Shift in Child Hospice Care Is a Lifeline for Parents Seeking a Measure of Comfort and Hope


Hospice nurse Raul Diaz checks Aaron Martinez’s vital signs. Despite his mom’s seemingly healthy pregnancy, Aaron was born with most of his brain cells dead, the result of two strokes and a massive bleed that occurred in utero.

By Bernard J. Wolfson

When you first meet 17-month-old Aaron Martinez, it’s not obvious that something is catastrophically wrong.

What you see is a beautiful little boy with smooth, lustrous skin, an abundance of glossy brown hair, and a disarming smile. What you hear are coos and cries that don’t immediately signal anything is horribly awry.

But his parents, Adriana Pinedo and Hector Martinez, know the truth painfully well.

Although Adriana’s doctors and midwife had described the pregnancy as “perfect” for all nine months, Aaron was born with most of his brain cells dead, the result of two strokes and a massive bleed he sustained while in utero.

Doctors aren’t sure what caused the anomalies that left Aaron with virtually no cognitive function or physical mobility. His voluminous hair hides a head whose circumference is too small for his age. He has epilepsy that triggers multiple seizures each day, and his smile is not always what it seems. “It could be a smile; it could be a seizure,” his mother said.

Shortly after Aaron was born, doctors told Adriana, 34, and Hector, 35, there was no hope and they should “let nature take its course.” They would learn months later that the doctors had not expected the boy to live more than five days. It was on Day 5 that his parents put him in home hospice care, an arrangement that has continued into his second year of life.

The family gets weekly visits from hospice nurses, therapists, social workers, and a chaplain in the cramped one-bedroom apartment they rent from the people who live in the main house on the same lot on a quiet residential street in this Inland Empire city.

A photo shows two nurses attending to 17-month-old Aaron Martinez while his mother, Adriana Pinedo, holds him.
Adriana Pinedo holds her son, Aaron Martinez, during a visit with hospice nurses Raul Diaz (left) and Shannon Stiles. Pinedo describes the weekly hospice visits from nurses, therapists, social workers, and a chaplain as “our lifeline.”

One of the main criteria for hospice care, established by Medicare largely for seniors but also applied to children, is a diagnosis of six months or less to live. Yet over the course of 17 months, Aaron’s medical team has repeatedly recertified his hospice eligibility.

Under a provision of the 2010 Affordable Care Act, children enrolled in Medicaid or the Children’s Health Insurance Program are allowed, unlike adults, to be in hospice while continuing to receive curative or life-extending care. Commercial insurers are not required to cover this “concurrent care,” but many now do.

More than a decade since its inception, concurrent care is widely credited with improving the quality of life for many terminally ill children, easing stress on the family and, in some cases, sustaining hope for a cure. But the arrangement can contribute to a painful dilemma for parents like Adriana and Hector, who are torn between their fierce commitment to their son and the futility of knowing that his condition leaves him with no future worth hoping for.

“We could lose a life, but if he continues to live this way, we’ll lose three,” said Adriana. “There’s no quality of life for him or for us.”

Aaron’s doctors now say he could conceivably live for years. His body hasn’t stopped growing since he was born. He’s in the 96th percentile for height for his age, and his weight is about average.

His parents have talked about “graduating” him from hospice. But he is never stable for long, and they welcome the visits from their hospice team. The seizures, sometimes 30 a day, are a persistent assault on his brain and, as he grows, the medications intended to control them must be changed or the doses recalibrated. He is at continual risk of gastrointestinal problems and potentially deadly fluid buildup in his lungs.

Adriana, who works from home for a nonprofit public health organization, spends much of her time with Aaron, while Hector works as a landscaper. She has chosen to live in the moment, she said, because otherwise her mind wanders to a future in which either “he could die — or he won’t, and I’ll end up changing the diapers of a 40-year-old man.” Either of those, she said, “are going to suck.”

While cancer is one of the major illnesses afflicting children in hospice, many others, like Aaron, have rare congenital defects, severe neurological impairments, or uncommon metabolic deficiencies. 

“We have diseases that families tell us are one of 10 cases in the world,” said Dr. Glen Komatsu, medical director of Torrance-based TrinityKids Care, which provides home hospice services to Aaron and more than 70 other kids in Los Angeles and Orange counties.

A photo shows Aaron Martinez sleeping in a crib.
Aaron Martinez sleeps in the bedroom he shares with his mother and father in Pomona, California.

In the years leading up to the ACA’s implementation, pediatric health advocates lobbied hard for the concurrent care provision. Without the possibility of life-extending care or hope for a cure, many parents refused to put their terminally ill kids in hospice, thinking it was tantamount to giving up on them. That meant the whole family missed out on the support hospice can provide, not just pain relief and comfort for the dying child, but emotional and spiritual care for parents and siblings under extreme duress.

TrinityKids Care, run by the large national Catholic health system Providence, doesn’t just send nurses, social workers, and chaplains into homes. For patients able to participate, and their siblings, it also offers art and science projects, exercise classes, movies, and music. During the pandemic, these activities have been conducted via Zoom, and volunteers deliver needed supplies to the children’s homes.

The ability to get treatments that prolong their lives is a major reason children in concurrent care are more likely than adults to outlive the six-months-to-live diagnosis required for hospice.

“Concurrent care, by its very intention, very clearly is going to extend their lives, and by extending their lives they’re no longer going to be hospice-eligible if you use the six-month life expectancy criteria,” said Dr. David Steinhorn, a pediatric intensive care physician in Virginia, who has helped develop numerous children’s hospice programs across the U.S.

Another factor is that kids, even sick ones, are simply more robust than many older people.

“Sick kids are often otherwise healthy, except for one organ,” said Dr. Debra Lotstein, chief of the division of comfort and palliative care at Children’s Hospital Los Angeles. “They may have cancer in their body, but their hearts are good and their lungs are good, compared to a 90-year-old who at baseline is just not as resilient.”

All of Aaron Martinez’s vital organs, except for his brain, seem to be working. “There have been times when we’ve brought him in, and the nurse looks at the chart and looks at him, and she can’t believe it’s that child,” said his father, Hector.

A photo shows a nurse giving 17-month-old Aaron Martinez medicine via an oral syringe.
Hospice nurse Shannon Stiles gently administers Aaron Martinez an oral medication. Many hospice organizations are reluctant to take children, whose medical and emotional needs are often intense and complex.

When kids live past the six-month life expectancy, they must be recertified to stay in hospice. In many cases, Steinhorn said, he is willing to recertify his pediatric patients indefinitely.

Even with doctors advocating for them, it’s not always easy for children to get into hospice care. Most hospices care primarily for adults and are reluctant to take kids.

“The hospice will say, ‘We don’t have the capacity to treat children. Our nurses aren’t trained. It’s different. We just can’t do it,’” said Lori Butterworth, co-founder of the Children’s Hospice and Palliative Care Coalition of California in Watsonville. “The other reason is not wanting to, because it’s existentially devastating and sad and hard.”

Finances also play a role. Home hospice care is paid at a per diem rate set by Medicare — slightly over $200 a day for the first two months, about $161 a day after that — and it is typically the same for kids and adults. Children, particularly those with rare conditions, often require more intensive and innovative care, so the per diem doesn’t stretch as far.

The concurrent care provision has made taking pediatric patients more viable for hospice organizations, Steinhorn and others said. Under the ACA, many of the expenses for certain medications and medical services can be shifted to the patient’s primary insurance, leaving hospices responsible for pain relief and comfort care.

Even so, the relatively small number of kids who die each year from protracted ailments hardly makes pediatric hospice an appealing line of business in an industry craving growth, especially one in which private equity investors are active and seeking a big payday.

In California, only 21 of 1,336 hospices reported having a specialized pediatric hospice program, and 59 said they served at least one patient under age 21, according to an analysis of 2020 state data by Cordt Kassner, CEO of Hospice Analytics in Colorado Springs, Colorado.

Hospice providers that do cater to children often face a more basic challenge: Even with the possibility of concurrent care, many parents still equate hospice with acceptance of death. That was the case initially for Matt and Reese Sonnen, Los Angeles residents whose daughter, Layla, was born with a seizure disorder that had no name: Her brain had simply failed to develop in the womb, and an MRI showed “fluid taking up space where the brain wasn’t,” her mother said.

When Layla’s team first mentioned hospice, “I was in the car on my phone, and I almost crashed the car,” Reese recalled. “The first thought that came to mind was, ‘It is just the end,’ but we felt she was nowhere near it, because she was strong, she was mighty. She was my little girl. She was going to get through this.”

About three months later, as Layla’s nervous system deteriorated, causing her to writhe in pain, her parents agreed to enroll her in hospice with TrinityKids Care. She died weeks later, not long after her 2nd birthday. She was in her mother’s arms, with Matt close by.

“All of a sudden, Layla breathed out a big rush of air. The nurse looked at me and said, ‘That was her last breath.’ I was literally breathing in her last breath,” Reese recounted. “I never wanted to breathe again, because now I felt I had her in my lungs. Don’t make me laugh, don’t make me exhale.”

Layla’s parents have no regrets about their decision to put her in hospice. “It was the absolute right decision, and in hindsight we should have done it sooner,” Matt said. “She was suffering, and we had blinders on.”

A photo shows Adriana Pinedo sitting at home and feeding her son, Aaron, with a bottle.
Adriana Pinedo spends much of her day alone with her son. She has chosen to live in the moment, she says, because otherwise her mind wanders to a future in which either “he could die — or he won’t, and I’ll end up changing the diapers of a 40-year-old man.”

Adriana Pinedo said she is “infinitely grateful” for hospice, despite the heartache of Aaron’s condition. Sometimes the social worker will stop by, she said, just to say hello and drop off a latte, a small gesture that can feel very uplifting. “They’ve been our lifeline,” she said.

Adriana talks about a friend of hers with a healthy baby, also named Aaron, who is pregnant with her second child. “All the stuff that was on our list, they’re living. And I love them dearly,” Adriana said. “But it’s almost hard to look, because it’s like looking at the stuff that you didn’t get. It’s like Christmas Day, staring through the window at the neighbor’s house, and you’re sitting there in the cold.”

Yet she seems palpably torn between that bleak remorse and the unconditional love parents feel toward their children. At one point, Adriana interrupted herself midsentence and turned to her son, who was in Hector’s arms: “Yes, Papi, you are so stinking cute, and you are still my dream come true.”

Complete Article HERE!

‘So many people are terrified of death.’

Death doulas provide end-of-life support.

Need emotional or spiritual support at the end of life? Hire a death doula.

By Jessica Hall

When Diane Button’s grandfather died at 85, he had a smile on his face and a sense of peace that made her want to learn his secret.

Being with him in the final hours of his death after watching his life caring for others as a doctor inspired Button to get a master’s degree in counseling and start volunteering with hospice programs. She then trained as a ‘death doula,’ wrote books about living well, and now teaches at the end-of-life doula professional certificate program at the Larner College of Medicine at the University of Vermont.

“It wasn’t so much to learn about dying as it was to learn about living well and ultimately dying well,” Button said.

Button is part of a growing number of so-called ‘death doulas’ who provide nonmedical care and support for people who are dying. Similar to the dynamic between a midwife and a birth doula, a physician or hospice caregiver would provide medical care at the end of life, while a death doula provides emotional and spiritual support and help to the patient and the family and friends.

There’s currently no licensing, no industry standards and no insurance reimbursement for death doula services. Doulas can be volunteers or get paid out of pocket.

Without licensing requirements, it’s difficult to track the number of people providing end-of-life support doula services. But since its inception in 2017, the National End-of-Life Doula Alliance has grown to 1,350 members in 49 states (all except South Dakota) and 13 countries.

Karen Reppen, an end-of-life doula and a member of the board of the National End-of-Life Doula Alliance, attributes the growth in awareness and numbers of doulas, in part, to COVID, when people often died alone, as well as the growth of the hospice movement and the sheer numbers of people closer to dying as baby boomers age.

“More people are willing to explore options beyond the hospital and what the medical system can provide,” Reppen said. “We no longer have multigenerational homes, communities may not be as tight knit as they once were, everyone is working – caregiving is a huge, huge challenge. Nonmedical support is needed to survive death with some grace.”

“There’s incredible need for support when you’re a caregiver and your loved one is dying. Whether it’s to simply walk the dog, go grocery shopping, get a few minutes to yourself, get help in navigating the medical information – there’s so many reasons to have some support,” Reppen said.

“Caregivers are very strained. The need for compassionate, skilled people to hold that space in our progressively isolating society is so valuable,” Reppen said. “So many people are traumatized and terrified of death. Even people with family and friends surrounding them may need help. Really, there is no other thing that we’re all guaranteed to share than the fact that we’re going to die.”

Robert Gramling, a palliative care physician and a core faculty partner for the University of Vermont doula program, agreed that the pandemic created an opportunity to talk about death in a way society hadn’t before.

“It can be terrifying to be sick. The COVID pandemic brought into sharp relief that death is part of life. The tragedy of social distancing has sharpened our focus on the space of being alone and isolated. It catapulted us into a public health crisis of loneliness and isolation. Our world is thirsty for this,” said Gramling.

The program at University of Vermont, which is online, is just one certificate program offered around the country. It attracts people from all stages of life, from diverse backgrounds – social workers, chaplains, hospice workers, family caregivers – all with the central desire to learn about death and dying.

“There will be a tipping point where it becomes more accepted. I think with the pandemic the world is valuing more this idea of ‘I want to be known. I want to be dignified and accepted,’” Gramling said. “We’re bubbling toward a tipping point that talking about death becomes part of life. Our world is becoming more open.”

“The doulas’ role is to fill the gaps any time people are feeling lonely or not heard. Anywhere along the course of a serious illness doulas can provide space with nonjudgment,” Gramling said.

Doulas can help younger, healthy people with advance directives, sit vigils for the dying or create legacy projects of stories to pass down to other generations.

Button said more doctors are referring patients to end-of-life doulas once medical needs can’t be met anymore.

“The time has come for doulas to emerge. The pandemic opened up the conversation about death and dying. So many people were impacted by it. The pandemic opened the door a crack and gave them a glimpse of mortality,” Button said.

“It’s an honor to be invited to the bedside of the dying,” Button said. “It’s emotional. It’s deep work of the heart.”

Complete Article HERE!

Doctors receive training to openly discuss death and dying with patients

More doctors are having conversations with patients about end-of-life care.

By Joanne Finnegan

It can be a tough conversation for most doctors: talking to a patient who is dying.

It can make many physicians uncomfortable, which is why they can benefit from training to help teach them how to talk to patients about death and dying.

One of these efforts has been put together by Anna-Gene O’Neal, who runs Alive Hospice in Tennessee, according to STAT. She launched the SHARE simulation lab last year that allows physicians and other clinicians to run though scenarios with actors, who play the part of patients.

For instance, a doctor interacts with a “patient” who has lung cancer and has undergone chemotherapy. When he tells her she doesn’t need more chemotherapy, she wonders if she has beaten the disease, but the doctor must tell her the cancer has metastasized and she has only six months or less to live.

The simulation is recorded and the video given to the doctor as a way to learn how to deal with patient emotions that include confusion, denial, anger and grief. O’Neal watches the tape with the doctors on a big-screen TV and encourages direct and honest communication with patients. Clinicians pay $350 to work through four scenarios and then watch the videos and get feedback. She recommends doctors:  

  • Be aware of  their body language. Look patients in the eye and focus on them. 
  • Communicate like it’s a conversation. Become comfortable with long pauses after breaking difficult news to a patient.
  • Be direct with patients about their prognosis.

Hospitals and hospice programs are setting up training programs across the country. Stanford’s palliative medicine department has used similar techniques to train hospice nurses in California, STAT said. Oncologists at the University of Rochester Medical Center in New York observe other doctors having conversations with patients facing terminal illness. And in Arizona, administrators of Hospice of the West in Phoenix hold regular training sessions at staff meetings.

The Florida Hospital Association has also partnered with the Institute for Healthcare Improvement to provide hospitals and communities with training designed to generate end-of-life care discussions early on, according to Hospitals & Health Networks. Hospital training began in May and community training will get underway as part of the Conversation Project, which aims to help patients die in circumstances and surroundings that they choose.

The statistics show that more doctors are engaging in end-of-life counseling sessions with Medicare patients. In 2016, the first year doctors could charge Medicare for the service, nearly 14,000 providers billed almost $35 million—including nearly $16 million paid by Medicare—or advance care planning conversations for about 223,000 patients from January through June, according to data released from the Centers for Medicare & Medicaid Services.

Complete Article HERE!

Three things I have learned about end-of-life care from treating elderly couples with cancer

Experience provides fortitude, equanimity and perspective. Not everyone wants to live forever

‘The mission of a “geriatric oncology” service is to treat the cancer in the context of the whole patient.’

by

“We are happy and sad to see you again. You looked after Dad years ago.”

I kick myself for not registering the connection, although I only met him during a brief and disastrous stint in hospital.

The complications of cancer treatment had kept mounting until his wife was forced to admit her 85-year-old husband to hospital despite his protestations. His memory had faded and his moods turned volatile. He died in hospital, captious and discontent. I now recall the exhaustion of the family and their guilt-ridden attempts to reconcile with his end.

Some of my work involves seeing cancer patients in their 80s and 90s. The mission of a “geriatric oncology” service is to treat the cancer in the context of the whole patient; while it can be said that all cancer care ought to share this mission, elderly patients are a particularly vulnerable group, with little margin for misadventure. Since two in five people will receive a cancer diagnosis by the age of 85, there have been several occasions when I have treated both husband and wife.

Here are three things that I have learnt from looking after my most elderly patients.

1. Their goals differ

While younger patients compare their treatment to what someone else is having or bring in an overseas recommendation, and (understandably) want to leave no stone unturned, even at the cost of significant toxicity, my oldest patients often have a different goal – to preserve quality of life and maintain independence, even at the cost of survival.

This is especially true when a person is both patient and caregiver.

Co-dependant elders can get by happily in their own home but the moment one stumbles, both are in jeopardy. I frequently meet people who base decisions on combined harm rather than individual good. Interestingly, the people who sometimes struggle to comprehend this are their doctors who are taught to focus on cure.

Many patients who have accompanied a spouse through cancer and end-of-life care have used the opportunity to reflect on their own choices.

I met an octogenarian who declined chemotherapy after caring for his wife who endured recurrent hospitalisation before dying. The same day an elderly woman insisted she would rather “die on the table” than live a life of regrets, as her husband did after he rejected surgery.

One of my most memorable patients was a 90-year-old man who refused an operation because the resulting diarrhoea would involve him negotiating a steep staircase to use the bathroom more frequently. Given the choice of moving out of his beloved home and living longer, he didn’t think twice. I have seldom seen a happier man exit the hospital without a cure.

I also meet overwhelmed patients who relinquish decisions to professionals but, when given the chance (more on this later), most patients will explicitly state what matters to them and make concordant decisions. A long life, necessarily including experiences of sadness and mortality but also inspiration and hope, has given them fortitude, equanimity and perspective. Not everyone wants to live forever, especially if the life is messy.

2. It’s hard on the children

Elderly patients have middle-aged children in the prime of their careers or out of the workforce for important reasons. Apart from tackling a mortgage, navigating workplace tensions and looking after themselves, they are juggling dependent children and vulnerable parents. They are carers, cooks, interpreters and drivers. In a multicultural community the “blessings and curses of filial piety” are on full display, and I worry that I am rarely useful.

Often, there is sibling conflict, usually because one sibling is doing “all the work”. Then there are the expectations of the carer that are hard to meet.

Can I see their parent on their day off? No, the system is inflexible. Can I organise transport? No, there is no funding. Can I avoid issuing last-minute appointments? No, it’s out of my control. Can I expedite aged care services? No, they must join the queue.

I wish the system understood the toll that illness exacts on the whole family.

One of the hardest things is to witness children seeing one parent succumb to cancer, only to repeat the experience. The despair of anticipatory loss is palpable but, if there is one glimmer of hope, it is the benefit of hindsight.

Families who insisted on intensive care at the end of life acknowledge its futility, those who doubted palliative care recall its worth. There is irony in the hope that the next time will be “better”.

3. We must do better

When illness is regarded as an anomaly, the emphasis is on fixing the problem, averting loss and restoring normality.

Every patient deserves optimal care but, when the conversation begins and ends with response rates and survival curves, it is a missed opportunity to respect the whole person, honour their wisdom, longevity and contribution to society and let them contemplate a twilight that contains dignity and comfort.

The power imbalance between doctors and elderly patients is especially pronounced.

I find it confronting to hear these patients lament that they are undertaking onerous surgery or toxic chemotherapy because they don’t have a choice. Some are confounded to learn that they always have a choice, even if doctor and patient agree to disagree. For many people of their generation, advocating for their right to be heard is unthinkable. For those who come from culturally and linguistically diverse backgrounds, this feels impossible.

No doctor who recommends an intervention in good faith wants to hear that a patient feels coerced, so we must choose language that opens the door to shared decision-making and correct the dismal lack of research on the needs of elderly patients. It is an indictment of medicine if the patient who really wants to say no ends up saying yes.

My elderly patient decides against treatment but requests periodic consultation to allow her to change her mind. All things considered, she says her work on Earth is done and she greatly misses her husband. At this, the daughter sheds a tear, but I can already see that this deliberate decision-making is better than what went before.

We won’t cure the patient but we will have honoured the person. A victory for the patient is a victory for medicine.

Complete Article HERE!

And Finally

— Matters of Life and Death review – humility lessons from Henry Marsh

‘Darkly funny and self-lacerating’: Henry Marsh at home in Oxford, June 2022.

The ever candid neurosurgeon reflects on his own mortality, as well as the failings of his profession, in this enthralling third volume of memoirs

By

“I am not a scientist,” says Henry Marsh on the first page of And Finally. “Most neurosurgeons are not neuroscientists – to claim that they all are would be like saying that all plumbers are metallurgists.”

Marsh, who worked as a highly regarded neurosurgeon for more than 40 years, has a penchant for truth-telling, unencumbered by faux modesty. It’s what made his previous books – Do No Harm and Admissions – interrogating a life in medicine, haunted by the “reproachful ghosts” of patients he’d failed, so refreshing and inspiring to read.

This latest autumnal instalment follows in the same vein. Philosophical and scientific conundrums about brain surgery permeate the book: to treat or not to treat patients; how honest to be in giving a prognosis; euthanasia v assisted dying. Along the way the 72-year-old author wrestles with the dilemma of becoming a patient himself.

The memoir’s subtitle and celestial cover design allude to the 1946 Powell and Pressburger film, A Matter of Life and Death. It’s befitting as Marsh reflects on his own mortality after a diagnosis of advanced prostate cancer. He is phlegmatic about his prospects. Sometimes, though, he confesses to paralysing anxiety – a result of his approach towards serious problems that his wife, Kate, calls “therapeutic catastrophising”.

Despite its subject this is not a maudlin book; far from it. Divided into parts like a three-act play, it is often darkly funny, especially in the first act, Denial. Here, Marsh is self-lacerating and also self-forgiving when he reminisces about his medical mistakes. On one occasion he steels himself to admit to a patient that he’d operated on the wrong side of his brain. “Well, I quite understand, Mr Marsh,” the patient answers after a long silence. “I put in fitted kitchens for a living. I once put one in back to front. It’s easily done.”

Marsh is nonetheless fierce on himself throughout the book, as critical as he is of the arrogance of his profession. Now that he’s a patient, he sees clearly how he’s been demoted to an underclass; how some doctors behave as if patients are nothing more than walking pathology; and how they continue to practise medicine under the delusion (once also held by Marsh) that illness only affects patients, not doctors.

Elsewhere, he strikes a sadder personal note, recounting the end of a decades-long friendship with a conscientious Ukrainian neurosurgeon who figured prominently in his earlier memoirs. Working with him in poorly resourced Ukrainian hospitals had left Marsh feeling heroic. But he split from his colleague after discovering he’d been hiding from him a number of cases that had gone terribly wrong, with patients seriously harmed or dying after surgery.

It’s not stated whether Marsh also feels culpable, but certainly he agonises over his professional legacy. That anxiety folds into his nervousness about the future we are bequeathing to our children and grandchildren through inaction over climate change. In one startling passage, he recalls a journey in the Indus delta where he witnessed a catastrophic spectacle: “a flotilla of plastic rubbish … it had neither beginning nor end. It floated past us in complete silence … full of ominous purpose”.

The retired neurologist, who in medical parlance has “hung up his gloves”, has composed a richly discursive book. He charts his ambivalence about undergoing radiotherapy for his cancer, and is especially passionate when advancing the case for assisted dying. He’s scornful of the “dishonest fudge” around the issue that sees doctors accepting the unofficial practice of prescribing large doses of opiate painkillers, as a form of “terminal sedation”.

During Covid, and the cult of death it seemed to spawn, Marsh was animated by the fear his time could run out before he finished making a doll’s house for his granddaughters. Its construction – a mournful metaphor for innocence that a future governed by global warming will deny his grandchildren – is also an act of defiance.

And Finally sounds increasingly ominous about his prostate cancer as the memoir works its way towards a resolution; Marsh is plain-speaking without being dispassionate, almost as if volunteering his own medical history as a case study. Indeed his book reminds me of the mantra – focused on operations – that I first heard at medical school, for doctors embarking on a career in surgery: “see one; do one; teach one”. Henry Marsh may have retired from medicine but let’s hope he keeps producing books as good as this one, which enthral as well as teach.

Complete Article HERE!

Why End-of-Life Conversations Can Be Difficult for Sexual and Gender Minority Patients

Carey Candrian, PhD, helped lead a study to understand how fear and discrimination affects advance care planning.

by Greg Glasgow

Advance care planning — thinking about what kind of care you want and whom you want by your side at the end of your life — can be difficult under any circumstances. But for sexual and gender minority (SGM) patients — including individuals who identify as lesbian, gay, bisexual, asexual, transgender, queer, or intersex — those conversations are often made even more difficult due to stigma, fear, and discrimination.

Carey Candrian, PhD, associate professor of internal medicine at the University of Colorado School of Medicine, is senior author on new research, published in JAMA Network Open, that finds that SGM patients’ experiences of discrimination affect their selection of clinicians and cause concern about whether their end-of-life preferences will be honored.

Candrian and her fellow researchers collected survey data from SGM and non-SGM participants and conducted qualitative telephone interviews with SGM participants across the country, asking them about their end-of-life discussions with clinicians.

“These conversations are hard for everyone, because you’re talking about things like death and dying and serious illness and diagnosis,” Candrian says. “When you add in all these other factors that we know exist for SGM people — less likely to have a traditional family, more likely to have experiences with discrimination or mistrust in the health care system — it makes those conversations even harder. We’re really trying to really understand what is happening and how these conversations impact it.”

Fears of disclosure

Advance care planning discussions can happen at any stage in a patient’s medical journey, not just when they are diagnosed with a serious illness. Doctors may ask the patient’s preferences on care measures such as ventilators, CPR, and artificial feeding, and whom the patient wants to speak or make decisions for them if they are unable to speak for themselves. Those conversations are often difficult for SGM patients who are not in heteronormative, legally recognized relationships or who have not disclosed their sexual or gender preferences to their parents or siblings.

“It can be a double bind — they don’t feel comfortable in the health care system, and they also are not comfortable disclosing it to their family,” Candrian says. “The big tension that we found is, ‘How can I actually have a meaningful conversation if I am so worried about disclosing this core part of myself in terms of who I am, who I need by my side, and what I want?’ How can you ensure they’re getting the care that they need if they can’t disclose this critical information?”

Part of that worry for SGM patients is making such a disclosure part of their medical record, where it can be seen by other doctors if the patient has an accident or needs emergency care out of state. Many survey respondents had experienced discrimination based on their gender or sexual identity in other aspects of health care and were reluctant to share that information in care planning discussions.

Critical conversations

The paper notes that “more SGM-specific patient-centered care might better support these discussions within the health care system,” and that clinician sensitivity training may also help as well. Other paths to more constructive conversations could include indicating support for SGM patients — through a rainbow flag or other means — and changing standard questions from, for example, “Are you married? Do you have kids?” to “Do you have a partner? Do you live with anyone?”

“Several participants had really great ideas on how to improve these processes in terms of how to find forms and how to make them more accessible for people who don’t fit the standard checkboxes,” Candrian says. “We need to collect this information in a way that doesn’t perpetuate discrimination, but actually opens the door to having a really critical conversation with SGM people.”

The study data were collected between October 2020 and March 2021, and the authors note that in the wake of the Supreme Court’s decision that overturned Roe v. Wade and concerns about the future of the legal status of same-sex marriage in the U.S., the fears and concerns expressed by SGM participants about advance care planning may be more pronounced now and in the future.

“Now, perhaps more than ever, we need to bring more voices into the conversation around advance care planning than have been included before,” says lead and corresponding author Amanda Reich, PhD, MPH, an investigator at the Center for Surgery and Public Health at Brigham and Women’s Hospital in Massachusetts. “Clinicians have the opportunity to re-open how we talk about end-of-life care to be more inclusive and to understand why our patients may be fearful or hesitant to have these critical and deeply personal conversations.”

Complete Article HERE!

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.

________________________________________

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

Complete Article HERE!