By Dr Joseph Hawkins, Consultant in Palliative Medicine Woking and Sam Beare Hospice, Honorary consultant Ashford and St Peter’s hospital Foundation Trust. Email: Joseph.hawkins@nhs.net
When talking with a neighbour she remarked that her chimney was tilting; I looked and so it was. When I looked back at her she smiled and shrugged: ‘There are worse ways to go, I suppose’, she said to me.
I was aware that this neighbour’s husband had recently been told that he was going to die. The chimney seemed like it had become a focal point to their thoughts; a physical representation of the recognition that things were going to change and of the uncertainty of when that change may come.
As we spoke, my neighbour made it clear that they were going to wait and see what happened with the chimney; it seemed a clear statement; this was one uncertainty that they could make a decision about. The parallel between this and the observation that many of our patients and families will struggle with decisions about therapies or the future, was immediately apparent. Control of one’s fate, whether when considering a chimney or chemotherapy may be more important than the outcome itself, for some, perhaps many, of us. The assumption that quantity of life must be as equally good as quality is a natural conclusion when one is well. However, when we consider beneficence and non-maleficence in advance care planning, and particularly when considering treatment decisions-we should remember that the most important perspective is that of the patient’s. It is our knowledge of therapies that gives us confidence in recommending treatments but in doing so we may fail to acknowledge that the very acceptance of any therapy is also the willing surrender of control. Once embedded within a therapeutic pathway the individual becomes part of a system of appointments, tests, delivery of treatments and, like a leaf carried in a stream, has no choice in their direction. The decision to decline therapeutic options is a statement of control over one’s direction.
Modern medicine has become increasingly complicated and as such we see a rise in sub-specialty knowledge elevating many disease sub-types beyond the grasp of generalists and unrelated specialists alike. In parallel to the increase in specialization we see a trend toward self-medication with a variety of over-the counter supplements or similar. As the medicine that we prescribe evolves and becomes more complicated there is a natural push amongst patients to have solutions that they can grasp and comprehend. These understandable solutions can give them some measure of control.
In many areas of medicine we can become frustrated by the choices made by patients, be they the choice to start therapies we don’t agree with or to decline those that we recommend. However, what is best for the individual is their autonomous right to decide. In respecting our patients’ autonomy, even if we don’t agree with their decision(s) we may engender a greater bond with our patients; in time this may later allow us to help them in the future.
So when my neighbour expressed her thoughts about the tilting chimney I nodded; ‘I can see why you say that’, I said.
Consent to publish this article was obtained from Dr Hawkins’ neighbour.