Views & Reviews Personal View

My mum wanted assisted dying but we watched her die slowly and in pain

BMJ 2012; 344 doi: https://doi.org/10.1136/bmj.e4007 (Published 13 June 2012) Cite this as: BMJ 2012;344:e4007
  1. Tess McPherson, consultant dermatologist, Churchill Hospital, Dermatology, Oxford OX3 7LJ, UK
  1. tess.mcpherson{at}msd.ox.ac.uk

My mother, the general practitioner Ann McPherson, was passionate about a change in the UK law on assisted dying.[1] This was a lifelong mission, and as a child I was aware of her honest approach to death. Few of us, even doctors, are familiar with the reality of a drawn out undignified death, but my mum had seen many patients and their families suffer this reality and had felt impotent within the law to help. This makes the manner of her death almost a year ago even more poignant.[2]

Mum was diagnosed as having pancreatic cancer in 2007. She recognised the symptoms early, and because of this—and perhaps more importantly because of her tenacity—she survived until May 2011. We felt that she would go on forever. I had mixed feelings about her becoming so prominent in the assisted dying debate. I would avoid reading her articles or watching her appearances on television. Initially I wasn’t sure why she would want to invest so much of her limited time and energy in this. I also felt ambivalent about the issue and uncomfortable talking about the subject, which felt complex and ugly. Mum changed this for me—and for others too. This is my personal account of watching her die. But I am sure anyone who has been through these days, hours, and minutes will understand the frustration of watching an extremely dignified person die stripped of his or her dignity.

For at least three years, mum’s life with cancer was worth living. She put up with many “new normals” as she called them, such as taking regular morphine to control pain, having an afternoon nap, smelling at times toxic; having a chest drain, which she drained daily herself; and eating only baby food. She put up with these, and others, and was always grateful for the medical support and interventions that made her life possible, to continue her work, to spend time with friends and family, to enjoy the days she knew were so precious.

On 3 May 2011 mum had had enough. A recent scan had confirmed what she already knew. The cancer had spread to around the gastric outlet so that she could no longer eat anything solid and even fluids were difficult. Her chest drain had started to leak and was pouring out fluid that drenched her dressings. She had lost so much weight. She was getting pressure sores. She had had enough.

Mum had prepared us for this moment; although there had been other times when she had thought she might die, this was different. She wanted to die; she needed to die. We did not want her to die of course. My sister was a month away from having her first child, a grandchild that mum desperately wanted to see. We all came to be with mum. Her general practitioner set up a morphine drip for the now uncontrollable pain and discomfort. Mum said that she hoped to drift away that night, but there was no drifting away. What followed were three weeks of living agony. And through these last three haunting weeks of mum’s life we were unable to help in the way that she wanted. Mum had seen this in her patients only too often.

Day by day she did not drift away. She had become tolerant to morphine after taking it for two years. She needed her dressings changed at least twice a day. Even at this point she was generous in love, always describing my dressings as the best. She felt ill in a way that only dying people can feel, and she knew that she would never feel any better. She resented life now. She no longer enjoyed seeing people, could no longer eat or walk, and could barely talk. But she did manage to express that she felt “bloody awful” and would rather be dead.

In the months leading to mum’s decline I came to realise the importance of her mission. This was not a mission of personal gain. Her life’s work was about hearing and improving patients’ experience of the health service. Death is perhaps the ultimate patient experience. She used her illness with incredible bravery to become a voice for terminally ill people that is rarely heard because they are ill, weak, and tired. Mum would have liked a different death, but her aim was to stop these deaths for others. She always knew that it would not be in time for her.

The weeks before she died were terrible. She was becoming a shell. Downstairs we would eat hearty meals that people had generously cooked for us while mum sat on the sofa or on a bed with her mouth gaping open. We would try to dress and move her, but it became increasingly difficult. By now she had two morphine drips, one in each wasted leg, which needed re-siting often. Her drain site poured fluid; her bed clothes were drenched. Her last spoken words to me three days before dying (while I was trying to change her nightdress with a lovely carer) were “Hold . . . my . . . head.” There was no dignity. There was no mum, just a wounded animal who needed drips changed.

After each night we expected her not to wake, but her body fought on. One night dad found her collapsed trying to go somewhere but unable to tell us where. She could not receive the drugs that would relax her tiny gasping frame. She was literally wasting away. My brother and sister were up and down from their homes and families. They were not coming to say goodbye—that had been done weeks earlier—just to sit hopelessly. It is an honour to care for someone you love, but it no longer felt honourable to try to care for someone who wanted to be dead.

On the final day the doctor was getting the syringe drivers ready when something changed in my mum’s breathing. The nurse explained that she would die soon and left us. We were with mum, and that was what she wanted. As she died her body seemed furious with its final fight, gasping to the end. With a desperate haunting shudder from mum I found myself sitting in pools of expelled fluid. That was not what she wanted. Mum had seen this happen before and wanted it avoided for future patients and their families. It is simple: the law needs to change to allow terminally ill but mentally competent people the right to a more dignified death than my mum was allowed.

Notes

Cite this as: BMJ 2012;344:e4007

Footnotes

  • Competing interests: The author has been a member of Healthcare Professionals for Assisted Dying since June 2011.

  • Provenance and peer review: Not commissioned; not externally peer reviewed.

  • Heath I. What’s wrong with assisted dying? www.bmj.com/content/344/bmj.e3755

  • For all BMJ content on assisted dying, go to our specialty portal, www.bmj.com/specialties/assisted-dying

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