Why I support the Mental Capacity BillBMJ 2005; 330 doi: https://doi.org/10.1136/bmj.330.7489.486-a (Published 24 February 2005) Cite this as: BMJ 2005;330:486
Now that the government has sent the Mental Capacity Bill—aimed at clarifying the legal position of living wills—to the House of Lords I reflect on my own experiences. My mother has recently celebrated her 88th birthday. There were presents, there was a cake with candles, and we gave a rendition of “Happy Birthday,” but instead of joy her faced was etched with confusion verging on fear. Everyone around her had an air of professional concern or of great sadness, for Mum has Alzheimer's disease.
The past eight years have seen her stripped of all the vestiges of her life as her memory faded. Born during the first world war, she had lived a normal life with its share of hardship. She had been fiercely independent and private and managed all her own affairs. Pride in the achievements of her family and pleasure in her grandchildren had sustained her through old age and widowhood. She abhorred the idea of being a burden to her family or the state.
At the age of 80 she became a medical statistic: one in five people over this age develops a form of dementia. Her attempts to rationalise the ever increasing chaos she caused around her led to suspicion and paranoid ideas directed towards everyone, including her loved ones.
A proud woman ended up being sectioned under the Mental Health Act, and her past five birthdays have been spent in a residential home for mentally ill elderly people. Treatment with drugs has at times worsened her behaviour or caused side effects.
My admiration for her carers is immense. They show genuine concern and gentle firmness in situations where my patience would have left me.
Mum is now entering the twilight years. She no longer knows her family. A woman who loved to cook and took great pleasure in producing meals for us all has now stopped eating and has faded to a shadow.
My mother never wrote an advance directive. I feel confident, however, that I know her exact views on her future care in this exact situation. In a long lived family we have dealt with similar problems, including her own father, who had a sad and protracted end with Alzheimer's disease. Mum had expressed very clearly how she valued her own autonomy and that if she ever lost this then no one should strive officiously to keep her alive.
As the final ravages of the disease slowly and inexorably take hold I want to be in a position to express my mother's wishes. I want her to be spared as much indignity as is possible. I want her to be spared powerful drugs or invasive treatments when it is clear to all that there can be no improvement in her quality of life. She would welcome pneumonia as “the old man's friend” and would thank no one for the extra quantity of life that modern medicine can bring.
As a general practitioner I deal with patients and families in a similar position. Every situation has to be considered separately. Not all families would be comfortable or feel in a position to influence end of life decisions. Many families, however, do discuss such issues openly and wish previously expressed views to be considered in treatment decisions. As practising doctors, surely our job is made easier when we can legitimately take such views into consideration?