If you're a Canadian suffering from a terminal illness, there's a good chance you haven't considered palliative care — even if you're aware the services exist and have access to them.
The primary goal of palliative care services isn't to heal or to cure, but to offer comfort. They help patients and their families by providing physical, emotional, and spiritual support through the dying person's final months, weeks and days. The care can be delivered at the patient's home, in hospital or at a hospice, and it may involve a number of different elements.
Effective management of pain and symptoms provides comfort and the ability for the dying person to function. Access to counsellors, social workers, psychologists, and spiritual leaders can help patients work on the other important issues before dying. By providing care givers and loved ones with psychological and physical support, the palliative care team also enables the caregivers, usually family members, to continue in their roles, reducing the chances of burnout.
Despite the benefits of palliative care to patients and their families, 75% to 85% of the 160,000 Canadians who die from terminal illnesses each year don't have access to it during the end-of-life stage, according to statistics from a Senate report published in 2000 and the Canadian Hospice Palliative Care Association (CHPCA). If you live in an urban area or are hospitalized in a big city, your chances of being offered palliative care services are generally higher than those who are in Canada's rural areas.
Sharon Baxter, executive director of the CHPCA, said there are several reasons for the lack of palliative care. But the main one is that many Canadians are simply unaware of its existence or don't understand the palliative care team's role, she says.
For example, when Donna D'Amour's husband was dying of colon cancer, the Louisdale, N.S., resident said she wasn't even sure what palliative workers did. "I thought if they sent palliative care people to see you, you were on the way out. I couldn't imagine anyone welcoming that service."
D'Amour and her husband didn't like the idea of strangers coming into their home, but they eventually agreed to palliative care. The doctor and nurse on their team visited regularly and, aside from the physical care, spoke with them frequently about their fears and concerns. D'Amour recalls that this allowed her husband to speak openly about his death, plan his funeral, and even proofread his obituary. According to Baxter, D'Amour's original perception of palliative care isn't unusual.
"Canadians are a fairly death-denying society," she said. "You don't really want to talk about it until it sort of slaps you in the face."
According to the CHPCA, currently, an average of 259,000 people die each year in Canada. Among these, it's estimated that 181,300 would benefit from palliative care. With the predicted increase in the number of deaths to 330,000, by 2020, there will be an estimated 231,000 people requiring palliative care each year.
The cost of palliative care offered in the hospital setting is covered by provincial health care plans; however, the cost of care in residential settings or at home isn't. For example, the West Island Palliative Care Residence (WIPCR), in Kirkland, Que., receives only a portion of its operating budget from the provincial government and must rely on charitable donations to raise more than $1 million annually in order to keep offering care in its nine-bed facility.
Like most other hospices, WIPCR also relies heavily on volunteers to help run the operation. When palliative care is given at home, the cost is often borne by the patient and family, although there may be some assistance provided, such as visiting nurses and doctors. But this situation is starting to change. The First Ministers Health Accord in 2004 provided $41.2 billion to the provinces to help improve health care.
Some provinces have used that money to bolster home care services. For example, in Newfoundland and Labrador, the cost of medications for patients who died at home were not covered by the government; they are now covered for the last 28 days of life. Alberta provides its premium drug coverage to people receiving palliative care from the time of referral; P.E.I. doesn't cover drugs yet, but the government hopes to do so when the province's financial situation improves.
Training the Caregivers
Palliative care can make the patient more comfortable, and it can also help take pressure off the health care system by giving families the support and resources to help care for loved ones at home. However, there are still not many health care professionals who are certified in palliative care in Canada.
Baxter said that it's important that the medical community retrain its professionals to be more comfortable talking about death and dying. Not being able to save the life of a patient is not always a failure — an issue within the cancer community in particular. Health care professionals who work with patients who have other diseases, such as amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease, know that death is inevitable and they understand the expected need for palliative care.
In 1999, the Royal College of Physicians and Surgeons of Canada and the College of Family Physicians jointly recognized palliative care training a subspecialty. And, as of 2009, all 17 medical schools in Canada must provide palliative care and end-of-life training to the graduating physicians. For nurses, the Canadian Nurses Association began offering Hospice Palliative Care certification in 2004. By 2005, there were 756 certified palliative care nurses in Canada and more are being certified each year.
Phillipa Rispin helped care for her sister, who died of leukemia at home in Toronto. She says she really appreciated the professionalism and expertise of a physician trained in palliative care.
"Apart from the nurse who came in to do intravenous drugs and things like that, we had a marvellous doctor," Rispin said. "We could ask him any questions we wanted. He was just really matter-of-fact without being cold."
Rispin and her family were able to provide care until her sister's death, knowing that help was just a phone call away.
Accepting palliative care doesn't take away from the family's wishes to be caregivers. When D'Amour's husband was admitted to hospital overnight from time to time, they were provided with a special room where D'Amour and her sister stayed, enabling them to provide care, such as bathing and changing the bed sheets.
Palliative support doesn't stop when the patient dies, as the family is supported through the grieving process. Rispin, when speaking about the doctor who cared for her sister, said, "We called him when she actually died. He just sat with us for an hour and a half, just talking, and he was terrific."
As part of the care plan, most palliative care services provide on-going bereavement support and follow-up for the families.
For loved ones of the deceased, the impression left behind by the palliative care team is often life-changing. Many families are so grateful for the care that donations are solicited for the service and some family members end up volunteering or playing some role in the palliative care movement.
Allowing the dying and their families to benefit from the knowledge of experienced professionals can ease many fears about death. It also allows for preparation. Rispin feels that one of the most valuable benefits was "the ability to ask any question about anything about death and dying of someone who had direct experience caring for people in that situation."
"We got to know some very caring people," said D'Amour. "Somehow talking to trained strangers lets one say what has to be said. Knowing you don't have to be strong all of the time, that there are people who care and take the time to listen, is a vital support."
Qualicare offers in hospital and in home palliative support. To learn more, request a home care assessment below.