Everything I’ve
heard about nursing homes was evidently just a smokescreen for the real issue.
People faced with care facilities are really concerned about autonomy and
dignity, not safety and longevity. This book should be required reading for
anyone involved with end-of-life care.
The author
made his case with individual stories, so I’ll tell you about my mother. When
she was diagnosed with bladder cancer, she decided she did not want an ostomy
bag and did not want to be institutionalized. She lived her life on her terms
and died in her own bed surrounded by her family. For years, we wondered why
she refused life-saving surgery. We wondered why an otherwise intelligent woman
would turn her back on modern science. After reading this book, I understand.
A few
salient quotes from Being Mortal:
“Your chances of avoiding the nursing
home are directly related to the number of children you have, and, according to
what little research has been done, having at least one daughter seems to be
crucial to the amount of help you will receive.”
“People with serious illness have
priorities besides simply prolonging their lives. Surveys find that their top
concerns include avoiding suffering, strengthening relationships with family
and friends, being mentally aware, not being a burden on others, and achieving
a sense that their life is complete.”
“…our most cruel failure in how we treat the sick and the aged is
the failure to recognize that they have priorities beyond merely being safe and
living longer.”
The author presents the disconnect between the caregiving family
and the end-of-life person. The family is struggling with the overwhelming task
of caring for their aging relative, the need to get help, and the guilt of being
inadequate to the task. Care homes market to these people emphasizing the level
of medical care and safety provided. An excellent home soothes the family.
Unfortunately, the exact features that the care home sells to the
family are the things that the person at the end of their life wants to avoid. A
dying person wants autonomy and dignity. That is why my mother avoided medical
care. In the end, she died, as she lived, in control of her destiny.
If you are
immortal, you can ignore this book, otherwise, read it now and again later, but
not too late.
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