People change their minds - a disadvantage of advance directives

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Rochester Area Right To Life

Health care preferences can change

 Most people can remember being a teenager and looking at the older people around us, the ones with wrinkles, and thinking something like, �I�m never gonna get like that!  I�d rather be dead than be so old.�

Not surprisingly, most of us have come to the conclusions that since wrinkles are not painful they are something to ignore.

Advance health care directives have as a disadvantage that they do not change when our opinions do.  An advance directive to restrict treatment if we are �terminally ill� can result in the withdrawal of food and water under circumstances when that is most decidedly not our wish.

The terminology used at the moment is �futile care.�  Futile care is treatment which the medical establishment thinks is futile because it would not restore us to a quality of life that the medical establishment considers sufficient.  Such treatment would indeed help us, but many of the doctors do not want us helped if we cannot be cured to their satisfaction.

Sondra Diamond was a junior in college when she received massive burns.  These burns would have been unhesitatingly treated under normal circumstances, but Sondra had cerebral palsy.  The doctors did not want to treat her because they considered her incapable of a �normal life.�  They considered it �futile care,� although that terminology was not in use at the time.  Her parents advocated vigorously, finally bringing in pictures of her swimming and playing the piano and Sondra got her treatment.

Years later as a counseling psychologist, she wrote to the Newsweek editor a �letter from a vegetable� as she took issue with two doctors who thought people like her should not be allowed to live.  In part it said,

For a doctor who only sees value in perfect babies, Sondra�s interest in staying alive is incomprehensible. 

For a doctor who only wants to cure patients, a patient�s desire to stay alive even with handicaps is incomprehensible.  For such a doctor, the definition of certain care as �futile� because it will only help, not cure, is reassuring.

Many patients have one set of standards, set when they were healthy, like some of those doctors.  The 16-year-old who has no toleration for wrinkles can become the 40-year-old who wants no treatment if he cannot �live independently.�  However, according to a recent article, there is now published evidence that many of these wishes change over time as our health status changes.

The study did interviews of 226 older patients with significant health problems, repeating the interviews at least every 4 months.  They said, �Patients were asked to rate whether treatment for their illness would be acceptable if it resulted in 1 of 4 health states�

The results showed changes in attitude. 

 

As the authors said, �These changes pose a challenge to advance care planning, which asks patients to predict their future treatment preferences.�

The 40-year-old who cannot imagine living independently changes his mind when he is 75 and has discovered he can live without a driver�s license.  And discovers again that life is still good when he can�t get out of his wheelchair, but can still welcome his grandchild climbing up on his knee.

 

RARTL   July, 2006 

Original Investigation: Prospective Study of Health Status Preferences and Changes in Preferences Over Time in Older Adults, Fried, T. R., Byers, A. L., 
Gallo, W. T., Van Ness, P. H., Towle, V. R., O'Leary, J. R., Dubin, J. A., 2006-04-24 http://archinte.ama-assn.org/cgi/content/short/166/8/890?rss=1  

�Letter from a vegetable� from  http://www.nevadalife.org/abotion_to_euthanasia.htm


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