We recently discusseda study that described the common practice of obtaining screening mammograms in women with dementia. We considered how mammograms are very unlikely to benefit these patients, but have a substantial possibility of doing harm.
Paula Span, on her New Old Age Blog at the NY Times has a wonderful post on this article. She imagines what it would be like to be a frail older woman with cognitive impairment, being undressed for a mammogram, for reasons she does not understand.
But what is most instructive about this post are the poignant comments from adult children of persons with dementia. A number express the sentiment that they had to protect their loved ones from a health care system that seemed to insist on performing all tests and ignoring goals of care such as the desire to focus the care of their parent on comfort and quality of life. Several reported having to fight to not have screening mammograms done.
I am sure the health providers who tried to order these procedures, or convince family members of their necessity, had good motivations, and wanted to do the right thing for their patients. But what is remarkable from the family comments is the anger this has left in them, still present years later. It seems that one of the most awful outcomes we can have as health professionals is leaving our patients’ families with a belief that they have to protect their loved ones from us.
It is instructive that sometimes doing a procedure for a person does not leave family members a sense that “everything” is being done for their loved one. Rather it leaves a sense of bitterness that no one is really listening to them or their wish to protect their loved one from unnecessary pain and suffering. Perhaps we need to spend more time listening to these perspectives.