Category: Healing and Helping Professionals

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Death doulas help people navigate end-of-life.

— Death doulas help people navigate end-of-life. “I say we work in the in-between.”

By Renee Wilde

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.
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.”

Complete Article ↪HERE↩!

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Dying and Other Stuff

— A Practical Perspective on Good Deaths

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.

By Ranjani Iyer Mohanty

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.

Complete Article ↪HERE↩!

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How Death Doulas Can Help Hospices Improve Health Equity

By Holly Vossel

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.”

Complete Article ↪HERE↩!

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“The hardest part is seeing them deteriorate having got to know them”

— 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.

Right now, 20.5 % of all deaths and 34.6% of deaths of people over 85   happen in care homes. The number of people over 85 is set to increase by 90% by 2048, meaning this figure is only going to rise. The median length of stay in a care home is now 15 months, which means deep relationships form between staff and those in their care.

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.

Complete Article ↪HERE↩!

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Hospice care for those with dementia falls far short of meeting people’s needs at the end of life

— An end-of-life care specialist reflects on how Medicare’s regulations for enrolling in hospice exclude many dementia patients who need it the most

by Maria Silveira, M.D., M.P.H., FAAHPM

Jimmy Carter, who chose to forgo aggressive medical care for complications of cancer and frailty in February 2023, recently reached his one-year anniversary since enrolling in hospice care. During this time, he celebrated his 99th birthday, received tributes far and wide and stood by the side of his beloved wife, Rosalynn, who died in November 2023.

In contrast to the former president, his wife, who had dementia, lived only nine days under hospice care.

Palliative care physicians like myself who treat both conditions are not surprised at all by this disparity.

Hospice brings a multidisciplinary team of providers to wherever a patient lives, be it their own home or a nursing home, to maintain their physical and psychological comfort so that they can avoid the hospital as they approach the end of life.

Hospice is not the same as palliative care, which is a multidisciplinary team that sees seriously ill patients in a clinic or hospital to help them and their families with symptoms, distress and advance care planning.

Strikingly, only 12% of Americans with dementia ever enroll in hospice. Among those who do, one-third are near death. This is in stark contrast to the cancer population: Patients over 60 with cancer enroll in hospice 70% of the time.

In my experience caring for dementia patients, the underuse of hospice by dementia patients has more to do with how hospice is structured and paid for in the U.S. than it does patient preference or differences between cancer and dementia.

A black and white historical photo of a smiling Jimmy and Rosalynn Carter on board their campaign plane.
Rosalynn and Jimmy Carter campaign for the presidency in 1976.

The role of Medicare

In the U.S., most hospice stays are paid for by Medicare, which dictates what hospices look like, who qualifies for hospice and what services hospices provide. Medicare’s rules and regulations make it hard for dementia patients to qualify for hospice when they and their families need support the most – long before death.

In Canada, where hospice is structured entirely differently, 39% of dementia patients receive hospice care in the last year of life.

The benefits of hospice

The first hospice opened in the U.S. in 1974.

Medicare began assessing the potential benefits of covering hospice care during Carter’s administration. The service gained popularity after Congress formalized a payment structure to reimburse hospice providers through Medicare in 1985.

At the time, lawmakers were responding to the realization that the cost of care at the end of life was the fastest-growing segment of Medicare’s budget. Most of those expenses covered costs for hospitalized patients with advanced incurable illnesses who died in the hospital after spending time in intensive care units.

Congress believed hospice would not only give seriously ill Americans an alternative to a medicalized death but would also help control costs. So it required hospices to provide holistic care to entice people to enroll in this new option.

The new Medicare coverage allowed hospice care to follow the patient wherever they lived, at home or in a nursing home. It would support families as well as patients.

These remain among hospices’ core values to this day.

A hospice nurse discusses how end-of-life care can become a life-affirming experience.

Impossible trade-off

In exchange, people enrolling in hospice would have to forgo other kinds of care, such as seeing specialists or being admitted to a hospital.

But letting go of specialists is a nonstarter for many patients.

Researchers have found that people with life-limiting illnesses like dementia are half as likely to enroll in hospice when they want to continue treatments they cannot receive in hospice.

Psychiatrists and geriatricians who treat dementia, and the psychologists, nurses, social workers and others who support them, are invaluable to families struggling to manage a dementia patient’s disruptive and sometimes violent behavior. They adjust and rotate medications such as antidepressants, antipsychotics, anti-epileptics or sedatives to help their loved one experience less anxiety, agitation or depression as their memory fades.

These adjustments are the norm for many patients with dementia who are particularly prone to side effects such as agitation or drowsiness. Specialized dementia teams are difficult to give up in exchange for hospice clinicians who are generalists following a protocol and adhering to a short list of approved medications.

But that is what Medicare currently asks these families to do.

The best of both

Hospice advocates and palliative care providers like myself believe dementia patients should have access to both specialists to provide expert guidance and hospice providers to support the care at home.

So-called concurrent care is the standard of care for children facing life-ending illness, as well as for patients in the Veterans Health Administration. There is evidence that the concurrent care approach helps patients and, ironically, saves money.

For around a decade, the Centers for Medicare and Medicaid Services has been studying alternative models for hospice that include concurrent care for Americans covered by Medicare. The agency is proposing to study the issue a bit longer. However, more studies will not bring relief any time soon to the 7 million Americans with dementia and their families.

Criteria for hospice

Even when dementia patients and their families are willing to forgo specialists and hospitalization, they are unlikely to meet Medicare’s stringent criteria for hospice, which were designed to limit hospice to patients who are expected to die within six months.

It’s so difficult to qualify for hospice under a dementia diagnosis that one of my colleagues is known for saying, “If you want to get a dementia patient into hospice, find a cancer.”

Medicare’s criteria require that people with dementia not only depend upon others for help with toileting, transferring, bathing, walking and personal hygiene but also that they be bedridden, incontinent, minimally verbal and have a terminal complication of dementia such as aspiration pneumonia, recurrent urinary tract infections, significant weight loss, or bed sores.

These complications typically occur only in the most advanced stages of dementia and are less likely when people receive quality care at home.

More importantly, Medicare’s hospice benefits do not provide patients with dementia and their families the support they need most – hands-on care.

Most people are shocked to hear that, aside from providing a bath aide a couple of times a week and a home health aide for brief periods to give a family caregiver a break, hospice does not provide the hands-on care that dementia patients – and, frankly, anyone who is in hospice – requires.

Monitoring, toileting, hand-feeding, repositioning, ambulating, medication administration and wound care are left up to family caregivers.

Families of people with dementia must either sacrifice their personal well-being and livelihoods to care for a loved one at home, hire a professional home health aide, which costs from US$30 to $50 an hour, or place the loved one in a nursing home. The latter is paid out of pocket unless patients qualify for Medicaid. And hospice care, as currently structured, does nothing to help with that.

My heart breaks for people like the patient with early dementia I met recently. His daughter-in-law – his sole caregiver – requested he be enrolled in home hospice, only to find out that not only did he not qualify for hospice, but that hospice would not provide the hands-on support they needed.

“So, unless we can afford to pay for an aide or place him in memory care, I’m all the hands-on help he’s got?,” she asked. “I’m afraid so,” I answered.

Given this impossible choice, it’s no surprise that Rosalynn Carter only entered hospice near the end of her life.The Conversation

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Understanding Hospice

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

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

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

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

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

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

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

Destigmatizing Hospice

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

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

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

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

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

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

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

Pediatric Hospice Care

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

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

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

Planning Ahead

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

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

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

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

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

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

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

Choosing a Hospice Provider

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

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Understanding Palliative Care

— And when it may help

By Dr. Rachel L. Ombres AHN

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

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

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

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

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

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

What is palliative care?

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

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

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

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

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

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

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

Where can I receive palliative care?

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

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

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

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

How palliative care can help: One patient’s story

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

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

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

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

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

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