Human Challenges and Autonomy

There was a commonality in two seemingly disparate articles in this week’s Journal of the American Medical Association (JAMA).   One article was about falls as “never events” in the elderly and one was a moving personal reflection by a physician about her mother’s illness.  For me, both spoke to the human need for autonomy and the also human need to be challenged to do better at any age.

Dr. Maria Maldonado, in her article entitled, “Warning Shot”, gives a first person account of her mother being told that her brain cancer has returned.  She talks about her mother having reached a stage of acceptance of her disease and prognosis that she, as the daughter, had not. Dr. Maldonado relates all this in the context of going, the next day, to teach medical interns about “breaking bad news” to patients and their families.  She finds herself thinking about how well her mother’s oncologist had done it.  “Bravo Doctor.  You knocked it out of the ballpark.  You took care of my mother.  You took care of me.”  She closes the article with her mother worried more about her daughter and her daughter’s sadness rather than her own impeding decline and ultimate death. 

“My mother asks me, “How do you feel?”  Shoring us up.  Worrying over us.  Loving us.  “Sad,” I say.  She looks out the car window.  I can tell she’s sad too in part because of that timeless way that mothers feel pain over their children’s unhappiness. “

Dr. Maldonado captures a woman who is in charge of herself and is focused on her children rather than on herself.  Her mother exudes independence and autonomy in her concerns.  She, the dying mother, is the one caring for her physician daughter.  Dr. Maldonado’s mother does not need her daughter to make her decisions or to treat her as a child.  Her mother is still the mother caring for her child. 

That image stayed with me as I turned to the article entitled, “Measure, Promote, and Reward Mobility to Prevent Falls in Older Patients” by Drs. Samir Sinha and Allan Detsky.  In the article they point out that in our zeal to try and prevent falls in the elderly when they are inpatients, we may actually be making their health worse!  The current National Quality Forum lists of “never events” which are defined as events which should never happen include patient falls.  However protocols that are focused on preventing falls can tend to keep people in bed far too much leading to poor recovery from surgery, muscle atrophy, decubitus ulcers, and pulmonary embolus.  The federal government through CMS is implementing policies that will deny hospitals payment for such “never events” thus potentially encouraging decreased patient mobility even more.    

The authors of this article openly fear that this emphasis on fall prevention with non-payment of hospitals for falls will lead to what they call an “epidemic of immobility” as an unintended and harmful consequence.  There is no question that if you stress mobility and advance programs of early and active mobility, you increase the risk of falls.  There is also no question that health professionals will tell you that often people who are sick and compromised just want to stay in bed and have to be pushed and motivated to move.  But people need a little friendly push every now and then, even if they are elderly and infirm.  People need to be given a responsibility for their own well-being.  That also improves their psychological state and their belief in their own abilities.  As is true for just about everything in medicine, the risks and the benefits always must be balanced but focusing only on fall prevention, ignores the great risk of immobility and dependency. 

Potentially, hospitals can avoid falls by limiting mobility through physical or pharmaceutical restraint.   That is antithetical to independence and autonomy.  Thus the risk of avoiding a fall should be considered as well as the risk of falling.  That should include the risks of harm from those restraints and those medications.  The risk of avoiding the fall should include the risk of robbing someone of their autonomy and their potential for independence even if that independence will never be complete. 

Autonomy and independence often require pushing oneself and pushing those you care about and care for.  For people at risk of falling, that means doing all you can to get them mobile in as safe a fashion as possible.  For Dr. Maldonado’s mother, it meant pushing her daughter, the physician and the expert is communicating “bad” news to patients to accept the brain cancer diagnosis. 

At an early part of my career, I sat on a committee that was involved in preparing a report to Congress as part of the development of the Americans with Disabilities Act that was passed in 1990 (obviously I did this as a mere child).  Our charge was to try and comment on aspects of the draft legislation that had to do with insurability and benefits coverage.  On that committee were also representatives of patient advocacy groups including one gentleman who was a double amputee.  He spoke forcefully about his independence and the fact that he was healthy, he just had no legs.  It angered him that he had to get his wheelchair through a doctor and through his health coverage as that labeled him as sick.  His argument was the wheelchair should come through the Department of Transportation because that is what it was to him: transportation.  He wanted to be seen as an individual and not as a double amputee who needed help.  

We all have something to give at every stage of our lives but in order to give we have to be independent.  We have to have our own dignity.  Health care and health care decision making has to foster that independence and that personal responsibility so that a mother can remain a mother even when her daughter is a trained adult physician and so a person can try to walk even if they are in danger of falling.