Lessons from the end of a lifeBMJ 2004; 329 doi: https://doi.org/10.1136/bmj.329.7476.1244 (Published 18 November 2004) Cite this as: BMJ 2004;329:1244
- Ros Levenson (firstname.lastname@example.org), independent researcher and policy consultant and visiting fellow
- King's Fund
This is the story of the final chapter of my mother's journey through dementia up to her death just after her 83rd birthday. The story includes extreme kindness and sensitivity from some doctors, nurses, and other health professionals, alongside crass, ill judged defensiveness from others.
After almost two years in a care home, which followed several years of gradually worsening dementia, my mother became unwell and much less responsive than usual. She was admitted to a hospital medical assessment ward for investigations. No specific ailment was diagnosed, though she was having trouble swallowing.
The speech and language therapists declared her “nil by mouth”—unsurprisingly, as she was asleep most of the time. A few days later a nurse told me they had been unsuccessful in putting in a nasogastric tube and intended to try again later; after that my mother would need a “PEG.” I don't recall any explanations of what a PEG (percutaneous gastrostomy tube) was, but I knew what it was from my work. I also knew that my mother wouldn't want this. She had made it clear that she hated being “messed around with.” In recent months she had resisted even having her nails cut, hair washed, or dressings changed.
She had been frail and desperately miserable for a long time and had declined steeply since my father's death nine months earlier. If she expressed emotion, it was to …