End-of-life care decisions shouldn't be made in the courtroom
The case of 'M' goes to the very heart of this transition towards decision-making that values patients’ wishes above all else, says Compassion in Dying.
Most of us have strong views about being kept alive artificially with no prospect of recovery. A woman, known only to the public as ‘M’, was one of those people. She had lived with the progressive neurological condition Huntington’s disease for decades and was kept alive through artificial nutrition and hydration. M was unable to convey her feelings during this period, but her family were clear that she would not have wanted to continue living like this with no hope of improvement.
Her doctors agreed that it was not in M’s best interests to be kept alive in this way. They believed that she was minimally conscious, showing only signs of discomfort and reaction to pain medication. The family and healthcare team were in total agreement that the course of action that would best suit M was to discontinue treatment.
In order to protect themselves, doctors were obliged to bring the case to court. This was not a quick process. It took a year from deciding it was in M’s best interests to withdraw treatment to the point where treatment was actually withdrawn. The legal costs are thought have been in the region of £30,000.
If Mr Justice Peter Jackson’s ruling, issued this week, is to be followed, it would mean that future such cases would not have to go through the courts. Instead, the healthcare team could come to a decision about what is in that person’s best interests by discussing what that person would have wanted with their loved ones. If there is disagreement, the courts would still have an important role. But when all parties are on the same page, the requirement for a court intervention is unnecessary, absurd and detrimental to good patient care.
These cases are rare. But the way they have been dealt with until now is indicative of a deeply-held feeling of conservatism in healthcare and law at the end of life.
Developments in medical treatment, coupled with a lack of legal clarity for doctors as to where to draw the line between quality and quantity of life, have taken us to trepidation from doctors and uncertainty for patients. Paternalism has failed, yet instead of shifting the emphasis to the wishes of the patient, we have a legal and ethical fudge.
Thanks to the courts and a steady procession of landmark cases, slowly and gradually things are beginning to change. Judges are rejecting unnecessary interventions that provide little or no benefit and are promoting decisions that best deliver what a person wants from their care.
M’s case goes to the very heart of this transition towards decision-making that values patients’ wishes above all else. So too did the case of Paul Briggs, who was left in a minimally conscious state following a motorcycle accident and was later allowed to die after his courageous wife Lindsey battled through the Courts to have his wishes respected.
Healthcare professionals must take note not just of the outcomes of these cases but of what they represent. Patients need to be listened to. Not enough people are planning ahead for their deaths. Advance Decisions and Advance Statements remain chronically under-used and under-promoted in healthcare.
Nobody wants to leave a legacy of acrimony in the wake of their deaths. Nobody wants the uncertainty of not knowing how their loved one wanted to be cared for at the end of life. Nobody wants the courtroom to be the place where these issues are decided. Putting a person at the centre of their care means more than taking a judge out of the equation, but this latest ruling is a step towards something truly laudable.