Race, ethnicity and socioeconomic status are the leading differentiating factors fueling disparities in hospice utilization. Recent research reflects mounting concerns about inequitable access to hospice and palliative care across the United States.
Researchers from the John Hopkins University School of Nursing in Baltimore examined March 2020 data from three national health care databases that outlined disparities in hospice and palliative care. Of the studies the researchers assessed across the PubMed, Embase and CINAHL EBSCO databases, 70% described differences in access outcomes to hospice and palliative care by ethnicity, race or socioeconomic status.
According to authors of a 2021 American Journal of Hospice and Palliative Medicine research article, “there is growing evidence of disparities in access to hospice and palliative care services to varying degrees by sociodemographic groups.”
Studies have shown that demographic disparities can limit the scale of hospice. Roughly 82% of Medicare decedents in 2018 were Caucasian, according to the National Hospice & Palliative Care Organization (NHPCO). Comparatively, slightly more than 8% were African-American; 6.7% were Hispanic, and 1.8% were Asian. That year, only 0.4% of Medicare decedents were Native American.
Hospice providers have increasingly strategized to improve access to end-of-life care among these historically underserved populations, seeking to bridge racial divides to hospice and palliative care. Addressing demographic disparities in hospice utilization can ensure more patients receive quality care at the end-of-life, as well as open untapped markets to hospice providers.
According to the study authors, a main objective was to highlight the range of sociodemographic groups affected by inequitable hospice and palliative care access. The research examined disparities across five domains of access, with 60% of studies emphasizing acceptability, affordability and appropriateness as primary barrier points. Other domains included approachability and availability of these services.
Other data included in the body of research found disparate access based on variables such as age, gender and geographic location, such as remote rural areas.
An objective of the study was to outline implications for future research, policy and clinical practices that would improve access for underserved communities.
Underlying factors contributing to disparity issues have received little systematic attention, according to the authors, who indicated that public policy initiatives will be needed to bridge these divides..
“This integrative review highlights the need to consider various stakeholder perspectives and attitudes at the individual, provider, and system levels going forward,” said the study’s authors. “[And] to target and address access issues spanning all domains.”
It is hard to know how much my patient, caught in an eternal childhood, understood about his cancer.
By Mikkael A. Sekeres, M.D.
When I first met my patient, three years ago, he was about my age chronologically, but caught in an eternal childhood intellectually.
It may have been something he was born with, or an injury at birth that deprived his brain of oxygen for too long — I could never find out. But the man staring at me from the hospital bed would have been an apt playmate for my young son back home.
“How are you doing today, sir?” he asked as soon as I walked into his room. He was in his hospital gown, had thick glasses, and wore a necklace with a silver pendant around his neck. So polite. His mother, who sat by his bedside in a chair and had cared for him for almost half a century, had raised him alone, and raised him right.
We had just confirmed he had cancer and needed to start treatment urgently. I tried to assess what he understood about his diagnosis.
“Do you know why you’re here?” I asked him.
He smiled broadly, looking around the room. “Because I’m sick,” he answered. Of course. People go to hospitals when they’re ill.
I smiled back at him. “That’s absolutely right. Do you have any idea what sickness you have?”
Uncertainty descended over his face and he glanced quickly over to his mother.
“We were told he has leukemia,” she said. She held a pen that was poised over a lined notebook on which she had already written the word leukemia at the top of the page; I would see that notebook fill with questions and answers over the subsequent times they would visit the clinic. “What exactly is that?” she asked.
I described how leukemia arose and commandeered the factory of the bone marrow that makes the blood’s components for its own sinister purposes, devastating the blood counts, and how we would try to rein it in with chemotherapy.
“The chemotherapy kills the bad cells, but also unfortunately the good cells in the bone marrow, too, so we’ll need to support you through the treatment with red blood cell and platelet transfusions,” I told them both. I wasn’t sure how much of our conversation my patient grasped, but he recognized that his mother and I were having a serious conversation about his health and stayed respectfully quiet, even when I asked him if he had questions.
His mother shook her head. “That won’t work. We’re Jehovah’s Witnesses and can’t accept blood.”
As I’ve written about previously, members of this religious group believe it is wrong to receive the blood of another human being, and that doing so violates God’s law, even if it is potentially lifesaving. We compromised on a lower-dose treatment that was less likely to necessitate supportive transfusions, but also less likely than standard chemotherapy to be effective.
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“Is that OK with you?” my patient’s mother asked him. I liked how she included him in the decision-making, regardless of what he could comprehend.
“Sounds good to me!” He gave us both a wide smile.
We started the weeklong lower-dose treatment. And as luck would have it, or science, or perhaps it was divine intervention, the therapy worked, his blood counts normalized, and the leukemia evaporated.
I saw him monthly in my outpatient clinic as we continued his therapy, one week out of every month. He delighted in recounting a bus trip he took with his church, or his latest art trouvé from a flea market — necklaces with glass or metal pendants; copper bracelets; the occasional bolo tie.
“I bought three of these for five dollars,” my patient confided to me, proud of the shrewdness of his wheeling and dealing.
And each time I walked into the exam room to see him, he started our conversation by politely asking, “How’s your family doing? They doing OK?”
Over two years passed before the leukemia returned. We tried the only other therapy that might work without leveling his blood counts, this one targeting a genetic abnormality in his leukemia cells. But the leukemia raged back, shrugging off the fancy new drug as his platelets, which we couldn’t replace, continued to drop precipitously:
He was going to die. I met with my patient and his mother and, to prepare, asked them about what kind of aggressive measures they might want at the end of life. With the backdrop of Covid-19 forcing us all to wear masks, it was hard to interpret their reactions to my questions. It also added to our general sense of helplessness to stop a merciless disease.
Would he want to be placed on a breathing machine?
“What do you think?” his mother asked him. He looked hesitantly at me and at her.
“That would be OK,” he answered.
What about chest compressions for a cardiac arrest?
Again his mother deferred to him. He shrugged his shoulders, unsure.
I turned to my patient’s mother, trying to engage her to help with these decisions. “I worry that he may not realize what stage the cancer has reached, and want to avoid his being treated aggressively as he gets sicker,” I began. “Maybe we could even keep him out of the hospital entirely and allow him to stay home, when there’s little chance …” My voice trailed off.
Her eyes above her mask locked with mine and turned serious. “We’re aware. But we’re not going to deprive him of hope at the end …” This time her voice trailed off, and she swallowed hard.
I nodded and turned back to my patient. “How do you think things are going with your leukemia?”
His mask crinkled as he smiled underneath it. “I think they’re going good!”
A few days later, my patient developed a headache, along with nausea and dizziness. His mother called 911 and he was rushed to the hospital, where he was found to have an intracranial hemorrhage, a result of the low platelets. He slipped into a coma and was placed on a ventilator, and died soon afterward, alone because of the limitations on visitors to the hospital during the pandemic.
At the end, he didn’t suffer much. And as a parent, I can’t say for certain that I would have the strength to care for a dying child at home.
French archaeologists said Thursday they discovered the grave of a small child with what appears to be a pet dog dating to the Roman rule of the region about 2,000 years ago.
The researchers said they found the burial site during a dig at the Clermont-Ferrand Airport in central France. They believe the child was about a year old and buried with animal offerings along with the remains of the pet dog inside a coffin.
The coffin was found in a 6-by-3-foot grave. It was surrounded by 20 objects, including terra cotta vases, glass pots, half a pig, three hams and other pork cuts along with two headless chickens.
“The graves of young Gallo-Roman children are often located outside the community funeral home and sometimes even buried near the family home,” a statement from France’s National Institute of Preventive Archaeological Research said. “These toddlers rarely benefit from the same funeral practices as their elders, who at that time were generally cremated.
“The furniture that accompanies the deceased of Aulnat is quite exceptional, both in terms of its quantity and quality. Such a profusion of dishes and butchery items, as well as the personal belongings that followed the child to his grave, underline the privileged rank to which his family belonged,” the institute said.
The discovery is part of a dig that covers 7.4 acres where numerous objects from the Iron Age to the Middle Ages have been found. Researchers are conducting tests of glassware and containers to learn what they might have held.
America is a land of paperwork, and nowhere is that more obvious than at the end of someone’s life. Advanced care directives have to be carefully disseminated to healthcare providers and strictly followed. Property has to be divided and transferred while meeting relevant estate laws. And of course, there are the logistics of a funeral, cremation or other option that has its own serious complexities, costs and choices.
The worst time to figure out how to die is when you die. The best time to figure it out is precisely when you don’t have to.
For New York City-headquartered Lantern, the goal is to initiate those conversations early and give its users significantly better peace-of-mind, particularly in these dolorous times.
The company offers essentially a “how-to” platform for beginning to prepare for end-of-life, offering checklists and monitoring to ensure that the vast majority of details are figured out in advance. In some cases, the startup will handle the underlying details itself, while in other areas like estate planning, it works with partners such as Trust & Will, which we have profiled a number of times on TechCrunch.
Right now, the company has two plans: a simple free one and a $27 / year plan that tracks your progress on end-of-life planning and allows you to collaborate with family, friends or whoever else needs to be part of your decision-making. The company is in the process of adding other à la carte options for additional fees.
Last month, the company raised $1.4 million in a seed round led by Draper Associates with a few other firms involved. Earlier, the company raised a pre-seed round of $890,000 from the likes of 2048 Ventures, Amplify and others, bringing its total raised to date to $2.3 million. The company is organized as a public-benefit corporation and was founded in September 2018, and first launched a year later.
For founders Liz Eddy and Alyssa Ruderman, Lantern was an opportunity to tackle a looming problem in a compassionate and empathetic way. “I started my first company when I was 15,” Eddy, who is CEO, said. That company focused on dating abuse and domestic violence education for high school and later college students. “I really fell in love with the pace and variety of starting something new, but also in creating conversations around topics that people really don’t want to talk about and making it more palatable and comfortable,“ she said.
Later, she joined local suicide prevention nonprofit Crisis Text Line, which has an SMS-based network of crisis counselors who are trained to calm people and begin their process of recovery. She spent more than six years at the organization.
As for Ruderman, who is COO of Lantern, she most recently spent two years at Global Citizen, a nonprofit organization focused on ending extreme poverty. The two connected and incubated Lantern at startup accelerator Grand Central Tech.
The idea for better end-of-life planning came from personal experience. “I lost my dad when I was in elementary school,” Eddy said, “and saw firsthand how loss and grief impacts a family financially, emotionally, logistically, legally — every aspect.”
Today, many of these processes are offline, and the online products mostly available today are focused on individual elements of end-of-life planning, such as estate planning or selecting and purchasing a casket. Eddy and Ruderman saw an opportunity to provide a more holistic experience with a better product while also initiating these conversations earlier.
That pre-planning part of the product was launched just as the pandemic was getting underway last year, and Eddy said that “we had a sort of a really interesting launch where people were starting to come to terms with their own mortality in a way we hadn’t seen in a very long time.” Typical users so far have been between 25 and 35 years old, and many people start planning when they have a major life event. Eddy says that the death of a family member is an obvious trigger, but so is having a baby or starting a company.
One aspect that Eddy emphasized repeatedly was that having a will and pre-planning for end-of-life are not equivalent. “Even if you don’t have a dollar to your name after you pass away, there are a ton of other things that your loved ones, family members, whoever’s responsible has to consider,” she said.
From a product perspective, there are some nuances compared to your more typical SaaS startup. For one, the company needs to engage you regularly, but not too frequently. Unlike, say, a wedding, which is a single event that then is over, your documents and directives need to be occasionally edited and updated as a user’s life circumstances change.
Beyond that, one of the largest challenges with a product that talks about death is building a connection with a user that doesn’t seem cold, and, well, Silicon Valley-like. “Even as a product that is entirely virtual, making sure that you really feel that human connection throughout” is a high priority, Eddy said. “We use a lot of empathetic language, and our imagery, all of the illustrations are done by illustrators who have lost someone in memory of the person who’s lost.”
Longevity startups may remain a thesis for some VC investors, but handling the end — no matter when — is an activity every person faces. Lantern might shine just a bit more light on what is otherwise a debilitating and scary prospect.
It’s a cold Saturday morning in Melbourne and I am a doctor at work in a palliative care unit. I have just reviewed one of my patients, whose body is beginning to reveal some of the tell-tale signs of dying.
His son stands over him and sadly remarks that “this is a bad time to die”.
With strict visiting restrictions firmly in place across Melbourne, there is a very real chance that his father will die alone and he knows it. This is the new normal.
In a state of disaster, there are a set of rules and visiting restrictions for families and friends of those dying in a hospital setting. These restrictions vary slightly between health services, but the message is the same: as few visitors as possible, for as short a time period as is reasonable.
For months now, hospital staff (myself included) have been chanting the mantra of seemingly arbitrary visiting windows, maximum numbers of visitors per patient and numbers of visitors permitted at the bedside.
In recent times, I have found myself asking questions such as “do all six of your siblings need to visit?” or “could your grandchildren say their goodbyes via FaceTime?”. These conversations are among the hardest I have had as a doctor.
Many find these new rules unacceptable, and with good reason. Few people want to die alone, and even fewer want their loved one to be alone in the final weeks, days and hours of their life.
However, these are not normal times, and a balance must be struck between compassion and safety. Across the world, and now in Victoria, we know that many people with COVID-19 are dying alone; but so are those without COVID-19. Both are tragic realities.
Under normal circumstances, achieving “a good death” is laden with obstacles, let alone in a pandemic. An inherent challenge is that a good death is an individualised experience, reflecting the diversity of the human person.
There are some commonalities across what constitutes a good death, and the company of friends and family features almost universally.
A current patient comes to mind — a woman in her 70s dying of lung cancer — who tells me almost daily that her breathing is bad but the feeling of loneliness even worse. She would like to see her grandchildren, but no children are allowed in the hospital.
Her brother visits, but the allocated two-hour visiting window is not long enough to fill the void created when faced with one’s own mortality. And so on. Her story is not unique.
Dying in a pandemic has brought with it new and more challenging obstacles, ones that make us question what it means to be human. Death is normal, but dying alone is not. So, frankly, when I hear my patients and their relatives say that it is a bad time to die, I can’t help but agree.
Ultimately, how we live and how we die tells us about society as a whole. Today, people die alone to protect society and this at least may be a small source of solace. Their strength and determination to push forward and adapt to this strange new world is a testament to the human spirit.
I hope, though, that those dying in this COVID-19 world know that their sacrifice has not gone unnoticed. Every day, their struggles are seen and felt. Many have had to forgo the so-called good death, and that is the undeniable truth.
Andrea Aycock can only sometimes look at the photos of her hands clasped with her mother’s just before she died in May. But she’ll always cherish the helping hand she got from Anna Adams, an end-of-life doula in San Antonio who preserved that personal moment and so many more for Aycock in her mother’s dying days.
“Anna came and took care of her,” said Aycock, a call center operator in San Antonio. “(She) just mainly comforted me.”
Just as birth doulas help expectant parents bring new life into the world, end-of-life doulas help the dying cope with their next journey. They help the dying and their survivors face death with empowerment and affirmation instead of fear and anxiety.
Also known as death doulas, these trained professionals provide the terminally ill and their families physical and emotional support before, during and after death, the San Antonio Express-News reported. These are nonmedical services that often include relaxation exercises, funeral planning, educating the family on their loved one’s condition and just simple companionship.
Adams sees death awareness becoming more commonplace in the United States in the way that Día de los Muertos (Day of the Dead) celebrations have grown more mainstream and that there are more calls for services of end-of-life doulas.
“Cultures like the Mexican culture that have these beautiful traditions of staying in connection with that (dying) process are so admirable and so beautiful. Doulas want to make sure that is available to all people,” said Shelby Kirillin, an end-of-life doula in Richmond, Va., and program development manager for the International End of Life Doula Association (INELDA) in Jersey City, N.J.
Kirillin sees the rising awareness of death doulas as part of what she calls a “death positive movement,” where more people are getting back to supporting their dying loved ones at home and engaging with their death more up close and personal, much as their ancestors did.
“In the last 100-plus years in our Western culture, that has been taken away from us,” Kirillin said. “How to be with someone who was dying, how to touch them. That was something that we knew how to do.”
INELDA is one of just a handful of death doula organizations in the nation and was launched just five years ago. Co-founder Henry Fersko-Weiss created the first end-of-life doula program in the United States at a New York City hospice in 2003.
Kirillin estimates INELDA has around 40 certified death doulas across the country, yet has trained around 3,000 individuals in death doula care. Many just sign up to learn more about facing death and don’t pursue death doula work, she said, while others branch off to do their own training.
Most death doula services come in three phases.
The first is planning and preparation, which involves getting a terminal patient’s affairs in order and asking some tough questions that call for honest answers. Where does that person want to die? Who do they want present for those final moments? What so they absolutely need to say or do before they’re gone?
Kirillin said that first phase often addresses the dying individual’s regrets and unfinished business, as well as any advance directives, wills, etc. Often referred to as “legacy work,” such planning makes it easier for family to understand and respect the dying person’s wishes.
Fran Morgan is in that early stage with her dying mother Rosalee, who receives hospice care at the private residence of a family friend.
“With Anna in the picture, she will be advocating for all of the things that need to happen,” said Morgan, a retired telecommunications company manager in San Antonio. “It will release me from those responsibilities, and I can just be with my mom and cherish those final moments.”
That second phase is called the vigil, usually the last four or five days of the dying person’s life where end-of-life doulas and family members spend more time at their bedside.
“I call them my angel vigils,” Adams said.
During her doula vigils, Adams, 38, often creates a soothing space for the dying with soft music and dim lighting. Sometimes she’ll add a favorite scent with aromatherapy. Most times, she just gently massages her client’s arms and holds their hands.
And in those final moments as they take their last breaths, Adams comforts them with what they most want to hear, be it Bible verses, soothing music or just someone to say it’s going to be OK.
The final phase of a death doula’s work addresses survivors’ grief. Kirillin said that involves circling back with the family a few weeks after their loved one’s death to check on their emotional well-being.
Kirillin stressed that end-of-life doulas do console families, but are not licensed grief counselors and will refer families to such resources if necessary.
When it came to caring for Aycock’s mother, Adams mostly helped with her bedside care and keeping her visiting nurses on task. Adams also explained to Aycock any of her mother’s diagnoses she didn’t understand.
Then there was that time Adams took those hand photos of Aycock and her mother. Difficult as it is for Aycock to look at those photos, much less share them, she still holds them close.
She holds Adams’s work even closer.
“It is the best help that you can get,” Aycock said. “They provide comfort not only for your loved one that is going through the transition, but for you.”
Morgan expects to experience more of that care from Adams. “I’m looking forward to the relationship that we’re going to have,” said Morgan, who started working with Adams around three weeks ago. “For now my initial experience (and) impression is she certainly has the heart for what she’s doing.”
Adams’s first experience comforting the dying came when she was 16. Fresh from certification as a nursing aid, Adams tended to a best friend’s cousin for several months at her home with bathing and conversation. That care continued when that cousin transferred to hospice care and well up to her death.
“So we just had a bonding moment. I gave her that sacred zone,” Adams said. “That kind of piqued my interest.”
Adams went on to pursue a career in hospice, then for the last four years worked as an EMS manager and dispatcher for a private company. But something pushed her back into working with the dying.
“I told my family, ‘God wants me to do this. God is keeping me in line with this,’ ” Adams said.
At the start of this year, Adams got her end-of-life doula certification. Then over the summer, she partnered with fellow certified doula Sonja Koenig to launch TX Doula Movement, an online training and certification course for death doulas, senior care doulas and doula consultants.
Adams knows of just a handful of death doulas in San Antonio right now, but she expects that number to double later this year when around five of her TX Doula Movement students complete their certification. Adams plans to launch her own doula training service next year.
Adams said the coronavirus has not deterred her from her work, save for having to incorporate more video consultations with families and masks and frequent hand-washings during visits. She has yet to provide end-of-life doula services to someone with COVID-19, but one of the hospice companies she works with takes in COVID-19 patients.
“I don’t have a problem working with COVID patients,” Adams said.
Adams said most hospitals still don’t work with death doulas, but hospice services are slowly warming up to them as adjuncts to their own care.
“It is relatively new, but we’re seeing it more,” said Rachel Hammon, executive director of the Texas Association for Home Care & Hospice in Austin.
Holistic Hospice Care is one of two hospice centers in San Antonio that works with Adams. Administrator Erica Sandoval said Adams has been a welcome bridge between families and clinical teams.
“She can get on (everyone’s) level,” Sandoval said. “And she’s very calm and very patient. And she just wins their trust and they feel very comfortable with her.”
Like Adams, Sandoval, too, sees parallels between death doulas and Día de los Muertos, such as the memory books the doulas make for their clients and the Day of the Dead tribute altars families make for their lost loved ones.
“I definitely think that there’s a good association to that because they are (both about) wanting you to cherish their memories and enjoy the last moments and everything that you can remember of the individual,” Sandoval said.
Before the doctor opened her mouth, you knew this wasn’t going to be good.
And it wasn’t, although you can barely remember what happened a minute after you heard the diagnosis. All you could wrap your head around were monitors and tubes and machines and death, when what you needed was “Dear Life” by Rachel Clarke, and a reminder that it wasn’t time for that yet.
When she was a little girl, Rachel Clarke was in awe of her father, a doctor who loved music and nature and who shared his sense of curiosity with his children. As a teen, Clarke toyed with the idea of following in his footsteps, but she chose a career in television instead. And then one day, after experiencing a couple of close brushes with death, she decided to go back to school to become a doctor, specializing in palliative medicine.
“I learned that dying, up close, is not what you imagine,” she says. “It is the essence of living… that really matters…”
About death, there are two main things: unlike our ancestors, we aren’t used to it; and we can’t know what it’ll be like. These are what Clarke helps her patients and their families deal with, and while she can’t answer the latter question, she promises them that the days and hours before the end are as full of life as possible.
Sometimes, that means meeting fears head-on, and discussing death matter-of-factly. Sometimes, it’s asking questions of a patient because no one else has done so. Caring for someone who’s dying may mean literally opening a window to sunshine or birdsong, holding a hand, letting “a wife curl up in a hospital bed beside her dying husband,” or encouraging a visit from a pet or a beloved grandchild. And sometimes, a doctor just needs to remember that “There is always a spark of beauty or significance…in the life you have left,” even when the person dying is someone the doctor loves.
This year, no doubt, you’ve seen enough death to last several lifetimes, and you’re not sure you can withstand a book about it right now.
But hold on, because “Dear Life” lives up to its title.
Beautiful, thoughtful, and loving, this book is absolutely brimming with life as author Rachel Clarke describes the end-of-life care offered at the hospice where she works and some of the most memorable patients to whom she ministered care.
If that sounds like an anti-life book, well, it’s not. It’s true that people die in this book, and they do it often but Clarke’s accounts of their days prior to death are quiet and serene, with no fear, no pain, and the minimum of loose ends left. Her workplace is not a sterile, clinical home where people go to die; rather, it’s a place where people die but first, happiness sneaks in sometimes.
And for that, curiously, this book on death-and-life may be the balm your COVID-bruised mind needs now. Indeed, calm, truthful, and not too gory, “Dear Life” is good.
Another book to look for is “Grief: The Biography of a Holocaust Photograph” by David Shneer. It’s the story of a photo taken toward the end of World War II, and the emotion inside it. Part meditation, part history, this book is perfect for the historian, too.