The Conversation: Dying Matters' Blog

I was at a “Meet Macmillan” conference a few days ago. Our family has a lot to thank Macmillan for. It was a Macmillan nurse who made it possible for our son, Neil, to die in his own home, and that is why my wife, Dorothy, and I (right) are fund-raisers for Macmillan. Not in any sense to "pay back" what they did for Neil and for us. That’s impossible. We just want more people to have a better end to their lives, and we believe that this is not only possible, but achievable in the short-term.

The important thing for us is that the nurse was the right person, in the right place, at the right time. Neil (below left) had a horror of hospitals almost amounting to a phobia, so when he found himself in one towards what was, though none of us realised it at the time, the end of his life, he was very frightened and deeply determined to get out. He asked over and over again, "When can I go home?" In our innocence, we kept telling him that he could go home when he was well enough to look after himself. Nobody told us that there was the possibility of care at home for him. After all, he was a young man and he was going to get better. We had to believe that, as he did. It took the right person with the ability to make things happen, at the right time, to ask the right and all-important question: "Neil, what do YOU want?" The result was that Neil was moved to his own home and given 24/7 care. As it happened, he didn’t need it. He died six hours later. But it is a comfort to us to know that he was where he wanted to be.

Unfortunately, in the weeks and months before his death, nobody ever talked to us as a family and explained that Neil might not survive. Nobody suggested that we might spend our time enjoying our life together as a family. What we needed was the right person at the right time in the right place. I don’t know how we would have reacted to the information. I know it would have been a devastating shock, but then his death was exactly that – a devastating shock, because we weren’t expecting it until the last minute. We know now that we could have spent his last weeks and months much more profitably as a family, and that knowledge haunts us.

As I write this, I am reminded of a close friend, Maureen, whose husband Fred died a few months ago (Maureen and Fred, left). After his death, Maureen told me of her deep anger and guilt at the circumstances of his death. She asked me to record the interview and to use it in any way possible to help change things, so that no-one else would have to go through the same thing.

Fred knew he was dying and had made his wishes clear to Maureen, his son Ian and the District Nurse. His dearest wish was to die at home with his family. Unfortunately, when Fred started to vomit blood, the District Nurse was on holiday, and the nurse who came immediately called an ambulance. Despite Fred and Maureen’s protests (Fred was perfectly able to express his views), they took him to hospital. All Fred, Maureen and Ian wanted was to be together. After an horrendous experience in hospital, Fred died as a crash team tried to resuscitate him. He was frightened and in pain. Maureen and Ian were excluded from the room. It was all so unnecessary. Fred was dying, and the family knew it. They just wanted to be with him. That’s why Maureen is so desperate to help improve end-of-life care. If only they had had the right person in the right place at the right time.

And yet, it doesn’t have to be like that. I have another friend, Carol (pictured below), who has just retired as a carer in a care home. Some months ago she called me very upset. Two of the residents had died in hospital after being taken there by ambulance. They died in great distress, surrounded by people they didn’t know, in strange surroundings, with frightening equipment at their bedside, and amid the rush and noise of a busy hospital. That’s not how they wanted it to happen. The care home was their home, their place of residence. The staff were their friends. It hurt Carol and the other staff to know that at the end, these two residents had not had their wishes considered. It wasn’t malicious. It was simply that a bank carer had realised that the residents had become very unwell and had called for an ambulance. After that, things took their course.

A few weeks later, Carol called me again. The same scenario had occurred, but this time with much more positive outcomes. Because she had kept in contact with the GP, and made sure that a system was put in place where residents’ wishes were recorded and passed on to all staff, two residents had ended their days in the care home, where they felt comfortable and at home, surrounded by the people and objects that mattered to them.

It is possible to change the system. It is happening, and I have been delighted to receive more and more emails and phone calls telling me of people who had experienced the end of their lives in the circumstances and places where they felt comfortable. In most cases, it was simply because the right person was in the right place at the right time. Nothing really eases the pain of losing someone close to you, but we can do so much to give people what they deserve – the right to die well. Surely, that’s worth fighting for.

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