Will Your End-of-Life Decisions be Respected?

Congress passed the Patient Self-Determination Act in 1990 which made it clear that an individual’s express wishes regarding medical decisions were to be respected by health care providers. This included the right to record these decisions in writing (called a “living will” or “advance healthcare directive”) and appoint others to convey these decisions by granting them what’s referred to as a “healthcare power-of-attorney.”

Since that time, the number of elderly Americans who have recorded their specific wishes regarding healthcare has risen from 47% in 1990 to over 72% in 2010 and the number continues to grow.

But there continue to be a large number of instances where these healthcare wishes are not followed, primarily because agents and care givers are not aware of the patient’s prior written wishes.

A Baltimore, Maryland example illustrates the problem. An elderly patient with acute dementia had executed a healthcare directive four years prior to the onset of the condition which specifically directed that only “comfort” care be provided and that no “heroic measures” be administered to prolong his life. While in the nursing home, he developed an uncontrollable nosebleed. Extensive treatment was administered to stop the bleeding, including three surgeries, installation of a ventilator tube and machine to assist in breathing and various other procedures. During the final surgery, the patient’s Advance Healthcare Directive was discovered in his medical chart and it became evident that each of the well-meaning nurses and physicians had violated his express wishes. His son, who had authorized the care, was adamant about wanting to follow his father’s wishes but was completely unaware of the Advance Healthcare Directive his father had previously executed.

Once the Directive was discovered, the patient was returned to the nursing home and was able to breath on his own. But it was a poignant lesson to all involved that making efforts to discern the patient’s wishes may be just as important as providing care.

If you have specific wishes for these types of health related decisions, make sure they’re written in your personal Advance Healthcare Directive. But that’s only one of the two critical steps on this front. The second step is to make sure that family and especially doctors and nurses are aware that you have written your wishes. Like the un-mailed letter, the people who you’re relying on to see that your healthcare decisions are carried out won’t know them and be able to follow them unless they’re aware of your directions and receive a copy. It may make the difference between the outcome you desire and something very different.