Today, I read of a study where 189 patients were followed over a two year period, and where the researchers found that nearly half of the patients were inconsistent with their wishes about treatment.
“Why do patients often deviate from their advance directives? They do so because they cannot accurately imagine what they will want and how much they can endure in a condition they have not experienced.” Dr Jerome Groopman and Dr Pamela Hartzband address this question in their blog posting .
For years I have said that there is simply no way that we can consider all the possible things that could go wrong, nor understand how we ourselves would respond to such diverse situation/conditions.
Other thoughts to explain this include the idea that although we realize how much might change in life with a severe illness, we may ignore how much will stay the same, and how many things can still be enjoyed.
People may not realize their many abilities to cope will help them respond and survive even amid much suffering. Rationalization, denial, humour, intellectualization and compartmentalization are all coping behaviours that help people cope with difficulty and find joy even in illness.
Over the years I have heard loved ones talk of “wanting to die” and being “ready for death”, but when they develop a serious infection (perhaps a pneumonia) they choose to receive antibiotics rather than die.
I have not been in this position of chosing life or death for myself. However I do know that questions about life and death, questions that we normally consider addressed by Advance Directives are far more often about “mundane decisions in muddy waters”, and focus on questions about antibiotics than they are about tubes and artificial respirators.
What have you seen in your practice, in your life? And why do you think preferences change?