Pat Mackay wanted to die at home. Sixty-five years old and suffering from metastatic breast cancer, Pat told her family she wanted to spend her last days in her Toronto apartment where she could hold on to her favourite view overlooking the trees of the St. Clair Reservoir. Her husband, Mike, and her two sons agreed, moving a hospital bed into Pat’s den and sharing round-the-clock caring duties with regular support from outside caregivers. “She got to die the way that she wanted to and for us that was important,” says Pat’s son Jon, looking back on the experience five years later.
But Jon also remembers his helplessness the day he and Mike found Pat writhing in bed from terrible abdominal pain. They had no idea what was causing it or how to help stop the agony. Eventually they gave Pat a dose of morphine, still not certain they were doing the right thing. Later they learned that her pain had come from a full bladder; a caregiver had forgotten to empty her urine bag. Jon was stunned that something so seemingly minor had caused Pat such pain. “There is nothing standard about a very sick person,” he says.
The Mackay family is hardly alone in discovering the harsh realities of helping a friend or relative fulfill a wish to die at home. Three-quarters of Canadians say they want to die in their homes, yet just 15 percent manage to do so, according to a 2018 report by the Canadian Institute for Health Information. A majority—almost 60 percent—die in hospitals, according to Statistics Canada data from 2017.
Reasons for this discrepancy vary. Symptoms become unmanageable. Publicly funded services are not frequent enough to meet patients’ needs. Family members become overwhelmed by the unceasing demands. “Most people at the end-of-life need 24-hour supervision,” says Shan Mohammed, professor at the University of Toronto’s faculty of nursing, whose research specializations include palliative care and family caregiver supports. “Many families often wind up wishing their relative had spent their last days in a hospice, allowing loved ones to spend more time being with them rather than worrying about symptom management and scheduling care.”
A 2018 study by Health Quality Ontario found that half of Ontarians who lived in the community during their last 30 days of life did not receive any home care, and three out of four did not receive a palliative-specific home care visit. That low level of professional support means family members are frequently left on their own to handle a burden that is emotionally and physically draining.
A 2006 Health Canada survey found that 41 percent of Canadians who cared for a dying friend or relative reported negative effects on their mental health; 38 percent reported negative effects on their physical health. And there can be financial strains. Health Quality Ontario puts the average cost to caregivers who provide palliative home care for family or friends at approximately $18,200 a month in lost wages, lost leisure time, and out-of-pocket costs.
Jon Mackay remembers caring for his mom as a full-time job. His brother took a leave from work. His father was retired, and had to tap into retirement savings. They spent money to hire private help. “Sometimes you forget to schedule the support and then you miss a shift and have no help that day,” says Jon. “And you do not get along with everyone. Some care workers are a bad fit with the family.” Home caregiving, he says, is subject to Murphy’s Law: Whatever can go wrong, will go wrong.
“It was the right decision for our family, but it wasn’t without its costs,” Jon says. “Emotionally, it took a while to recover.”
The toll of caring for a dying relative at home
Palliative care in Ontario is funded through the Ministry of Health and Long-Term Care. The funding is distributed to 14 Local Health Integration Networks (LHINs) which then plan, coordinate, fund, and monitor services in each region. Nursing and personal care in the community is contracted out to many different private agencies. Deciding who is eligible for care is done by a case manager at the LHIN who is a health care professional.
“It’s very hard to say how much nursing and respite care people receive across Ontario because it’s so different depending on the LHIN you live in,” says Travis Amell, a palliative care nurse in Ontario who studies the experience of rural caregivers. “What is often provided depends on functional status, such as how much help is required for bathing and dressing, and how many days the patient has left to live.” (With the LHINs set to be dissolved, it is uncertain who will take on responsibility for palliative care.)
Mahoganie Hines is one of 38 nurses who has been hired by the Ministry to consult with and educate non-palliative health care clinicians in all settings so they can provide better end-of-life care. On weekends, she often works at her local residential hospice, which means she sometimes works seven days a week helping people have the best death possible.
The list of what is needed to support someone to die at home is long. “First and foremost, you need a caregiver that is capable,” says Hines. “That person has to have a support system. You ideally need a palliative care outreach team that takes over or supports the family physician’s care. As part of that team, you want a physiotherapist and occupational therapist to do a home assessment. You want a psychosocial bereavement clinician to be part of the care. At a minimum, you need personal support workers and nurses for respite and medical care.”
But in reality, these specialized teams are few and far between. According to the most recent Auditor General of Ontario report on palliative care in 2014, only 15 such teams exist in Ontario. According to a 2019 study, most teams are located in urban and suburban areas.
“Typically, in the last 30 days of life, once the patient is bedbound and requires total care, the family is eligible for eight-hour overnight nursing shifts,” explains Amell. “But what often happens is they will have coverage one night, and then the agency will be short-staffed so the family may not have help for three nights in a row. The other 16 hours of the day they are often alone, unless there is a medical crisis and an on-call nurse can come to the house. In rural areas, the nurse could be two hours away.” Amell suggests that before patients are eligible for more services, the family often has to provide weeks if not months of labour intensive, time-consuming caregiving without much support. “By the time families are eligible for extra help, they are often burnt out and end up having to send the patient to hospital or hospice,” says Amell.
As death approaches, the lines between home and hospital inevitably blur. One room often becomes the space where all care is delivered, with a hospital bed plugged into a wall, a commode for going to the bathroom, and perhaps an oxygen tank or medication pump nearby. If there is a palliative care team available to assist the family, their kit of pre-filled syringes with medications for pain, nausea and vomiting, secretions, restlessness and anxiety is stored at the house. The team may also stock catheters, equipment for subcutaneous injections, and supplies to deal with bowel obstructions. For patients, it means their world progressively shrinks to that one room. The sense of claustrophobia can extend to supporting family members and friends.
Hines sees this experience repeatedly played out. “It’s very easy for people in power to say, ‘Oh, you should be able to die at home.’ But is it realistic? Are we providing the necessary supports to actually care for people at home?” she asks. “Sometimes the family members end up going through trauma because they have not been supported.” In Amell’s research one participant shared the terror of witnessing her husband’s gastric hemorrhage while she was alone with him.
The 2016 follow-up to the Auditor General report found that the Ministry continues to have no data on palliative care resources in Ontario. But we do know that the level of support depends on where you live and how much you can afford. “It’s inequitable,” says Amell. “There is a big difference between rural and urban settings.”
The Auditor General report in 2014 found that palliative care appears to be provided only in areas where individual clinicians have taken initiative, leaving large portions of the province with little to no care. For example, two LHINs—the Central East network spanning 16,667 square kilometres and the North West network, which is roughly the size of France—had no hospice beds.
Amell’s research found that rural palliative care patients often have extensive social support from family, friends, and community members. “Support comes in the form of home-cooked meals, respite, cleaning, running errands and visits to help lift their spirits,” he says. He believes this trend comes from being accustomed to limited resources, which can forge greater mutual support out of necessity. Urban caregivers, by contrast, he says, can feel isolated, shouldering all aspects of care alone.
And patients in lower-income Ontario neighbourhoods are less likely to receive palliative home care (22.7 percent) than those in higher-income neighbourhoods (32.2 percent), according to the 2017 Health Quality Ontario report.
The Mackey family quickly realized that even with government-funded palliative home care, they were not getting the support they needed. “The personal care workers are covered up to a certain number of hours per day and that wasn’t enough for us,” says Jon. “Thankfully, between our own money and my dad’s insurance, we were able to get almost 24-hour care.”
How can we make it easier to die at home?
The picture is not all dark. There is evidence to suggest that dying at home can be a positive experience. In 2010, health researcher Hsien Seow of McMaster University in Hamilton found that people with advanced serious illness who receive more care at home have fewer visits to the emergency department. In a 2006 study, nurse researcher Louise Peters and a colleague from Monash University in Melbourne, Australia, found that people receiving palliative home care had lower depression levels, less symptom distress, and reported better physical health and quality of life compared to people receiving inpatient hospital care.
Health care policy makers are working to improve the experience of dying at home. In January, the Canadian Foundation for Health Care Improvement and the Canadian Partnership Against Cancer announced a $5.5-million, four-year national initiative to train 5,000 paramedics to deliver palliative care services to patients with life-limiting conditions in their homes. One potential outcome is that treating more palliative patients at home will result in fewer trips to emergency services. Jennifer Zelmer, the CEO for the foundation, says the motivation is to make access to palliative services available 24/7.
“Some palliative programs do have round-the-clock care, but some only provide services Monday to Friday from nine to five,” says Zelmer. “So how can we expand access for people who have that need Sunday at 7 p.m.? The intent is to add a new member of the team who can provide support in the location of the person’s choice. If paramedics are trained to provide palliative care, they don’t necessarily have to transport to hospital.”
“People who tend to not have a good experience dying at home are patients with intensive symptoms that have a quick, unexpected onset, like sudden shortness of breath,” says Warren Lewin, a palliative care doctor at the Toronto Western Hospital. “The greatest need right now is training primary care workforces to provide basic symptom management and supportive care to patients with low complexity at their end-of-life.”
Given the shortfalls in outside help, palliative care specialists say it is vital to make it clear to family members the realities of the caregiver role. “It’s important for people to know that home-based palliative care works really well for some patients and not for others,” says Lewin. The challenges are not just feeding and bathing the patient. Family caregivers have to learn how to give medications, how to troubleshoot with their home-based team, and how to take care of unexpected medical situations, which most people do not have the training for.
“You have to tell them what the dying process is like,” says Amell. “You need to ask how they think they will cope, and if they reach a point where it is too difficult, they need to have a plan B, which is usually going to hospice,” he says.
Jon Mackay says that despite the difficulties, he would not have done it differently. Pat was able to die at home, surrounded by family. And the experience was ultimately good for the family as well.
“There were nice moments during that month-and-a-half when she was bedridden,” he says. “It wasn’t just us giving her her preferred way or place to die. We wanted to hold onto her for as long as we could.”
Celina Carter is a registered nurse and Ph.D. candidate at the Dalla Lana School of Public Health. She is also a freelance writer and is pursuing a Certificate in Health Impact, offered jointly through the Munk School of Global Affairs and Public Policy and Dalla Lana.