagnosis five years earlier, and initially, following chemotherapy, his cancer had entered a remission. He and his parents were farmers from Latin America and relocated at the time to the United States to focus on his treatment. When the leukemia returned after a year, he underwent a bone-marrow transplant, and that seemed to do the trick, at least for a while.

But then it reared its ugly head a couple of years later, and we worked to slay it with yet more chemotherapy and another transplant.

That victory was short-lived, though, and multiple rounds of unsuccessful treatment later, here we were. The last course had decimated his blood counts, landing him in the hospital with an infection, a bad one that he had barely survived.

Does it help patients live longer or better?

Giving chemotherapy toward the end of life would be justifiable if we benefited our patients by enabling them to live longer, or live better. While that’s our hope, it often isn’t the case.

Other studies have shown that patients with cancer who receive treatment at the end of life are more likely to be admitted to the hospital and even the intensive care unit, less likely to have meaningful goals-of-care discussions with their health-care team, and have worse quality and duration of life.

Recognizing this, the Centers for Medicare & Medicaid Services has identified giving chemotherapy within two weeks of death as a poor-quality indicator that may adversely affect payments to hospitals. As a consequence, cancer doctors are discouraged from offering treatment to patients at the end of life, and can get in trouble with hospital administrators for doing so.

Despite the CMS measure, though, over the past three years the percentage of patients treated at the end of life hasn’t changed much, with one recent study actually showing an increase in patients treated.

Why do we do it? Perhaps optimism is part of our nature, and what draws us to a career in oncology. I focus on the positive, and that may actually help my patients. Other studies have shown that optimism in people with cancer is associated with better quality of life, and even longer survival.

And perhaps the data on giving chemotherapy close to a person’s last days on Earth, and the CMS quality metric, are unfair, and insensitive to the realities of how doctors and patients make decisions.

I stared back into the eyes of my young patient and then into those of his father, who was about my age. He looked kindly, with a thick, bushy white mustache, a red tattersall shirt, and work jeans. This man adored his son, accompanying him to every appointment, and always warmly clasped my right hand with both of his in thanks for our medical care — a gesture I felt unworthy to receive, given my inability to eradicate his son’s leukemia.

If our roles were reversed, how would I react if my son’s cancer doctor told me that the option for more chemotherapy was off the table, as CMS recommends, given the less than 10 percent chance that it would work, and the much higher likelihood that it could harm?

Wouldn’t I demand that the doctor pursue any and all means necessary to save my son’s life? Patients often do, and studies have shown that patients with cancer that has returned are quite willing to receive toxic cancer treatments that promise minimal potential benefit.

We discussed giving another round of chemotherapy, though I told my patient and his family that I was reluctant to administer it given the vanishingly slim chance that it would help. We also talked about my patient enrolling in a clinical trial of an experimental drug. And finally, we talked about palliative care and hospice, my preferred path forward.

“You’ve given us a lot to think about,” my patient told me as he and his family got up to leave, even smiling a bit at the understatement. His father came over to me and clasped my hand warmly, as usual.

But a couple of days later, despite how well he looked in clinic, my patient developed an infection that landed him in the intensive care unit. If I had given him chemotherapy, we would have blamed the treatment for the hospitalization.

But the cause actually lay with his underlying cancer, which had compromised his immune system, making him more vulnerable to infections. This time, my patient became sick enough that he decided enough was enough, and he accepted palliative care.

For many of my patients at the end of life who doggedly pursue that “one more round” of chemotherapy, a hospitalization becomes the sentinel event convincing them that the side effects of treatment just aren’t worth it anymore. It’s then no wonder people die so soon after their final treatment and time in the hospital.

It isn’t justifiable to give people with cancer chemotherapy when it is futile, just to be able to say “we tried something.” That’s what the CMS quality metric is trying to prevent. But in doing so, it shouldn’t interfere with a patient’s opportunity to come to that decision themselves.

Complete Article ↪HERE↩!

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What does a death doula do?

— Alua Arthur on her ancient profession

Alua Arthur

Death anxiety and end-of-life planning are all in a day’s work for a care worker who helps shepherd clients off this mortal coil

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There is little about Alua Arthur that emanates the deathly or morbid. The 45-year-old Los Angeles resident has a radiant, gap-toothed smile, a propensity for citrus-colored nail polish and an inclination to laugh before she finishes a sentence.

But not long ago, she was a Legal Aid worker struggling with depression, frequently taking breaks to travel around the world, attend music festivals, visit friends and enjoy short-lived romances with fellow searchers. While backpacking in Cuba, she boarded a bus and sat next to a woman around her age who revealed that she had been diagnosed with uterine cancer. What followed was an hours-long conversation that sent her world off its axis.

“It was strangely intimate and comfortable and hilarious,” Arthur said. “There was such an ease in our new friendship that allowed us to travel to the depths together, and discuss our fears and hopes.” Not long after she came home, her brother-in-law was dying of cancer, and she threw herself into caring for him, her sister and her then four-year-old niece.

Within a few months, she followed her gut and enrolled in a training program to become a death doula, an end-of-life care worker who helps people tie up their affairs and feel more at ease as they face the inevitable. The job can involve providing company, talking through clients’ feelings about estranged friends and family members, and helping them look back on their lives and identify the moments of which they are proud and also their regrets. It’s a calling that Arthur, who grew up in Colorado as the daughter of political refugees from Ghana, details in her rousing memoir, Briefly Perfectly Human.

A celebratory spirit pervades the book. The flip side of thinking about death all day, after all, is remembering how fleeting life is and relishing the mere act of living, as well as the people and natural beauty that surrounds us. Arthur, whose company, Going With Grace, has trained over 2,500 death professionals in 17 countries, spoke with the Guardian about her end-of-life work.

The death doula seems to be gaining popularity, on the heels of the birth doula. Do you sense that we will be hearing about death doulas more and more?

The death doula is very ancient, because as long as humans have been alive, they’ve been dying, and others have been supporting them into their dying. But the profession and the formality of it have been rising in the modern world. It’s similar to birth doulas in the concept and in the work that we do – we care for and celebrate one another. But there’s now a Fortune 500 company that has a death doula benefit as part of their benefits program, where employees get reimbursed to seek the services of a doula for somebody that they consider family. They can help be supportive for somebody’s dying and get reimbursed. Isn’t that pretty rad?

You talk a lot in your book about the difference between empathy and compassion. Can you walk me through that?

I’ve been really empathic all my life. I feel things very deeply. And I feel that I’m feeling things on behalf of other people, but also what I’m feeling for them are things that I’ve made up in my head about what the experience is like. And when I’m doing that when somebody is dying, it’s really dangerous because I don’t know what it’s like to be dying. I can imagine it all I want, but I don’t know what it’s like, and that can be really problematic. This may be a little rude, but I feel like empathic people, sometimes we’re pretty self-aggrandizing in some way. What we have to do when we’re working with people that are dying is practice lucid compassion, which says: I don’t know what it is that you’re experiencing, but I’m down. I’m here with you, and I’ll ride with you.

Book cover of Briefly Perfectly Human, by Alua Arthur.

What does a typical week in your work life look like?

I’m not seeing clients currently – I’m way too busy. These days I’m focusing on spreading public awareness about how we die, hoping to help more people get support when they’re dying, and honestly help more death doulas get clients. But when I was seeing clients, I would have probably just one client whose death looks like it’s coming soon, and then multiple end-of-life-planning clients. And I’d also be doing death meditations, and hosting workshops and helping healthy people plan for the end of life, and helping somebody who has a serious illness.

So not all of your clients count as end-of-life patients?

Many clients are people that carry a lot of death anxiety. There was one client who I met with maybe for two years. His mom had died and his death anxiety was through the roof after she died. And so once a week for almost two years, he would sit and talk about where death anxiety popped up in his life that week, and we’d work through it. I’d offer tips and tricks and we’d do exercises. There was one young woman, she was 22 years old and her parents were in their 50s. But she just thought that it’d be wise to do end-of-life planning and I thought, oh, cool. Let’s do it.

There is a trend in our culture to fetishize the “birth story” but people back off from discussing death, let alone the “death story”.

We want to pretend that it’s not happening. And yet it’s happening every day, all around us. Not only in nature, but there’s probably somebody a few doors down from your home who knows somebody who’s in the process of dying. And we don’t have any skills to talk about our experience. We don’t make space for grief.

But I feel like it’s starting to shift. For example, this television series, Limitless, with Chris Hemsworth. In one of the episodes he explores the limits of his physical body. Even though the previous episodes were all about how he could live longer and better, a whole one is thinking about death.

Our world is lousy with biohackers trying to stave off death.

We can’t escape it. That’s kind of the point. People work so hard to create all these workarounds and try to deny it in some capacity. But by denying it, they’re making it more real. Like, why not just spend the time talking about your fears of death?

In your book you don’t hold back about your battle with depression. How does that inform your work?

Well, for starters, my life prior to death care was just kind of a hot mess. There was no direction, no purpose, but there was plenty of adventure. I was the lawyer working at Legal Aid and who was broke, saddled in debt. Prior to death care, I was always seeking something – you know, something that made me feel alive. I sought out big adventures, traveled to faraway places, ate different foods. I used to go to Burning Man but I haven’t been recently. I think that part of me has always been seeking peak experiences in life. That part of me lends itself really, really easily to death care because a big part of my relationship to death is grounding myself in this body of this life for now, and filling it up as much as I can.

What’s the number one question people ask you when they’re dying?

They always ask what the meaning of it all is. And I don’t know! I know that maybe the locs and the dark skin and the jewelry make people think that I’m talking to other beings all the time, that I’m mystical. But I don’t know anything.

Two of my friends recently lost their parents and I’ve been struggling with writing letters to them. Do you have any advice?

Sometimes the right thing to do is just to show up and say, like, “This is really, really hard but I don’t know what to say, but just know that I care about you. Just know that I know this happened. I don’t know what you’re experiencing. And this is uncomfortable, but I want you to know that I’m here and I care about you.” And then you’ll probably get a thank-you, and if they want to talk about the person they lost, they will, and if they want to talk about the Kardashians, they will.

How does your current work influence the way you live now?

I think I give myself a lot more grace for the mistakes I make and my sadness and my fear and my doubt, and the extra pounds that I’m carrying. I give myself a lot more freedom to enjoy food. Whereas before, I was so concerned with being skinny and exercising, and now I’m like, fuck it, like I’m so grateful for this body that carries me around Earth. Plus, I love chocolate cake.

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Many Patients Don’t Survive End-Stage Poverty

By Lindsay Ryan

He has an easy smile, blue eyes and a life-threatening bone infection in one arm. Grateful for treatment, he jokes with the medical intern each morning. A friend, a fellow doctor, is supervising the man’s care. We both work as internists at a public hospital in the medical safety net, a loose term for institutions that disproportionately serve patients on Medicaid or without insurance. You could describe the safety net in another way, too, as a place that holds up a mirror to our nation.

What is reflected can be difficult to face. It’s this: After learning that antibiotics aren’t eradicating his infection and amputation is the only chance for cure, the man withdraws, says barely a word to the intern. When she asks what he’s thinking, his reply is so tentative that she has to prompt him to repeat himself. Now with a clear voice, he tells her that if his arm must be amputated, he doesn’t want to live. She doesn’t understand what it’s like to survive on the streets, he continues. With a disability, he’ll be a target — robbed, assaulted. He’d rather die, unless, he says later, someone can find him a permanent apartment. In that case, he’ll proceed with the amputation.

The psychiatrists evaluate him. He’s not suicidal. His reasoning is logical. The social workers search for rooms, but in San Francisco far more people need long-term rehousing than the available units can accommodate. That the medical care the patient is receiving exceeds the cost of a year’s rent makes no practical difference. Eventually, the palliative care doctors see him. He transitions to hospice and dies.

A death certificate would say he died of sepsis from a bone infection, but my friend and I have a term for the illness that killed him: end-stage poverty. We needed to coin a phrase because so many of our patients die of the same thing.

Safety-net hospitals and clinics care for a population heavily skewed toward the poor, recent immigrants and people of color. The budgets of these places are forever tight. And anyone who works in them could tell you that illness in our patients isn’t just a biological phenomenon. It’s the manifestation of social inequality in people’s bodies.

Neglecting this fact can make otherwise meticulous care fail. That’s why, on one busy night, a medical student on my team is scouring websites and LinkedIn. She’s not shirking her duties. In fact, she’s one of the best students I’ve ever taught.

This week she’s caring for a retired low-wage worker with strokes and likely early dementia who was found sleeping in the street. He abandoned his rent-controlled apartment when electrolyte and kidney problems triggered a period of severe confusion that has since been resolved. Now, with little savings, he has nowhere to go. A respite center can receive patients like him when it has vacancies. The alternative is a shelter bed. He’s nearly 90 years old.

Medical textbooks usually don’t discuss fixing your patient’s housing. They seldom include making sure your patient has enough food and some way to get to a clinic. But textbooks miss what my med students don’t: that people die for lack of these basics.

People struggle to keep wounds clean. Their medications get stolen. They sicken from poor diet, undervaccination and repeated psychological trauma. Forced to focus on short-term survival and often lacking cellphones, they miss appointments for everything from Pap smears to chemotherapy. They fall ill in myriad ways — and fall through the cracks in just as many.

Early in his hospitalization, our retired patient mentions a daughter, from whom he’s been estranged for years. He doesn’t know any contact details, just her name. It’s a long shot, but we wonder if she can take him in.

The med student has one mission: find her.

I love reading about medical advances. I’m blown away that with a brain implant, a person who’s paralyzed can move a robotic arm and that surgeons recently transplanted a genetically modified pig kidney into a man on dialysis. This is the best of American innovation and cause for celebration. But breakthroughs like these won’t fix the fact that despite spending the highest percentage of its G.D.P. on health care among O.E.C.D. nations, the United States has a life expectancy years lower than comparable nations—the U.K. and Canada— and a rate of preventable death far higher.

The solution to that problem is messy, incremental, protean and inglorious. It requires massive investment in housing, addiction treatment, free and low-barrier health care and social services. It calls for just as much innovation in the social realm as in the biomedical, for acknowledgment that inequities — based on race, class, primary language and other categories — mediate how disease becomes embodied. If health care is interpreted in the truest sense of caring for people’s health, it must be a practice that extends well beyond the boundaries of hospitals and clinics.

Meanwhile, on the ground, we make do. Though the social workers are excellent and try valiantly, there are too few of them, both in my hospital and throughout a country that devalues and underfunds their profession. And so the medical student spends hours helping the family of a newly arrived Filipino immigrant navigate the health insurance system. Without her efforts, he wouldn’t get treatment for acute hepatitis C. Another patient, who is in her 20s, can’t afford rent after losing her job because of repeated hospitalizations for pancreatitis — but she can’t get the pancreatic operation she needs without a home in which to recuperate. I phone an eviction defense lawyer friend; the young woman eventually gets surgery.

Sorting out housing and insurance isn’t the best use of my skill set or that of the medical students and residents, but our efforts can be rewarding. The internet turned up the work email of the daughter of the retired man. Her house was a little cramped with his grandchildren, she said, but she would make room. The medical student came in beaming.

In these cases we succeeded; in many others we don’t. Safety-net hospitals can feel like the rapids foreshadowing a waterfall, the final common destination to which people facing inequities are swept by forces beyond their control. We try our hardest to fish them out, but sometimes we can’t do much more than toss them a life jacket or maybe a barrel and hope for the best.

I used to teach residents about the principles of internal medicine — sodium disturbances, delirium management, antibiotics. I still do, but these days I also teach about other topics — tapping community resources, thinking creatively about barriers and troubleshooting how our patients can continue to get better after leaving the supports of the hospital.

When we debrief, residents tell me how much they struggle with the moral dissonance of working in a system in which the best medicine they can provide often falls short. They’re right about how much it hurts, so I don’t know exactly what to say to them. Perhaps I never will.

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As doctors, we are failing to put patients’ needs first, causing harm at the end of life

— Doctors including Zachary Tait and Rupal Shah, and recently bereaved readers Jo Fisher and Rebecca Howling, respond to Adrian Chiles’s column on how his father spent two of the last days of his life alone and distressed in A&E, for no good reason

‘As a junior doctor working in A&E, I loathed watching frail, mostly older people languish on trolleys in corridors.’

My condolences to Adrian Chiles on the death of his father. His column describing the futility of his father’s last “precautionary” trip to A&E (3 April) highlights a rising challenge of the ageing population. As health and social care services collapse, the harms and indignities of hospital admission increase, especially for those least able to advocate for themselves. As a junior doctor working in A&E, I loathed watching frail, mostly older people languish on trolleys in corridors, receiving substandard treatment that they didn’t want and were unlikely to benefit from. This is now the norm in every hospital I’ve been to.

A 2014 study showed that more than a quarter of hospital inpatients die within a year. The risk, perhaps unsurprisingly, increases with age. It is our responsibility as clinicians to have difficult and frank conversations with patients ahead of time; to be pragmatic, realistic and kind in our decision-making. Unfortunately, lots of this comes under “planning for the future”, which tends to slip down the to-do list during a crisis. It is the single most rewarding part of my work to have the time and opportunity to make care plans with patients, to know what matters most to them, and to stop the “shrugs” that Chiles faced at every turn. But medicine-by-protocol is quicker and cheaper than thought and pragmatism, so as resources are stretched ever further, it may continue to flourish. I am so sad for Peter Chiles’s distress, and so grateful that his son uses his voice to call attention to it.
Zachary Tait
Manchester

I have been a GP partner in Battersea, London, for 20 years. Unfortunately, Adrian Chiles’s opinion piece absolutely resonates. As clinicians, we are now taught to prioritise “safety” over all other considerations – despite the dangers inherent in doing so. Really, we are often protecting ourselves more than we are protecting our patients – an inadvertent side-effect of our unforgiving regulatory system.

We doctors are behaving as “artificial persons” who represent the healthcare system, and not as moral agents who have a duty to create meaning with our patients. We urgently need to move into a moral era of medicine – one that rejects both the protectionism of the past and the reductionism of the current context, which so often results in the cruelties and inefficiencies that Chiles describes.
Rupal Shah
Co-author, Fighting for the Soul of General Practice – The Algorithm Will See You Now

Adrian Chiles’s article stirred my thinking, as I have been on a similar journey. My husband died two weeks ago, having been advised that he had three months to live. This proved to be the case. With the Hospice at Home service, the NHS was truly wonderful. He died, however, with morphine slowly killing him. This could have been prevented if an assisted dying law was in place. One of the nurses said that what we were doing was cruel.

We were able to resist a possible hospital admission for chest pains by having what is called a ReSPECT document signed by our GP for “do not resuscitate”, and because we had an advance directive, dated 2022, that had been placed with the GP and was on his medical records. This made the whole process so much easier for us, but also for the various wonderful medics. Parliament needs to update our laws to align with so many in this country who wish for greater clarity and support Dignity in Dying.
Jo Fisher
Brampton, Cambridgeshire

In response to Adrian Chiles’s article, and having recently lost my own father, the best advice I can offer anyone is to make sure you have power of attorney in place for your parents. That is the way you can ensure that you have the power to override the decisions of medical staff who, while acting with the best intentions, will not know your parents as well as you do and may not make the decision that is best for them, or what they would have wanted. Having a power of attorney in place is more important than a will, in my view, because it enables you to help your living parent and ensure that their wishes are complied with. In my father’s final days, I was asked numerous times: “Do you have power of attorney?” I was very relieved to be able to answer: “Yes.”
Rebecca Howling
Toft, Cambridgeshire

As the daughter of an elderly parent, I very much understand the need for A&E avoidance, to cause least distress. No doubt waiting haplessly alone for many hours hastens demise. However, as a GP, I know that the huge increase in litigation over the last 20 years is a very real threat to doctors’ livelihoods. Even a simple complaint from a patient or their family can cause weeks, months, sometimes years, of stress to a health professional. Ruminating over every decision, every action or inaction, every justification, is enough to give us a heart attack – or worse, to make us follow in the footsteps of Paul Sinha and Adam Kay and quit the profession for a more peaceful existence.
Name and address supplied

Dear Adrian, I am so sorry that this happened to your dad. Sadly, it is a story repeated again and again. I am what is termed a “late career” doctor (over 55), and I recently transitioned from working as an emergency consultant to become a GP working in aged care. Over my 30-year career, mainly in emergency and other hospital specialities, although including a significant period in palliative care, I slowly came to appreciate that the way we have set up our emergency system doesn’t serve older people at all, and the frailest elderly are generally so poorly served that transferring them almost inevitably makes things worse.

My residents (200 across five aged care facilities) all have discussion and documentation of whether they should go to hospital and under what circumstances. The staff know to call me if there is any uncertainty, day or night. I do lots of family meetings so relatives can feel confident that the right decisions will be made. I love looking after old people and ensuring they get the best care that is right for their individual circumstances.

I firmly believe that aged care in particular is a GP subspecialty of its own. Too often care is fitted into lunch breaks and “on the way home” visits, and devolved to phone services out of hours. This is no way to treat our oldest and frailest, who deserve so much better. Again, I am so sorry.
Fiona Wallace
Sheffield, Tasmania, Australia

I read Adrian Chiles’s article about his father’s experience with empathy. My own father led a district health authority, with many hospitals under his care. He was intensely proud of the NHS, but in his 90s he was very clear that he didn’t wish to die in hospital or even to be admitted again unless absolutely essential. If he had an infection, he would be treated at home. Should it worsen and Dad die, it would be in his own bed. As a family, we listened. I was caring for him and know it took a huge weight off Dad’s mind to know that he need not dread the ambulance or the bewilderment of a strange place. Too many elderly people die in the back of ambulances and in A&E. Let those who are able to do so make informed choices about their end of life. It is a great comfort to them.
Dr Jane Lovell
Ashford, Kent

Adrian Chiles is correct that decisions about sending frail and elderly patients to hospital can be due to doctors being risk-averse. Doctors face a double jeopardy from the General Medical Council, who can take their livelihood, and the legal system if things go wrong.

Not all families can accept when beloved elderly relatives have reached the end of their life. Some people have unrealistic expectations about what healthcare can achieve in frail patients, and push for investigations and treatments even when it seems unlikely to affect the final outcome. If these are not performed, doctors can be accused of negligence or ageism. Most doctors would like less invasive healthcare at the end of life for themselves and their own families than they routinely offer to patients.

I would encourage everyone to write an advance directive or “living will” outlining how they would like to be treated in the event of their health deteriorating. I would also suggest giving a trusted person power of attorney for healthcare. These can be very helpful in reducing incidents like the one described in the article.
Dr Stephen Docherty
Consultant radiologist, Dundee

I would like to express my condolences to Adrian Chiles on the death of his father. I can empathise with him on many levels. I too lost my father recently in not dissimilar circumstances. I am a practising GP, a former medical director of an out-of-hours GP service, and now spend most of time as a management consultant trying to influence change in the NHS to stop incidents like this happening.

When I talk to clinicians and managers, I am always humbled by their devotion despite the pressures they work under. In my current assignment, over 32% of clinicians feel they are burnt out, and many more express intense frustration with the low-value clinical work they undertake. There is a limit to how much the system and the individuals who prop it up can give. The demand for care is rising every year.

I suspect that the GP who decided to send Adrian’s father to A&E without seeing him was under pressure to make a number of decisions that night. Given more choice, I’m sure they would have prioritised cases such as Adrian’s father over lower-priority, often unnecessary cases. What we do not discuss as a society with as much fervour as the system and those who provide care is how we consume care, so we can create time and space to support those who really need necessary attention.
Dr Riaz Jetha
London

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