Samuel LeBaron, MD, PhD, is a family medicine specialist and Stanford Medicine professor emeritus who now faces the situation he guided patients through during his career: navigating terminal lung cancer. In his memoir, Ordinary Deaths, published in July, LeBaron weaves personal stories with vignettes that illuminate the patients whose lives he’s witnessed.
Throughout his career as a family medicine doctor, hospice care provider and technician in a medical examiner’s office, LeBaron jotted down stories of his patients, intent to one day share them with his inquisitive children who asked what he did every day. He chose his words carefully, creating a repository of clinical experience, much of it from a time before hospice existed.
I asked LeBaron to share more about his career and the stories he’s said were a salve in coming to terms with his own mortality.
You’ve talked about how you saw death as a child. What does that mean?
Up until about 5 years old, children have not yet adopted the notion of cause and effect. By the time we’re in the third or fourth grade, we’ve learned we live in a world of rules. So we think the way we live our lives determines how our lives end. One might think that a happy person would feel a bigger loss when they’re facing death. That seems logical. But I’ve personally experienced the opposite. I think of it as a phrase: “I could die happy now.” If we have time to accept our death as the end of a happy life, we’re much more ready to accept it.
The title describes death as “ordinary.” How can death bring meaning to our everyday lives?
The book title was partly ironic because every death I witnessed was extraordinary. On the other hand, they are ordinary deaths in the sense that this happens to everyone in some form or another. Put another way, there is really nothing extraordinary about waves. They just wash up and down the shore, but we love them all the same. And they may help create an extraordinary experience. We may go to the ocean to shed our tears and feel a little bit of comfort from that gentle, constant roll in and out. Our deaths are similar in that way: ordinary and extraordinary at the same time.
What guidance can you share with doctors offering end-of-life care? What have you done for patients in their last hours that you think made the biggest difference to them?
What loosens the tongue faster than anything is a safe, sympathetic environment. There are two basic prompts you need to know: Tell me about yourself and tell me more. Ask questions. Invite the exploration of the question and give a response to let them know they’ve been heard: “I can imagine that was very difficult. I really appreciate you letting me into that story.”
It helps the patient feel heard and valued.
The great tragedy is that for the most part, American physicians — the sweetest, most jolly, most interesting people you could want to meet — are on a treadmill, often seeing too many patients to have time for deeper connection.
What value does writing bring to your life, especially as you face your own illness?
Writing is incredibly meaningful in my life. When I was 14, I found it difficult to communicate the way I wanted. I went from a gregarious, playful kid to a reticent teenager.
I also became distant with my brother. But then something quite remarkable happened: We began to write little stories and sometimes letters to each other. They were all about adventure; some of them were entirely fiction, all of them outrageous, and they entertained us and made us laugh. There were times when we would stay up all night, doing nothing but writing stories. It was so much fun, and it drove my parents crazy.
And then, in my 40s, it occurred to me that all the knowledge gleaned from my patients could disappear if I didn’t write any of it down. Since then, it’s been a process of reintegration after feeling like a bomb went off in my house when I learned of my diagnosis.
My wish is that these stories and lessons be used as a guide — to show people how to be present and supportive, how to let people know you hear them and help them get what they need.
Before he met Charles Koehler—and before he married a woman, got divorced, and came out—Dennis Hostetler was a college student who needed money. In the summer of 1962 he began working in the W.R. Grace mine, cleaning the tools used to drag vermiculite ore out of the ground. The shiny, flaky mineral would be refined at the plant, and when heated, it would balloon into puffs that could insulate buildings. Libby, a town in northwest Montana, was a beautiful place, but Hostetler had bigger ambitions, so he took the $1,443.72 he’d made and got the hell out.
But pieces of Libby stayed with Hostetler, buried deep in the outer lining of his lungs. He unwittingly carried toxic mineral fibers from the mine to college in Missoula, to the Peace Corps in Tunisia, to Paris’ Left Bank, and to St. Louis, where one day, at age 67, he discovered he was dying. After experiencing fatigue, chest pain, and shortness of breath, Hostetler was diagnosed with mesothelioma, a deadly cancer probably caused by inhaling asbestos that tainted the vermiculite he mined. In 2009, a year after Hostetler’s diagnosis, the Environmental Protection Agency declared a public health emergency in Libby and initiated a massive cleanup effort that’s still ongoing. Hostetler had no illusions about what came next—he needed to put his affairs in order.
Death is an inevitable fact of life that most people prefer not to discuss. According to a 2012 survey by the California Health Care Foundation, 60% of Californians said that when they die, it’s very important to them not to burden their families with tough decisions. Despite that, more than half of the respondents hadn’t communicated their end-of-life plans with the people they wanted making decisions for them. Some were too busy with other things to think about it; others said thinking about dying made them uncomfortable. But having those conversations can make the experience better for the person dying. There’s less regret about what might have gone unsaid, and less anxiety and confusion for caregivers because they know their loved one’s wishes. Numerous studies have linked conversations about death to better, more peaceful deaths.
For members of the LGBTQ community, dying without the legal protections of a living will or power of attorney could mean spending their final days without the support of the people who love them. A 2010 study by the National Gay and Lesbian Task Force Policy Institute found that LGBTQ elders are twice as likely to live alone and four times less likely to have children than their straight counterparts. That means their caregivers are often friends, exes, or chosen family who aren’t always recognized by the medical and legal systems. “There’s no automatic protection in place to make sure that someone can choose the person that’s going to be making their [end-of-life] decisions,” says Kimberly Acquaviva, a professor of nursing at the University of Virginia who specializes in palliative and end-of-life care. “You have to put those things in writing.” Before same-sex marriage was legal, there were horror stories about families swooping in and making medical decisions that didn’t accord with people’s wishes. “Those things still happen,” she says.
Charles Koehler holding a photo of Dennis Hostetler at age 68.
A Better Way to Die
Hostetler met his partner, Charles Koehler, in 1984. While the two could never have prepared for how their relationship unfolded over the next two decades, they always had a plan for death. Before Koehler met Hostetler, he’d read the 1969 bestselling book Everything You Always Wanted to Know About Sex* (*But Were Afraid to Ask) and decided it would be better if he wasn’t gay. The book told him gay people led awful lives, an idea affirmed in an abnormal psychology class where he learned that homosexuality was in the Diagnostic and Statistical Manual of Mental Disorders.
If homosexuality was classified as a mental illness, then Koehler reasoned that it too must be a diagnosable disorder. But then Koehler actually met some gay men and realized their lives were just as varied as anyone else’s. Even then, it took years for Koehler to accept himself; when he did come out at age 27, he thought his life would remain solitary. “I had no idea what was possible,” he says. “I assumed that I would be basically closeted.” Both Koehler and Hostetler were hesitant when they met. Hostetler, who was older by a decade, had two daughters he still wasn’t out to. When Koehler moved in, Hostetler told the girls he was just renting a room. But in time they came out to Hostetler’s daughters and ex-wife.
When two of their lesbian friends asked them if they’d consider donating sperm so they could have children, both men obliged. At first the men agreed to just be “uncles” to the children, but eventually the moms wanted the boys to know who their fathers were. “We had to do DNA testing to find out who was whose,” says Koehler. “The boys were really excited for about five minutes and then they wanted to go outside and play games.” Koehler began volunteering in a program that provided support buddies to men living with HIV and AIDS. He watched a man die and then watched the man’s partner get thrown out of the home they shared. Though the house was owned by the man who died, there was no will to ensure his partner could keep it. “The family came in, took everything, kicked the kid out on the street,” Koehler says.
Afterward, Koehler and Hostetler—who were both healthy at the time—drew up documents specifying what should happen to their assets in case of death. Now, there are academics and organizations helping LGBTQ people make clear, concrete plans for death. In doing so, they’re modeling a better way to prepare for, think about, and embrace death. Sherrill Wayland, who directs operations at the National Resource Center on LGBTQ+ Aging, saw many of their older friends struggle to get the care and support they needed at the end of their lives. “It was really personal for me,” they say. “No one should die alone if they want support.” In their role, Wayland has helped create a series of guides to help LGBTQ people plan for serious illness and caregiving.
Sage USA, an advocacy organization for LGBTQ elders, is also pushing for cultural competency training in long-term care facilities. Compassion & Choices, a group that champions the importance of end-of-life planning, has LGBTQ-focused programs like Pride in a Box, which encourages people to take time during Pride Month to talk about how they want to die. These conversations can seem at once ghoulish and mundane: Do you want to be cremated or buried? Do you desire an open- or closed-casket funeral? What clothes would you like to be buried in? What pronouns should appear in your obituary? “LGBTQ people have realized that if we don’t make a plan, things are probably going to go sideways because other people won’t be looking out for us,” says Acquaviva, who helped develop an LGBTQ-inclusive curriculum for The Conversation Project, an organization that helps people discuss their end-of-life plans. “We have to figure out ways to look out for ourselves.”
Charles with son Spencer, age 28.
Because Hostetler had an amalgamation of chosen and genetic family members, he wanted to make sure everyone was on the same page. He organized his will and called his daughters, his ex-wife, the sons, and their mothers. Hostetler was adamant that he wanted to die at home, so he arranged for hospice care. Instead of hiding his identity, Hostetler informed his health care providers that he was gay and that Koehler was his life partner and caregiver. Koehler says that without exception, every single person was supportive and respectful of their relationship.
In the final two weeks of Hostetler’s life, a hospice nurse suggested setting up his bed in the living room so he wouldn’t be alone. His eldest daughter and her family moved in and traded shifts with Koehler and a hospice nurse. His nurses provided massage and music therapy to make him more comfortable. Hostetler was sedated, hovering at the edge of their everyday routines. Finally, on New Year’s Eve 2010, his daughters and his life partner surrounded his bed and held hands as he took his last breaths. Koehler checked his pulse and said, “I think he’s gone.” Koehler describes the whole experience as peaceful. Having months to accept that Hostetler would die helped make the process less traumatizing for everyone.
Left: Charles (left), age 45, with Dennis (right), age 55, holding their sons Connor (left), age 2, and Spencer (right), age 4, on Christmas 1997. Center: Charles, age 45, with Dennis, age 55. Right: Jocelyn, Dennis’ daughter from a previous 12-year marriage, with her children.
“In a strange way it was both sad and yet somehow comforting at the same time knowing that he died being surrounded by us at his home, just as he wished,” Koehler says. But not all LGBTQ patients receive such affirming care: A 2020 survey published in the Journal of Palliative Medicine found that nearly one-quarter of health care providers witnessed discrimination against LGBTQ patients in palliative care settings and nearly 30% of the respondents reported witnessing discrimination against LGBTQ spouses, partners, or people whom the patient had legally designated to make care decisions for them.
Preparing for the Inevitable End
Experts like Acquaviva and Wayland say that health providers need to take time to understand the barriers that create health inequities in the LGBTQ community and undergo cultural competency training to avoid making the same mistakes. Because LGBTQ families are more likely to be families of choice, providers need to be sensitive to those dynamics and spend time learning who is part of a patient’s support system instead of automatically deferring to genetic family members. There are also simple ways to acknowledge the range of human gender and sexual identities, such as including nongendered pronouns on forms, asking for patients’ pronouns and using them correctly, and including LGBTQ-affirming language in nondiscrimination clauses.
Those steps may seem like small gestures, but they’re important signals. If an organization doesn’t commit to doing something as minimal as adding inclusive language to a statement, says Acquaviva, then it’s reasonable to expect that they won’t treat a patient with the dignity they deserve. Acquaviva has both written about and experienced this discrimination: She and her wife talked extensively about their plans when her wife was diagnosed with ovarian cancer in 2019 and ultimately decided to use hospice care to help her die comfortably. But then they discovered that none of the hospice services near their Virginia home included LGBTQ-affirming language in their nondiscrimination statements. Despite the fact that both women were experts in end-of-life care, they faced death without the support of hospice because they felt they wouldn’t receive respectful care. Acquaviva was the one managing her wife’s pain meds, bathing her, and making sure she didn’t get bed sores.
Charles shares drinks with members of his local PrimeTimers social group, of which he was founding president, on the back patio of Just John Night Club in St. Louis, Missouri.
There’s no single definition of a good death. Not everyone knows when their death is coming and not every death can follow a specific plan, but every death can be expected and discussed ahead of time. “We all want to imagine we’re gonna live a really long time, and it’s human nature to imagine that everything’s gonna be OK, but the reality is 100% of us are going to die,” Acquaviva says. Have the conversation—even if it’s awkward, uncomfortable, and hard.
Now, more than a decade later, Koehler remains an active retiree. He’s single but he isn’t alone. He’s the vice president of PrimeTimers Worldwide, a large social group for older gay, bisexual, and transgender men. On Sundays he catches up with Hostetler’s daughters and their mom over Zoom, and when the younger daughter needed surgery, he helped with child care. “Having grandkids is something that I never dreamed of as even a remote possibility,” he says. “It never even crossed my mind at all.” His documents are in order and he encourages his peers to make end-of-life plans. But while he’s still here, he’s keeping busy, tending to the life and family he and Hostetler built together.
— Perspectives on caring for loved ones during end-of-life
By Lora Parisien
Every day, hospice workers bring comfort to dying patients so that they may die with dignity and on their own terms. They extend grace and compassion to all, regardless of who they are or where they come from. This is the humble work of a Hospice of Michigan employee. This is the promise they keep: Every Person. Every Time.
But what happens when the hospice worker’s patient is a family member? Does having a hospice background make it easier to navigate the challenges of caring for a terminally ill patient when that patient is a loved one?
When she was just 10 years old, curiosity drew Sarah Beegen to the room in her family’s home where hospice staff were attending to her dying grandmother. “I wanted to know. I needed to know what was going on in there,” said Beegen. This same inquisitiveness led her to a career with Hospice of Michigan, where for the past 17 years, she worked her way from certified nurse assistant to her current role as manager of the not-for-profit’s referral center.
If anyone was fully prepared to care for a dying family member or insulated from the hardest aspects of death, certainly Beegen was. When her mother’s cancer became incurable, she “shut off my ‘hospice eyes’ and focused on other things. I didn’t want to see that mom was dying.”
The truth is, no amount of training or experience can prepare one for the death of a loved one — because dying is more than a medical event, it’s a deeply personal experience.
Hospice workers understand that both patients and their family members can struggle accepting life-limiting diagnoses. In 1969, Elizabeth Kubler Ross, a Swiss-American psychiatrist and pioneer in the worldwide hospice movement, identified five stages of grief. When faced with imminent death, denial, the first of the five stages, is a common reaction to change and loss. No amount of hospice training can derail feelings of grief. Denial is the defense against something that is impossible to accept.
“No matter how seasoned you are, you can never be prepared when the patient is your loved one,” says Beegen.
Tracey Pierce, director of marketing and communications for Hospice of Michigan, also found herself in unexpected territory when she reached out to her colleagues for help. In a matter of months, her mother- and father-in-law suffered falls, hospitalizations, and anxiety which led to a drastic decline in their health.
“It’s a different ballgame when you are on the other side. For as much as I thought I knew about hospice care, I realized how much I didn’t know. I’m grateful we had my work family to lean on. Hearing the stress in my voice, they calmly answered our questions and addressed our concerns with compassion and patience,” said Pierce.
That is the gift of hospice, a team of experts sweeps in and surrounds patients and families — and sometimes colleagues — with knowledge, skill, and compassion, providing wide-ranging physical, emotional, and spiritual support at a crucial time.
Beegen and Pierce both knew they needed help from the experts, the people she worked with every day. “If I learned one thing from my mother’s death, it’s not to be afraid to ask for help,” said Beegen.
“We always talk about providing care and dignity in hospice. It was evident in simple, nurturing acts, such as a hospice aide bathing my mother-in-law,” shares Pierce. That gave Pierce and her family the opportunity to focus on being present in all the precious moments they had left.
Redefining what was and shifting to what is now. Searching for meaning. Contending with change. Living day by day. Preparing for death. These are the hallmarks of coping with the terminal illness of a loved one. It is a highly personal experience, no matter who you are. Though it can be daunting, no one should face the end-of-life process alone.
There are two schools of thought among clinicians at end of life: aggressive care, which focuses on treating the illness or condition, and supportive care, which focuses on pain and symptom management.
In this publication, researchers demonstrated how the term aggressive care — used loosely by clinicians to describe care that can negatively impact quality of life for patients with serious illness — is often used to inappropriately label the preferences of African American patients.
“Our motivation through this article was to bring in not only the perspectives of African American Christians, but also to share the biblical and historical backdrop that can be instrumental in shaping their serious illness and end-of-life wishes,” said Shena Gazaway, Ph.D., assistant professor in the UAB School of Nursing and lead author of the study. “In collaboration with our wonderful medical colleagues, we wanted to acknowledge the origins of aggression and discuss how the labeling of care as aggressive with patients and their families can negatively impact care conversations.”
For patients with serious illness such as advanced cancer, dementia and terminal illnesses, the term aggressive care is used to describe courses of treatment that could potentially cause increased physical distress and psychological stress and a decreased likelihood of experiencing a “good death.” The Institute of Medicine defines a good death as “one that is free from avoidable death and suffering for patients, families and caregivers in general accordance with the patients’ and families’ wishes.”
“The data is clear — a larger proportion of African American families reported that their loved one did not receive care that is in accord with what they requested in the final days of their life,” said Ronit Elk, Ph.D., associate director for the UAB Center for Palliative and Supportive Care, and professor in the UAB Division of Geriatrics, Gerontology and Palliative Care and co-author. “We hope this article provides a careful explanation of why these values are so important to the African American Christian community and will strike a chord in many clinicians about the importance of respecting these values and not dismissing the beliefs that these patients and their families about hope and the miracles of God.”
In this article, researchers discuss how many Black Christian adults share a belief in miracles that shapes their end-of-life care decisions. The article states that this belief in miracles combined with an overall distrust in the health care system — due to a history of medical experimentation and centuries of health care disparities — have led many African Americans to depend on their belief in God’s healing power to perform miracles and heal family members who are seriously ill.
The UAB Center for Palliative and Supportive Care offers the African American Communities Speak program to clinicians. This skills-based training incorporates videos created by the African American community to train clinicians on the community’s cultural values, lived experiences and recommendations for care. Self-reflection and active learning techniques provide participants the foundation needed for changed behavior and improved communication with patients and caregivers.
This trust in God, belief in miracles and distrust of clinicians may lead to a seriously ill African American Christian patient to request life-sustaining medical interventions even when recommendations call for supportive care. When facing terminal illness, this hope in miracles often influences the patient’s medical decisions and fuels a desire for life-sustaining interventions. The paper states that these decisions are also rooted in a belief that God ultimately decides the outcome of life, not the health care system.
Researchers say the key to goal-concordant care is for clinicians to allow these patients to process clinical information through their preferred spiritual lens and to allow them time to have critical conversations with those in their network.
“We are hopeful that clinicians will read this article and take away the importance of religious and cultural belief systems in this particular patient population,” said Moneka Thompson, staff chaplain in the Department of Pastoral Care and co-author. “Specifically, we want everyone to understand how the values and beliefs of this particular population may impact their end-of-life preferences and decision-making. This article is the combined effort of five very different women from quite different backgrounds. Our collective goal was to create a think-piece towards movement of health care for this population in a meaningful and more equitable direction. At the end of the day, we want to support health care equity as much as possible.”
Thompson says that there are a few steps clinicians can take to help ensure they are providing goal-concordant care to their patients.
“First, we encourage clinicians to be aware of their own biases towards this patient population that may fuel incongruent care,” Thompson said. “Second, we hope that clinicians will utilize communication practices that encourage cultural sensitivity, humility and curiosity. Finally, we want clinicians to be fully present to the variety of religious and cultural beliefs that this population will present without feeling the need to obtain this value system for themselves or compromise their own.”
Nancy Simmers is a death doula whose clients decide to end their lives by refusing food and drink.
A former labor-and-delivery nurse, Simmers says the process of death is similar to birth.
This is Simmers’ story, as told to Jane Ridley.
This as-told-to essay is based on a conversation with Nancy Simmers. It has been edited for length and clarity.
Most people are taken aback when they hear that I’m a death doula. They’re shocked when I say that I work exclusively with people who want to die on their own terms, by voluntarily stopping eating and drinking.
The method, known as VSED, might seem terrible at first. But it lets you take control of the circumstances of your death.
Most people support the idea of the power of the individual. They understand someone who says, “It’s my life, let me get on with it.” But they feel uncomfortable when someone says the same thing about their death.
I used to be a labor-and-delivery nurse. Over the years, I’ve come to see death and birth as physical, emotional, and spiritual thresholds. They are similar processes. They involve uncertainty, fear of the unknown, and transformation. Both require courage, surrender, release, compassion, and support from others.
Some people reach a point in their life and decide they’re done
The US law largely doesn’t prevent people from choosing to end their life by VSED, which doesn’t require permission from a physician.
Many people who opt for VSED have a terminal illness. But it’s almost impossible to get a firm prognosis for neurological diseases such as ALS and Parkinson’s. People can suffer for years as their bodies and mental capacities deteriorate. Some people reach a certain point and say, “I’m done.” A person in their 90s who has lost their vision, hearing, and bladder control may feel that their quality of life is nil.
Nancy Simmers, a death doula, helps people who opt to stop eating and drinking, a method of death known as VSED.
If a doctor won’t certify that you have less than six months to live, you are not eligible for “death with dignity.” The laws — which apply in eight states and Washington, DC — allow people to take lethal drugs under medical supervision.
VSED is another version of death with dignity. Each VSED death I’ve attended has been different, but not undignified. Most of my clients die in their own homes surrounded by their loved ones. It’s a gift. It wasn’t VSED, but when my father was dying of cancer in 1991, my sons — 8 and 5 — were in and out of their grandpa’s room. It doesn’t do anybody any favors to be frightened of death.
VSED requires a lot of planning
A lot of people know nothing — or very little —about VSED. There are some scary myths. People think that it involves great suffering and that it goes on indefinitely. They assume it will affect your life-insurance policy.
VSED is not to be considered lightly. It needs lots of careful planning. It’s reversible up to a point, and there are medications to ease the transition. Family members usually know about the decision and agree that it’s the choice of the individual concerned. Life insurance is mostly straightforward because the doctor does not write “suicide” as the cause of death; they note the person’s underlying condition, such as cancer.
Simmers set up an altar to celebrate the life of a woman who chose VSED.
People considering VSED in my home county of Whatcom, Washington, find me via word of mouth or online. I’ll arrange to meet with them and their family. My partner, Andrea Fenwick, and I give frank and honest answers. There’s no sugarcoating. We’re part of the nonprofit VSED Resources Northwest, though we advise people across the world.
We can understand why families question their loved one’s decisions. It depends on the case, but we might tell them: “This is your beloved person, and your beloved person is suffering. It’s their body and their choice.”
We’ll tell the family, “Although you will suffer because you’ll miss this person, it’s their choice to end their suffering — how can you be supportive of this choice?”
Once things are decided, we mark the start date with a little ceremony. We celebrate the person and their life and their choice. We thank them and shower them with love and gratitude.
Many families make a small altar. It’s the focal point of their room. They’ll decorate it with family photos and precious items that remind the loved one and their visitors about their interests and skills. It’s a reflection of a life well lived.
I like to light a candle, symbolizing the person as a spirit. After the death, it becomes part of a leave-taking ceremony and is blown out.
VSED is a serious commitment, but it doesn’t have to be a solemn affair. My last client lightened things up with a touch of humor. We’d ask how she was feeling during her first few days of VSED — she joked about wanting a cold Pepsi.
I tell my folks that dying has been around for millions of years. Your body knows what to do. Just trust your body. Our bodies know how to breathe. Our bodies know how to process food. Our bodies know how to birth. They know how to die.
It can be hard for families to watch as their loved one becomes confused because of dehydration
VSED takes an average of nine to 11 days. The person is usually up and about for the first few days. But the middle stage, which can last almost a week, is the marathon.
They’ll need medication — a mixture of morphine and anxiety drugs — to help them through the confusion and delirium caused by dehydration. It’s hard for the family to watch. A designated person will step in if the loved one calls for food or water.
The final stage lasts about three days. Dehydration makes people sleepy. It’s reassuring for everyone because you lose consciousness when your body goes into crisis mode.
The lack of fluids affects your kidneys and liver. The excess bilirubin makes the skin look yellow. The feet and the fingertips turn blue. Breathing becomes shallow or agonal.
Friends and relatives gather at the bedside to say goodbye. It reminds me of families coming together to welcome a newborn. We want the very best for the baby; we support them when their journey in life begins. People deserve the same support when the journey ends.
Whenever Eric Karl Oermann has to tell a patient about a terrible prognosis, their first question is always: “how long do I have?” Oermann would like to offer a precise answer, to provide some certainty and help guide treatment. But although he’s one of the country’s foremost experts in medical artificial intelligence, Oermann is still dependent on a computer algorithm that’s often wrong.
Doctors are notoriously terrible at guessing how long their patients will live.
Artificial intelligence, now often called deep learning or neural networks, has radically transformed language and image processing. It’s allowed computers to play chess better than the world’s grand masters and outwit the best Jeopardy players. But it still can’t precisely tell a doctor how long a patient has left – or how to help that person live longer.
Someday, researchers predict, computers will be able to watch a video of a patient to determine their health status. Doctors will no longer have to spend hours inputting data into medical records. And computers will do a better job than specialists at identifying tiny tumors, impending crises, and, yes, figuring out how long the patient has to live. Oermann, a neurosurgeon at Mount Sinai, says all that technology will allow doctors to spend more time doing what they do best: talking with their patients. “I want to see more deep learning and computers in a clinical setting,” he says, “so there can be more human interaction.” But those days are still at least three to five years off, Oermann and other researchers say.
Doctors are notoriously terrible at guessing how long their patients will live, says Nigam Shah, an associate professor at Stanford University and assistant director of the school’s Center for Biomedical Informatics Research. Doctors don’t want to believe that their patient – whom they’ve come to like – will die. “Doctors over-estimate survival many-fold,” Shah says. “How do you go into work, in say, oncology, and not be delusionally optimistic? You have to be.”
But patients near the end of life will get better treatment – and even live longer – if they are overseen by hospice or palliative care, research shows. So, instead of relying on human bias to select those whose lives are nearing their end, Shah and his colleagues showed that they could use a deep learning algorithm based on medical records to flag incoming patients with a life expectancy of three months to a year. They use that data to indicate who might need palliative care. Then, the palliative care team can reach out to treating physicians proactively, instead of relying on their referrals or taking the time to read extensive medical charts.
But, although the system works well, Shah isn’t yet sure if such indicators actually get the appropriate patients into palliative care. He’s recently partnered with a palliative care doctor to run a gold-standard clinical trial to test whether patients who are flagged by this algorithm are indeed a better match for palliative care.
“What is effective from a health system perspective might not be effective from a treating physician’s perspective and might not be effective from the patient’s perspective,” Shah notes. “I don’t have a good way to guess everybody’s reaction without actually studying it.” Whether palliative care is appropriate, for instance, depends on more than just the patient’s health status. “If the patient’s not ready, the family’s not ready and the doctor’s not ready, then you’re just banging your head against the wall,” Shah says. “Given limited capacity, it’s a waste of resources” to put that person in palliative care.
The algorithm isn’t perfect, but “on balance, it leads to better decisions more often.”
Alexander Smith and Sei Lee, both palliative care doctors, work together at the University of California, San Francisco, to develop predictions for patients who come to the hospital with a complicated prognosis or a history of decline. Their algorithm, they say, helps decide if this patient’s problems – which might include diabetes, heart disease, a slow-growing cancer, and memory issues – make them eligible for hospice. The algorithm isn’t perfect, they both agree, but “on balance, it leads to better decisions more often,” Smith says.
Bethany Percha, an assistant professor at Mount Sinai, says that an algorithm may tell doctors that their patient is trending downward, but it doesn’t do anything to change that trajectory. “Even if you can predict something, what can you do about it?” Algorithms may be able to offer treatment suggestions – but not what specific actions will alter a patient’s future, says Percha, also the chief technology officer of Precise Health Enterprise, a product development group within Mount Sinai. And the algorithms remain challenging to develop. Electronic medical records may be great at her hospital, but if the patient dies at a different one, her system won’t know. If she wants to be certain a patient has died, she has to merge social security records of death with her system’s medical records – a time-consuming and cumbersome process.
An algorithm that learns from biased data will be biased, Shah says. Patients who are poor or African American historically have had worse health outcomes. If researchers train an algorithm on data that includes those biases, they get baked into the algorithms, which can then lead to a self-fulfilling prophesy. Smith and Lee say they’ve taken race out of their algorithms to avoid this bias.
Age is even trickier. There’s no question that someone’s risk of illness and death goes up with age. But an 85-year-old who breaks a hip running a marathon should probably be treated very differently than an 85-year-old who breaks a hip trying to get out of a chair in a dementia care unit. That’s why the doctor can never be taken out of the equation, Shah says. Human judgment will always be required in medical care and an algorithm should never be followed blindly, he says.
Experts say that the flaws in artificial intelligence algorithms shouldn’t prevent people from using them – carefully.
Researchers are also concerned that their algorithms will be used to ration care, or that insurance companies will use their data to justify a rate increase. If an algorithm predicts a patient is going to end up back in the hospital soon, “who’s benefitting from knowing a patient is going to be readmitted? Probably the insurance company,” Percha says.
Still, Percha and others say, the flaws in artificial intelligence algorithms shouldn’t prevent people from using them – carefully. “These are new and exciting tools that have a lot of potential uses. We need to be conscious about how to use them going forward, but it doesn’t mean we shouldn’t go down this road,” she says. “I think the potential benefits outweigh the risks, especially because we’ve barely scratched the surface of what big data can do right now.”
Black Americans are at greater risk for serious illnesses like dementia and kidney failure, but they’re less likely to receive the kinds of care that can make living and dying with these diseases less painful.
By Leslie Walker, Dan Gorenstein
The four months of care Annie Mae Bullock received for her stage 4 lung cancer were rocky at best. But the final three days of that care, her daughter Karen Bullock said, were excellent.
Annie Mae spent those few days in hospice care at home surrounded by loved ones singing, chanting and praying as she passed.
“We did all of the things we knew she would have wanted us to do,” Karen Bullock said. “And we didn’t have to worry about whether we were being judged.”
That was one of the few times during those hard four months that Bullock and her family hadn’t felt judged. They felt judged when Annie Mae initially declined chemotherapy and later on, when she asked why she needed a legal document outlining her end-of-life wishes.
Bullock is grateful that her mother had those days at home in hospice. She knows many Black families don’t get them.
But Black patients, who are at greater risk for many serious illnesses, are less likely to receive these supports than White patients. For example, just 35 percent of Black seniors eligible for hospice care through Medicare actually receive it, compared to 50 percent of White Medicare beneficiaries.
A lonely road
This is a world Bullock has personal and professional experience navigating. She is a licensed clinical social worker and professor at the Boston College School of Social Work. And for the last two decades, Bullock has been studying why seriously ill Black patients – with incurable conditions like cancer or kidney failure – are less likely to get palliative care, and what it would take to change that.
“In retrospect, seeing that my mother could actually die well is what set me on this journey,” Bullock said.
She has struggled to find funding for her work, told repeatedly to focus on other topics or use data sets that already exist.
“But the large data sets don’t answer the questions that have not yet been asked,” Bullock said.
Through two decades of persistence amassing small studies and focus groups, and the work of others, Bullock has identified some of the barriers. The two biggest, she said, are the failure of the U.S. health care system to build trust with Black families and a lack of culturally competent care.
A system that can’t be trusted in life or in death
America’s legacy of racism runs deep throughout its health care system, shaping the care Black patients receive and the medical decisions they make – including at the end of life, according to Bullock.
“It’s difficult to convince someone that there is a team of people who want you to die well, when nobody cared if you lived well,” Bullock said.
Racial bias still exists in health care today. Nearly 1 in 3 Black adults in a recent survey said they had been treated poorly by a health care provider because of their race or ethnicity. More than 20 studies document that seriously ill Black patients are less likely to have their pain properly treated, diagnosed or managed.
Bullock said it is a rational decision for people to reject services from a system that has not proven trustworthy.
A culturally incongruent model of care
Bullock has focused a lot of her work on hospice – the kind of end-of-life care that benefitted her own mom. It often happens at home and is free of aggressive intervention.
But after studying the care experiences of more than 1,000 older Black adults and caregivers, Bullock came to the conclusion that certain aspects of the hospice care philosophy, which originated in Europe, are what she calls culturally incongruent.
“This is a European model of care that many White people find to be extremely helpful in dying a good death and having their needs met until the end,” Bullock said.
But she points to the spiritual care component of hospice as one common source of incompatibility. Surveys show spirituality plays a much larger role in the lives of Black families, but White hospice workers may not be familiar with those religious traditions and beliefs.
The least ideal time to explain your cultural preferences, said Bullock, is when you are sick or dying.
“When a patient and or family member has to educate you about their culture while they are receiving care, the message you’re sending is, ‘I don’t know anything about you. I haven’t learned to take care of you,’” she said.
A path toward more equitable care for the seriously ill
For years, experts have been calling for greater equity in care for the seriously ill and dying, but the COVID-19 pandemic has brought renewed attention to the issue.
Additional attempts to reduce racial disparities include programs that engage Black churches to reach more patients and those that offer more culturally tailored palliative care. More research is needed to evaluate the effectiveness and scalability of these and other interventions.
Bullock acknowledged working on health care equity can sometimes feel like shouting into a void. On especially hard days she returns to the memory of her mother’s final moments.
As Annie Mae appeared to lose consciousness, Bullock’s family wondered if they should continue their praying and singing and chanting.
It was the hospice social worker who explained the hospice philosophy that hearing is the last sense to go, and gave them a piece of advice Bullock will never forget.
“Continue to say the things you want to say,” the worker urged the Bullock family. “She can hear you even if she can’t respond.”
