David Copeland remembers his great grandmother’s death.
“She died with all of us around her, singing to her, and that’s how she slipped away from here,” he said. “And I want to slip away the same way.”
Copeland is the owner of Live Without Regrets. He works as a death doula guiding others through the end-of-life.
Only 36% of Americans have written or talked to loved ones about their end-of-life plans, according to the National Funeral Directors Association. Yet, everyone will have the experience of dying.
“I say we work in the in-between. In between life and death. In between joy and sorrow. We work in between questions and answers. We’re navigating that.”
Having these difficult conversations, and coming to terms with our impermanence can be scary, sad, and mysterious, and it provokes anxiety for many.
“I say we work in the in-between. In between life and death. In between joy and sorrow. We work in between questions and answers. We’re navigating that,” Copeland said.
“If I can be, I try to be present for the death and the transition,” he said. “If you want a vigil, if you want somebody to stand next to you, if you want songs or singing, and all the things that come with vigiling.”
Copeland also helps the dying navigate conversations with friends and family, and examine the kinds of legacy they want to leave behind.
“Sometimes it’s writing letters to friends, or writing letters to kids that may not be in your life. You’re estranged, but this is what they wanted to give you when they passed – here you go, directions,” he said. “And it’s just good for people to take control of that part of their dying experience and the life they lived.”
Even medical professionals, whose jobs require delivering difficult news, can struggle to talk with their patients about dying. So part of Copeland’s role as a death doula is working with the dying to help them understand what’s going on.
David Copeland is the owner of Live Without Regrets. He works as a death doula guiding others through the end-of-life.
“We have the ability to have real conversations,” Copeland said, giving an example. “Alright, they say you have pancreatic cancer and have six weeks (to live). Well what does that mean? What to expect? Some folks want that to know that so they can prepare, some people don’t. They don’t know how to have those conversations with the health care system. “
Copeland is also an advocate for the LGBTQIA+ community, who have unique needs that often require them to not only grapple with death, but also dignity and identity.
“You have aging trans people who go back in the closet when they go inside of hospice centers and nursing homes because they won’t be able to keep themselves,” he said. “I really push for them to have a representation for disposition of the body. It helps so that the next of kin don’t come in and do whatever they want to you, and dead name you and misgender you and do all the things that you didn’t want.”
Michael Kammer said the five important things family and friends can say to a loved one who is dying are: I love you, I forgive you, forgive me, I’m going to miss you, and goodbye.
Michael Kammer, a former medical social worker at Hospice of Dayton, has guided many people through the end-of-life. With his unique background as a former chaplain, massage therapist, and social worker, he has helped the dying navigate the mind, body and spirit.
Kammer said that when people come into hospice sometimes it’s already too late to have these conversations.
“The patient comes in and is unresponsive, so we are working with the family. But, of course, it’s still important for the family to communicate with the patient, even when the patient can’t communicate back,” Kammer said. “Because we all believe in hospice care that they hear, that the patient hears and at some level understands.”
Kammer said the five important things family and friends can say to a loved one who is dying are: I love you, I forgive you, forgive me, I’m going to miss you, and goodbye.
He said he would also add a sixth: that it’s OK to let go.
“It’s amazing to see how when just the right person gets there and has that conversation with the person who is dying, they’re often able to slip away, sometimes very quickly,” Kammer said.
Like Copeland, Kammer’s work with the dying has led him to come to terms with his own mortality. “Well, for one thing I no longer fear my death. I’ve imagined my death in every imaginable way possible.”
The title for this article is taken from an autobiography from Linda Bellingham, an actress who wrote about her experience of living with terminal cancer: the difficult and at times awkward feelings and sense of taboo that comes from facing one’s death. It is this taboo that drew me to write this piece.
By Jack Timmins
The inevitability of death is exactly why it should be discussed.
It is natural to avoid thinking about dying, particularly for young people. If you are young and healthy, why do you need to think about dying anyway? It is normal to put it to the back of your mind, and if you do think about it, to presume it will be a good death – one where you die peacefully, surrounded by loved ones and a pain-free and gentle end to a long, happy life. It can be, and for some people it will be. But this is not a guarantee. The inevitability of death is exactly why it should be discussed. To live your best life, it is important to consider your best death, and one of the ways to ensure a good death is the principle of assisted dying.
You are probably familiar with euthanasia but perhaps not with assisted dying. Maybe you think it is the same thing? The distinction between euthanasia and assisted dying is that the former is a deliberate act to end a person’s life for them, whereas the latter enables them to do it themselves. For example, euthanasia is like a doctor turning off someone’s life support machine, while assisted dying is providing a dying relative access to a lethal dose of medication. Both practices are currently illegal in UK law.
However, in March this year, Liam McArthur, a Liberal Democrat MP, tabled the Assisted Dying for Terminally Ill Adults Bill, which he expects to be debated in Autumn this year. This bill would make it legal for eligible adults to be provided with assistance to lawfully end their own life. However, it would only apply to those living in Scotland. It is worth noting that assisted dying is legal in Switzerland, the Netherlands, Canada, Australia, and several US states. A recent poll from a campaign organization, Dignity in Dying, revealed that 75% of the public supports assisted dying, with only 14% opposing.
It is time to stop assuming that everyone wants to stay alive whatever the cost, and do what we can to ensure people can have a good death.
One of the concerns is that if the law were to change, rather than giving vulnerable people – those in pain or with long-term conditions – more autonomy and control over their bodies, it could have the opposite effect. It might add a sense of pressure on them to die, to remove their burden. There are also safeguarding concerns that the law could be exploited to coerce people into killing themselves, particularly women.
Fundamentally, assisted dying concerns only one thing – autonomy. It gives people the right to make their own choices. It is not about an obligation or justification for suicide, rather, it is about taking an honest, candid approach to one’s health. The reality is that there are people currently in terrible situations without any chance of getting better. They know this, and they understand this and decide that this is not the future that they want. However, they are forced to endure it because they have no choice. They are met with various arguments like life is precious, and that their symptoms can be managed. But if the pain is unbearable, surely it is more humane to respect their choices than reduce their symptoms and suffering.
As people are living longer, what was once a taboo, uncomfortable topic of conversation is now being rightfully discussed. Much like how cancer was once stigmatized and referred to as ‘the Big C’, it is time to stop assuming that everyone wants to stay alive whatever the cost, and do what we can to ensure people can have a good death. It is the responsibility of any modern state.
— Cancer patient on why she opted for an assisted death
Tracy Hickman is terminally ill with cancer which has spread into her brain. In less that two weeks, she will die an assisted death.
By Mariné Lourens
Tracy Hickman has lived her life “pedal to the floor” – just existing has never been an option. So in less than two weeks, she’ll have an assisted death. Mariné Lourens reports.
>Sitting across from me on her couch, Tracy Hickman looks cosy in a warm woolly sweater with a blanket tucked around her legs. She is strikingly intelligent and every so often, despite the weighty topic of our conversation, an infectious smile flashes across her face.
It feels quite surreal to know that in two weeks, Tracy will be dead.
On May 22 to be exact. On a beach, surrounded by loved ones with the sound of the waves in her ears, she will breathe her last breath. “I can’t think of a better way to go,” she says.
The 57-year-old Auckland woman’s bubbly personality makes it hard to fathom the extent of the disease wreaking havoc inside her body.
It started with a routine mammogram in March 2019 which detected a malignant tumour in her left breast. Within two hours a doctor was talking to her about a mastectomy and the possibility of chemotherapy.
“It was so confronting. Two hours after a standard mammogram I was sitting there talking to this doctor about mastectomies without anyone there to support me.”
She was diagnosed with HER2-positive breast cancer, a form of cancer that tends to be more aggressive than other types. A left-side mastectomy was done, followed by 12 weeks of chemotherapy treatment.
Tracy Hickman was first diagnosed with an aggressive form of breast cancer in 2019.
Hickman had to take some time off from her job as director for Chartered Accounting firm Baker Tilly Staples Rodway during her treatment, but returned to work part-time in August 2019.
In December 2019, her other breast was also removed, both as a preventative measure and to achieve symmetry.
For all intents and purposes, the treatment had been a success. There was no evidence of cancer cells and Tracy focused on getting back to life as normal. For her this included continuing to run some of the most challenging marathons in the world – she has completed the six World Marathon Majors, a marathon in Antarctica, and a 250km ultramarathon in the Sahara desert called the Marathon Des Sables.
“But I never felt free of [the cancer]. I always thought it was going to come back,” says Tracy. It wasn’t something she could attribute to physical symptoms, just a gut feeling that this chapter of her life was not quite over.
An unwelcome return
In October 2021, Tracy was watching television with her long-time partner, Paul Qualtrough, when she noticed numbness on one side of her face and the fingers on her left hand. “My first thought was: ‘Is the cancer back?’”
Tracy Hickman with her partner of 15 years, Paul Qualtrough.
A brain scan didn’t show any abnormalities, but a month later it happened again. Another brain scan was done, but again showed nothing of concern.
A neurologist said it was likely a type of migraine. Tracy was dubious, but her concerns that the symptoms might be related to her previous cancer diagnoses were shut down.
Then the seizures started. The first one was on a Sunday in November 2022, while Tracy and Paul were at a farmers market close to their home in Grey Lynn in Auckland.
“I suddenly couldn’t speak. I couldn’t form sentences and I was numb down my side. Paul called Healthline and they said it could be a stroke, take her to ED,” says Tracy. “They did a CT scan, they said the CT scan doesn’t show anything. We’ve looked at all her notes, it’s a migraine.”
Tracy’s cancer returned in 2023 when it was discovered she had tumours in her brain, spine, lungs and lymph nodes.
It was only in February 2023 when a seizure happened in the presence of a neurophysio that Tracy’s oncologist was finally notified.
An MRI of her back showed two tumours, and a subsequent PET scan showed more tumours in her lungs, chest wall, lymph nodes and numerous more in her spine.
“When all of this was happening, it was the cancer. It was not a migraine, it was cancer and it was just not being picked up.”
The cancer spread quickly. “A scan showed that between February and April, it got really bad. They started talking about me possibly not making it to Christmas.”
Tracy was terminally ill, but there was treatment available to try and give her more time, maybe even up to eight years.
After she had suffered significant side effects with her previous cancer treatment, Tracy was torn between fighting for more time, or declining the treatment and just making the most of whatever time she had left. She decided to give the treatment a go.
Fighting for time
More rounds of “really harsh” chemotherapy made her lose another 20% of her hearing – she was already wearing hearing aids after losing a significant amount of hearing to the chemotherapy in 2019.
Tracy Hickman says she has always lived her life to the fullest – “just existing” through her last days was not an option for her.
The cancer treatment also caused nerve damage resulting in incontinence. “That was maybe one of the hardest things to deal with. I was in a shop buying a gift for a friend and I thought, oh, someone’s baby needs changing. And when I got home, I realised it was me and I didn’t even feel that I had been.”
Immunotherapy gave her terrible diarrhoea, a particularly difficult side-effect to deal with when you’re incontinent. She had terrible “chemo brain”, a mental fogginess that made it difficult to concentrate, think and make decisions.
On top of it all was the pain. Intolerable, unshiftable pain. She was prescribed morphine for the pain, but hated how “out of it” it made her feel.
“I said to my oncologist I don’t want to have treatment any more, I want to stop.”
Tracy knew this meant any chance of extra time was dashed, but life had become unbearable.
From about June last year, she started looking into ways to take her own life. “Even though I thought I had another two or three years left, I didn’t think I could do two or three years. I didn’t know if I could keep going until Christmas this year.”
Tracy said while she is ready to go, she is not ready for her relationship with Paul to end. “We had always planned on forever.”
In March she made one last trip to the UK to say goodbye to dear friends. She knew it was going to be her last long-haul trip.
It turns out she didn’t have two or three more years. Far from it.
Upon her return to New Zealand, a scan showed over 30 tumours in her brain. “They stopped counting at 30.”
There were more tumours in her lungs and spine. Her sternum was broken due to the cancer making her bones weak and now every breath was accompanied by a stab of pain.
Tracy had about three months left to live, maybe less. She was eligible for assisted dying.
The End of Life Choice Act 2019, which became legal in New Zealand in November 2021, means only those suffering from a terminal illness that is likely to end their life within six months are eligible for assisted dying.
Tracy picked a date. It had to be on a day that nobody close to her had a birthday, far away enough for her to get everything done she still wanted to do, but close enough that she would still be competent to make and communicate an informed choice on the day.
She decided on May 22.
Goodbyes
Tracy’s sister, Linda Clarke, came over to New Zealand with her husband and daughter to spend as much time with Tracy as possible.
Tracy and Paul booked a weekend to Sydney where she said goodbye to some friends, a few days in Queenstown where she took a helicopter trip to the top of a glacier, and a trip to Rotorua where she supported some of her running friends taking part in a marathon.
“I’ve had so many dinners and lunches and things. Some I knew that was going to be the last time I was going to see them, so I said goodbye. Others I knew I would be seeing them again. I have a whole list of when I am going to see people and what I’m doing and who I am saying goodbye to.”
Tracy Hickman was an ultramarathon runner, completing some of the world’s toughest endurance races.
She is making the most of the time she has left – “I’ve had so much chocolate in the last month!” – but she’s ready. Her ability to swallow has already decreased and is expected to get worse. “With the pain and the incontinence and everything else, I am ready to go.”
Paul supported Tracy’s decision from the moment it was made, but admits seeing an actual date on the calendar – and especially seeing how close it was – was immensely painful.
He fights back tears as he explains why a decision so incredibly difficult was also the right one for them. “All you can ever do in life is play the hand you’re dealt and look at the choices available and take those that you think are going to lead to the best outcome. And this is the choice that is going to lead to the best outcome. It is a lot to get your head around… But this, for us, fits.”
There have been a lot of tears. Sometimes one comforts the other and sometimes they cry together.
“Most nights I wake up around 2 or 3 o’clock in the morning and I have a little cry,” says Tracy, but during the goodbyes, in keeping with her caring nature, it is usually Tracy comforting others.
Tracy Hickman with partner Paul Qualtrough and her sister, Linda Clarke, who has come from the UK to say goodbye.
Linda Clarke says a life without her sister is unimaginable, but she supports her in having a choice over her own death. “I don’t want to lose her and I shouldn’t be losing her. But having this time to say goodbye is a pure gift, even though it is a very hard one.”
She describes Tracy’s last few weeks as an “emotional rollercoaster”, filled with get-togethers with friends and doing fun things, but many painful goodbyes.
Tracy says it is a privilege to be able to choose an assisted death and she feels fortunate to live in a country where that is a possibility. “I can’t do the things I love any more. I can’t work any more, I can’t travel any more and I can’t run any more. I feel like I am not me any more. So the people that I love aren’t with the person that they know and love, and for all of those reasons, life has become unbearable.”
She believes when the legislation is reviewed, it should be expanded to allow people who could truly benefit from it to also have that choice over their own death. “My form of illness is almost what was in mind when the legislation was written, but in actual fact, there are many people out there who could benefit from an assisted death, but are not eligible. Someone who has eight months or 10 months, might end up having a really horrible death because they are not eligible for assisted dying.”
She is not scared of dying, nor is she angry about her fate. “It’s happened, you know, and it’s better it happened to me than someone with little children or someone really young.”
Getting some treatment that will allow her to be around a bit longer but suffering through unbearable pain was not worth it. “Just existing is not how I live my life. I’ve always had the pedal to the floor and done everything I could possibly do. I’ve had a wonderful life,” she says.
“Everyone who knows me has said, ‘you just seem so at peace now’. And I am. I am at peace.”
Death is considered taboo in the Western world and many other cultures. With the world’s population aging rapidly, we cannot afford to turn a blind eye toward the process of dying. We owe it to ourselves and our loved ones to advocate for the tools, knowledge and spaces necessary to prepare for a good death.
At the age of 87, my father passed away from cancer in Calgary, Canada. He had multiple myeloma, an illness that made his bones very fragile. He was bedridden for the last nine months of his life. Instead of hospice, he wanted to spend his remaining time at home for several reasons. We could be with him 24/7; he could be in familiar surroundings, eat his favorite foods and watch his favorite shows; and we could retain control over his care and manage it according to his wishes.
My mother, sister and I supported his decision. My 80-year-old mother managed the home and cooking. I scheduled appointments and managed his day-to-day care. Since this was during the COVID pandemic, my sister could work from home and would pop up between meetings to feed him. My sister and I would alternate doing night duty. It was the best of times; it was the worst of times. It brought us all closer; it was frightening and exhausting.
In the final days, I felt myself woefully unprepared to guide a loved one through this inevitable journey in a gentle and reassuring manner. I wondered why our society and culture do not offer us more support. Death needs to be made into a less traumatic and more normalized process.
We are woefully underprepared…
Globally, the population is aging; the number of people over 80 is expected to increase dramatically from 137 million in 2017 to 909 million by 2100. In Canada, more than 20% of the population is over the age of 65. In the US, that number is approaching 18%.
Some 61 million people the world over died in 2023. That number is expected to reach 120 million annually by the end of this century. The upcoming decades will see the steepest rise in the number of annual deaths in possibly all of our human history. Death should be an important public health topic — both globally and nationally.&
For the experience of birth, there is an abundance of support and enthusiasm. There are informational books like the classics What to Expect When You’re Expecting and Pregnancy, Childbirth, and the Newborn and Ina May’s Guide to Childbirth. More are published each year. Prenatal classes are found in numerous hospitals and community centers. Some stores cater specifically to new parents, offering necessary as well as cute items. There are celebrations like baby showers. Grandmothers and mothers and aunts and sisters and friends share their excitement, wisdom and help. There are hospitals and obstetricians. And there are doulas and midwives.
For the experience of death, we are sad, frightened and alone. There’s not enough support, even though experiencing death — either others’ or even our own — is as much a part of our existence as birth. In fact, one could argue that death is the more universal experience. Yes, we’re all born, but we don’t even remember it later. In contrast, many of us are even conscious and coherent in our final days before death. Apparently, just before he died, Oscar Wilde had the wherewithal to say, “Either that wallpaper goes or I do.” While not all of us give birth, we all die. We need to be better prepared for death.
…but we don’t have to be
We don’t do too badly in terms of books on the subject of death. While there’s not yet a What to Expect When You’re Dying, there are several excellent books on the practical aspects of death: Atul Gawande’s Being Mortal; Sherwin Nuland’s How We Die; Margaret Rice’s A Good Death; Katy Butler’s The Art of Dying Well; and Sallie Tisdale’s Advice for Future Corpses. Such books can help to introduce, inform and normalize the concept. They can help us see death not just as something to avoid, but as something to prepare for.
There are no classes on how to die well, but there could be. Just like how we have prenatal classes, we could offer pre-death — or to be parallelly Latin, “premortem” — classes, for anyone experiencing death. Premortem classes would be taken when we know death is impending, or even beforehand to motivate us to make the most of our remaining time. To make them accessible, these classes could be offered in hospitals and community centers just like prenatal classes.
True, death means the loss of a person instead of a gain. But isn’t that even more of a reason to have a celebration before dying, to appreciate what is precious while we still have it? There is rarely a pre-death celebration, particularly in the West. End-of-life celebrations can bring the dying and their loved ones together to reminisce, reaffirm and say goodbye. In some communities in South India, the 60th and the 80th birthdays have long been celebrated with special fanfare. There is a puja (prayer) for the guest of honor, followed by a feast and party attended by a large number of family and friends. The Western world is now thinking of “living funerals” — or the happier term, “celebrations of life.” Perhaps we should embrace them wholeheartedly.
Preparation for death could also involve a bit of a shopping-and-social experience. There are already “Death Cafés” where people meet in a café to talk about death. There is potential to expand this to a full-time, accessible space with books on philosophy, faith, how to have a good death and how to guide loved ones through the process. There could be support group meetings for the dying as well as their companions. Conversation groups on a variety of death-related topics and lectures from experts could offer those premortem classes. Given the growing demand foreseen over the course of this century, this has the scope to develop into a purposeful space for preparing for death.
Professional care shouldn’t end at the hospital
While bookstores and cafes can offer space to talk about death, there is still a demand for experts to coach us through the process. There are palliative care doctors, but only in cases of incurable diseases and not for cases of regular deaths. Hospices are few in number and are only open to those with a terminal illness and a prognosis of less than six months. As a society, we need to consider and plan spaces where people — especially those who are alone — can die in comfort and with easy access to professional expert care.
Over the past 20-some years in the US, the percentage of deaths at hospitals has decreased from 48% to 35.1%. The percentage of deaths at home has increased from 22.7% to 31.4%. In a 2013 survey in Canada, 75% said they would prefer to die at home. Governments too prefer to have us pass away at home, as it lessens the burden on nations’ hospitals and healthcare systems. Passing away at home may be what most of us want — in a familiar place, surrounded by our memories and family. How nice it would be if we could also have a death expert on hand. Just as we have a midwife to assist us in the birthing process, we could have a midwife to help us in the dying process. Surprisingly, such people exist.
A death midwife or doula is simply defined as a person who assists in the dying process. There are already death midwife associations in several countries (e.g., Canada, US, UK), such as the International End-of-Life Doula Association (INELDA). Death midwives can perform a variety of services. Many provide information and logistical assistance, such as death planning and funeral planning.
I envision a broader and more intimate role. I see a death midwife as similar to a birth midwife, someone who is very hands-on and who has a link with a doctor. A comforting, compassionate and yet objective presence who has helped many die well. It would involve assisting with physical as well as emotional end-of-life care. Just as the birth midwife helps both the mother and the child, I see the death midwife as helping both the dying and their companions. Death midwives can give guidance in accordance with the wishes of the family and, most importantly, in accordance with the wishes of the dying. They can hold our hand till the gate.
We owe it to ourselves
Given the unprecedented numbers that will be dying in the coming decades, it would be wise for societies at large to treat death as a public health issue. And given that none of us is likely to escape death, it behooves us individually to advocate for support systems – such as informative literature, preparatory classes, conversation groups, dedicated products and spaces, and accessible death experts and midwives. A good death may well be possible if we prepare to evolve in such a manner. We owe it to our parents, ourselves and to our children.
End-of-life doulas can help hospices’ efforts to improve health equity in hard to reach settings while also improving quality in the last days of life.
The quantity and quality of patient visits during the last days of life is an important quality measure for hospice providers. Having doulas at the bedside during the last days of life has positively affected hospice quality outcomes, including those among underserved populations, according to Diane Sancilio, director of counseling and support at Gilchrist Cares.
The home health and hospice nonprofit provider began offering end-of-life doula services in 2010 and currently has 75 of these trained volunteers, Sancilio said. Doulas can help improve hospice’s ability to support patients and families during their most vulnerable final moments, she stated.
“We have round-the-clock doulas that can be available when our clinical staff are not,” Sancilio said. “They can come sit with a person for hours when a family member or caregiver can’t be there so their loved one does not die alone. There is absolutely an impact. We do see the impact of having end-of-life doulas and the care that families experience in those last couple of days.”
The role of doulas in hospice care
Patients and their families often need greater support in the final days of life, Sancilio said. Doulas can help hospices to reach these patients further upstream in a variety of ways, including increased touch points with families at the bedside, she added.
Hospices have various models of end-of-life doula support including volunteer-based services, contract-based services and some include these professionals as part of their interdisciplinary team.
End-of-doulas often do not face the same time constraints as hospice providers and can stay with the patient longer, according to Tracie Taylor, nurse and certified end-of-life doula partnering with Heart to Heart Hospice. During that time doulas help address their nonmedical and psychosocial needs, including anxiety, guilt and fear of death, Taylor stated.
“End-of-life doulas can sit with patients and families for as long as needed, staying continuous hours,” Taylor said. “By educating people and helping them confront their own mortality in a healthy, safe environment we can eliminate some of that regret at death.”
Heart to Heart has been growing its base of end-of-life doula providers in recent years, including hiring more of these professionals in its Houston and Indiana service regions.
Among the factors fueling these services is their impact on quality, according to Shana Sullivan, chaplain and end-of-life doula at Heart to Heart Hospice. Doulas are trained in a variety of areas in the dying process that can help support terminally ill patients and their families during the last days of life, Sullivan said.
In addition to assisting families in funeral and memorial service planning, vigils, legacy work and providing anticipatory grief counseling, doulas are trained in communicating on sensitive topics, she explained. They can also have skill sets in music and aromatherapies, reiki, yoga and meditation, that can aid in symptom burden among patients, Sullivan added.
“Doulas have a lot of various skill sets they can bring to the table,” Sullivan told Hospice News. “What makes doulas a needed asset to a hospice team is [that] they bring a modality of support [and] provide lots of quality time for the family member that another care team member might not be able to do. That’s invaluable to a family.”
Doulas can also help hospices improve a hospices’ ability to deliver goal concordant care among rural and culturally diverse patient populations, according to Taylor.
“Rural and diverse areas can be a challenge for other providers,” Taylor said. “Respecting our patients for their beliefs, roots in their communities and diversity of their area are all part of how Heart to Heart honors those we serve. Public outreach and community education is key in rural areas, [and] knowledge is part of life planning and dignity.”
Doulas closing disparity gaps in the last days of life
Some of the most underserved groups with health care disparities include people of color; incarcerated, seriously ill seniors; rural populations and the LBGTQ+ community, among others.
Doulas can help hospices to better understand the broad range of unmet needs and barriers to support during the final stages of life among underserved populations, according to Eric Flotow, a certified end-of-life doula. Flotow has firsthand experience of providing hospice care to incarcerated individuals.
“I’ve seen many things that occurred in the Department of Corrections that still haunt me today within the hospice setting and the way that people were treated,” Flotow told Hospice News. “That brought about this recognition of this major injustice that is just continuing to go unaddressed and challenges from a humanitarian perspective. Death doulas can help create safe spaces, provide counsel and help people heal and die well. We bridge the gap between death and hospice care at the end of their life journey.”
Misunderstandings, fear and mistrust of the health system also represent main barriers to care among underserved groups, according to Lauren Carroll, founder of The DeathWives. The Colorado-based organization provides death doula certification and training, along with doula referral assistance.
End-of-life doulas can break down common barriers among underserved populations, as they often have deep roots in various community groups and a unique understanding of different cultures, beliefs and death processes among diverse populations, Carroll said.
The end-of-life doula workforce is becoming increasingly diverse, according to Carroll. A growing mix of men, women, transgender and cisgender individuals have become interested in death doula work, along with people from diverse cultural and ethnic backgrounds, she added.
Having a doula’s insight and ability to forge community relationships is invaluable to reducing hospice disparities among underserved populations, she stated.
“A lot of underserved people don’t have representation in a funeral home or hospice setting,” Carroll said. “The greatest thing about a death doula is that we can help bridge that gap of understanding. A lot of our work is advocating rights and wishes that people have and providing education. People feel more comfortable working with people in their own community, which doulas often are. It’s easier to have a communication relationship with them during a very vulnerable time versus health workers they might not see themselves in.”
As Medicare Advantage grows bigger and bigger, there’s one area the industry and regulators haven’t figured out how to make work yet: hospice.
Why it matters: The end-of-life care option is the only Medicare service that can’t be offered in the private-run alternative, which now covers over half of enrollees.
Medicare is winding down an experiment — years earlier than expected — that let some Medicare Advantage plans offer a hospice benefit, citing operational challenges and limited interest from insurers and hospices.
Catch up quick: Usually, when a Medicare Advantage beneficiary decides to enter hospice after receiving a terminal diagnosis, traditional Medicare pays for this care while they remain enrolled in their private plan.
That could make navigating insurance “very, very clunky” for hospice patients, especially when they have health care needs unrelated to their terminal illness, said Lynne Sexten, CEO of Agrace Hospice.
And this affects a lot of people. Nearly half of the 1.7 million Medicare Advantage beneficiaries who died in 2022 used hospice services, according to the Medicare Payment Advisory Commission (MedPAC).
Experts say the roots of this awkward arrangement likely goes back about 40 years, when private Medicare first became a permanent offering. At the time, traditional Medicare had just started covering hospice, so officials had limited data on how much it cost.
What they did: Medicare’s Innovation Center began an experiment in 2021 that allowed Medicare plans to contract directly with hospice providers.
It aimed to test whether that could make end-of-life care transitions more seamless for Medicare Advantage patients while reducing costs and improving care quality.
Participating health plans also covered palliative care and transitional care, where patients continued curative treatments like dialysis or chemotherapy temporarily during their hospice stay.
The Innovation Center announced abruptly in March that it would end the program in December, a year after officials said it would run through 2030.
The news came after two major insurers — UnitedHealth Group and Elevance — pulled out of the model. Only 13 insurers participated this year.
Hospices largely cheered the decision. Lower reimbursement rates, delayed payment from insurers and burdensome quality reporting made the experiment difficult for hospices that chose to contract with insurers, an independent evaluation of the program found.
The Centers for Medicare and Medicaid Services stressed that its decision to end the experiment doesn’t mean it failed, and the agency in a statement to Axios said it will continue to evaluate results.
Many insurers also faced a learning curve on how to work with hospice for their Medicare enrollees. Hospice is delivered and paid for differently than other Medicare benefits.
The experiment tried to do too much too fast, said Kevin Kappel, vice president at SCAN Health Plan, a nonprofit insurer that joined Medicare’s hospice experiment last year.
“I think people underestimated how complex it was to do. … We’ve learned a lot,” Kappel said.
Yes, but: Hospices and insurers said they still need to figure out how to make care more seamless for Medicare Advantage beneficiaries.
“This is by no means the end of the story for end-of-life care providers and MA plans,” said Ethan McChesney, policy director at the National Partnership for Healthcare and Hospice Innovation.
It’s been a full decade since MedPAC, the congressional advisory committee, recommended including hospice in Medicare Advantage, warning that excluding it “fragments care accountability and financial responsibility for MA enrollees who elect hospice.”
What we’re watching: Industry leaders say hospice doesn’t necessarily have to become part of Medicare Advantage to improve care integration, or at least not right away.
Ohio’s Hospice, a nonprofit provider that participated in the Medicare experiment, said it will continue working with Medicare plans to extend palliative care and symptom management to more patients, CEO Kent Anderson said.
While Anderson said some peers worry about the growth of Medicare Advantage, “the longer we sit outside the managed care world, the less relevant we’ll become.”
— A Q&A on supporting people at end of life in care homes
With more and more people expected to die in care homes over the coming years, it’s more important than ever the professionals working there get the practical and emotional support they need to provide excellent end of life care.
By Dr Julie Watson
When we think about what it means to die at home, it can be easy to jump to one idea of what this looks like. That is, a rented or owned flat, house or other dwelling. But for a growing number of people, ‘home’ at the end of life means the communal setting of a care home.
Good palliative care focuses on quality of life, and also accepts dying as a natural process. It’s vital people working in care homes get the support they need – both practical and emotional – in order to be able to give people in their care the best end of life experience possible.
I spoke to Senior Carer, Loren Hunt, who’s worked in a care home for several years, about what this looks like for her.
Q: First things first, could you describe a typical day?
We help the residents to get up, get dressed and start their day, have breakfast and then see what activities they’d like to do. Throughout the day, we help them with things like going to the toilet and if they need assistance with eating and drinking. We check their general well-being, make sure they’re comfortable and safe.
In the evening, we help them get into their pyjamas, washed and ready for bed. It’s personal care, but also a lot of general life support and making sure they’re happy and comfortable.
As a Senior Carer, I’m responsible for delegating tasks to the team as well as caring for people directly.
Q: What’s the best thing about working in a care home?
My favourite part of my job is just getting to know the residents and building that friendship and connection with them. I enjoy helping people to get the most out of life… Having a dance and being silly, making them happy. Trying to get them to participate in things. I think there’s a perception that if you go into a care home, you just sit in a chair all day and that’s that. But it’s not like that really.
Some of the people we care for have had such interesting lives. We’ve got so many residents who have done a lot of travelling and lived abroad and have wonderful stories. So it’s really nice just having chats about that with them as well.
Q: What’s the most challenging part?
We’re taught to not get too connected to the people in our care so that we don’t get upset when they do pass away. But when you do see people deteriorating and then getting to that point in life where they’re reaching the end, I think that’s the hardest part.
It can take months and months, or it can be really, really quick. But as soon as you realise it’s coming, it’s sad. And of course, when they do ultimately pass away, it is upsetting because as much as you’re advised not to get too emotionally attached, you can’t help it really.
I feel like you wouldn’t be doing your job as well as you could if you didn’t get connected to the people you care for.
Q: What are the challenges of caring for someone who’s approaching the end of their life?
If you’ve known someone for a while, it can be hard to adjust to their new needs because you get so used to them being able and not needing as much support. You have a routine together, so when it suddenly changes you have to adapt and think: ‘Ok, how can I now best support this resident now?’
And it is a lot of learning to do, and there may not be much time. It would definitely be helpful for more training on that side of things. It’s the area where I personally feel the least knowledgeable. Because it’s so different from person to person, and there is no set of rules which say: ‘OK, when this happens, you do this’, because everyone is different.
Q: Could you give an example?
One area which is often spoken about is eating and drinking at the end of life. There’s this perception that as soon as someone’s palliative, they don’t need to eat proper food anymore. That fluids should be thickened, or food should just be things like ice cream and yoghurt.
But that’s not necessarily true for everyone. For some people it might be, but others might manage to eat and drink fine until the very last stages. Or they might just want a taste of their favourite food. There’s nothing to say that if they want a taste of salmon or a roast potato, they can’t have that. They might not have a lot, but it means they’re still able to have that pleasure.
I think carers are often scared, thinking ‘what if I give them this piece of potato and they choke?’ so it feels safest to default to the ‘safest’ option. To have some help with confidence so that, for example, if someone does ask for a bite to eat, you can use your judgement and understand how to make it as safe as possible.
Q: Do you experience the very end of someone’s life very often?
Yes, people will quite often die in the care home so that’s something I’ve experienced quite a lot. There have been a few instances where people have suddenly become really unwell and been taken to hospital and died there.
It’s not as nice when you don’t really know what happened. You don’t know if their death was nice or not because they weren’t at home. And from what we hear, I don’t think it’s usually as peaceful as it is when they die in the care home, in their home.
Q: What does giving someone a good death mean to you?
I think what really separates the really nice death experiences that I’ve had from the not so nice ones is just being able to have that personal element to it. When you’re able to do all you can to make sure they’re happy and comfortable in their last moments.
An expected death makes it a lot easier to make sure it’s a nice one. But even when it’s unexpected, I think it’s about the resident having everything they need in place, such as their medications – so they remain peaceful and not too distressed.
It’s also having people they know around them. It makes a huge difference when staff who’ve known the residents for years can be with them as they die, and can put like their favourite music on or sit and just have a chat about things if they’re still able to talk. We’re quite lucky that we have quite a low staff turnover. A lot of our staff have been there for 10 years or more.
A not so nice death would be obviously if they didn’t have all their medication in place to support them, because I think the worst thing is when a resident gets really distressed and there’s nothing you can do about it. But also, if they’ve never met the person who’s with them, and if they didn’t know their likes and preferences. If they weren’t able to sit and have a chat with them and support them in their weakest moments.
Thinking about that person as a human being who needs connection, just as we are all human and seek and build those relationships. It’s very special to be there when someone’s dying, but when you feel uncertain, unsure or like something’s not right for them, it can be very hard.
