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Abu Dhabi, UAESaturday 22 September 2018

End of life care is not a luxury. It is at the centre of a caring society

A UK court case stirs the mind of HA Hellyer and raises many ethical questions

The Royal Courts of Justice on The Strand in central London. AFP
The Royal Courts of Justice on The Strand in central London. AFP

This week, the high court in England will preside over an important case. It will hear a challenge to the 1961 Suicide Act, which forbids suicide and assisting in suicide - a challenge brought by a patient who was diagnosed as terminally ill. It’s a case of deeply pertinent ethical proportions.

I’ve cared for people close to me and have watched them slip away. Some years ago, one relative died after a deeply debilitating illness. I’m sure many of you can relate to that kind of experience. I can and do understand that there are many people who are sympathetic to the idea that we should end people’s lives before they naturally pass away, because their existence has become so difficult. But while I understand their feelings, ultimately that kind of approach doesn’t imbue human life with more dignity. On the contrary, I believe it lessens the value of human life and I hope the court agrees.

The arguments for euthanasia depend greatly on a particular type of certainty - that we know, for a fact, that an individual will die in a certain way and at a specific point in time. The truth is, medical science doesn’t have that answer, and most likely never will. Medical science can suggest likely patterns - it can estimate, on the basis of past or similar cases - but it cannot be sure. Often the estimates are simply incorrect.

Seeing people I’m close to go through difficult times due to illness, I also am reminded of a very key reality: that friends and family who care for their loved ones towards the end of life have truly beautiful experiences together. As hard as it was for me in one particular case, it was something I would not have traded for the world. It allows you to serve in a way you could never have dreamed possible. I am also aware of the argument that changing the laws against suicide would give doctors powers that they frankly ought not to have and could potentially discourage the search for cures to debilitating diseases.

But those who argue that people suffering from difficult, life-limiting conditions, do not always receive the right kind of care, make a valid and profound point. The fact of the matter is, palliative (end of life) care is incredibly poor in far too many places in the world.

In some countries, the idea of palliative care is compared to ‘turning patients into drug addicts", which is as ridiculous as it is morally repugnant. But because the perception persists, the funding and support of this truly indispensable part of the medical establishment suffers enormously.

But it doesn’t need to be like that. There are some truly incredible examples of end-of-life care. I had the opportunity to observe the work of the Jersey Hospice Care team in the Channel Islands, and it is a phenomenal place, to be sure. The care, generosity and kindness their staff show patients and their families are beyond admirable, and it is all provided free of charge. That is down to the charitable contributions the hospice is fortunate enough to receive. But funds don't make an institution. People do. The staff at the Jersey Hospice, from the nurses to the administrative staff, all take very seriously the calling of caring for those in profoundly challenging circumstances.

Rather than seek to change the laws forbidding suicide, which protect the sanctity of life, we should be looking to ensure that those who do have life-challenging conditions - including conditions that are diagnosed as terminal - are treated with the utmost dignity.

It’s not the easiest of endeavours, and the reality is that far fewer people want to give their money to care for those who have a limited time to live. Charitable foundations, presumably, have a much easier time raising funds for research into cancer cures, for example, than for caring for those who are already diagnosed as terminal. That is where attention must change, towards recognising that end-of-life care is not a luxury or an optional add-on, but part and parcel of a caring society. No matter what medical condition a human being has, he or she deserves to be treated with respect and decency.

Dr H A Hellyer is a senior nonresident fellow at the Atlantic Council in Washington DC and the Royal United Services Institute in London

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