SJCSS recently had a conversation with Dr. Susan Burgess about palliative care, particularly on Vancouver’s Downtown Eastside where she practices and treats many patients with HIV and AIDS.
SJCSS: Why is it preferable to many people to die in hospice rather than in a hospital?
Dr. Burgess: Most people would choose to die at home. Unfortunately, very few people are able to do that on the Downtown Eastside and in this part of Vancouver. And hospital is really for people who have active medical conditions that are short term. Hospitals don’t look after our individual needs in a holistic way. Hospitals are there to fix a broken arm or treat a heart attack or something like that. As we come closer to the end of our life, we need that holistic care.
When you suffer from a non-curative condition, which we all will at some point, there are things that hospitals can’t provide for us, particularly if we have no home or family. So hospice is there for comfort, to be home, to support people emotionally and spiritually as well as physically.
When I think of St. James hospices, I think of home for people, where they can fully live. They are not just where people go to die; they are not death houses, but places where people’s daily lives are enhanced. Not the length of time, but the actual experience day by day, in all those elements: psychological, emotional, physical, and spiritual. It is home with all its components: relationships, comfort, food, an understanding of who we are.
SJCSS: Why is May’s Place Hospice still important, even now that HIV and AIDS are not as prevalent as they once were?
Dr. Burgess: The very first hospice in Western Canada was May’s Place and there was very good reason for that: the people at May’s Place had no homes or families or income to have any sort of appropriate care at end of life. So rather than building the first hospice on South Granville Street or in Shaughnessy or at UBC, it was here and entirely appropriate because that’s where the need was and there continues to be a need.
HIV is still very much with us. The people who do die of AIDS nowadays don’t die because there’s no way of controlling it. They die because they have mental illness or addictions, personality disorders or they’re homeless, and they can’t engage in the usual medical care. That’s true in the city but particularly concentrated on the Downtown Eastside.
So you’ve got people who not only still have untreated HIV or their treatment falls apart, but you have people whose liver has given up because of Hep C or drug and alcohol abuse; their lungs have given up because of histories of smoking all sorts to substances; their hearts are weaker; they have a long history of dealing with chronic illnesses that bring them to a point where they aren’t going to live very long. So everything’s worse down here and the general supports that a lot of us take for granted if we have trouble with our health are less prevalent here.
So May’s is really, really important. May’s is where most of our palliative care funding should be going in developing a model that looks at a continuum of care as residents of this community get sicker and come to the end of their life. Thank goodness St. James is trying to vision that and trying to find support for that, because there’s a huge need.