Hospice care or palliative care are terms usually association with end-of-life care when someone is ill. For example, the Victoria Hospice program, which serves close to 800 patients and families each year, will typically have about 84% cancer patients and 16% persons who have ALS, end-stage heart or lung disease, AIDS, etc. Is palliative care, then, appropriate and available for older persona who are dying "of natural causes"? If so, how, where and by whom will this care be provided? If we look at a useful definition some answers may emerge: Hospice care or palliative care is an interdisciplinary program that provides active and compassionate services to comfort and support individuals and families who are living with dying from an advanced progressive illness, or are bereaved.
Palliative care programs have an additional role in care for those other than the dying. One aspect of palliative care is palliation. It is the application of one or more specific interventions to bring about the relief of specific symptoms. Palliation is fundamental to the provision of all health care and therefore palliative care programs have a role in advocating, teaching and supporting effective palliation.
It seems then, that hospice or palliative care programs will not be involved in care at the end of life for elders dying of natural causes. However, as the definition states, hospice and palliative care programs take responsibility for educating other health caregivers about the theory and practice of palliation. This aspect of care at the end of life is essential if quality of life is to be maintained.
When we speak of quality of life we are actually looking at a complex field. Here are some of the factors that influence qualify of life for elders, with a comment on how the ideas of hospice or palliative care can make a difference.
When we look at physical and emotional symptoms, we want to be able to manage them so that a person is comfortable in body, mind and spirit. When we look at support of function and autonomy, we want to help people maintain control over their lives and decision-making power. Care planning allows thoughtful discussion to occur before there is a crisis, and enables people to express their clear wishes about the kind of care they wish to have when they are nearer to death. This will include discussion of where the individual would like to be (home, facility), what their attitude is toward resuscitation (CPR) and what specific kinds of care they wish to have or to avoid. Communicating these ideas with family, physician and others and perhaps formalizing them into a Living Will can make it much more likely that the person will have the care they desire, even if they become unable to make their own decisions at the time. New Guardianship legislation will be proclaimed by British Columbia early in the year 2000 that gives clear legal status to this kind of effort. Quality of life also involves the satisfaction of person and family members concerning the care they receive, in whatever setting, and the ability to discuss and question it. For those whose care is primarily provided by the family physician the chance to discuss openly and honestly with the doctor would be a great help. Sometimes this can be accomplished simply by asking for it!
A key factor experienced at the end of life is called family burden. Even though there is no particular illness, the demands of personal care, companionship and support may be difficult when the caregiving spouse, too, is elderly and frail, family members are living elsewhere, and supports are not in place. Planning and accessing what is available through Home Care Nursing, Home Support and other services of the Capital Health Region needs to be co-ordinated with the family physician and any resource people available.
These factors that so clearly impact a person's qualify of life are complex and inter-related. Advice and information is always available from the Victoria Hospice Society and the Family Caregivers' Network Society.
(By: Jerry Rothstein, Victoria Hospice for "Network News" Part Four of a Six part Series, Vol. 13/Number 4, November 1999)
