The latter approach is palliative care. It is all about relieving physical symptoms, such as pain, nausea, loss of appetite and confusion, and catering to the emotional and spiritual concerns of patients and families. It ensures that care is supportive of patient dignity.
When people have access to palliative care services, they report fewer symptoms and a better quality of life. There are fewer emergency room visits and hospitalizations, and less use of intensive interventions in the last days of life.
Palliative care does not necessarily end when someone has died. Family members may need support as they grieve the loss of a loved one. Bereavement programs are often part of the comprehensive care that is offered. Unfortunately, 70 per cent of Canadians die without access to such care, and only 10 per cent die at home.
In January 2006, a feasibility report indicated there was a large unmet need for palliative care in Sudbury. The report pointed out that many individuals were admitted to hospital or placed in a long-term care facility at the end of life, even though most people expressed the wish to die at home amid a circle of family and friends.
There needed to be a better way.
Maison Vale Hospice opened its doors in September 2008. Since then, more than 800 people have entered the hospice, surrounded by a caring team of nurses, personal support workers, doctors and volunteers, and, of course, their families.
More recently, the hospice expanded its care with the new Shared Care Team, enabling patients to receive palliative care at home. The team includes registered nurses and psychosocial support, with the support of nurse practitioners.
The nurses facilitate the relief of pain and suffering by placing a permanent needle in the skin, through which caregivers can inject painkillers. It makes possible the use a drug to minimize oral secretions in patients who can no longer swallow.
The nurse practitioners are legally permitted to pronounce death, avoiding the necessity of calling 911. The Community Care Access Centre (CCAC) provides the hospital bed, the equipment and the day-to-day staff.
Referrals to initiate care can come from physicians or from the CCAC. You can call the hospice directly. The waiting list varies for hospice admissions, but is short for shared care. The requirement for eligibility for residential hospice care is a life expectancy of less than three months, declared by a physician. It is 12 months for the Shared Care Team.
Lauren Vary shared her personal journey — and advice — at Sudbury’s End of Life Forum in January.
“We contacted our local CCAC. Their people were a godsend,” she said. “They provided the personal support workers who were the essential front-line caregivers in our home.
“My strong, capable husband needed help getting in and out of bed, dressing, showering and eating. They contacted the (hospice) Shared Care Team. It meant that John could stay at home and die with support, in privacy and in dignity.”
Sudbury is fortunate to have a hospice and a Shared Care Team. For further study, please visit virtualhospice.ca. (http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home.aspx)
Lauren Vary’s presentation at the End of Life Forum is available at YouTube.com.
Dr. Peter Zalan is president of the medical staff at Health Sciences North. His monthly column tackles issues in health care from a local perspective.