OPINION: The greatest responsibility

LOSING a loved one to a slow decline in health with often painful and always distressing symptoms, is really tough. We know they are in pain and discomfort; we understand that they are gradually slipping away from us, yet we are powerless to help them.

Many opt out of life-extending drugs which can be distressing for families, and others struggle with the intensity of treatments, the goal of which is to extend the time they spend with others for as long as possible.

If we had the option to assist these loved ones to die, peacefully and painlessly to minimise their suffering, could we do it?

I remember watching my dad go through this very process a decade ago. Dying from laryngeal cancer, he could no longer speak and as his disease progressed, he became confused, smaller, a shadow of the man he had once been and we had known so well. He was uncomfortable, he did not want to go anywhere and he had had enough. He had rejected a final course of chemotherapy. He knew the treatment would only extend his life by a few months and did not want to put himself through that gruelling process again, a decision we, as his family, were initially very upset by, yet with time understood.

I knew him well enough to know that he would not have wanted things to end this way. He told us as much too. Given a chance, he would have wanted us to remember him as he was, to send him out on a good day, full of laughter and hugs, rather than lying unconscious in bed, supported by a syringe driver (a system of automatically administering drugs day and night which is often used to make the last few days more comfortable for terminally-ill patients). He would have happily avoided his family hovering around him for days, anxiously worrying and waiting for any sign he might no longer be breathing.

When he finally passed, I was hugely relieved and I felt terrible guilt as a result. I knew it was coming and the worry and anticipation about when that might be and what that might look like was exhausting. Grieving was to some degree painfully on hold, as though I too was holding my breath, trying to keep him where he was for as long as I could. Yet my dad had left us many days before that, in the moments where he could still communicate, laugh and smile and tell us how much he loved us. Those last few days in contrast had not been a life for him and we had all been unable to switch off, desperate to be close to him yet so upset by what he had become.

I know without a shadow of doubt that, had it been an option, my dad would have opted for assisted dying before things became too much for him to bear. What I don’t know, honestly, is if any of us would have been brave enough to let it happen.

I had a brief insight into how hard it is to make these decisions last week when I put my dog to sleep.

Don’t worry, I am not comparing the loss of a parent to that of a four-legged friend – although my dad would have found the comparison a flattering one, if that helps. I am however trying to get my head around what it takes to make those kinds of decisions and this was as close as I could possibly get.

Two weeks ago, I was told my little 11-year-old Maltese terrier was in late-stage heart failure. This came as a shock in the middle of the night when he struggled to breathe. Once he was stabilised by the great work of the vet and some excellent drugs, I agonised day and night over when to put him to sleep, so he never had to go through that again. I realised very quickly that this was an impossible decision. Too early and I risked feeling I had cheated him out of life, a callous murderer of a dog in his prime. Too late and he might suffer immensely in his last days, a selfish owner wanting to hang on to him too long for her own comfort alone.

So, I sought the counsel of friends, all of whom had been in this position at one time or another and all of whom had struggled with the gravity of the decision to end a life. They all gave me the same advice. Don’t leave it too late and let him leave on a good day. The consequence of this was that in his final moments, unaware of how ill he was, he was at his very best, dancing and performing for the vet and nurse as they arrived at the house. It was both heart-warming, a beautiful memory, but also heart-breaking as I had to bring this happiness to an abrupt end.

Holding him as he passed away peacefully, I recognised that this was the hardest thing I have ever had to do. I thought often in those days leading up to that moment, and in the days since, about my dad and his situation and whether I would have been able to do the same for him.

A hypothetical dilemma, of course, but had we had the chance to shorten my dad’s suffering, would we all have been brave enough and had enough emotional strength and support to make that decision, either with him or without him? What if we had disagreed?

Given this recent experience, I am honestly not sure. Taking the decision to end the life of a pet was extreme enough for me, never mind a parent.

Recent comments in this paper have suggested that assisted dying might save money on healthcare costs. Clearly this should never be a consideration for any patient and is extremely worrying as an argument. We owe it to our terminally ill to give them and their loved ones the option of ending their lives ‘on a good day’ rather than during deep suffering.

However, we also need an entire support network to be built around any such legislation to ensure the safety of those who are sick and to support the mental and emotional health of those having to make impossible life and death decisions.

Grief is earth-shattering for most of us and when guilt and the heavy responsibility of making those decisions is added, it could be too much for many to bear.

Family disagreements over healthcare decisions happen all the time and it would be inevitable that family members would disagree in these cases about the best course of action.

This won’t be the last time I have to make that decision on behalf of a living creature and the experience has shaken me to my core. Wielding the power of life and death over another person or animal is intense and a great privilege that we all need to learn how to be able to handle with the care and sensitivity it deserves.