Deciding when end of life begins: The social aspects of disability in end of life decision making
At the 2006 VP-Net Spring institute the participants discussed how the decision that the end of life has come for some people is fraught with controversy and can be a subjective decision on the part of the physician or family members. Palliative care physician Marcello Garcia discussed how hard it is to identify when end of life begins for some patients. He explained, "I guess palliative care is just ‘palliating symptoms’ and you can do that through the whole life. So palliative care doesn’t mean only end of life." However, he explained that though people may have chronic illnesses, when they have to decide to enter palliative care they no longer expect to live more than six months. He used two examples of renal disease and a chronic neurological disability to illustrate the fact that there is a judgment call involved in deciding when end of life and therefore palliative care begin.
People can go on for many years with chronic renal disease as long as they’re getting dialysis, for the most part. And so what happens many times is we are called when that person decides himself or the family or the team that dialysis is no longer going to be offered. So their life is going to be limited…And usually we get involved at that point. And when it’s a person with a chronic neurological disability it will likely come to a point when that person is not able to drink or eat anymore and it has been decided by the family or the person or the team that that person is not going to be artificially fed and so that life is limited and probably that’s when we would step in.
Carol Gill recommended that palliative care workers consider the possibility that a patient has been referred to them not because they are on an inevitable trajectory but because they are not aware of all their options. It is in situations like this where palliative care workers need to consider the social aspects of disability and the impact these have on the psyche of patients and their own perception of their quality of life. She asked,
Do palliative care specialists ever feel that maybe those determinations are made prematurely either because the patient doesn’t know all the options that are available or there’s been some sense that either a health professional or others in the patients’ lives have seen their life differently than maybe they do or disabled peers might? How many times might a palliative care specialist have a person referred to them who has had decisions made for them or they’ve made decisions themselves that put them on a premature course to dying mostly because of withdrawal of supports?
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