I've delivered palliative care as a doctor – we must give patients choice at the end of life
5 min read
Doctors, like all medical professionals, experience death and dying on a regular basis. Each and every one of us wants to do the best for our patients.
For GPs like me, very personal, even intimate conversations in the consulting room often reveal what patients really feel, what they fear, and what they hope we can do to help.
One case has stuck with me after 34 years in general practice – you could say it was what radicalised me.
He was a man in his seventies whom I knew well. He had intractable stage four cancer and was receiving excellent care from district nurses and palliative care consultants.
During one consultation, he turned to me and said: “Doc,” he always called me Doc, “can’t you just give me a pill, you know, for my back pocket, just in case it all gets too much?”
I explained that I couldn’t.
He was already too ill to travel to Dignitas. He was frightened about what the final stages of his illness might bring. Would he have fits? Would he haemorrhage? Would he become incontinent or lose his mind? He wasn’t depressed. He was resigned to what was to come.
I did all I could to reassure him that this was highly unlikely, but it wasn’t enough to reassure him. Three weeks later he ended his life by hanging himself. His family found him.
I felt a very deep sense that I had failed this man. I felt that out our profession had failed him. I felt that our society had failed him.
Now as a Member of Parliament I have the opportunity finally to help others who face that same level of fear and helplessness. And to spare other families the same anguish.
I have delivered palliative and end-of-life care to many patients, including this man. It cannot help everyone and I know that even with excellent palliative care many patients are terrified of death. It is this experience, more than anything else, that makes me so determined to see the assisted dying bill reach the statute book.
MPs supported it decisively on two occasions in the last parliamentary session, but a small number of unelected Lords abused procedure to block the bill’s progression. Their tactics were so blatant that even the late Rod Liddle, a vocal opponent, admitted: “My side won by cheating.”
On 11 September, thanks to the bill’s reintroduction by my colleague Lauren Edwards MP, we get the chance to ensure the Lords do their job properly this time around. Without cheating.
Of course, as the Prime Minister has said, we need to fix the funding of palliative and social care. Under his determined leadership, I am confident that we will.
I understand the shortcomings in palliative care over the last decade and I have campaigned hard on this issue.
In 2010, the NHS’s palliative care was the envy of the world. But even then, my patients were travelling to Dignitas in Switzerland for an assisted death. Worse, in about 600 cases annually, people were ending their own lives.
This is because end of life care and assisted dying address different issues.
Assisted dying is not something people receive instead of palliative care. It simply provides patients with choice at the end of life – a reassurance that they can control their own fate right until the very end.
Terminally ill people have seen relatives pass away in the most undignified of circumstances and do not want this for themselves.
But between 30 and 40 per cent of patients in Australia and California who register for assisted dying do not in the end use the option. As my own patient said, they want that pill in the back pocket just in case.
It’s important that we understand that assisted dying is not a choice between life and death. It’s about how you die, not if.
Far from being an alternative to improvements to palliative care, the evidence from overseas shows that providing choice at the end of life usually goes hand in hand with more investment and better provision of palliative care.
Yes, opinion among medical professionals is mixed. I have had constructive conversations with members of the British Medical Association, which represents more doctors than all the medical Royal Colleges combined. There appears to be a generational shift too. The evidence I have seen shows 64.5 per cent of medical students across the UK and Ireland agree assisted dying is ethically justifiable.
What we all agree on is that the status quo isn’t working.
What we have now is choice at the end of life but only for the wealthy. It’s there for those who have £15,000 in the bank. They can travel overseas while others are denied choice. Inequity is at the heart of the status quo.
As we prepare for the next Commons debate, I find myself reflecting on the more than 100 hours I have already spent in Committee and on the floor of the House debating this legislation.
I can’t help but react with dismay at the human cost of this delay.
The terminally ill people who have travelled thousands of miles to die far from their family. The people who have felt they had no alternative but to take their own lives. And those living with terminal illness today who are still hoping politicians will give them a choice over the manner of their own death.
If we believe in patient autonomy, the right to a dignified death, and upholding the democratic will of the people, then we must walk through the aye lobby on 11 September, again.
Dr Simon Opher MP is a working GP and the Labour MP for Stroud
