What do we want in end-of-life care?
We need to talk about death and dying. As a society, we do not do either well and we do not openly discuss what we want from our end-of-life care.
The publication of the Gosport Inquiry Report is another reminder that the only time we do talk about death and dying is when it is too late; when something has gone wrong.
Although the report was clear that what happened at the Gosport War Memorial Hospital should not be seen “in the context of public debate over end-of-life care”, it does bring to the fore questions of medical ethics surrounding what we want from our health system and what those charged with our care should or should not be allowed to do. The report made this distinction because many of the patients involved “were not admitted for end-of-life care but often for rehabilitation or respite care”. Yet many of the treatment and prescription regimes were more suited to palliative and end-of-life care.
Why, then, is it that powerful painkillers, known to suppress respiration in high doses and thereby shorten a patient’s lifespan, were able to be prescribed so freely?
Simply because you are old or because you need respite care does not mean that you are at the end-of -life. Even if a patient were, to prescribe medication with the potential to shorten life would be to misunderstand the ethical responsibilities.
Palliative care is a broad area of medicine that treats those with life-limiting and terminal conditions. Importantly, in palliative and end-oflife care, the aims differ from those we are familiar with in other medical contexts. Focus switches from prevention and cure to quality of life.
To quote Dame Cicely Saunders, the underlying aim is to help people “live until they die”. There is no one-sizefits-all model of dying. The attempt to impose rigid protocols of care and treatment was exactly what created
‘Simply because you are old or because you need respite care does not mean that you are at the end of life’
problems with the implementation of the Liverpool Care Pathway several years ago. This was intended to be tailored to individual needs but was erroneously implemented as if it were a rigid set of guidelines.
There are limits on what can be done in palliative care. It is illegal for a doctor to intentionally assist with or hasten a patient’s death, even if that patient considers it would be a “good death” for them. Yet a doctor can prescribe the use of opiate pain killers knowing that their use will shorten that patient’s life if the intention is the relief of severe and intractable pain, and the shortening of life is considered an unintended if foreseeable side-effect.
This is the appeal to the Doctrine of Double Effect, a long-standing ethical principle used in medicine. Without it, many treatments with harmful side-effects would violate a doctor’s duty to do no harm.
The patients in the Gosport inquiry were treated as anything but individuals in an environment where the scope and limits of care were anything but clear.
But until we openly discuss what palliative and end-of-life care should involve, we run the risk of letting the wrong treatment for the wrong person pass by unnoticed yet again.