It slowly crept into her life along with the full-time job, the marriage and the children.  Without knowing it, Ruth found herself caring for her dying mother and becoming a caregiver in crisis.  Ruth’s story portrays the importance of the family caregiver as an integral part of our formal health care system.  The 1999 Conference Board of Canada study found that before long, one in four baby boomers will be facing end-of-life issues and offering support to a loved one who is living with, or at risk of developing, a life-threatening illness.  Many others will be thrust into this role after receiving shocking news of a loved ones’ terminal illness.

 

“Every Canadian has the right to die with dignity, free of pain and surrounded by their loved ones in a setting of their choice” says Sharon Baxter, Executive Director of the Canadian Hospice Palliative Care Association.  She goes on to say, “It is our responsibility as Canadians to become informed about the choices open to us and the services available to us within our communities.”   However, Ms Baxter does admit, “The fact is palliative care is a hit-and-miss prospect across the country.”  An Ipsos- Reid poll released in 2004, found that 90% of those surveyed wanted to die in the comfort of their own beds and yet Statistics Canada figures show us that 69% of the 223,603 people who died in 2002 were in hospital. 

 

The Ontario government is in the process of transforming health care to address these issues, investing in the system to make it possible for more residents to be able to die at home, where they want to be, and create more options outside of hospitals if they are not able to stay in their homes. Dr. Balfour Mount, the man responsible for our modern-day   Hospice Palliative Care in Canada, recently told reporters of the Ottawa Citizen (Andrew Duffy, Pauline Tam – A Revolution in Dying, Friday, April 22, 2005), “I’m pleased about the fact there are provincial and national associations, that decision-makers have at least heard the term ‘palliative care.’ We have made that much progress.”  Dr. Mount supports the transformation of health care as a means of reducing the escalating costs within the system.  In the same article, he stated, “Clearly we’re faced with very complex and difficult issues that we need to decide: priorities need to be set.  ¼ and I would argue that care at the end of life, palliative care – not just for cancer patients but for patients with all kinds of problems – needs to be a high priority because it’s one area where we can make a huge difference to human suffering at a relatively low cost.”

 

If this transformation is to be successful, caregivers need to realize that they are not alone.  Locally, a committee of palliative care experts, known as the Muskoka East Parry Sound Hospice Palliative Care Program, is in the process of designing an integrated system for the area residents.  Their vision is to better coordinate services and guide the provision of consistent, comprehensive, high-quality, and accessible end of life care and spiritual support to individuals needing hospice palliative care, and their caregivers, in the setting of their choice.  The guiding principles include care that is patient/family focused, safe and effective, adequately resourced, collaborative, knowledge-based and well researched.  Because persons/families living with life- threatening illness often require care in various settings at various times along the path of care, there is a need for service to be seamless with a single point of entry and one health record to follow the patient throughout their experience. Certainly, “One-Stop Shopping” would improve access to 24-hour on-call health services, good pain control and symptom management, home care services, volunteer hospice services and spiritual and bereavement support – all of the supports that Ruth would have needed to avoid becoming a caregiver in crisis. 

 

Members of the Muskoka East Parry Sound Hospice Palliative Care Program include: