Volume 24, Number 6: June 2023
For more than 25 years, the Honorable Sharon Carstairs has championed the cause of palliative and end-of-life care in Canada. Her distinguished career in politics advanced the cause in meaningful ways. In this interview, Carstairs describes how she worked to achieve a national, government-endorsed agenda to improve access to palliative and end-of-life care.
Opportunities & Pitfalls in Government-Led Advances in Palliative Care:
An interview with the Hon. Sharon Carstairs
By Barry Ashpole
IAHPC Board Member & communication consultant
Question: Please describe the status of palliative care in Canada when you were appointed to the Senate.
Answer: When appointed to the Senate of Canada in 1994, I was immediately asked to participate in a Senate study on euthanasia and assisted suicide. It became apparent that the committee was deeply divided with respect to allowing any form of assisted death. However, there was undisputed testimony showing that Canadians were not dying well.
Just 5% had access to palliative care, which was restricted to large urban areas. Physicians had literally no training on how to care for the dying: they averaged just one hour of pain management training and many patients were abandoned by physicians who felt totally unable to cope. Many Canadians were dying in intractable pain.
The study resulted in a report that did not recommend changes to the law on euthanasia and assisted suicide, but put forth 14 unanimous recommendations with respect to the paucity of treatment for dying Canadians.
Q: What were your primary goals?
A: Shortly after this report I was appointed Deputy Leader of the Government, a Senate position I held until 1999 that precluded any policy work. When I left that post, however, I immediately reviewed the report's 14 recommendations, and learned that nothing had changed.
This led to my report in 2000, Quality End-of-Life Care, The Right of Every Canadian, which became the driving force not only for my remaining 11 years in the Senate but also caused me to ask the Prime Minister in early 2001 if I could be designated as the Minister with Special Responsibility for Palliative Care. It is unusual for a minister to name their own portfolio. I and my staff we knew exactly what we wished to accomplish.
We had four major goals.
- To introduce changes to the Employment Insurance Benefit to allow family members to use their benefit to look after a terminally ill family member.
- To ensure that all doctors had palliative care courses at the undergraduate level, to ensure that they were knowledgeable and with the expectation that some would later train as specialists in palliative care.
- To establish a Secretariat on Palliative and End-of-Life Care in Health Canada.
- The fourth, which flowed from the third, was to launch a National Strategy on Palliative Care.
The first goal we achieved very quickly: legislation to establish the Compassionate Care Benefit came into effect on January 1, 2004. When it began, the benefit was for six weeks, but has since grown to a 26-week program. Medical schools did offer more courses in palliative care, but individual school priorities often made this hit or miss. The secretariat was launched and we had doctors, nurses, social workers, pharmacists, and others engaged in the development of the strategy. Unfortunately, the election of a political party with different priorities saw the end of the secretariat and those working on the strategy—all volunteers—were informed that their services were no longer required. There has not a cabinet minister with this mandate since 2003, so the focus on palliative care has been diminished.
A bright spot was helping to develop the Canadian Virtual Hospice, launched in February 2004. Originally thought to reach perhaps 100,000-plus people each year, its website now logs more than 2 million hits annually, and provides care and grief programs for patients, families, caregivers, and professionals for those of different cultures and different sexual orientations, as well as all age groups. Their recent work on grief has been ground-breaking.
Q: What contributed to your successes?
A: I had only one staff person assigned to palliative care, the rest were allotted to my role as Government Leader of the Senate. However, all became engaged by choice in the work of the palliative care file. Like me, they saw it as an opportunity to enact significant change.
The greatest strength I had was knowing what I wanted to accomplish from day 1. Cabinet ministers are frequently chosen because of the geographic area they represent, not their area of expertise. I had the advantage of choosing what I wished to champion and, because of my experience, could hit the ground running. Also, as Government Leader in the Senate, all cabinet ministers needed to work with me to have their legislative priorities pass through the Senate. My staff was ruthless in keeping my priorities on palliative care in the discussions of all legislation.
Q. What pitfalls should others be wary of when trying to effect change in government policy?
A: The most difficult task they face is finding a champion. It could be their elected representative or chief of staff or senior policy advisor. Clearly the most senior person is best, but if someone close to them has a passion for a certain priority, this can change the direction of that office. That said, if the priority you wish to promote doesn't jell with that of the government, your chance of success is very limited.
It is also extremely important to have small steps, easily achieved, to present. Large concepts requiring huge resources rarely achieve success. Focus on the achievable, not the grand scheme.
Q: What does the palliative care landscape in Canada look like now?
A: Today, many more Canadians have access to a variety of resources than they did in 1994. Far more doctors have some—although often limited—knowledge of palliative care. Many nurses and other professionals have additional knowledge. Hospices, virtually absent in 1994, have sprung up across the country. Home care is still woefully lacking and until we pay these workers decent wages it will be impossible to attract permanent employees.
We do provide better care than we did previously, however far too many patients fall between the cracks and the burden on caregivers has grown disproportionately. Canada must learn that it cannot depend indefinitely on the generosity of family members to ensure that their loved one dies supported by those they love, relatively pain-free, and taking their last breath knowing they were loved.
Editor’s footnote: Sharon Carstairs authored Raising the Bar: A Roadmap for the Future of Palliative Care in Canada in 2010. In April 2023, the Canadian Institute for Health Information published Access to Palliative Care in Canada with these key findings: 1) More people are receiving some form of palliative care compared with five years ago; 2) More people are dying at home with palliative support compared with five years ago; and, 3) Some people experience greater barriers to accessing palliative care because of their age, where they live, or their disease diagnosis.
Read Barry Ashpole's bio.