Terminally ill man behind Church of Scotland assembly on the 'really difficult' assisted dying conundrum

Now, a man who delivered a powerful address to the Church of Scotland’s General Assembly about his own experience with life-limiting disease has called for a major upsurge in investment in palliative care and questioned the assisted dying legislation passing through Holyrood.

John Williams, 71, has been undergoing dialysis treatment for the past seven years - a situation complicated by the fact he has also been diagnosed with cancer of the small bowel that has spread to his lung and spine.

Such health problems have given Mr Williams cause to think deeply about assisted dying, an issue that has occupied the minds of those in the church, MSPs and wider civic Scotland in recent months.

It has also made Mr Williams even more aware of the crucial and compassionate services provided by palliative care specialists, having been referred to St Columba’s Hospice after being referred by Dr Tony Duffy, his palliative care consultant.

Call for hospices to receive better funding package

He said he wished he had been made aware of palliative care sooner, and described the resources afforded to hospices as a “disgrace” that had to be urgently addressed. “There just isn’t the capacity there, and the number of people who die in hospices is just a tiny figure,” he said. “The hospices are just not supported or properly funded and they need volunteers just to run things.”

As things stand, Mr Williams, who has no idea how long he has left to live, said he could not support the Assisted Dying for Terminally Ill Adults (Scotland) Bill that passed an initial vote at Holyrood last month. But he said there was an opportunity to work towards “better” legislation provided key issues were addressed.

“How are you going to square doing this with the medical profession - how is that going to work in practice?” he said. “I think that’s the really difficult one. It’s not going to be easy, whatever happens, and I honestly don’t know what will come next, but there has to be detailed thought given. I’m concerned the Bill is being rushed through.”

The Bill, brought forward by Scottish Lib Dem, Liam McArthur, will go back to the Scottish Parliament’s health committee for stage two, with a deadline for amendments in the autumn. Mr McArthur intends to bring in an amendment raising the minimum age at which people should be eligible to 18. It is expected there will be moves to impose a time limit on what is defined as a terminal diagnosis.

‘Why me and not other people?’

Mr Williams will be among those following the Bill’s progress. There have been times where the pain has been so great that he has considered stopping dialysis, and he knows that if his cancer becomes too heavy a burden to bear, that option will remain open to him. It is an option very few people have, and Mr Williams said he found it difficult to reconcile the fact that others living with terminal illness did not have such a choice available.

“You think ‘why me and not other people?” he told The Scotsman. “I can understand people who want to go down that road. I just hope that anyone who does it does so for the right reasons, and that everything else has failed. You’ve got to be really, really careful as to how it’s worked out and what discussions take place beforehand.”

Such conversations are something Mr Williams draws strength from and, for the time being, he is hopeful that he will be able to manage his cancer and continue dialysis.

“Obviously, some people will say that God will decide when it’s your time, but I think it depends on how you look at it,” he reflected. “It’s like the parable of the drowning man who refuses a lifeboat and a helicopter, and when he meets God, it’s explained that it was God who sent the rescuers.

“At present, the medication I’m on is not working great, which is down to the spinal cord cancer, and I can’t get radiotherapy for that. It’s a case of changing the medication quite drastically. If I can keep doing that with dialysis and the cancer keeps in check, I’ll keep going.

“But if nothing was working, and I found that I couldn’t get anything under control, would I consider stopping dialysis? Yes, I would have to consider it, because even with palliative care, I’m going to be in trouble. But now is not the time to have that conversation.”

‘Sharing your story is so valuable’

Since 1974, Mr Williams has played a crucial role in the assembly, working as an audio-visual technician to ensure a phalanx of cameras, microphones and screens are fully operational so as to allow those in Edinburgh and further afield to follow the proceedings.

But after more than half a century behind the scenes, Mr Williams was at the forefront of this year’s gathering. Although he is not a commissioner, he was invited to address the assembly by Rev Dr John Ferguson, convener of the church’s working group on assisted dying.

After delivering a 14-minute speech, during which he spoke candidly about his own treatment and the plight of others, he received a rousing ovation, with Moderator Rt Rev Rosie Frew thanking him for sharing his story “so openly and so honestly”, and for helping people to understand what he was going through.

Mr Williams said that although the decision to speak out was not something he expected to do, it was useful - both to him and, hopefully, others. “I’ve told people what I’ve been going through and I’ve been honest at every stage,” he added. “Sharing your story is so valuable to people and just talking to folk is really important.”