In April 2004, this year’s 14th Annual Provincial Conference on Palliative and End-Of-Life Care will examine topics such as bereavement support, caregiver stress, depression, basic pain management and symptom management in pediatric oncology. In context, it strongly resonates the Hippocratic Oath as to the emotional trepidation of dealing with life and death and the past twenty years of palliative and end-of-life care in Canada.
“If you looked at our conference and the expertise we are bringing in, I would hate to see all this expertise and education being restricted to patients in their last one to three months of life,” said Dr Sol Stern, President, Ontario Palliative Care Association. Stern, who is also Chief of Staff at Halton Healthcare Services, believes not enough health-care professionals attend these conferences because they think palliative care is the last couple of months of life. “We have so much in this conference that can educate physicians, nurses, lay people, on how to be compassionate and caring for people who have a life-threatening illness that could last three years, (such as Alzheimer’s disease).” Stern believes the key messages at this year’s conference are for health-care providers to continue to look for cures, but also to prolong life and to decrease complications wherever possible.
A key factor of this for Dr. Laura Hawryluck, Physician Leader, Ian Anderson Program in End-of-Life Care, Continuing Education, Faculty of Medicine, University of Toronto, is pain and symptom management. “Medicine still for the most part is focused on cure, disease diagnosis, and specific management of a particular illness,” said Hawryluck. “While we are getting better in terms of our teaching, there is still less emphasis on pain and symptom management. There are studies that show us we still have people who face considerable amounts of pain and considerable amount of the stress of symptoms as they near the end of their life.” Hawryluck works clinically out of Western and UHN hospitals.
“We are under-treating palliative care patients,” said Dr. Brian K. Kerley. Kerley is Director of Palliative Care Services, at the Niagara Health Systems, St. Catharines General Site. St. Catharines has an eleven-bed palliative care unit that is an acute care model. The unit’s goals are to stabilize patients while trying to gain rapid control of pain and other symptoms, and to offer psychosocial support on those and other kinds of issues, such as placements and discharges. Some die on the unit if they’re too ill to go home or sometimes while waiting for placement.
“…People are dying in ICUs hooked up to multiple machines and life support systems, and it is difficult sometimes to see death as a natural process, and a natural end to a person’s life… I feel that a lot of people are not being cared for adequately at the end of life. Quite honestly, I get referred a lot of patients who need very complex interventions, high tech interventions, in order to manage their pain, whose pain just doesn’t come under good control with standard doses of opiates and narcotics.” Kerley is also referring to patients’ additional needs for epidurals, infusions, special drugs and other protocols, to control pain.
Hawryluk sees communication – or how to talk to a patient or to the family of a patient who is dying – as incomplete, although there’s a huge emphasis on that in the field of bioethics. “[Most] doctors are not taught how to have these conversations. It’s a very personal time, and all of us feel it’s a privilege to be involved in somebody’s life in that way. We don’t know how to support them in the way that they need to be supported sometimes.” There are questions Hawryluk believes get raised without explanations, such as how to help somebody through the emotional milestones that they need to go through. “There is grief, sadness, sometimes anger, and sometimes the emotion that they face is denial.”
Yvette Perreault, Director of the AIDs Bereavement Project of Ontario has been doing work for AIDs across the country for approximately eighteen years. For the last nine years, she’s been working with the caregivers, staff, volunteers and board members who are the community-based AIDs service organizations in the province. They’re continually dealing with changes in HIV, the deaths occurring and not occurring, funding changes, organizational changes and transitions, the ups and downs of organizational life, socially stigmatised illness, and then the complexities of AIDs itself.
Perreault saw workers were getting tired, were mourning or losing their spark and vitality. “We’ve been really determined to develop really creative tools to help people actually know themselves and their own resiliency… So we developed the resiliency map,” she explained. “It was typically for HIV and AIDs, but we think it is applicable to anybody doing home support and palliative care.” Perreault concludes that in a hospital setting her organization would look at how HCW stress is supported, the overload, the existing programs, staff development opportunities, etc., and then integrate the resiliency map as part of staff development.
When asked what his thoughts were about palliative care beyond 2010, Dr. Kerley remarked, “There are certainly not enough palliative care physicians at the present time, and I don’t see the numbers radically increasing, unless we interest more medical students and residents in palliative care as a career option or in family practice with palliative care as an included part of their practice.”
The question arises if there are not enough palliative care specialists to meet the needs of dying patients in Canada, will patients then rely on family doctors or others with an interest in palliative care in order to die comfortably? ” I think we are going to be in real trouble. I don’t know where that is going to come from. The demand is going to go way up and the supply of service is not there to meet the need.”