To Achieve Radical Change End-Of-Life Providers Need To Address Some Home Truths

To Achieve Radical Change End-Of-Life Providers Need To Address Some Home Truths
Dignity in Dying

When doctors argue against assisted dying they are ignoring evidence that shows that greater patient choice is key to improving end-of-life care. Dying people need to know their voice matters and legalising assisted dying can bring about the culture change the medical profession repeatedly calls for.

This month Hospice UK, St Christopher's Hospice and the Royal Society of Medicine hosted an event called Radical change: a blueprint for the next 50 years of dying. The event brought together experts from palliative care, general practice, technology, design and the voluntary sector to explore what changes are needed to improve death and dying in the UK.

Unfortunately, the experts with the most insight - dying people themselves - were not present. If we want radical changes in end-of-life care, much more needs to be done to ensure we are listening to the people most affected by the issue.

Nonetheless, the keynote speaker at the event, Dr BJ Miller, a consultant in palliative medicine based in California, provided a moving and fascinating insight into his views on end-of-life care. He passionately believes in the principle of person-centeredness that underpins end-of-life care and argues that the shift away from over-medicalisation must be adopted by other specialities.

I took the opportunity to ask Dr Miller about his thoughts on assisted dying. He explained the importance of patient autonomy and the need to recognise that palliative care, no matter how good it is, cannot relieve all suffering all of the time. But he also expressed caution at the possibility that the assisted dying debate could risk distracting the public from the positive things that palliative care can achieve.

False dichotomies

As a respected figure in end-of-life care, Dr Miller's recognition of the benefits of assisted dying was refreshing and I share his concerns that the debate is susceptible to being warped. Yet this only happens when a false dichotomy is created, through which the only choice presented is one between enacting a safeguarded assisted dying law and improving end-of-life care. This is wrong: evidence shows both are needed and when both are present they work to complement each other.

Inexplicably, the source of the either/or myth is palliative care professionals themselves, who are willing to ignore robust evidence, such as a recent article in the New England Journal of Medicine, that shows end-of-life care can flourish in jurisdictions that allow dying people to exercise control over their deaths. Assisted dying can be a distraction for palliative care, not because law change isn't necessary, but because some palliative care doctors seem to expend so much energy fighting against it.

A shared view at the event was that a culture change is overdue: society needs to think about death in a way that leads to action; dying people need to be involved in decisions about their care; and treatment preferences need to be recorded, shared and acted upon. Doctors are central to this - caring for dying people as they want to be cared for should be seen as fundamental, not desirable.

But if professionals can't discuss dying (including the option of assisted dying) freely, are they really in a position to facilitate a death and dying culture change? Dr Miller said that prior to speaking at events he is often 'warned' that the issue of assisted dying might be raised. It is well known that fear of expressing support for assisted dying within the palliative care community in the UK is widespread, but such caution is indicative of attempts to control and limit debate.

Constructive engagement

Many palliative care professionals have lobbied Peers and MPs to block assisted dying legislation in Parliament. No doubt the same figures will be hoping that Noel Conway is unsuccessful in his attempts to change the law through the Courts. Noel is dying and does not feel the options available to him as he approaches his death are compatible with his human rights. When palliative care professionals argue against dying people like this it generates mistrust and exemplifies characteristics of medicine that the public find unpalatable. Dying people may have been absent from this month's event, but they must not be side-lined in the debate about what choices should be available to them.

Palliative care professionals do not have a monopoly over what dying should look like, just as assisted dying proponents do not have a sole claim to the aim of trying to relieve suffering. Bringing about a change in the way society deals with dying must involve both sides of the argument coming together, accepting the limitations as well as the accomplishments of medicine, and developing safeguards and systems for enabling and respecting meaningful patient choice.

Palliative care has become a walled garden: nobody doubts that the results inside can be impressive, and being removed from the rest of medicine has had undoubted benefits - for example a shift away from over-medicalisation and the recognition of dying as a holistic experience. But being so insular has limited palliative care's ability to connect with the world outside and a microclimate of paternalism has been allowed to develop, unchecked.

Radical change is certainly needed. Legalising assisted dying can be the catalyst for such change - no, it will not in itself solve every problem in end-of-life care, but ignoring it, or pugnaciously trying to make it go away, is only making things worse.


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