I have compiled an e-book from the most popular Illusions of Autonomy blog posts, and I have reproduced the Introduction here. It’s available on Kindle here!
I wrote these posts to explain the words and actions of doctors in ethically challenging situations. It was a cheeky thing to attempt, as I could not pretend to speak for others in presenting the results of my own reflections. However, feedback from medical and non-medical readers alike soon confirmed that the descriptions reflected their own experiences, which came as a huge relief.
The posts fall into eight categories, but they have a common theme – a desire to explore how doctors balance their human qualities and frailties with what is expected of them. I focus on the way normal men and women react. How do they maintain compassion and reason despite constant exposure to the misfortune of others? How do they move between emotionally intense scenes without allowing the impact of the first to colour the outcome of the second? How do they discuss end of life care sensitively when time is short and the right thing to do seems ‘so obvious’? How, on a bad day, do they make patients feel central in their thoughts…when their thoughts are miles away?
One method is to take the essence of a real situation (drawn from my years of experience as a hospital doctor) and to enlarge it, dissect it, using imaginary dialogue. Another is to make a quick survey of the literature, or to examine a particularly hard case known to all in the media. In one post I analyse the evidence given in the Court of Protection (‘Quality of life projections: do doctors have any idea?’). In ‘A Never Event and the chain of blame’ I construct a completely fictional set of lethal circumstances. Throughout, care is been taken to dissociate fictional patients from those who were involved in the historical scenario that stimulated the essay. Confidentiality is never compromised.
Decisions taken with patients towards the end of life are developed within the framework of ‘Good Medical Practise’ (GMP), a series of guidelines published by the GMC. If all decisions adhered to GMP there would be no controversy. Every management plan would result from mutual understanding between patient and doctor. Their goals, their understanding of risk, burden and benefit, their fully informed consent to treatment, would be ascertained well in advance. If they lacked mental capacity, those factors would be agreed by those who knew them best. If only it were that straightforward! Many of these blog posts were generated by my reflections on scenarios that did not fit easily into that scheme; situations in which major decisions about life extending treatment had to be made quickly, in the absence of background information, in isolation from patents’ representatives… At times like these accusations of paternalism can arise; and autonomy can become illusory. The good intentions of doctors making those decisions have to be presumed, and the sensible application of their years of experience respected.
Something happened in 2012 to undermine that presumption of goodness – the Liverpool Care Pathway controversy. It was my horrified reaction to accusations of immorality and systematic euthanasia as they multiplied in the press that spurred me to begin writing. I could see trust in my profession eroding, and unjustifiably (in my opinion). The LCP furore appears to have died down now, but other scandals, such as wrongdoing at Mid-Staffordshire, or alleged cover-ups at the Care Quality Commission, have compounded the damage. There is much rebuilding to do. Perhaps, by being open and honest about the way doctors handle ethically complex situations, these posts can contribute in a small way to that recovery.
I am hugely grateful to the support of readers, especially those I have found via Twitter. Their positive feedback has kept me motivated.
Here is the table of contents:
Part 1: The psychology of doctors
The Onion Cellar: crying at work, crying at home
Disappearing doctors: the limits of medical debate on Twitter
The evolution of authority: confidence vs arrogance
The limits of responsibility
Part 2: Compassionate care
Medical relativism: on prioritisation, excuses and kindness
“It was as though I wasn’t there”: the problem of the invisible patient
Meaning it: acting, (in)sincerity and compassion on the wards
Compassion in healthcare: the separation trap
The visit: an interrogation of caring
Part 3: At the coalface
Hazard in context: the psychology of medical continuity
When paternalism = bravery: a ‘slow code’ dilemma
What we talk about when we talk about death: a case
Medicus Mendax: false final words
Hazard in context: the psychology of medical continuity
Part 4: Assisted dying
The day assisted dying became legal: choices
Assisted dying and The Christian Medical Fellowship: the mercy paradox
The Tony Nicklinson Judgment
Part 5: Medical error
Memory failure after medical error: the building blocks of experience
A ‘Never Event’ and the chain of blame
Fatal error: a doctor deals with the harm she did
Why Michael didn’t blow the whistle: pub scene
Part 6: Care towards the end of life and resuscitation
Not For This and Not For that: emphasising the positive in care for the elderly
Complaint: a grieving son meets the consultant who signed a DNAR form without discussion
A form of words: honesty kindness, coercion and early resuscitation discussions
Painful procedures at the end of life: a growing dilemma in healthcare for the elderly
A soft task hard to do: why we fail in engaging relatives at the end of life
Missed opportunities: the diagnosis of dying and the risks of delay
Substituted judgment and resuscitation: a case
Part 7: Quick, topical medical ethics overviews
Futility redux, and reset
Quality of life projections: do doctors have any idea?
Deeper water: religion, end of life care and the case for public disclosure
Part 8: The Liverpool Care Pathway controversy
Back to the source: a response to Patrick Pullicino’s Liverpool Care Pathway paper
Derailed: how the LCP controversy has changed family discussions
An assault of trust: in defence of the patient-physician relationship at the end of life
Paternalism at the end of life: a narrative from two angles
‘Challenge everything’: a junior doctor questions the LCP
London, June 2013