Ask people where they want to die and 90 per cent will respond at home, or close to nature in a cabin, or on a beach. Only 10 per cent will say in a hospital or nursing home, according to Donna Wilson, professor of nursing at the University of Alberta and a researcher into dying in Canada.
Her most recent survey focuses on the dying preferences of Albertans but other research from Canada and around the world over the past two decades confirms these results. The surveys include both healthy and terminally ill people.
"I think healthcare professionals need to realize that not everybody wants to be admitted into a hospital and looked after in hospital," says Wilson. "I still think there's a lot of doctors and nurses who would be astounded to hear anybody wants to die at home."
Sixty per cent of Canadians die in hospital, and an additional ten per cent die in nursing homes.
"There’s growing discussion," says Wilson. "If indeed people who are terminally ill are asked where they want to die and the public is being asked where would you like to die, and everybody’s saying ‘I want to be at home,’ well, why isn’t that happening?"
The gap between preference and reality is the result of inadequate social and economic supports for terminal patients and their families, says Wilson.
Therese Clarke, 79, has ALS and wants to die in a hospice but there is none in her community of London, Ont. Clarke is willing to move an hour away for a hospice bed in either Woodstock or Brantford, if one is available when the time comes. "But with the bed situation and everything, I don’t know," says Clarke.
Source: Mariam Ahmad
"Looking after someone 24 hours a day, seven days a week, with no breaks, very little publicly-funded home care, and the enormous stress of caring for someone that you love, it’s just so difficult," she says.
It is for this reason that Therese Clarke has decided she does not want to die at home. The 79-year-old London, Ont. resident has ALS, a fatal neurodegenerative disease. She is able to stay in her home for now with the support of Hospice Services of London which offers home visits and other services, but is not a residential facility.
But when the time comes, Clarke does not want to burden her family with caring for her in her last days. "I don’t want my children involved in my last hours on earth," she says.
Clarke is fortunate because she is visited by Hospice of London volunteer Gail McLarty and first-year medical student Caitlin Carew.
Carew, 23, is part of a volunteer program at Hospice of London that trains first-year medical students on home care and hospice support. The students team up with experienced volunteers like McLarty and visit clients once a week. Carew says the experience has been an eye-opener. "I think that having that knowledge and getting rid of that fear of the unknown will make me a lot more comfortable dealing with patients in the future," she adds. Carew would like to see more practical work and exposure to palliative care.
Wilson says that most doctors and nurses have little experience in home-care. "All their training and all their career work has emphasized to them [that] everyone comes to hospital. Why would anybody want to be at home?"
Home deaths can be a positive experience
When a patient and his or her family have adequate support at home the experience of a home death can be very positive for everyone, says Wilson.
"Your loved ones are there to talk to, families have an opportunity to talk together and heal wounds or develop strong bonds, and dying people can thank their family members and give final advice."
Dying at home helps not just the dying patient, but society as a whole, emphasizes Wilson. More people dying comfortably at home would mean more free hospital beds for patients who can benefit from hospital services. Additionally, "aggressive, expensive, painful and futile" care in hospital is often avoided when patients are able to die at home, she says.
Some patients, however, may still choose to die in a hospital. Many hospitals across Canada have excellent palliative care units that deliver quality and appropriate end-of-life care, says Dr. Joshua Shadd, assistant professor in family medicine at the University of Western Ontario.
And for some patients in rural areas who have strong relationships with their physicians, a hospital can be the better choice, he says.
Training and educational resources for future doctors
- There are 17 medical schools across Canada; 12 offer accredited residency training programs in palliative care medicine. Lack of funding is a factor for medical schools that do not offer palliative care residency programs.
- Most end-of-life care is delivered by family physicians. Many of them lack intensive pain management training and other related skills.
- Training is equally underfunded for other disciplines involved in hospice palliative care, including; nursing, social work, psychology and spiritual counseling. nurses, social workers, psychologists and spiritual counselors.
Source: compiled by Mariam Ahmad
"If I end up in a hospital in a rural area, it may be my family doctor who knows me, and who I’ve had lots of conversations with," says Shadd. "So in that setting, the doctor — even though I’m in a hospital — may be perfectly able to create an appropriate palliative care setting."
Since the mid-90s when hospitals across the country began closing beds, however, the number of hospital deaths has declined somewhat as a result. It is not clear whether the hospital patients being returned home to die are doing so with the support required to meet their needs.
Canada needs a system that allows each patient to make the choice of where he or she will spend their last days, says Dr. Sharon Baker who specializes in palliative care at the London Health Sciences Centre in London, Ont.
"The most important thing is to recognize that people will die in hospital and we need to provide a good, humane environment for those people," she says. "The biggest problem right now isn’t that people are dying in hospital. It’s that people aren’t dying well in hospital."
Providing support for each Canadian comes down to financial support for all three streams — hospital, hospice and home care, says Baker.
"It’s about choice at the time," says Baker. "And making sure we’re able to meet people’s wishes and choice at the time when they are actually dying."