Hospice Palliative Care in Canada Will These Services Be There When They Are Needed?

At some time, in some way, we must all face the end of life. And most of us share a common hope – that when death comes to us or to a loved one, it will be peaceful and free of pain. We hope to face death surrounded by those we love, feeling safe, comfortable and cared for. (Living Lessons® - About Quality of Life for the Last Stages of Life - GlaxoSmithKline and the Canadian Hospice Palliative Care Association (2001))

Hospice palliative care is the combination of active and compassionate therapies intended to comfort and support individuals and families who are living with or dying from a life-threatening illness. It is aimed at relief of suffering and improving the quality of life for persons who are living with or dying from advanced illness or are bereaved.

Currently less than 15% of Canadians have access to these programs and services. If one lives in a remote or rural community, or is living with disabilities, access to hospice palliative care services can be further limited.

The Growing Need for Hospice Palliative Care

• The population is aging: in the next 40 years, as baby boomers age and die, demands for hospice palliative care will increase.
• Each year more than 220,000 Canadians die.
• Each death potentially affects the well being of an average of five other people, or more than one million Canadians each year. This number will continue to grow.
• If hospice palliative care programs are readily available, patients and caregivers will gain more control over their lives and illness through better-managed pain and symptom control, enhanced quality of life and decreased caregiver burden.

Access and Availability of Hospice Palliative Care Services in Canada

• Under health care reform, the number of institutionally based palliative care beds has been cut and care has been devolved to the community, which is not necessarily supported to provide these services.
• At the same time, resources to support community-based care (largely home care) have not been increased proportionately. This forces caregivers to take leave from work or to leave their jobs permanently with no support to do this.
• The physical, emotional and financial burden on families is straining their ability to cope.
• A 1997 Angus Reid poll said that 90% of Canadians wish to remain in the comfort of their own homes yet only 6% of caregivers feel they can adequately care for their loved ones without hospice palliative care support.
• 75% of deaths still take place in hospitals and long-term care facilities; families often admit dying relatives to hospital when they can no longer cope with providing care at home.
• Few provinces cover the cost of medication needed in the home. As a result, many people suffer needless pain when they cannot fill prescriptions.
• Current physician billing schedules under provincial health plans need to be changed because they discourage physicians from practicing palliative care counseling; communication is not covered whereas procedures are.

National vs. Provincial Jurisdiction

What is offered in hospice palliative care services and programs varies greatly between provinces and territories. Since hospice palliative care is currently not part of the Canada Health Act, the federal government has no role in ensuring a standard of programs and services across Canada. Each provincial and territorial government is responsible for managing and funding health care services and programs including hospice palliative care. Services and programs can vary greatly between provinces/ territories and between urban and rural centers.

Hospice palliative care is predominantly funded by donations and private sources and involves large numbers of volunteers. Not having stable government funding makes providing comprehensive, accessible programs problematic.

Influencers and Players in Policy Setting

In the September 2002 Speech from the Throne, the federal government announced that it will modify existing programs to ensure that Canadians can provide compassionate care for a gravely ill or dying child, parent or spouse without putting their jobs or incomes at risk. This plan is currently being developed and at this stage appears to be taking the shape of an Employment Insurance type plan. An announcement on this plan and how the federal government will support it is expected in the February 2003 federal budget.

In October 2002, the Senate Standing Committee on Social Affairs, Science and Technology released a report entitled The Health of Canadians - The Federal Role (Kirby Report). This report included a chapter called "Expanding Coverage to Include Palliative Home Care". The Kirby report made five key recommendations that included:

• a $250 million per year co-funded National Home Care Program;
• an Employment Insurance type program for employed Canadians who choose to take leave to provide palliative care services to a dying relative at home;
• feasibility of expanding tax measures already available to people providing care to dying family members or to those who purchase such services on their behalf;
• expansion of the Canada Labour Code to allow employee leave for family crisis situations such as caring of a dying family members; and,
• a leadership role for the federal government as an employer that will provide job protection for its own employees.

In November 2002, the Commission on the Future of Health Care in Canada released its final report entitled Building on Values: The Future of Health Care In Canada (Romanow Report). The Romanow report made a number of recommendations related to hospice palliative care; most notably, that the Canada Health Act include palliative home care services to support people in their last six months of life. As well, Romanow recommended that the federal government introduce a new program to provide ongoing support for informal caregivers.

All of these recommendations are exciting and much needed. It is important, however, that changes to how hospice palliative care services and programs are funded and delivered are not made in an ad hoc manner. Changes at the federal and provincial level must proceed in a comprehensive manner that will ensure the accessibility and availability of a wide range or required end-of-life programs and services. For example, if unplanned, Canadians could end up having a national caregiver protection program that provides some support to family caregivers but not other services that are much needed such as respite, access to hospice palliative care professionals 24/7 and other necessary medical expenses. One fear is that more health care services will be downloaded onto the backs of Canadians families without the supports needed to accomplish this in a caring manner.

Leadership in the Hospice Palliative Care Field

There have been many leaders and advocates for quality end-of-life care in Canada over the last 25 years. Hospice Palliative care is currently at an exciting stage of development with more and more Canadians demanding quality end-of-life care. Caregivers, hospice palliative care professionals and volunteers know that these services and programs need more stable funding sources in order to be available for all Canadians. Endorsement of these programs and services as core funded health care programs and services is essential.

In 2000, the Senate of Canada issued the report Quality End-of-Life Care: The Right of Every Canadian. This report made strong recommendations to ensure that Canadians have access to high quality end-of-life care. Senator Sharon Carstairs, Leader of the Government in the Senate and Minister with Special Responsibility for Palliative Care has been an untiring and remarkable advocate on this issue since the issuing of the 2000 report.

References

Contact these Web sites, e-mail addresses or toll free information line to obtain referral information on all provincial hospice palliative care associations.

Living Lessons® - The GlaxoSmithKline Living Lessons® - Toll Free Information Line is 1-877-203-INFO. The Web site is: www.living-lessons.org

CHPCA e-mail addresses - info@chpca.net or info@acsp.net

CHPCA Web sites - www.chpca.net or www.acsp.net - Look for current reports and media releases.