What is artificial and what is natural?
The question of what constitutes ‘treatment’ is also controversial, particularly when it comes to the area of ‘artificial hydration and nutrition.’ Many people with disabilities who use adaptive technology throughout their lives do not see these as ‘treatments’ but merely as food and water. Many object to calling the use of these technologies as ‘dependency,’ which implies that these technologies decrease their quality of life, because this perception is not based on the experience of the people who use them but on the experience of non-disabled carers.
At the 2006 VP-Net Institute Carol Gill illustrated the negative power of the distinction between ‘natural’ and ‘artificial’, and how it may shape palliative care for people with disabilities and justify the discontinuance of treatment.
I would vote that we abandon the artificial/natural divide completely and choose another term ... I would vote for something more like "intrusive" or "unwanted" or "unneeded" or something like that rather than "artificial/natural" because so much of the lives of people with disabilities have been lives that have been judged "unnatural."12
In the dialogue between Harvey Chochinov and Jim Derksen,13 Derksen explained that what the medical community deems "suffering" may bear little resemblance to a person’s life experiences. He discussed how interventions, which people like Robert Latimer see as a "mutilation of his daughter," are often experienced far more positively by the people who use them.
Among the descriptors of people who are at end of life, where withdrawing or withholding treatment may be an issue, dependence on a wheelchair is seen in a negative way and it’s talked about in terms of ‘dependence;’ "dependence on artificial respiration", again its talked about as dependence. Dependence on a feeding tube for nourishment is dependence; inability to control bowel movements or urinary processes such that a person might need help in the washroom or might need to wear a diaper or you know incontinence supplies. All of those things are kind of set up as a list that describes a reduction in "quality of life," such that the person might not want to go on. And often that’s true of course. But, the perspective from the disabled person may be quite different; the wheelchair is a liberating tool, the feeding tube is a liberating means of acquiring nourishment, continence supplies or assistance in washroom activity are seen as liberating, enabling people.14
To illustrate how some medical interventions which are characterized so negatively become normalized and enabling in the lives of people who use them he related a story about an individual who was seen as heroic for receiving ‘breakfast’ through a feeding tube. What was essentially a basic, everyday occurrence for him was deemed extraordinary by others.
Disability and Palliative care: What can we learn from one another?
This section of the VP-Net Website will be used to illustrate how our multidisciplinary research can inform and transform two somewhat disparate communities’ views of palliative and end of life care by illustrating what we can learn from one another.
Change in the existing system toward the ideal of palliative care at its life-affirming best requires partnership between physicians and people with disabilities.15
John Seely discussed the role people with disabilities can play in helping recently disabled persons at the end of life learn to cope with change along with the education of people working in palliative care on how to support these people at VP Net’s 2006 Spring Institute
The disability community has a tremendous amount to teach us about how to help people cope with what seems like a tragic situation. And for many, losses of control really do seem to make life no longer worth while. So I think the disability community has something to teach those of us who work in palliative care about how we can help patients find hope and meaning in the face of those losses of control that they’re experiencing so they don’t give up. 16
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