Medical dilemmas: who decides?
The tragic case of Charlie Gard highlighted what can happen when doctors and parents can’t agree on the best way to treat a very sick child. Ultimately, the courts were asked to decide, with the hospital and parents spending months involved in a legal battle over whether to withdraw treatment and allow Charlie to die. While it is relatively rare for cases to reach the courts, conflict between parents and doctors is more common and there is increasingly a need for formal medical mediation services to help resolve conflicts. While the breakdown in trust between doctors and families in these extremely challenging cases might be extreme, does it reflect wider changes in the way that medicine is practised in the twenty-first century?
The idea that ‘doctor knows best’ is being challenged not just by patients, but from within medicine itself. Paternalism is being replaced by a framework of shared decision-making, often described as ‘No decision about me, without me’. Increasingly patients are being asked to make their own decisions about major interventions, such as whether to have open heart surgery or alternative procedures, while the doctor’s role in decision-making is relegated to providing information about the different procedures. While the decline of paternalism is usually seen as progressive, bringing medicine into the twenty-first century, is it really the case that patients can take equal responsibility for their treatment? What if doctor and patient disagree about the best treatment? Should doctors be obliged to provide treatment in cases where their experience tells them it will be futile?
In parallel to this, public health appears to be moving in the opposite direction. The Nuffield Council on Bioethics, in their 2007 report Public Health: Ethical Issues, claims that that a majority of the population do not have ‘sufficient healthcare-related knowledge to act as fully autonomous citizens’. This is the basis for arguing that the state has a greater role to play in shaping decisions about aspects of lifestyle that might have an impact on our health.
So why does medicine appear to be pulling in different directions? Are we insufficiently knowledgeable about our health, or able to take responsibility for major decisions about treatment? Do doctors still have the authority that they once had? What role should the state or the courts have? Who, ultimately, should be responsible for making decisions about our health?