002 Problems with palliative care

I’ve just started my M.Litt dissertation.  My supervisor suggested the practice of writing something every day, something akin to a journal entry rather than a formal academic piece.

I have neither the time nor energy to write every day, but I will when I get the chance and I suppose why not put it out here for the 7 people who read this to see it, critique and hopefully give me some feedback to make it better. 

The basic idea for the thesis goes something like this:

How does modern medicine’s domination of how we die form problems for the Christian tradition of Ars Moriendi

Here’s what I wrote today:

NB Please don’t read this as a rejection of palliative care or a suggestion that others should reject it. Myself and my family have had tremendous interactions with palliative care professionals. 

Dame Cicely Saunders was the founder of the modern hospice movement. She saw her medical career and the development of the hospice as a calling from god. She devoted herself to the dying who she saw abandoned by the modern medicine whenever it realised that cure was no longer possible. She coined the phrase ‘total pain’ to describe, this was much more than physical pain but included the whole gamut of components that would later form part of ‘biopsychosocial’ model of medicine.

It is a reflection on the failing of modern scientific medicine to be present to the patient that the creation of the hospice movement and palliative care was required. It could be argued that all the hospice movement was providing was ‘good medicine’. Pain and suffering should always be addressed in medical care, why was a separate sub specialty required?

Jeffrey Bishop in his book The Anticipatory Corpse notes a change in modern palliative care. He sees it as a totalising influence in the patient’s life. His quotable phrase runs thus, “treating total pain with total care can be totalising.” [Bishop, Jeffrey Paul. The Anticipatory Corpse, 2011. p255] Palliative care, in an effort to establish itself in the house of medicine has sought to develop an evidence base for its assessments and interventions. It has attempted to define a quality of life and set out a path that those who are dying should navigate prior to passing. Its very development has led to expertise, and no matter how palliative care may seek to respect the consent and context of the patient, the very existence of an expert in the end of life commands an authority in the modern era.

Just as the white coat and the medical degree carries an aura of authority that the patient bows before, so too the dying will find themselves under the authority of the expert in dying. None of us are the free, autonomous selves that the principle of informed consent depends upon, and certainly the dying are defined more by their mortality and physical incapacities than most of us. As Hauerwas writes, “ironically, however, the stress on autonomy turns out to produce just the kind of ahistorical account of moral agency that so effectively disguises medicine’s power over us.” [Hauerwas, Stanley, and Charles Robert Pinches. Christians Among the Virtues, Univ of Notre Dame Pr, 1997, p168] Questionnaires on symptom control and spiritual well being come with assumptions and attached value. The Kubler-Ross model of the 5 stages of grief are not simply descriptive, they have become normative.

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September 2013

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