Category: Elders

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Planning to die at home?

— Here are 5 things to consider first.

Many of us say that if we have to die, we’d like to die comfortably in our home. Luckily, hospice—a Medicare-covered model of gentle, holistic end-of-life care—is ready to help with that goal.

Maybe.

by Laura Kelly

At age 78, my divorced father was diagnosed with Stage 4 colon cancer. He later admitted that he’d skipped getting any colonoscopies. He was a savvy healthcare researcher and, via drug trials, controlled the spread of his cancer for four long years. Then came the day his doctor said, “There are no more treatments left, Larry. Call your kids and sign up for hospice. Today.”

If you’re hazy about what hospice is, as my family was, check out Medicare’s hospice page that details the conditions that qualify you for hospice care and what costs Medicare will cover. You might also check out a 2023 New York Times article that sheds light on how hospice functions today. The industry has traveled far from its grassroots, volunteer origins of 40 years ago.

By the time I was flying from New York to Michigan to “help out,” my busy brother David had made the executive decision to move my father from his cluttered condo to David’s larger family home across town. My brother’s wife, 9-year-old daughter and three large dogs were no doubt a bit flummoxed when David deposited my hospice-unready father into the ground-floor master bedroom. But my father and everyone else were united in wanting the proverbial “good death” in the comfort of a home, even if it wasn’t his.

What happened during that home hospice experience surprised me. After it was over, I compared notes with friends. It seems that what my family went through might not be typical. Still, it could be a portent of what’s to come as the baby boomer bulge meets the realities of understaffed hospice care. Here are five takeaways if you’re ever considering home hospice for a loved one—or yourself.

1. Research hospice options before you need them

As my father and family found out, the very end is much too late to think about hospice—both for taking advantage of hospice’s full psychosocial benefits and for finding out what you’re getting into.

The hospice provider, which had been suggested to my father by his doctor’s office, turned out to be severely overstretched. We had only four short visits from a hospice nurse—a different person each time—during the 11 fraught days of my father’s end-of-life passage. It was also impossible to get the hospice doctor on the phone to answer our ongoing questions. Even so, we could never find the time to research and switch to another organization.

Since events can overtake you at the end of life, spend an hour today learning which hospice providers operate in your area. AARP keeps an excellent updated page with facts about hospice, including questions to ask when you interview organizations. Your future self will thank you.

2. Know what equipment and services to ask for

Beyond the electric hospital bed, rolling bedside table and plastic commode that the hospice group delivered, my brother’s home was not equipped for a dying person. Side note: At the intake meeting where we met with hospice nurse No. 1 and a social worker, we all agreed that the bed was much too short for my 6’4″ father. He requested a replacement, but one never arrived. We should have kept asking.

We quickly found ourselves making daily runs to a nearby Target for more towels, more large and small pillows for propping up, more pajamas, cooling patches, ice packs, a small table fan that my father could angle, sheets, blankets, sippy cups and dry-mouth swabs, plus an intercom because my father’s voice weakened too much to call for us in another room. My credit card got a workout.

3. Be prepared to hire help

As much as we tried to make my father comfortable, it seemed impossible. He was plagued by restlessness and couldn’t sleep or be convinced to stay in bed. Someone had to be near him around the clock to prevent a fall in his weakened state.

After six sleepless nights, we called the hospice phone line yet again with questions about the situation, and a nurse on the line finally filled us in on “terminal agitation,” a not-uncommon occurrence at end of life for cancer patients, even though no one in our family had heard of it. She told us that this kind of metabolic restlessness was worse than pain because it could not be soothed by painkillers. “Call us again if you need to,” she wrapped up.

By then, we realized that our home hospice team was mostly voices on the phone, not the on-site caretakers we’d expected. A concerned long-distance relative emailed me: “Get yourself some nighttime help so you can sleep.”

I had no idea how to find good health aides at short notice, but it turned out that “good” wasn’t the issue. We just needed someone to sit near my sleepless father, so we caretakers could get some rest. I also needed time to coordinate events outside of hospice, such as lining up a funeral home to call when my father died. In the end, I pretty much handed over my credit card to three different aide services to help us patch together 24/7 coverage until the end.

Will you need expensive additional aides for home hospice? Maybe, so be prepared by getting the names of aide services and interviewing them at the beginning of the hospice process, so they’re just a phone call away if needed.

4. Someone needs to be in charge

Continuity of care was a big problem for us and my father. There was a revolving stream of new hospice personnel and eight different aides, along with a churn of visits from nearby relatives and phone calls from folks farther afield. Meanwhile, every day brought changes and challenges as the end of life approached.

It took me far too long to realize that neither my father nor the home hospice team were running the show; I was. In unfortunate timing, during these hospice days, my brother had been pulled away to manage an ongoing crisis at his company. Still, every night, David remained on call to help me or an aide. He was the only one who could support my tall father as he restlessly moved from bed to nearby chair to commode.

Needless to say, my brother was exhausted. After another of these nights, I emailed my two sisters what came to be known as “the bossy note,” telling them exactly what was needed from them beyond the occasional visits bearing baked goods. It was all-hands-on-deck time.

I suggest that upon hospice enrollment or before, everyone should agree on a point person. This coordinator would have the overview of the home hospice situation, be given the latitude to set the ground rules and make decisions, and be allowed to delegate whatever to whomever, as needed.

5. Hospice at home may mean a nonprofessional will be in charge of medications

One of the hallmarks of hospice is the comfort care provided. On the first day, as I followed the intake hospice nurse on her way out the door with my list of anxious questions, she stopped me by handing over what she called a “comfort box.”

I pried open the white cardboard box and saw a confusing array of vials, syringes and suppositories. I thrust the box back toward her. “This is all for you to use, right?”

“No, they’re for you,” she said. “If your father needs them, you can call us. Put the box in the refrigerator where you can find it fast.” Then she left.

I immediately regretted that I didn’t ask her to go over each and every medication and how to use it, recording her explanation using my cellphone.

Later on, when I hired the aide services to help us through the final days and nights, I found out the aides weren’t allowed by their companies to prepare the needed antianxiety and sedative medications, and they could only give them to the patient when directed by someone in charge, meaning me. If I wasn’t awake to direct them, my father wouldn’t get his comfort meds.

As my shaking hands prepared morphine syringes and crushed Ativan pills in the middle of the night, I thought, “I would never expect or want someone like me to do this for me.”

My advice: When you’re doing those early interviews with prospective home hospice providers, ask who will actually dispense the medications. Maybe you’ll find out the home hospice nurses will be there to do it. But in our case, they weren’t.

My father died on Oct. 25, 2015, after his 11 days of home hospice care.

Was it the good death my dad had hoped for? I’ve never shared this with my siblings, but I don’t entirely think it was. My father had always prided himself on being the problem solver, not the problem maker. While we tried to hide our distress, he couldn’t help but notice how unprepared his kids were to supervise this 24/7 medical undertaking.

One late night, as I lay awake on the king bed beside my restless father in his little hospital bed, he told me he was sorry about “all the trouble I’m causing,” as he put it.

“I didn’t imagine it would go like this,” he said quietly. “No help. No sleep. Not knowing what’s coming next. Thank you for everything you’re doing.”

I reached over and touched his hand. “Dad, I am so grateful to be here helping you through this after all you’ve done for us. Please don’t apologize. You’re no trouble at all.”

Later, I heard friends’ stories of their supported and peaceful experiences in dedicated hospice facilities. There, they could quietly share smiles and good memories, listen to music, even be served meals. A facility can perhaps more easily arrange quality-of-life options for the patient, such as expert bathing and therapeutic massages with oils. Most important, a facility would presumably be staffed with professionals who could administer the proper palliative medication. A place that’s designed and intended for end-of-life care clearly has some advantages.

If, however, you’re with the majority who would prefer using hospice in a familiar home setting, look into what’s entailed well ahead of time. Ensure that family or friends are willing and able to coordinate all the activities and decisions. Have a credit card ready for all the purchases and extra help you may need. And don’t make hopeful assumptions, as I did. Be proactive and ask the necessary questions, so you or your loved one gets the quality end-of-life care all of us deserve.

Complete Article ↪HERE↩!

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To ease my depression, I volunteered to help dying people

— As a hospice volunteer, I expected tears and anger. What I didn’t expect was the laughter and joy.

by Keri Wiginton

My 90-something friend is relieved as I help him collect coats. He’s taking a trip somewhere his family can’t follow, he says, but he doesn’t want them to get cold after he leaves. I keep packing even though his story doesn’t make sense, at least not to me.

Gray clouds catch his eye, and he switches gears to the weather. I ask him what else he sees out the window. He dives in and out of his past, joking and smiling along the way. He was quite the ladies’ man, he says with a wink.

Twice a week for more than a year, I’ve given my time to the dying. Most people I visit have Alzheimer’s disease or another form of dementia. As a hospice volunteer, I expected tears and anger. What I didn’t expect was the laughter and joy.

How did I get here?

It was my therapist’s idea.

A few years ago, my 14-year-old cat suddenly got sick and died. Something in me broke when I felt her stop breathing. Still reeling from the loss, I found out my stepfather had a fast-growing brain tumor. He died five months later.

I learned how different the day feels when you know it might be your loved one’s last, and every second felt saturated with significance.

I savored every dad joke, every spoonful of ice cream, every mundane movie night. And when I watched him unwrap Christmas presents for the last time, I felt hyperaware of how much I’d miss his tendency to tear up no matter how small the gift.

My low mood persisted long after his funeral but not because of my sadness. The experience shifted my perspective on life. Unlike prior depressive episodes, regular exercise, mindfulness meditation, antidepressants and avoiding alcohol weren’t enough to bring me back this time.

So, my doctor set me up with a goal-oriented behavioral counselor.

I told the therapist about my stepdad and that I felt a profound pull to help others process grief or make meaning before their death.

We agreed that volunteering in a hospice might be a good fit, but I felt too overwhelmed to get started. He said to take one small step each week.

I looked at the nonprofit’s website and noted the volunteer requirements. A few weeks later, I applied. It took me three months to go from thinking the whole thing seemed impossible to attending my hospice-care training session. I wouldn’t get my first volunteer assignment for four more months.

That first day, my heart raced as I nervously sat in my car outside the memory care center. I’d never done anything like this before, but I’m glad I willed myself to walk in.

After that, I relaxed into my new role visiting people who are dying.

I give caregivers a chance to nap or run errands. While they’re out, I get to socialize with their loved ones as we listen to big band music from the ’40s, play Scrabble or go outside to feel the warmth of the sunshine while we chat.

Many of the folks I spend time with have memory challenges, so conversations may take twists and turns. I’ve learned to explore with them whatever path they’re on, and we often have fun doing it.

I find immense value and grounding in offering companion care to someone who’s nearing the end of life. I look forward to it every week.

Health professionals in the United Kingdom routinely recommend so-called social prescribing, linking people up with something that matters to them, whether it’s working in a garden, at a museum, or in my case, hospice and memory care.

“People are sometimes scared to develop a relationship with someone who has dementia,” said Rebeca Pereira, a psychology master’s student at the University of Saskatchewan who studies relationship-building in long-term care settings. “But we found that volunteers see that the person is much more than the disease.”

Pereira’s research mirrors my experience. Plus, when I make someone’s day a little brighter, I feel warmth in my chest similar to what wells up during a meditation session called loving kindness, a mindfulness practice where I imagine sending joy out into the world.

My compassion leaves a lasting impression even if my identity doesn’t.

Stephen G. Post, a bioethicist at Stony Brook University and an expert in compassionate care and the relationship between giving and happiness, explained why.

“People with dementia can be very emotionally sensitive and they can pick up on that presence,” said Post, who explores this topic in his book “Dignity for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimer’s Disease.” “Just because someone’s linear rationality is compromised that doesn’t mean their consciousness is.”

I feel a sense of loss when people die, but our time together matters more because I know it’s short term. I also have found myself to be more present and less anxious, both when I’m volunteering and when I’m not.

I sleep easier at night and am less distracted at work. I have more energy to exercise and stronger shock absorbers for life stressors, including handling little problems such as someone cutting me off in traffic or big challenges like a family member’s Alzheimer’s diagnosis.

A cascade of chemicals such as dopamine, oxytocin, and other endorphins are probably responsible for the “helper’s high” that follows an act of kindness, said Post. These hormones are part of the mesolimbic pathway that responds to food or social rewards, he said, which helps humans cooperate and survive.

In other words, “you’re wired to feel better through doing this,” said Post.

At the same time, pathways that fuel depression symptoms may turn off, “including feelings of bitterness, hostility, rumination and other destructive emotional states,” Post said.

I feel more confident in other areas of my life because I feel successful at volunteering.

“This sense of competence may boost your self-esteem so that when stressful things happen, you feel better able to cope with them,” said Ann-Marie Creaven, an associate professor of psychology at the University of Limerick in Ireland.

We also have a fundamental need to belong to a group or to feel “that we’re important in someone’s life,” said Creaven. And this social connectedness piece may hold the key to how volunteering eases depression for people like me.

My social anxiety skyrocketed after the pandemic. But volunteering offered a structured, time-limited way for me to get out of the house. The more I did it, the more comfortable I felt in my role and around other people.

Because I found hospice work so meaningful, I began volunteering every other week during the school year to help grieving children explore the death of a parent through therapeutic play.

There, I bonded with a group of volunteers. We checked in with each other before and after each session, away from the kids.

Dana Basch, a licensed counselor and community grief specialist with Agrace Grief Support Center in Madison, Wis., where I volunteer, told me there is something “sacred” about coming together for a common purpose as personal as grief.

“There’s value in being able to help somebody else who’s going through something that you went through,” said Basch. “That absolutely helps volunteers heal.”

I also found that helping kids use play to work through their feelings around death can be joyful and, well, fun.

“There’s this idea that grieving kids are sitting around a circle crying,” said Jessie Shiveler, Agrace’s community grief manager. “People don’t understand that there’s laughter here, there’s smiles, there’s a connection.”

I developed a greater sense of peace and purpose after several months of face-to-face volunteering for two to four hours a week, which lines up with the suggestion of two hours a week from Post.

A caveat is that acting altruistically probably won’t trigger the same reward pathways for someone who feels forced into it. And it’s possible to overdo it.

“If any volunteering or care behavior gets to be too much, it can become a stressor in itself,” said Creaven.

According to Post, volunteering for health is kind of like exercise. It doesn’t work for everyone, but most people who do it find a benefit.

“I don’t think there are any guarantees on happiness advice,” Post said. “But I think that you’re better in the long run if you’re reasonably generous and kind.”

Complete Article ↪HERE↩!

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The Positive Death Movement Brings Comfort to the Dying and Their Families

— Most people associate the word doula with the beginning of life, not the end of it. But end-of-life doulas have become trusted sources of support.

Ed Nolley on his favorite bench, honoring veterans, at Gilchrist hospice.

By Christianna McCausland

When Ed Nolley arrived at the bedside of the 95-year-old woman, she was actively dying. Given her advanced age, she had no friends and few family members left to lean on. Her daughter, who lived on the West Coast, was rushing back to Baltimore to be with her, but time was short. In the meantime, the nursing home reached out to a social worker at Gilchrist, one of the largest providers of palliative care in the region. They sent Nolley, a volunteer end-of-life (EOL) doula, to keep vigil with the woman in the daughter’s absence.

“As soon as I arrived at her bedside, the nurse called the daughter, who was stranded in Chicago, and let her know that ‘a young man was sitting with her mom and would stay with her until she arrived,’” says Nolley, who, at 77, laughs at the description. “The mother did not make it before her daughter arrived, but I stayed at the facility until she did. The appreciation was such that I will never forget.”

When Nolley tells friends at parties that he’s taken up hospice work in retirement, “people just scatter,” he says, wryly. While it may not make him popular socially, Nolley says working with people at the end of their lives is extremely rewarding.

“Hospice is not a dirty word,” he says. “Hospice helps patients and family members go through the dying process in the way that that person and the family want them to go. To go in the way you want to go is a beautiful thing.”

Most people associate the word doula with the beginning of life, not the end of it. If you have any familiarity with the term doula at all, it is likely a birth doula, a person who provides support before, during, and shortly after delivery. This nonmedical care may involve assisting with breathing and massage or acting as an intermediary between the person delivering and medical providers.

But in the past few decades, the doula world has exploded. There are now postpartum doulas, transition doulas (to assist during gender-affirming transition), abortion doulas, and fertility doulas. Doulas can be paid or, like Nolley, work as volunteers. EOL doulas, who emerged in their modern form in the 1990s, “are non-medical companions to the dying and their families,” according to the End-of-Life Doula Council.

In the first half of the last century, the vast majority of Americans died at home. Fast-forward to the 1990s and that trend reversed, with most people dying in some sort of facility. That’s created a society so distanced from death that we no longer understand how to offer support to the person experiencing it and their loved ones.

“We have generations of individuals who haven’t seen a loved one die at home,” says Douglas Simpson, executive director of the International End-of-Life Doula Association (INELDA). “That creates a culture where we do not talk about death. So how do we normalize dying? With more knowledge, individuals can have complete control over how they die.”

Nolley was drawn to eldercare after leaving a career in banking—he was senior vice president at Wells Fargo—and the U.S. military. Growing up, he worked during the summer as a nurse’s orderly at Keswick, a senior care facility. It was there he first encountered a death doula and was taken by the work. In retirement, Nolley became one of the approximately 60 volunteer EOL doulas at Gilchrist.

“A doula is a person who has a ministry of presence,” Nolley explains. “Presence in terms of the patient, presence in terms of the family before and after. We do not administer medicine; we provide peace of mind and assurance to the patient and family that there is someone there.”

How does that play out practically? Typically, a doula is requested to provide company to a dying person so that person is not left alone if, for any reason, the family isn’t present. Perhaps their family is worn out from keeping vigil and wants to feel comfortable knowing their loved one has someone with them while they get something to eat, catch a quick shower, or go home to get some sleep; perhaps the family does not live locally or is estranged; some people simply have no family left. Whatever the reason, “I do not believe anyone should die or experience dying alone,” says Nolley.

“WE HAVE GENERATIONS OF INDIVIDUALS WHO HAVEN’T SEEN A LOVED ONE DIE AT HOME.”

Depending on their training and the person’s wants, some doulas may do a project to draw a patient and family together around happy memories, like organizing photo albums. Others might offer guided meditation, information on funeral needs or, if the dying person wants a specific ritual at death—perhaps something as simple as a piece of music playing in the room—the doula may organize it. But being present is fundamental to anything else a doula can do.

Wendy Kobb is a clinical social worker who has worked at Gilchrist for 17 years and does facility care at regional nursing homes and assisted living centers. Kobb explains that when clinicians determine a person has a week or less to live, an impending death protocol is put in place, which includes visits from staff—nurses, clergy, social workers—every day, and can include a volunteer doula.

“Particularly in the facilities where I work, they aren’t living with family, so the peace of mind having a doula there provides is a great comfort,” she says. “Sometimes it’s more about the family than the patient.”

If it’s an inpatient visit, Nolley first goes to the nursing station, where he’s briefed on the patient’s medical condition and any specifics about them. Is the person a veteran? A musician? A sports fan? Does the family say the person appreciates touch and therefore may want their hand held? Would they enjoy being read to? Are they religious?

“Then I go into the room and introduce myself and explain that ‘I’m going to be sitting with you,’ even if the person isn’t awake,” says Nolley. “The sense of hearing is the last sense to go, so I always believe they can hear me and are listening.”

Ironically, Nolley says he “tries to keep it light,” maybe talking to the person about where they went to high school or their military service. (A veteran himself, Nolley takes a personal interest in ensuring veterans’ wishes at end-of-life are honored.) If it’s late at night or in the pre-dawn hours, he’ll dim the lights, turn off the television if a family member left it on earlier in the day, and just stay in the stillness.

“When you are sitting with a person, you are totally engaged with them,” he says. “You aren’t watching TV; you aren’t scrolling your phone. It overcomes your brain and your heart.”

Most of the people Nolley sits with are elderly, though he has done a few visits with pediatric patients. He admits it’s harder when a patient is young, but his intention is the same. “The mindset is always, ‘I’m going to sit with this person to help them make this transition in a positive way.’

“It’s an amazing experience, done right, to sit with a person who is dying,” he says.

There are organizations that help people get comfortable with that experience and the doula role. INELDA is a member-based nonprofit that offers EOL doula training and advocates for the calling. Simpson explains that there’s no magic to what a doula does.

“This work has been happening for eons, but then we industrialized birth and death and took it out of the home,” says Simpson. “Now we’re bringing it back.”

It’s not incidental that Simpson references birth and death in the same breath: EOL doulas emerged from the birth doula movement. In the 1960s there was a backlash against the highly medical interventionist approach to birth, which led to the growth of midwives and more natural birthing practices. The hospice movement also gained steam in that era when a nurse, Cicely Saunders, opened the first hospice in 1967. While the origin story of EOL doulas is more a complex web than a linear timeline, a birth doula named Phyllis Farley is credited with conceiving of the first volunteer death doula program at a NYC hospital in 2001. Elisabeth Kübler-Ross, author of the groundbreaking 1969 book On Death and Dying, and former hospice nurse Deanna Cochran, were also influential in the death doula movement.

Birth and death are the two most important and inevitable events in a human life and have much in common. And just as a birth doula has information and experience to share, part of what EOL doulas bring to the bedside is knowledge about death and dying that can be comforting. While it may be easy to think an EOL doula is depressing or macabre, no one would ever recommend someone give birth alone, ill-informed, and without support—why should death be any different?

“IT WAS LIKE THE QUIET JUST BEFORE A SNOWFALL.”

Simpson learned about EOL doulas from a midwife who assisted at the birth of his son. That, combined with being present at his own father’s death, lit the spark that informed his engagement with INELDA.

“I remember the quiet peacefulness,” Simpson recalls of his father’s death. “It was like the quiet just before a snowfall.”

Like Nolley, he struggles to put the experience of being with a dying person into words. “By being present you are honoring that person,” he says. “It’s an honor and it is powerful. I can’t wrap words around the value of it.”

To excel as an EOL doula, Nolley says a person needs to be comfortable with being in the presence of active death, but they also need to be comfortable with family dynamics. Relatives bring plenty of baggage to the deathbed and it’s up to the doula not to judge or interfere, only to keep the peace so the person passing has the calm they deserve.

Compassion. Presence. Calm. Intuiting needs. They’re hard skills to teach, but many are trying. INELDA offers a basic-training program that lasts 40 hours. Simpson says they’ve trained over 5,600 people since INELDA formed in 2015, 155 in Maryland. At Gilchrist, training occurs over two weekends and it is preferred that doulas have documented time doing home visits with hospice patients prior to the course. It’s impossible to know how many active EOL doulas exist, as there is no official, universal accrediting body (though the National End-of-Life Doula Alliance has created best practices and proficiency assessments).

Simpson says if someone is looking for an EOL doula, make sure the person can document they’ve been doing the work for several years and that they have some form of training. The doula also needs to be a good fit for the personalities of the dying person and the family.

Kobb says that most of the staff and volunteers at Gilchrist are people who have experienced a death—maybe a peaceful one, maybe one less so—and were inspired by that to get into this work to ensure that others have the best experience of dying possible. With a doula, the vigil of dying can have some peace, dignity, even humor. Kobb says the doula facilitates whatever will make the person or the family comfortable in that moment, whether it’s talking about their career or family, listening to music, reading from the Bible, or reading from the latest bestseller.

“Hospice is very interdisciplinary, we all have our roles and we’re all connected; the nurses have the clinical piece, the social workers have the emotional piece, the chaplains have the spiritual piece,” says Kobb. “What I’ve found is that doulas get to focus on the joy.”

Nolley is a pretty joyful person, jovial and chatty. What he’s learned from being present with so many people at the end of life is not surprising but still a good reminder. “I have come to realize the value and importance of each day we have,” he says.

What might surprise people, however, is his lesson that dying should be—and can be—a positive experience and the fitting ending to a life well-lived.

Complete Article ↪HERE↩!

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Older people who are homeless need better access to hospice and palliative care

A core focus of palliative care is on easing symptoms and increasing quality of life for people who have a serious or chronic illness, and not solely for those who are dying.

By , , &

Most people may not wish to devote much time to thinking about their death. However, it’s an unfortunate fact that the entry point into experiences or conversations around death and end-of-life care can happen abruptly.

An unexpected death or a terminal diagnosis can leave people ill-equipped to navigate what often feels like uncharted territory of navigating end-of-life care, bereavement and grief.

The challenging realities surrounding end-of-life care are especially difficult for older people experiencing homelessness. For these older adults, intersectional and compounding experiences of oppression, such as poverty, racial disparities and ageism, create barriers to accessing hospice care.

Misconceptions about hospice care

The need for end-of-life and palliative services for unhoused people will likely continue to grow as the population experiencing homelessness grows and ages.

Currently only 16 to 30 per cent of Canadians have access to hospice and palliative care services, and 34 per cent of Canadians are not clear on who is eligible or who should utilize hospice services. In response, May 7-13 marks National Hospice Palliative Care week, which is aimed at increasing awareness about hospice care in Canada.

senior man sitting in chair and talking with a health-care provider wearing scrubs and a stethoscope
Hospice care is provided in a number of settings, including in patients’ homes.

The misconceptions about hospice care have had a direct impact on the engagement of services for the public, but also for Indigenous communities and for older adults experiencing homelessness.

Efforts to increase awareness about hospice often neglect the most vulnerable populations. Future efforts must merge education and awareness with intersectionality, which takes into consideration the intersections of inequities that impact unhoused older adults.

Hospice care focuses on addressing the full spectrum of a patient’s physical, emotional, social and spiritual experiences and needs. A common misconception is that hospice is exclusively a location or place where people go to die. Contrary to this notion, hospice is a service that is provided in various settings including within one’s home, long-term care facilities, hospice centres or within a hospital.

End-of-life care

While many Canadians prefer to die at home, older people experiencing homelessness do not have the same opportunities for end-of-life care options, and as a result many unhoused older people die in the hospital or institutional settings.

Family and friends often play an essential role in caring and advocating for a loved one during their end-of-life process. We can only hope to have loved ones by our side during these final stages; however, that is not the reality for many unhoused community members who do not have the option to die at home with loved ones.

Older people experiencing homelessness are especially vulnerable due to limited family or social support networks. Lack of social support can result in unhoused older people feeling isolated and fearful about dying alone or anonymously.

A core focus of palliative care is on easing symptoms and increasing quality of life for people who have a serious or chronic illness, and not solely for those who are dying. Palliative care can be a valuable form of health care for older people experiencing homelessness, as it can offer a tailored approach to managing multiple chronic or terminal illnesses, which are prevalent among unhoused older people.

Palliative care that takes place in a hospital setting can decrease end-of-life care costs by nearly 50 per cent by reducing intensive care unit admissions and unnecessary intervention procedures.

We believe it is valuable to consider that if end-of-life care costs were reduced by using palliative care practices, the cost savings could be used to fund services that directly support unhoused older adults, such as increased affordable housing options.

Aging in the right place

As members of the Aging in the Right Place project research team at Simon Fraser University, we are working to better understand what aging and dying in the right place means to unhoused older adults in two sites providing end-of-life care in Vancouver.

May’s Place Hospice, which is in the Downtown Eastside of Vancouver, provides end-of-life care for community members in that part of the city. May’s Place has created a communal, home-like environment with private rooms, meals provided three times a day, 24-hour nursing care, a smoking lounge and family gathering space.

A person in a hospital bed looking out a large window with a mug in their hands.
Palliative care that takes place in a hospital setting can decrease end-of-life care costs by nearly 50 per cent.

Another inpatient hospice setting in Vancouver is Cottage Hospice, located in a 1924 heritage building. Patients have a view of the North Shore mountains and are close to the water. Cottage Hospice and May’s place provide the same types of hospice palliative care support, and both care for older patients experiencing homelessness, but serve different populations based on their location and setting, demonstrating that hospice and palliative care is not a one-size-fits all approach.

The Aging in the Right Place project captures the perspectives and lived experiences of older people experiencing homelessness through integrating photovoice interview research methods as well as data collection methods that focused on the hospice setting, the neighbourhood, and experiences of staff who work to support unhoused older people. Photovoice is a method used in community-based research in which participants use photo taking and storytelling to document their own perspectives and experiences.

In the Vancouver area where we work — also known as the land that belongs to the Skwxwú7mesh (Squamish), xʷməθkwəy̓əm (Musqueam) and Səl̓ílwətaʔ/Selilwitulh (Tsleil-Waututh) people — and throughout the province, colonization and colonial medical models have had lasting and detrimental impacts on Indigenous knowledge and traditional practices around death and dying for First Nation communities.

One example of these impacts is that current hospice models may not reflect culturally relevant care models. Hospice organizations throughout B.C. should prioritize increasing policy and practice for Indigenous groups to ensure safety and culturally relevant care are implemented. Ensuring accessibility to hospice and palliative care is one step towards dismantling these barriers for Indigenous populations.

B.C. can turn to the Palliative Education and Care for the Homeless (PEACH) service fostered by Inner City Health Associates (ICHA) in Toronto as an example. PEACH is taking a diverse and innovative approach to providing palliative care among the homeless and vulnerable populations, including Indigenous communities and older adults. Innovative and culturally sensitive services such as these, are a step in the right direction to providing better end-of-life care to older adults experiencing homelessness.

It is crucial that we make hospice and palliative care services available to all community members, especially with the aging population and an increase in chronic illnesses throughout Canada.

In addition to supporting community members, hospice and palliative care should focus efforts on tailoring approaches to provide culturally relevant care, increasing staff education about the lived experiences of older people experiencing homelessness, and creating safe and accessible services in B.C. for marginalized communities.

We must actively dismantle misconceptions about the role of hospice and palliative care through education and awareness to facilitate appropriate service delivery and use for diverse populations.

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Conscious Aging

— A new paradigm to enhance senior living. Embrace aging as a gift.

By John Ritchie

Conscious Aging: to experience senior aging as more a gift and less a burden, and many burdens as also gifts.

Senior living, with retirement or part-time work, may bring more free time, less work stress and more choices for what you want to do. It can also at times feel lonely, or leave one feeling depressed or anxious because of the loss of work and work community, diminished physical abilities and social contacts, and decreasing accomplishments, recognition, usefulness and felt importance. I see Conscious Aging as a special combination of mutually enhancing experiences and practices uniquely relevant and available to seniors.

Conscious, in this context, means to intentionally be more mindful and present, to enhance our awareness and connections, or open our mind and heart. “Inner Work” is the primary practice and relationships become more important than accomplishments. Through increased exploration, self-reflection and compassion, we can experience a shift in our interests, values and needs, and greater acceptance, appreciation and enjoyment of senior living. Conscious Aging is focused not on what we should believe or externally do, but how to be and experience life.

I am suggesting that our present “successful” aging and “positive” aging models or guidelines for senior living support a paradigm that primarily focuses on external criteria and goals. It is common for seniors to talk about, and identify with, their travels, recreation, fun activities, entertainment interests, past accomplishments and children/grandchildren activities. Focusing on external-based goals, possessions and activities tends to not find fulfillment or happiness beyond short-term pleasure; and avoids directly exploring and finding “positives” from our “negative” senior sufferings, losses and limitations. Successful models were more important and helpful for us when we were young adults and middle age (e.g. finding a good job, spouse and career; and creating a successful family, comfortable home, active social life). These external-based models now tend not to align with our internal senior shifts in interests, values and needs; nor satisfy our increased senior yearnings or utilize natural aging experiences.

I am advocating for what I’m calling “Enhancing Awareness and Connections” as a quality or process of how to focus our attention and effort, to be applied to all components of Conscious Aging. All of senior aging is our curriculum. Conscious Aging has been applied to various components, or “what” to focus our attention and effort on. Some of these components include 1) conscious eldering, 2) bringing closure to life, 3) preparing for dying and death, 4) conscious senior service, 5) Conscious Villages or co-living, and 6) living life’s purpose and meaning.

I. For those of you who are already seniors, see if you resonate with some of the listed common shifts from middle age to senior age in interests, values, needs or roles. These are often due to, or facilitate, “inner work” and increased awareness and connections, that come with senior aging. “Living more from the ‘inside out’ rather than from the ‘outside in’.” “It’s not what happens to us, but our relationship to what happens.”

Doing to Being … Staying Busy to Slowing down … Intensity to Intimacy

Holding On to Letting Go … Past/Future to Present … Seeking Pleasure to Appreciation

Outcomes to Relationships … Competition to Cooperation … Self-Centered to Selflessness

Learning to Understanding … Criticalness to Empathy … Distractions to Presence

Head to Heart … Fairness to Compassion … Accomplishments to Contributions

II. See if you resonate with some of these increased senior “yearnings” as you become more aware of what “pulls” you rather than responding to what has “pushed” you in the past. Yearnings support “inner work” or enhanced understanding and relationships, and Conscious Aging. “We want to know our essential nature or essence, or to go from self to soul to spirit.”—Kathleen Dowling Singh. “The second half of life is about restoring wholeness.”

Find Life’s Meaning … Clarify My Purpose … Understand Spirituality … Know Thy True Self

Become Comfortable With Dying … Want Deeper Relationships … Connect to Everything/Divine

III. See if you resonate with some of these natural senior aging experiences, which support and enhance inner work or greater awareness/understanding and connections/relationships, and thereby Conscious Aging. “Senior aging is not a problem we need to solve, but a stage of life to be fully experienced.”

Slowing Down … Solitude … Silence … Letting Go … Patience … Acceptance

Being in the Present … Calm … Forgiveness … Simplifying … Humility … Vulnerability

Intentional Living … Surrender … Withdrawal … Selflessness … Gratitude … Appreciation

IV. As you will notice, the following intentional “inner work and internal practices” overlap with natural senior aging experiences and what seniors commonly experience as middle-age to senior-age shifts in interests, values, and needs, to further enhance Conscious Aging. “We can’t choose or control the circumstances of our age, but we can choose the quality of awareness we bring to those circumstances.” “Your compassion may or may not change others, but it will certainly change you.” “When life is short, make it broader and deeper.”

Calm, Curious, and Compassionate … Being in the Present … Slowing Down … Silence … Solitude

Inclusion … Receptiveness … Letting Go … Acceptance … Appreciation … Gratitude … Respect

Patience … Selflessness … Seeing Beauty … Vulnerability … Humility … Empathy … Mindfulness

V. We can apply inner work and internal practices to common senior aging negative experiences to access and experience positive thoughts, feelings, and experiences. Our struggles become portals for understanding, growth and healing. “There are some things you can only learn in a storm.” “Until we suffer, we won’t look deeply for something more to learn.”

For example, if you are feeling sad and lonely, frustrated and stuck, or very ill and tired, direct your attention inward and internally slow down in silence to become calm, curious and compassionate. Direct your attention to the present, which will help you let go of future and past attachments or distractions. You will then notice how you can see broader and deeper with greater presence, understanding and loving kindness. This will help you notice what moves you or brings you joy and what you appreciate in the moment or about others and yourself. For example, you’re stuck in bed, and you shift your attention from what you can’t do, to what you can do, enjoy or appreciate, such as sight (notice beauty, watch movie), sound (listen to music, birds outside), or touch (pet your dog, give self a massage). You can shift attention to relationships and initiate or schedule more frequent and closer connections- longer talks, phone calls, Zoom meetings, texting, Facebook, or invitations to visit you. It’s now more about connections, harmony and wholeness, than about individual accomplishments and success.

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How to Help a Loved One With Alzheimer’s or Dementia

By Victoria Pelham

Watching a loved one face dementia is often heartbreaking and disorienting.

They may forget where they are, repeat themselves, or get confused and agitated. Over time, as memory disorders damage cells in the brain and nervous system, they’ll need someone to care for them. Their speech, personality and thinking can also shift. There might even come a day when they don’t recognize you.

It’s called “the long goodbye.” While groundbreaking new medications could slow Alzheimer’s disease progression, there is still no cure for the estimated 6.7 million Americans with the condition, according to the Alzheimer’s Association.

On average, a person with dementia will live about 10 years or more after diagnosis, said Zaldy Tan, MD, director of Cedars-Sinai’s Memory and Aging Program, medical director of the Jona Goldrich Center for Alzheimer’s and Memory Disorders, and the Carmen and Louis Warschaw Chair in Neurology. Knowing what to expect can help you guide your loved one through those years with dignity.

Respect their wishes

Speak to your relative as early as possible in their illness, while they can still make decisions, about their plans and desires for end-of-life care and their finances—and honor them fully, Tan said.

“Just because they have dementia doesn’t mean they don’t have the right to live the way they choose to,” he said.

Losing independence can be one of the most challenging parts of a memory disorder.

“The trick is knowing how they liked to live before their illness,” he added.

When caring for or visiting with a relative with dementia, try to continue familiar activities they enjoyed. Did they often spend time with friends? Schedule regular meetings with one or two friends weekly or monthly. Did they have a sweet tooth? Then don’t cut out all sweets. Instead, space them out with healthier fruits and vegetables.

“Just because they have dementia doesn’t mean they don’t have the right to live the way they choose to.”

Dementia patients lose short-term memory first

In its initial stages, Alzheimer’s disease often causes patients to lose household or personal items, such as glasses, or to skip important appointments and tasks.

Families can help by offering cues, including placing labels on drawers, cabinets and doors to tell what’s inside and using calendars for medication schedules, meals, doctor’s appointments or due dates for bills.

While neurological diseases block these newer memories, old ones can resurface.

“Sometimes people revert to the past because that’s what’s accessible to them,” Tan said.

Their house and loved ones look different than they remember and therefore unrecognizable, and they might try to return to that past life in an attempt to “make sense of the world,” he explained.

Meet your loved one in their truth

There’s no need to correct them every time they believe or say something inaccurate—and it can do more harm than good.

If the person thinks they’re going to see a friend who died 10 years ago for a poker party, it will just upset and confuse them to mention the death. They’ll also likely forget within a few minutes.

“What does it accomplish?” Tan said. “They may not have the capacity to understand. Their reality is different from yours.”

Play along or change the topic, he suggested.

Use simple, direct and slow communication with yes and no questions (asked one at a time) and eye contact—in a quiet place with few distractions, the Alzheimer’s Association recommends. Visual and sensory signals like touch or pointing can also help you engage.

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How to talk about end-of-life arrangements with aging loved ones

By Karen Garcia

Amy Pickard wants you to talk about death. Specially, she wants you to make your healthcare planning and end-of-life arrangements known to your loved ones.

She knows that talking about death is going to make most people squirm. But the Southern Californian, who runs the end-of-life consulting company Good to Go!, says an awkward but respectful conversation now lessens the grief of a loss when the inevitable happens and allows people to honor a deceased loved one’s wishes.

“I tell adult children to tell their parents, ‘Hey, I’m getting organized with all my advance planning, and I just realized that if I don’t know what I want, you guys certainly wouldn’t know,’” she said. “‘And then I thought if something happens to you guys, I wouldn’t have a clue what to do, and that terrifies me.’”

For some people, it comes from a fear of dying, said author Cameron Huddleston. She said having to talk about end-of-life arrangements feels like being forced to think about mortality.

“However, avoiding the subject doesn’t mean you can avoid the inevitable,” she said. “It just means that you probably won’t have a plan for your death, and you’ll make things harder for those you leave behind.”

Why we need the death talk

Pickard and other advocates for end-of-life planning find that sharing their personal experiences helps normalize the conversation. Pickard shares with clients her experience of grieving the loss of her mother, who died unexpectedly at age 67.

“So I’m in the wilderness of grief, and at the same time I had to suddenly be an accountant, a florist, a detective, a travel agent, an estate appraiser and just all these things. And I was none of those things,” she said.

Her mom didn’t leave any instructions or wishes. Pickard described the work of wrapping up her mother’s life as overwhelming emotional labor.

In the midst of grieving a parent’s death, you might also have to plan the memorial, end monthly magazine subscriptions and notify others of their death. It’s not easy to juggle these tasks or final wishes if you don’t know what someone wants or where their information is stored.

That’s compounding grief with tasks that are frustrating in the best of times. To avoid it, you’ll have to have a difficult conversation that a parent might not be ready for. Asking if your parent would prefer to be buried or cremated (or something else entirely) could elicit responses like “I’m not that old” or “Why, are you trying to get rid of me?” No, you aren’t, but you can’t be their advocate without knowing what they want.

“It’s OK to acknowledge that the topic is uncomfortable, but you could say that you would be even more uncomfortable making arrangements for them without their input,” Huddleston said.

What do you do when someone dies?

Because we find death so hard to talk about, there are probably lots of things people wonder but don’t know. We have answers.

Not having a parent’s healthcare wishes and end-of-life instructions could leave a child wondering whether they made the right decisions.

It can also be an overwhelming experience to sort through a person’s belongings for information.

When Pickard’s mother died, she had no directions to follow. The minute she arrived at her mother’s condo in Chicago to cancel the utility bills and take care of other death duties, Pickard realized that she didn’t know the name of the electric company that kept the lights on.

“I would have given anything to talk to my mom again,” she said. “Not to tell her I loved her, but to get her Wi-Fi password.”

At the end of the day, having this information at the ready allows people to focus on love, Pickard said — how much that person was loved and how much people loved them.

This future peace of mind extends to the person who made their end-of-life wishes known. Pickard says these instructions aren’t just mundane bill canceling. For an adult child, it can be the last time a mother, father or guardian takes care of them.

Huddleston added, “Think of letting your family know what your final wishes are as a gift — your final gift to them. You’ll make it easier for them during a difficult time by having a detailed plan that they can follow.”

Starting the conversation

There isn’t one right way to approach this conversation. It really depends on whom you are talking with.

If you know your person doesn’t like to be taken by surprise, give them a heads up, said Kate DeBartolo of the Conversation Project, an initiative of the Institute for Healthcare Improvement. For example, DeBartolo said, if you’re planning a two-week visit with your parent, let them know beforehand that this topic is on your mind and that you would like to talk about it with them.

This gives the person the opportunity to think about what they want if they haven’t already.

You can sit down and talk about it over coffee or sprinkle it into everyday conversation when it feels natural.

If you’re watching a TV show or movie that depicts a funeral, that could prompt the conversation. You could say, “That made me realize I’m not sure of what you would want in that situation” or “Do you agree with the decision that character made for their parent?” DeBartolo said.

It could be a one-on-one conversation or it could be done with several people.

“I heard a woman who said she made desserts for her family at Thanksgiving and she held them all hostage and said, ‘No pumpkin pie until you tell me how you want to die,’” DeBartolo said. “And everybody would go around the table and talk about it, and that worked for her family.”

Having the conversation

Before you broach the subject, DeBartolo wants you to keep in mind the following:

  • Your questions won’t be solved with one conversation. The more you discuss it, the easier it will be for someone to talk about and share their thoughts.
  • Don’t wait until the end of someone’s life to talk about their wishes. There’s a misconception that this conversation should happen with older adults. DeBartolo argues that everyone over 18 should get their arrangements in order or at least start talking about it. Keep in mind that the information will need to be updated whenever you move, get married, divorced or have a child.
  • Don’t start the conversation with financial questions. You might give a person the wrong impression — that you only care about their money.
  • Be an active listener. The person you’re talking with might not give you a straight answer. DeBartolo said a grandmother might say that she wants “home” to be a part of her end-of-life care. Ensuring that Grandmother is at home might not be feasible, but “home” could mean having home-cooked meals, living in a facility that allows her cat or having personal effects with her.

Lastly, when you’re ready to reach out to someone, remember to frame the conversation with compassion. This doesn’t have to be a painful talk, DeBartolo said. It can be loving, a time to share memories.
In the conversation, Huddleston said, find out the following information at the very least:

  • How the person wants their remains handled. If burial is their choice, ask if a plot has been purchased or where they would prefer to be buried.
  • What type of memorial service they want, including music choices and who will speak.
  • The names and contact information of the people they would like to be notified of their death.
  • Information for the obituary.
  • The location of wills, trusts and any life insurance policy.
  • A list of assets and accounts, including things like the names of their utility companies — and their computer login and Wi-Fi information.
  • Any specific instructions for how they want heirs to handle their inheritance.
  • Arrangements for children or pets.

Some people will never want to talk out loud about this, and DeBartolo said that’s OK too. Let them know you’re open to hearing how they’d like the end of their life handled in any way they feel comfortable communicating it. If they can send you an email or a text of a few instructions or tell you where their important documents are, that can be enough.

Resources

The Conversation Project has a free starter guide and focuses on end-of-life healthcare.

Good to Go! sells a “departure file” and offers consulting services in a private or group setting. The latter is called “Good to Go! Parties,” an upbeat gathering to talk, eat, drink and fill out the departure files.

CaringInfo, a program of the National Hospice and Palliative Care Organization, has guides and resources to help clarify the difference between hospice and palliative care or what you need to create an advance directive.

International End-of-Life Doula Assn. has a directory of doulas who can assist with advanced-care planning.

Death Cafes, in-person or online, are group-directed discussions of death with no agenda, objective or theme. It’s a discussion group and not grief support or counseling.

The California Office of the Attorney General has an end-of-life care checklist, resources including Medicare information, an advance healthcare directive checklist and more.

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