Category: Preparing for Death

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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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Why Some People Wait To Die Until They’re Alone

By Jennifer Anandanayagam

Dying alone usually has a negative connotation attached to it. This is probably why movies portray it as sad and heartbreaking. On the flip side, dying while being surrounded by friends and family is often thought of as a good death. The person was loved and made to feel secure as they passed on. They didn’t have to endure the pain of dying alone.

But what happens in the final moments of death is a subject that’s largely still being discovered. No one really knows for sure definite answers to the big questions like “Does your consciousness continue after you stop breathing?” or “Will you have a better death if you have loved ones surrounding your bed?”

Social researcher and death studies scholar Glenys Caswell from Nottingham University noted that, for some people, dying alone is something that they choose of their own accord (via The Conversation). One of Caswell’s studies, which was published in the journal Mortality in 2017, involved interviewing 11 elderly persons who lived by themselves and seven hospice nurses about their thoughts surrounding dying alone. While there was some belief among the hospice nurses that dying alone is not something they’d endorse, Caswell found that for the older people, “dying alone was not seen as something that is automatically bad, and for some of the older people it was to be preferred.” They preferred it to having their freedom curtailed or being confined to a care home.

They Might Die Alone To Spare Their Loved Ones Pain

Lizzy Miles — a Columbus, Ohio-based hospice social worker and author of “Somewhere In Between: The Hokey Pokey, Chocolate Cake and The Shared Death Experience” — is of the opinion that some people can choose when they die. She wrote in the hospice and palliative medicine blog Pallimed that people who choose to wait and die alone might be doing so out of concern for their loved ones.

“We have those patients who die in the middle of the night. We hear stories about the loved one who just stepped out for five minutes and the patient died. We may have even witnessed a quick death ourselves. I believe this happens by the patient’s choice,” wrote Miles. She added that this happens mostly in instances when the dying person is a parent. “I believe it is a protective factor,” she explained.

Henry Fersko-Weiss, a licensed clinical social worker and executive director of the International End-of-Life Doula Association, feels slightly differently about the topic. While he doesn’t discount the fact that some people might die alone, he shared in a YouTube video that people like feeling connected and safe before they pass away. Fersko-Weiss said that “because of the way we think about death, [we] feel that we’ll be a burden to loved ones” if we let them see us die. Sparing loved ones the pain of it all might be at the heart of the decision but this is something friends and family should have an open conversation about, he added.

Having An Open Dialogue With Your Loved One Can Help

No matter how painful those final moments might be, it can be a good idea to equip yourself with the right tools to have open conversations that foster understanding on both sides, say the experts. You might want to lean into what dying people want you to know about how they’d ideally want to go, and also assess your own emotions, cultural biases, and ideas around it. If you’re unable to broach the topic yourselves, enlist the help of hospice care workers or even a therapist.

It is possible that the person who is dying is concerned that the loved ones whom they are leaving behind will carry with them for the rest of their lives the burden of seeing them pass, shared Fersko-Weiss in the video. You could reassure them by saying something like, “Of course, we want to be there. It doesn’t matter how it looks or how it sounds or how emotionally difficult it may be to be present. It is part of our love for you that we would want to be there,” said the death doula.

How you choose to be present when someone you love is dying is a decision both the dying and those being left behind can arrive at together, per the experts. And, in the instance when your loved one chooses to wait and die alone, “openness created through discussion might also help to remove some of the guilt that family members feel when they miss the moment of their relative’s death,” added Caswell (via The Conversation).

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Hospice remains a blind spot for Medicare Advantage

By Maya Goldman

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.”

Complete Article ↪HERE↩!

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Terminal Cancer

— What Matters to Patients and Caregivers

By Megan Brooks

What’s most important to patients with terminal cancer and their caregivers?

New research found that patients and caregivers both tend to prioritize symptom control over life extension but often preferring a balance. Patients and caregivers, however, are less aligned on decisions about cost containment, with patients more likely to prioritize cost containment.

“Our research has revealed that patients and caregivers generally share similar end-of-life goals,” with a “notable exception” when it comes to costs, first author Semra Ozdemir, PhD, with the Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore, told Medscape Medical News.

However, when patients and caregivers have a better understanding of the patient’s prognosis, both may be more inclined to avoid costly life-extending treatments and prioritize symptom management.

In other words, the survey suggests that “knowing the prognosis helps patients and their families set realistic expectations for care and adequately prepare for end-of-life decisions,” said Ozdemir.

This study was published online in JAMA Network Open last month.

Patients with advanced cancer often face difficult decisions: Do they opt for treatments that may — or may not — extend life or do they focus more on symptom control?

Family caregivers, who also play an important role in this decision-making process, may have different care goals. Some research suggests that caregivers tend to prioritize treatments that could extend life, whereas patients prioritize symptom management, but it’s less clear how these priorities may change over time and how patients and caregivers may influence each other.

In the current study, the researchers examined goals of care among patients with stage IV solid tumors and caregivers during the last 2 years of life, focusing on life extension vs symptom management and cost containment, as well as how these goals changed over time.

The survey included 210 patient-caregiver pairs, recruited from outpatient clinics at two major cancer centers in Singapore. Patients had a mean age of 63 years, and about half were men. The caregivers had a mean age of 49 years, and almost two third (63%) were women.

Overall, 34% patients and 29% caregivers prioritized symptom management over life extension, whereas 24% patients and 19% caregivers prioritized life extension. Most patients and caregivers preferred balancing the two, with 34%-47% patients and 37%-69% caregivers supporting this approach.

When balancing cost and treatment decisions, however, patients were more likely to prioritize containing costs — 28% vs 17% for caregivers — over extending life — 26% of patients vs 35% of caregivers.

Cost containment tended to be more of a priority for older patients, those with a higher symptom burden, and those with less family caregiver support. For caregivers, cost containment was more of a priority for those who reported that caregiving had a big impact on their finances, those with worse self-esteem related to their caregiving abilities, as well as those caring for older patients.

To better align cost containment priorities between patients and caregivers, it’s essential for families to engage in open and thorough discussions about the allocation of resources, Ozdemir said.

Although “patients, families, and physicians often avoid discussions about prognosis,” such conversations are essential for setting realistic expectations for care and adequately preparing for end-of-life decisions, Ozdemir told Medscape Medical News.

“These conversations should aim to balance competing interests and create care plans that are mutually acceptable to both patients and caregivers,” she said, adding that “this approach will help in minimizing any potential conflicts and ensure that both parties feel respected and understood in their decision-making process.”

Managing Unrealistic Expectations

As patients approached the end of life, neither patients nor caregivers shifted their priorities from life extension to symptom management.

This finding raises concerns because it suggests that many patients hold unrealistic expectations regarding their care and “underscores the need for continuous dialogue and reassessment of care goals throughout the progression of illness,” Ozdemir said.

“This stability in preferences over time suggests that initial care decisions are deeply ingrained or that there may be a lack of ongoing communication about evolving care needs and possibilities as conditions change,” Ozdemir said.

Yet, it can be hard to define what unrealistic expectations mean, said Olivia Seecof, MD, who wasn’t involved in the study.

“I think people are hopeful that a devastating diagnosis won’t lead to the end of their life and that there will be a treatment or something that will change [their prognosis], and they’ll get better,” said Seecof, palliative care expert with the Supportive Oncology Program at NYU Langone Health’s Perlmutter Cancer Center in New York City.

Giving patients and caregivers a realistic understanding of the prognosis is important, but “there’s more to it than just telling the patient their diagnosis,” she said.

“We have to plan for end of life, what it can look like,” said Seecof, adding that “often we don’t do a very good job of talking about that early on in an illness course.”

Overall, though, Seecof stressed that no two patients or situations are the same, and it’s important to understand what’s important in each scenario. End-of-life care requires “an individual approach because every patient is different, even if they have the same diagnosis as someone else,” she said.

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.

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Reclaiming the D-Word

— In planning for end of life, we first need to be able to talk about it.

We all know we’re going to die, but it’s one of the few human experiences we don’t like talking about. How can we change that?

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Death—it’s a reality of life that on a certain level we know will come for us all, but one that in our modern world we have managed to push to the peripheries. The average lifespan for a Canadian in 2020 was a hair shy of 82 years – over 84 years for women and around 80 for men. This means we are living on average a quarter century longer than we did a hundred years ago, a fact we tend to forget about when we think about the institutions established in this country in generations past.

This coupled with the fact that multigenerational households are increasingly rare in this country means that for a great many Canadians, death is a remote concept that only rears its head upon the passing of parents, which increasingly takes place in the latter half of people’s lives. More than ever before, it has become easy to simply not talk about death and, when we’re forced to, do so in hushed tones and with euphemisms like ‘pass away’.

The upshot of this is that of Canadians under the age of 35, less than a quarter have a will and less than ten percent have drawn up powers of attorney. This is a precarious position to be in. Despite life expectancies being longer than ever, people still die all the time and at every age. Without these important legal documents in place, family members’ grief can easily be exacerbated by legal hurdles and interpersonal conflict.

Planning for end of life, however, requires braving the subject of death, something that feels unnatural to many of us. Sometimes it takes an unexpected, sudden death in the family or in one’s inner circle to bring the subject to the forefront.

A (Sort of) Cautionary Tale

Tania Jacobs’ story is a prime example of how the unimaginable can occur in an instant and a lesson in the importance of communication within families. A Calgary-based registered psychologist and mother of two children, aged ten and twelve, Tania lost her husband Trevor when she was 37. A sudden illness – invasive Group A Streptococcal disease – took him from initially calling in sick from work on a Friday to dying on a dialysis machine in hospital two days later.

So unusual were the circumstances of her husband’s death that, even within a young widows’ group she joined after her loss, she felt like something of an outsider.

“Within the group, about a third of the women had lost a partner to cancer, another third to suicide and other mental health-related deaths, and a further third to heart attacks, car accidents, and other relatively common occurrences,” she notes.

“And then there was me in this very narrow band of those who lost someone to freak illness. My experience represented a tiny minority within this group.”

Had her family dynamic been different, Tania could have ended up a cautionary tale. While she and her husband had had brief conversations about not wanting to be hooked up to a machine at end of life, there was no will or enduring power of attorney in place, and her husband’s finances were not particularly well organized. For example, he had an RRSP that was set up in his childhood with his sister as beneficiary, something he had not changed in adulthood.

“I was very lucky that there was no fighting among family members,” she asserts.

“I’ve heard plenty of stories where this is not the case. In my situation, my husband’s parents and siblings were completely on board with me being the sole beneficiary. In the case of my sister-in-law, when I contacted her about the RRSP, she immediately transferred the beneficiary status over to me. That said, it would have been smoother and easier had we had all those documents in place.”

She also benefited from the fact that her stepfather had been the personal representative of the will for both of his parents and was able to guide her through the estate process. A referral from a lawyer friend of hers to an estate specialist also meant she was able to navigate this process smoothly despite being, in her own words, a “grieving zombie who was barely able to function” and not having a will in place.

In the aftermath of her husband’s death, Tania got all her personal affairs in order, including a will, personal directive, and enduring power of attorney. Furthermore, she notes that many of the people in her inner circle did the same thing shortly thereafter.

“I know a lot of our friends took us as a cautionary tale and went and got this stuff sorted out,” says Tania.

“Many of our friends were like, wow, we don’t have a will! We don’t have any of that stuff in place either. As for my mom, who is a really organized human being who certainly had those documents in place, [she] took this as a sign that she needed to update everything. It’s like there was a ripple effect involving people in my life, where everyone took this as a sign to take some sort of action.”

She also intends to broach the subject with her own children.

“Now that my kids are moving towards adolescence, I see us having conversations about this stuff. They’ve already been through a lot in terms of grief counselling and whatnot, so they’re very familiar with death. Of course, I don’t want to scare them or get them worked up about the possibility of their mother dying, but it’s coming to be that time. Even explaining to them what this conversation was about, saying that I would be talking about daddy’s death and the preparation people need to do around that, was perhaps the beginning of that conversation.”

A Death-Adjacent Life

For Tania Jacobs, death was a remote concept until it struck her family out of the blue. For fellow Calgarian Marie Carlson, however, it’s been a reality of life for a long time and one with which she has become ever more comfortable. Marie is a retired former health policy specialist with Alberta Health Services with a background in medical sociology. She is now an energetic volunteer at Calgary’s Dulcina Hospice, the largest hospice facility in Canada west of Montreal, where she interacts daily with residents in the final months of life.

Marie’s introduction to death came early with the loss of her brother at age 31 to colon cancer when she was only 15. Her brother’s death led her to pursue a partial degree in theological studies in addition to her sociology degree and to dive into the subject of death and dying. Her interest in the subject stayed with her over the course of her career and influenced her decision to become a hospice volunteer following her retirement.

“I’ve always wanted to do this work,” says Marie of her volunteer role.

“Back when my brother died there wasn’t palliative care like we know today, and I’ve always wanted to help people live as well as possible at the end of their lives.”

In her volunteer work, Marie finds herself up close and personal with death daily. She notes that in her work, as well as in life, she does not shy away from the d-word that so many people replace with euphemisms like ‘pass away’. In the hospice setting, the word ‘death’ is standard parlance.

Given her longstanding acquaintance and interest in end of life, it’s hardly surprising that Marie takes her own end-of-life planning very seriously.

“I’d say I’m pretty prepared for death,” she explains.

“I’m very aware of my own mortality and I continue to get ready for end of life. I’ve done all my paperwork—my will, my personal directive, and my enduring power of attorney, and I encourage others to do the same. I’m also doing my ‘death cleaning’ right now. I’m of Swedish descent, and the Swedes have a tradition that they call ‘death cleaning’, where you clean out all your junk before you die. It’s a way of getting things in order so that there’s less work to pass on to your family when the time comes. I don’t want to wait until I’m too old, so I’m doing it now.”

Her relationship with death has also impacted her relationships with family and friends and the emotional presence she brings to her interactions.

“I’ve experienced a lot of deaths over the years,” she notes.

“My brother died. My parents are dead. My niece is dead. I’ve had a cat and a dog die. Some of my friends have died. I have a sister who is 87 and her health is starting to fail. We don’t get to this stage in our life and not experience death. Knowing what a difference companionship can make to a dying person and their family has affected how I engage with others. I think about my brother, who was only 32. His death really impressed upon me how important it is to just be there, to just be open and be present. It makes me mindful to spend quality time with the people I care about.”

Meanwhile, Marie continues to be positively impacted by her interactions with hospice residents and the palpable joy many of them exude at end of life.

“I’d say my biggest surprise working in a hospice setting has been the amount of laughter and joy you encounter. I know that probably sounds weird. There’s a lot of black humour that I hadn’t expected. Sometimes people say, ‘Gee, that must be a really depressing place to work. How could you go in there?’ But the amount of laughter that we have with our residents, families, hospice staff and other volunteers is unbelievable. Obviously, not every day is like that, but it’s like a little epiphany how beautiful this experience can be.”

“With hospice care, it’s essential to have a strong volunteer program with skilled and compassionate coordination, such as we have at Dulcina,” she further adds. “It’s the entire package of programs and volunteer support that enables us to do this valuable work.”

Talking About Death

Death—it’s a topic of conversation that never killed anyone, but one that many cultures avoid as though it did. Fortunately, a death positivity movement has begun to take shape in recent years, a movement that promises to take the stigma out of the subject and create a climate more conducive to end-of-life planning.

One of the most visible drivers of death positivity has been the growing worldwide phenomenon of Death Cafes. Founded by Jon Underwood and Sue Barsky Reid in the UK in 2011, the Death Cafe movement has since gone global, with gatherings now having been held in more than 80 countries. Death Cafes are get-togethers typically held in libraries, places of worship, and other public venues as well as actual cafes. They provide a safe space to talk about death and dying, which, in Underwood’s view, “helps people make the most of their (finite) lives.”

Death Cafes can also serve as a venue for talking about the importance of end-of-life planning. In Alberta, Covenant Health’s Palliative Institute has been promoting Death Cafe as such a venue, providing resources for current and aspiring Death Cafe facilitators while also producing publications related to advance care planning and end-of-life-related legal documentation for distribution at these events. One publication is My Wishes Alberta, a workbook that serves as a gentle introduction to end-of-life planning, encouraging readers to reflect on their most salient values and identify their wishes for if and when they succumb to a serious illness.

In the cases of Tania and Marie, it took an untimely death in the family to trigger inner reflection and outer conversations about death. This in turn leads to legal documents being put in place to ensure their own end of life will be as pain-free for family members as possible. The death positivity movement seeks to destigmatize the subject of death and create a culture wherein people don’t have to experience the unimaginable to ready themselves for the inevitable.

Complete Article ↪HERE↩!