For some patients, there is no place like home
By Stuart Foxman
His patient was hours from dying in November 2020, when Dr. Anthony Di Cintio entered the family’s home in Hawkesbury. Ruby Pichie, 82, was under palliative sedation. Her three daughters were gathered around.
Dr. Di Cintio asked the daughters to tell stories about their mom. He felt like he often does at such times: grateful to be there. “These moments can have power and beauty,” says Dr. Di Cintio.
Six months before, Pichie was having trouble catching her breath. Her family worried she might have COVID-19. An ambulance took her to the hospital. No COVID, but Pichie learned she had stage 4 lung cancer.
After an initial hospital stay, she returned to the home she shared with her daughter, Patricia Bracelin, and her son-in-law. She had moved in with them 14 years earlier. Pichie had another hospital stay, from mid-June to late-July, then decided she wanted to die at home.
“That meant everything to her,” said Bracelin.
Pichie was referred to Dr. Di Cintio, who provides palliative care under the United Counties of Prescott Russell Palliative Outreach Service. He told Pichie and her family what to expect, and about the level of caregiving needed. A nurse came every few days, then weekly. A PSW helped often too, daily towards the end. Dr. Di Cintio visited weekly and called a few times a day to check in.
When Dr. Di Cintio walks into each patient’s home, he carries his medical equipment, and a variety of important legal and social service documents to assist family members with matters like Power of Attorney creation and Compassion Care Leave. “But more importantly, I never forget my little foldable red chair. I see this as an even more important tool than my stethoscope as it allows me to sit at the same eye level as the patient and family members before me,” he says.
To him, being a palliative care doctor is as rewarding as delivering a baby. Instead of tears of joy, you see tears of sadness. But the beginning and end of life are each profound. Others have also made that connection. Dr. Glen Maddison, who specializes in palliative care in Sarnia, notes how people who care for the dying have been likened to midwives for souls.
When he helps patients die at home, according to their wishes, Dr. Di Cintio says he’s supporting an elemental goal: “To leave this world with dignity and comfort.”
It happens in their own home relatively infrequently. Surveys show a vast majority of Canadians would prefer to die at home. However, a report by the Canadian Institute for Health Information (CIHI) shows just 15 percent of Canadians receive publicly-funded palliative home care in their last year of life.
What do patients and their families feel they gain from a death at home? And what prevents that from happening more often?
The best death possible
For some, the best death is one that comes after living a long, full life. Others say it’s a death with no regrets and no unfinished business. Still others might say it’s a death in the setting of their choosing, where they’re conscious and comfortable, their symptoms are managed, and they’re surrounded by people who give their life meaning… and where they have an opportunity to say their goodbyes.
“To me, that’s a good death,” Dr. Maddison says.
Some things can get in the way. Like suffering, or being in what, for the patient, feels like the wrong setting. Dr. Maddison says that can make it hard to reach the level where you can experience a good death.
The health-care system is set up for curative care and extending life, says Dr. Peter Tanuseputro. Yet, that’s not the only goal. “We [also] talk about maximizing quality of life,” says the family doctor and assistant professor, Division of Palliative Care, Department of Medicine, University of Ottawa.
Last year, CIHI commissioned Dr. Tanuseputro’s team to develop a death at home indicator for measurement across Canada. He says that when people know the end is coming, they often have two fears: dying in pain and dying alone.
Medicine is good at dealing with the former. As for the latter, palliative care units and residential hospices do marvelous jobs, as do medical units and ICUs. We don’t always get to make the choice. But for many people with terminal and life-threatening illnesses, there’s no place like home.
When and how should conversations about that option take place? Not too early or too late, says Dr. Russell Goldman, director of the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital in Toronto.
Too early, he says, might be when someone is just coping with a diagnosis and isn’t in the frame of mind to discuss their future. Too late could be once someone has lost capacity.
There’s no one ideal moment during the journey. But the patient has to be ready to confront the reality, be able to decide, and have enough time left to put in place the needed home care, if desired.
This usually isn’t a one-time conversation. It can recur between the patient and a palliative care doctor, a family physician or, say, a member of an oncology team.
This takes a skilled approach. Saying, “When you die, how do you want to go?” can sound like you’re giving up hope, says Dr. Di Cintio. Yes, the discussion is about how someone wants to transition from this world, but the framing matters.
“Take the time to appreciate who this person is and what’s important to them,” says Dr. Goldman.
Support is available
For the most part, says Dr. Tanuseputro, a death at home requires three components: a caregiver who can be there; a physician who can provide home support (e.g., necessary medications, oversight of symptom relief); and PSWs, nurses and other allied health care workers who can offer home care.
“People who care for the dying have been likened to midwives for souls.”
Physicians handle most of the coordinating efforts, and a primary nurse can also take a lead. The caregiver isn’t expected to take on more than they’re comfortable with or capable of — being a supportive loved one is enough.
Dying at home is nothing new, but COVID has amplified that preference. Visiting restrictions “have increased demand for palliative care at home more than ever,” says Dr. Di Cintio.
Dr. Goldman says since the pandemic began, his centre has seen a decrease in people who die in the palliative care unit, while those who opt to die at home now comprise more than 70 percent of the total caseload, up from 50 percent.
The experience can be rewarding for all involved. Patients get to stay in an environment filled with meaning and memories. It’s a natural, safe space, says Dr. Maddison, not one managed by institutional rules.
Some patients worry their care will burden others, says Dr. Paul Hacker, an Ottawa GP practising in community palliative care. Quite the contrary; he says caregivers typically see this process as an honour, not a burden.
Those living with and caring for the individual are able to offer hands-on support, instead of passing off that responsibility. It becomes a family affair. Later, after a loved one is gone, that can be a solace.
“Through the grieving process, you can look at this as something you did for a loved one,” says Dr. Hacker.
When Pichie left the hospital in July, she was relieved to know she could die at home. “Her mood was totally different,” says Bracelin.
In the hospital, Pichie was irritable. At home, her spirits lifted. She was happy to have her two dogs at her side. She spent her days doing her usual routine, even chores like folding laundry and drying the dishes. It was normal.
At the end of the day, she and Bracelin would sit in the living room, watching TV and talking late into the night.
When her mother said she wanted to die at home, Bracelin was hesitant. She didn’t know if she could handle it. She says Dr. Di Cintio gave her the confidence to feel she could provide the caregiving. As the weeks went on, Bracelin felt good she could do this for her mother and honour her wishes.
In the days before Pichie died, Bracelin and her sisters all slept around their mother’s bed. “We bonded,” says Bracelin.
When Dr. Di Cintio came by, he told Bracelin and her sisters that Pichie was unlikely to live past the next day. “He took mom’s hand and said, ‘Ruby, it has been an honour to be here to help you.’ I told him my mom was blessed to have him as her doctor,” says Bracelin.
The next day, with eyes closed, Pichie whispered,: “I’m going to see my daddy.” It was the last thing she said. Her father died in 1954 when Pichie was 16 and she never stopped missing him.
“That helped me to let her go,” Bracelin says.
More resources needed
What kind of support can help more people die at home? It’s often a matter of the number of resources available and incentive pay.
“Proper investments in home care have been lagging,” says Dr. Goldman.
Having more PSW and nursing hours would help. So would more home visits by doctors. Dr. Tanuseputro reports that only 1 in 5 people in Ontario will get a home visit from any physician in their last year of life. Receiving just a single visit, he says, makes it more than twice as likely that you’ll die outside a hospital.
Dr. Maddison wants to see more palliative care specialists, more nurse practitioners trained in palliative care (the biggest bang for the buck, he says), and more family doctors doing palliative care.
A CIHI study noted an international survey of primary care physicians, which showed Canadian doctors, on average, feel less prepared to manage care for palliative patients than do their peers in 10 other countries.
Dr. Tanuseputro says it’s a misconception that palliative care physicians are the only ones who can provide home care to people at end of life. “Your family doctor — the person who has been taking care of you — should,” he says.
They can do so with the right support, sometimes in a shared care model. This is necessary, as all the palliative care physicians in the entire province only reach 1 in 3 people who are dying. “Palliative care should be everyone’s business,” says Dr. Tanuseputro.
Something else that would help is a change in attitude towards death.
“Dying at home is nothing new, but COVID has amplified that preference.”
“We don’t like to discuss it. Canada is still a death-denying society,” Dr. Tanuseputro says.
With the ability of modern medicine to cure people, maybe there’s a thin line between death-defying and death-denying.
Dr. Regine Krechowicz, an Ottawa-based palliative care physician, feels we’ve lost the cultural competence of knowing what death looks like. Death is a natural process and she says people miss out when they don’t have the opportunity to witness it. It creates even more stigma.
“In some ways, people are comfortable with their own mortality when they see someone go through it,” says Dr. Krechowicz.
Instead, death is walled off inside hospitals. Dr. Tanuseputro points to a study that looked at the site of death for patients with cancer (published in JAMA). Out of seven developed countries, Canada had the highest rate of deaths in acute care hospitals.
What’s hidden becomes feared. Some people simply choose not to think about the inevitable, says Dr. Goldman. Others make assumptions about how death will be accepted.
He tells the story of another palliative medicine doctor who visited an elderly patient at home. Before he could see him, the family implored the doctor not to reveal the dire prognosis. When the doctor sat alone with the patient, the man, in turn, asked that his family not be told that he was dying. Everyone was trying to protect each other. Nobody was talking about what was clear to all.
Death does bring clarity. Dr. Tanuseputro describes one patient, a 39-year-old woman. Her cancer had spread and, now, fluid was building up around her heart. She had said she wanted to stay at home until her last breath.
Her complication could have been treated in the hospital. It may have bought her a bit more time. She said no. This woman was already where she wanted to be. She had said her goodbyes. Her loved ones were around her. She had been ill for years and was ready. So, she remained home. Three days later, she died there, on her terms, in her place.
An untimely death? Absolutely. A tragic death? No question. But also this: “She had a good death,” says Dr. Tanuseputro. “It was a beautiful death.”
Learn more:
- The Temmy Latner Centre for Palliative Care has a guide for caregivers on what to expect in the last days of life, when someone is dying at home.
- The Canadian Virtual Hospice offers a range of articles on palliative care, emotional and spiritual health, symptoms and health concerns, decisions, the final days, and more.
- The Canadian Hospice Palliative Care Association has section on their website of resources for health-care professionals.
