My dad, Joel Joffe, died on 18th June this year. A memorial took place last week at St Martin-in-the-Fields – a moving tribute to his lifelong dedication to campaigning for justice, attended by his peers, colleagues, friends and family.
Everyone dies of course and there are many stories to be told, but Joel's experience was distinctive because, as Lord Joffe, he had twice introduced bills to the House of Lords to enable dying people to receive medical assistance to die when they felt that their quality of life was no longer adequate and there was no prospect of improvement. Despite the second bill incorporating many of the recommendations of a full committee inquiry and having widespread public support, it did not pass. Twelve years later, at the age of 85, Joel faced his own terminal illness, mesothelioma, a cancer caused by asbestos exposure which had also killed his brother Dan.
Joel had a lifelong history of campaigning for social causes both as a human rights lawyer defending Nelson Mandela, and as a leading figure in numerous charities. He was particularly concerned about the people he felt were most in need, about international poverty, global corruption, injustice. Why, then, was he moved to put so much energy into a campaign for assisted dying in the UK, which would be used by only a minority of people in their last few months of life?
Because Joel wanted to relieve suffering. Suffering means different things to different people according to what they value in life and their own personalities. For Joel, it was not just the prospect of physical pain, although he naturally dreaded that. As his illness developed, he lost the ability to do the things he loved and which gave meaning to his life. The illness was sapping his energy by the day, his muscles rapidly wasting away, and with it a loss of balance that threatened his safety. His voice was losing its power and he struggled to speak for more than a few minutes. He could no longer dictate to Liz, his P.A., or control his fingers on a keyboard. He wrote painstakingly by hand in spidery writing, and the notes got shorter each day.
My mother and my sisters encouraged him to enjoy what he could of life, the beautiful garden, music, his family. It worked a little – he loved his daughters being around him and the little trips out that we managed with the help of wheelchairs and walking sticks. We tried to get him interested in books or TV. But it was not enough for Joel.
His medical care was excellent. Joel had campaigned for assisted dying, but equally he was a long-time champion of hospices, and saw no contradiction between the two. Both can be valuable means to support people who are dying.
However, the diagnosis took many months to confirm and when it came, it greatly distressed my parents – not just because it was terminal, but because well-intentioned medical staff optimistically told him he might have up to a year left to live. They offered what they thought was hope, but unfortunately they were not listening to Joel himself. Faced with, inevitable death, Joel did not want to endure another twelve months of a life which was rapidly and irreversibly declining in value for him.
Knowing that he would soon be virtually immobile and in increasing pain turned this despondency to despair. He announced several times his intention to end his life while he was still able. He tried not eating and grew markedly weaker, but it proved not to be so easy for a man who loved his food, and my mother quickly tempted him back with his favourite dishes. Still he searched for a way out. He talked frankly about how difficult it was to kill oneself.
Eventually he died naturally, a few weeks after the diagnosis, with excellent care and surrounded by his family. The point is that he – and we – did not know he would die so soon. If the Assisted Dying Bill had been law, Joel would have had the assurance that he could die on his own terms when he decided that it was no longer bearable, without having to endure the prospect of prolonged deterioration until death. He would not have had to waste his last weeks searching the internet for ways to die, and we, his family, would not have had to witness him in that distress.
We received thousands of tributes to Joel when he died, testifying to the astonishing work that he did in the field of human rights and charity. I can think of no more fitting tribute than the passing of the assisted dying law which he campaigned for with such passion and which would have been so comforting to him at the end of his life. It did not happen in his lifetime, but I sincerely hope it does in mine.