Canadian hospice industry faces familiar challenges
Canadian hospice industry faces familiar challenges
Summit focuses on public awareness
The first ever hospice/palliative care summit in Canada, held late last year in Mississauga, Ontario, drew more than 60 delegates from across that sprawling country to examine the current state of hospice and palliative care and to discuss public awareness challenges and ethical issues. Delegates formed action groups in seven broad areas, and established the following ambitious action plans:
• Develop a comprehensive program to influence public awareness and public policy.
• Enact consistent professional quality standards and certification programs.
• Clarify and articulate a common, single vision for hospice and palliative care in Canada.
• Join the debate on end-of-life ethical issues, such as euthanasia.
• Develop models of seamless, coordinated care across various community services.
• Provide support and education opportunities for caregivers.
• Increase public and professional education.
The summit was convened by the Glaxo Wellcome Foundation, the charitable arm of the pharmaceutical research and manufacturing company Glaxo Wellcome, whose Canadian headquarters is in Mississauga. The foundation has named hospice care as its primary social cause, based on a vote by its employees, to receive half of the foundation’s charitable expenditures. The foundation also commissioned a public opinion survey, "Canadians’ perceptions of hospice care," and a qualitative needs assessment based on interviews with hospice professionals from across the country.
A slight majority of surveyed Canadians had heard of hospice care, but only 30% could correctly identify it as care for the terminally ill. Fifty-two percent had a favorable reaction to the concept of hospice, while 48% were undecided and none held negative views. One-quarter knew someone who had used or was using hospice, and 51% would be very likely to use hospice care if they had a terminally ill family member.
The vast majority of Canadians hold sympathetic attitudes to the need for supportive services for people with life-threatening illnesses, but at the same time, they believe families should be responsible for providing for patients’ non-medical needs. Canadians also support government funding for terminal care, the provision of adequate pain management, the inclusion of social and emotional support in health care for the terminally ill, and allowing terminally ill patients to spend their final days comfortably and in familiar surroundings.
From the in-depth interviews with hospice professionals, a number of key problem areas for the industry have emerged, including:
• lack of public awareness and confusion about what hospice or palliative care is;
• lack of training in palliative care and pain management for health professionals, which leaves them uncomfortable in treating terminally ill patients;
• lack of research in hospice and palliative care models, particularly for special-needs populations;
• uncertain government commitment to hospice/ palliative care;
• lack of integration between community-based and institutional hospice and palliative care programs;
• shortage of programs, volunteers, and funding.
Thus, Canadian terminal care providers face many of the same issues as their counterparts in the United States, within a context of increased health care cost containment and the dilemmas of how to put limits on new medical technology. However, they don’t have to deal with the uniquely American overlays of the Medicare hospice benefit, managed care, Operation Restore Trust, and a huge uninsured population.
Perhaps the biggest issue facing Canadian providers, says Janet Napper, executive director of the Hospice Association of Ontario (HAO) in Don Mills, is that "our health care system is going through huge changes, with shrinking grant dollars and the devolution of care out into the community. Hospitals are being restructured, people are leaving the hospital quicker and sicker, and care at home is more complex." In metropolitan Toronto, with 2.5 million residents, hospital restructuring is expected to take away all hospital palliative care beds, Napper says.
These changes are placing tremendous demands on HAO members, largely volunteer-intensive, community-based agencies receiving 70% to 80% of their budgets from community donations. The rest comes from government sources, such as grants for health or volunteer management. HAO’s membership has grown from eight to 80 hospices in less than a decade, and one program nearly doubled in size in the past year. "These are huge increases for volunteer agencies," Napper says.
Napper explains the difference between hospice and palliative care in Canada by noting that hospice was formerly viewed as a volunteer service, while palliative care was more formal and institutionally based. Also, the word "hospice" carries negative connotations among the French-speaking majority in Quebec due to the word’s French-language connotations of poverty. However, it would be an oversimplification to place too much weight on these distinctions; often the terms are more or less interchangeable, she says. "It is a semantic issue for a bilingual country."
Volunteer hospices in Ontario are restricted somewhat in the professional services they can provide, and typically work closely with palliative care physicians. There are also vast stretches of Northern Ontario that are very sparsely settled, "so no one model will work in all cases," she says. Recruiting and training enough volunteers to meet the growing need is another challenge. "We’re looking more and more at where we want to be in five years. Do we want to be mainstream, like hospices in the States?"
The Glaxo Wellcome foundation’s current emphasis is on creating a public sentiment and a policy climate more conducive to hospice care, thus putting hospice on the health care agenda, adds Glaxo Wellcome’s manager of community relations, Tara Addis. The action groups formed at last year’s national summit will be pursuing their various agendas and sharing information about best practices. A coordinating committee also was formed to pull this information together. The foundation is committed to supporting the growth and development of the hospice movement in Canada, beyond the 600 existing hospice and palliative care programs.
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