A ‘death denying society’: why aren’t more Ontarians using palliative care?
Only 30% of Canadians near the end of their life use palliative care services.
Many experts believe that providing greater resources for palliative care does not currently appear to be an Ontario or federal government priority.
Roger Jackman is a fictional name we have given to a man in his 50s who recently died in an Ontario hospital. A few details have been changed to preserve anonymity. Jackman was diagnosed with colon cancer three years ago. The cancer was surgically removed, and he received aggressive chemotherapy, but it had unfortunately already spread. He and his family wanted to continue with aggressive treatment focused on fighting the cancer. However, towards the end of his life, Jackman was brought to the emergency department and admitted to hospital because of severe pain and shortness of breath. At this point, steps were taken to ensure he was comfortable and better manage his pain, and Jackman died about a week later in hospital.
Although his family members were grateful for the care he received, they were not ready for his death. Jackman’s story is more common than it should be. Many patients do not have the opportunity to discuss psychological and spiritual concerns, or how they would like to deal with pain, anxiety and other symptoms that often arise at the end of life.
Dying in Ontario
Dying is a part of living. About 80% of deaths in Canada are neither sudden nor unexpected, and most Canadians die in old age. Given that the majority of deaths are expected, there are ample opportunities to plan for the end of life, but this often doesn’t happen.
Senator Sharon Carstairs, who was appointed to the Canadian Senate in 2001 with a special responsibility for palliative care, says that Canada is a “death denying society” and that while the average person knows “in the back of their mind that they are going to die… they won’t talk about it until it absolutely hits them in the face.”
If these discussions do occur, they provide the opportunity for people to openly talk about the kind of care they want at the end of their life with health care providers, family members and friends. One study of Canadians near the end of their lives found that the areas of greatest importance were satisfying spiritual and emotional needs, good relationships with doctors, communication and decision making, and illness management.
Palliative care provides relief from pain and other distressing symptoms, and integrates the psychological and spiritual aspects of care. Palliative care is neither intended to hasten nor postpone death. It can be provided in conjunction with treatments that are intended to prolong life, such as radiation and chemotherapy.
When asked about what they want to happen when they are nearing the end of their life, the majority of Canadians stated that they wish to die at home. Palliative care can facilitate this, by providing pain relief, supporting caregivers, and managing basic personal needs. These simple interventions can dramatically improve the quality of life during the last few months, weeks and days of a person’s life.
Dying at home with palliative care also makes good financial sense for the healthcare system. Dying in an acute care hospital is expensive. A study in Alberta found that health care costs in the last six months of life for people with heart failure were about $28,000, and that 70% of these costs were due to hospitalization.
Implementing palliative care
Dying at home or in a residential hospice environment is easier with the help of a team that can support patients and families medically, socially, emotionally, and spiritually. Palliative care teams consist of not only doctors and nurses but also other health care professionals such as personal support workers, social workers and chaplains.
Kirsten Schmidt-Chamberlain, the palliative care lead for the Central East Local Health Integration Network suggests that “one essential piece that is often missing is a person who can provide psychosocial support – such as a social worker or chaplain. This person can take the time to sit with the patient and their caregivers and talk to them, listen to their fears, and remind them that what they are going through is a normal part of life. Without this, the experience of the patient and the health of the family are compromised.” Schmidt-Chamberlain says that community-based palliative care teams are essential to allow patients to die at home, because “when you get to the end of life, it’s not possible to go to your doctor’s office to refill a prescription or find out why your breathing is laboured.”
Why is this not happening in Ontario?
A 2010 Report from the Canadian Senate on palliative care found that only about 30% of Canadians who require palliative care at the end of their life use these services.
Robert Fowler, a critical care physician at Sunnybrook Health Sciences Centre believes that doctors are in part responsible for not helping people confronting the difficult decisions at the end of life. He says that “our field often, sometimes without really meaning to, pushes patients and families towards aggressive treatment” by telling them “lets try to do something more, lets try to fix this.” Fowler believes this can “de-emphasize” the inevitability of death. He also says that doctors could do more to “discuss the breadth of options with patients – palliative care as opposed to aggressive treatment at the end of life, home care as opposed to hospital-based care.” Schmidt-Chamberlain adds that doctors’ discomfort can often be seen in their language: “I’ve heard great doctors say to their patients, “There is nothing else we can do, except palliative care.” That’s a big except. Instead they should be saying at the time of diagnosis that palliative care is an option, all the way along their journey.”
However, not all forms of palliative care are available to many Ontarians. Larry Librach, Director of the Temmy Latner Centre for Palliative Care at Mt. Sinai Hospital in Toronto says that palliative care and home care have not been a priority of the Ontario Ministry of Health and Long-Term Care. Librach says that about 70% of patients who receive care from his Centre are able to die at home. He believes this is because his staff are “prepared to go out and do community work and to provide 24/7 coverage… so that patients and their families know that they can get access to and speak with a doctor or a very experienced nurse.” Librach says that he would like to expand the Centre to serve more patients, but that the funding and policies from the Ontario Ministry of Health and Long-Term Care do not currently allow this.
Senator Carstairs believes that “there will not be any movement [on palliative care] in the future if the federal government doesn’t take some leadership” and suggests that the current government has the “philosophical perspective that health care is a provincial issue.” Librach notes that “home-based care is not embedded in the Canada Health Act” and Carstairs adds “if we are going to to make a fundamental change in the health care system… there needs to be genuine leadership from the federal government about the kinds of services available in our health care system.”
If home-based and hospice palliative care cost less and are better for patients and families during the end of life, why are governments not supporting what appears to be a win-win scenario?