Views And Reviews Personal View

My mum’s decision changed my view of assisted dying

BMJ 2016; 352 doi: https://doi.org/10.1136/bmj.i1589 (Published 21 March 2016) Cite this as: BMJ 2016;352:i1589
  1. Emma Young,
  2. consultant in emergency medicine
  1. Newham University Hospital, Barts Health NHS Trust, London E13 8SL
  1. emmayoung1{at}nhs.net

It took time to understand what meaningful life was to her

On 6 February 2015 my sisters, aunt, stepfather, and I sat holding my mum’s hands as she died quickly, peacefully, and seemingly painlessly in the Dignitas house on the outskirts of Zurich.

My mum was a group psychoanalyst who defined herself, personally and professionally, by her ability to communicate brilliantly.1 In 2009 she noticed that she was struggling to find her words when talking and writing. Her handwriting had changed, and she had become unsteady on her feet.

She was thoroughly investigated and was given a diagnosis of neurodegenerative disease of unknown aetiology/atypical progressive supranuclear palsy. She received physiotherapy, speech therapy, and occupational therapy for her progressive disabilities. Within a year of receiving her diagnosis, she started to talk of wanting to die.

Palliative care

My view of assisted dying had been shaped by my experiences as a doctor and by my political and personal beliefs. I thought that, as clinicians, we should be able to provide palliative care to ease the physical and emotional pain of disease and dying. I thought that a patient’s desire to die was a symptom of depression, a reasonable reaction to debilitating disease: as such, it could be treated with talking therapy or drugs, or both.

I also thought that, as a society and within families, we should be able to make all people feel loved and cherished, regardless of their abilities. A newborn baby, unable to speak or even smile, can have an immensely powerful effect on a roomful of people, so our elders and the less able members of society could surely do the same.

In the next five years my mum’s ability to communicate in all forms deteriorated. She fell repeatedly, breaking several bones; her moods became increasingly labile; and her ability to undertake basic activities of daily living decreased. Despite neurological disease she could read aloud fluently, and her long and short term memory remained intact. She tried antidepressants and continued to see an analyst, but her determination to die persisted.

In 2014 my mum went to her GP to explain how she felt. Her GP explained that she could not help her with her wish, increased her antidepressants, and referred her to palliative care. The team worked with my mum and our family, finding practical ways to support her in her disease progression but also allowing her, and us, to explore her desire to die. The team members were clear that they could not in any way help her to die, and they presented her case to their ethics committee to consider what could and should be done.

During this time we talked, wept, and talked some more. We struggled to understand my mum’s feelings; we tried to support her, to make her feel loved, and to persuade her to continue living.

These feelings were hers

Slowly, it began to dawn on me that the way she felt was not about her family and loved ones or about society: these were her feelings as an individual. And this was not caused by depression: this was a decision about what she wanted and didn’t want from life, about what a meaningful life constituted to her. In the final months before she died I was able to tell her that, even though the idea made me ache with pain, I understood. My view of assisted suicide had shifted, not only personally but also professionally.

I resented having to consult with the General Medical Council and the Medical Protection Society about whether I could be at my mum’s death bed. I hated that we had to travel to Switzerland for her to have an assisted suicide. The two months it took for the UK coroner to release her body also rubbed salt into the wound, as we waited for our mum’s funeral.

The right to die is one that every person should have.

Footnotes

  • Competing interests: None declared.

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

References

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