Deciding when end of life begins: The case of a woman with a fluctuating condition
At the 2006 VP-Net Spring Institute Rhonda Wiebe, from the ethics theme of the VP-Net project, asked the panel to discuss "exactly what end of life care means?" She explained that she herself has "a life-threatening disability" which can cause her to become critically ill, in the intensive care unit, and yet recover and eventually return to work, only to get critically ill again. Her personal situation, and that of other people with fluctuating disabilities, "messes up some of the more traditional understandings of palliative care where there is a linear trajectory." She made the point that people often say ‘it is not your disability that will get you into palliative care,’ but this is not necessarily the case for people like her.
Palliative care physician John Seely acknowledged that pinning down when exactly the end of life is coming is something palliative care has been struggling with. He said, it is true that sometimes people are brought into palliative care because their doctors believe they are at the end of their life and yet they are eventually well enough to be discharged again or they simply remain stable for an extended period of time. He then stated that experiences like Wiebe’s can help develop the field of palliative care to better deal with the grey area that some people with disabilities may enter between palliative care and regular health care.
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