Friday, 27 March 2015

Memories of Dying

My mother died young, she was only 53. From the first visit to the doctor for swelling in her tummy to her death was only six weeks. She had cancer. The doctor sent her to hospital where they took a sample of fluid from her stomach and found cancerous cells. They opened her up and found there was nothing they could do; she was riddled with tumours that were strangling her digestive system. They drained her stomach and made her as comfortable as they could and sent her home. They recommended food with high fibre to stand a better chance of keeping her digestive system working and they gave us morphine to administer when she was in pain. They didn’t tell her she had cancer. They didn’t tell her she was dying. And she didn’t ask. They didn’t tell us what was wrong until my father insisted on knowing the prognosis and was told she had only a short while to live.

This happened in 1977 and often since then I have wondered whether or not the scientific advances in treatments of cancer in the intervening years could have prevented her death or at least have extended her life and that made me sad. She died too early in more than one sense of the word. But now on reading  “Being Mortal” by Atul Gawande I have for the first time re-framed her last weeks and thought again about the kind of death she did experience. It is probably true that today she may have had an operation that might have lengthened her life by a few weeks or possibly months, but now I wonder what she might have lost if she had been offered that possibility.

After a week in hospital my mother came home and life went on. And instead of giving control of her life to the doctors and the nurses, she had freedom. Freedom to decide what to wear each day and this brought her delight as we took her shopping for new clothes to fit her fading body. She had control of what she ate and when to eat it. She chose to continue to cook my father’s lunch as she had everyday of their 34 years of married life. She decided when she went to bed and when she got up. She was able to maintain her privacy and her dignity. She had the freedom to decide what those last few weeks of her life would be like, to decide what made life worth living for her.

It turned out that she didn’t ask for much. She liked having her own things around her, she liked having a purpose to her days and she did things she wanted to do. Ordinary things like going next door for a coffee, inviting her sisters over for tea, listening to her favourite music, and even finding a passion for Mozart, something she had never listened to before. She said she found it spiritually uplifting and consoling; the human passion for new experience was strong even when so close to the end.

She concentrated on spending time with her family. I visited her 3-4 times a week with my ten-month old daughter, my brother popped in each day. She spent hours pouring over the photo albums remembering and reminiscing over her life. This might sound like we all knew and accepted what was happening, but we never discussed the fact that she was dying. I lived in dread each day that she would ask me and I wouldn’t know what to say, but she never asked, it was never discussed. We all kept the secret. When she died I felt regret about that and wondered whether or not she knew she was dying. I was to discover that she did know. Her neighbour told us that two days before she died she had visited her for morning coffee and took some apple pie round. My mother was famous for her apple pie. She put it down to having “cool hands, perfect for pastry.” On this occasion she announced, “He’ll never have apple pie like this again.” And so revealed that she did know the end was near. Did she want to spare us the agony of talking about it, or, and more likely, it was just a habit of a lifetime – we never talked about anything deep or emotional in our family. All I know is that in those final few weeks when she knew she was nearing the end of her life, she shifted her horizons to everyday pleasures and the people she was closest too.

And what if she had stayed in hospital, what then of her need for everyday comforts, for the companionship of her neighbor, the chance to have her sisters and her mother and father, her children and husband pop round and visit. Sure they would have visited her in hospital, but at home she was the host. She produced tea and cake and got out the photograph albums and recalled her memories. I remember one particular day in her last week when she was dancing and singing to her favourite musicals. As the strains of ‘Carousel,’ ‘Seven Brides for Seven Brothers’ and ‘South Pacific’ filled the living room it conjured up childhood memories for me. I knew the words of all the songs and joined in the singing. I recall my small daughter, not yet walking bouncing up and down to the music and the pleasure this had given my mother. If she had been in hospital or even in a hospice she would have been denied that freedom. The focus of staff would have been on the procedures of the hospital, the monitoring of her body, the administering of medicines – all the routines and practices that accompany institutional life, that is merely a life on hold. At home she was able to decide what was important to her. When the pain became too much we administered the morphine and whilst I recognize part of her euphoria in her last days was drug-assisted, I don’t have a problem with that.

And yet I know that if we had been offered the hope of extending her life with an operation, to maybe remove part of the tumor, followed by chemotherapy and radiation, we would probably have taken it. We would have grasped a medical solution to an unfixable problem and I am now thankful we weren’t offered that opportunity. Treating an untreatable illness has consequences that I wouldn’t have known about if we had gone down that route. Instead of being tied to a hospital bed with tubes and monitors and machines, my mother had the chance to live those last few weeks on her own terms. She had the chance to make her last days mean something, to take comfort in simple pleasures and routines. That month of March at home saw the beginnings of new life in the garden and she delighted in the crocuses and daffodils coming up in the garden. Her pleasure in her new grandchild, the knowledge that life goes on.

So now, 38 years later I have taken some time to re-think the last few weeks of my mother’s life and I am so glad her fate was not put in the hands of doctors seeking only to prolong her life for a short time, and with this as their priority, not considering how she might want to live her last few weeks. I now consider she was lucky. She didn’t die in hospital attached to machines sustaining her organs beyond the time her body was able, unconscious but still breathing. Instead she died in her bed at home in private with her family nearby; she was saved the indignity of being unplug and de-tubed and switched off. She had the chance to say, “I’m sorry,” even though I have never been sure what she was sorry for. She had enjoyed autonomy, free of hospital rules and regulations; she was the author of the last days of her life. She wrote her own ending and I am very thankful for that.  

I have learned something important from this reflection and that is there are other priorities than merely seeking to prolong life. We should seek to relieve pain and suffering not prolong it. We knew at the time that the doses of morphine we administered probably shortened her life, but we wanted to prevent her suffering, relieving her pain gave her the chance to achieve what she wanted, what was important to her at the end.

Maybe modern medicine can extend the length of our lives, but that should not be our only priority. Gawande tells us that doctors today are reluctant to tell patients when their illness is not curable, and more than 40% of oncologists say they offer treatments they believe are unlikely to work. And we clutch at straws – do something, fix something, make it go away. We had no discussion with my mother on the subject of dying, we didn’t ask her how she wanted to spend the last days of her life and we weren’t offered any choices and so we took her home and that’s where I think most of us would say we want to be when we die.

I hope that if I am faced with terminal illness that my doctors and my family are honest with me, and give me the chance to discuss my end-of-life preferences. And although we never did discuss this with my mother, I now feel sure that she did in fact get what she wanted and I wouldn’t want to change that. What I would change for me is having a chance to discuss what I want. I want to the author of my life for as long as I am able and that means those around me should be prepared to talk about it – I was not brave enough and I regret this now. I think we are all afraid of death, even those with hopes for an afterlife, which I don’t share, but when it comes and if I know it is coming, I want to face my mortality and have the chance to express my hopes for the time I have left. And I want my family to help me achieve what is feasible. How we end our lives is the end of our personal stories and we should be given the change to carry on shaping those stories right up to the end for it is the end of the story that tells us how to evaluate the story as a whole – it is important, too important to be left in the hands of doctors alone.

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