Column 3

It’s About How You Live

Lynn Bonde

April has a new commemorative day – National Healthcare Decision Day.  The group behind it writes, “The National Healthcare Decisions Day (NHDD) initiative is a collaborative effort of national, state and community organizations committed to ensuring that all adults with decision-making capacity in the United States have the information and opportunity to communicate and document their healthcare decisions.” 

At Calvert Hospice, we are part of this group and we encourage everyone to complete advance directives, which are living wills and appointments of health care agents.  You can get forms for these documents from us and many other agencies in the County.  In our experience, though, this is not a subject that most people want to talk about, let alone commemorate.  But celebrating National Healthcare Decision Day by executing your advance directives can be a greater gift to your family than anything you may have given a loved one at Christmas or on Mother’s Day last year.

Most people think of advance directives, if they think of them at all, as something only old people need, or those who are ill or facing surgery.  If you’re going into the hospital, it is quite likely that you will be asked about your advance directives.  But the effort in this country to have folks think about what kind of medical care they want if they are not able to make or communicate those decisions themselves, and to have them reduce those thoughts to writing, did not start because of anyone old or sick.

The first public case about the need for advance directives was in 1975.  Karen Ann Quinlan’s name was in all the papers.  When she was 21, Karen Ann went to a party, came home and collapsed.  No one knew exactly what happened.  She lapsed into a persistent vegetative state, and was placed on a ventilator to keep her breathing.  After several months, her parents, who were devout Catholics, asked the hospital where Karen Ann was being treated to remove the ventilator. The hospital refused and a nationally-reported legal battle ensued.  The New Jersey Supreme Court sided with the parents and Karen Ann was removed from the ventilator. Karen Ann continued to breathe on her own and lived in a persistent vegetative state for another 10 years.  She died of pneumonia in 1985.

The second case involved a 25 year old woman called Nancy Cruzan.  In 1983, Nancy was driving her old car, which didn’t have seat belts, lost control and was thrown into a ditch.  Although the paramedics resuscitated her, she never recovered consciousness and was diagnosed as being in a persistent vegetative state.  Nancy was able to breathe on her own, but doctors surgically inserted a feeding tube because she could not eat.  After four years, her husband and parents asked the hospital to remove the feeding tube.  The hospital refused without the family first obtaining a court order.  Once again, the case made national headlines, moving, after three years, all the way to the U.S. Supreme Court. The Court decided that without some kind of proof of what Nancy had wanted, the family would not be allowed to discontinue her feeding tube.  Ultimately, some of her friends came forward and testified that Nancy had told them that she would have wanted the tube removed. The court then allowed the tube to be removed.

As a result of the Cruzan case, in 1990 the U.S. Congress passed the federal Patient Self-Determination Act, which gives people the right to state their wishes for health care and have those wishes followed if they become incapacitated.  The Maryland General Assembly passed a similar law in 1993.

But, of course, most people don’t have advance directives.  And the most recent controversy about what someone incapacitated would have wanted for their medical care, in the absence of a written advance directive, generated the most publicity of all.  That case involved 26-year old Terri Schiavo, who collapsed in her home and, after she was resuscitated, was diagnosed as being in a persistent vegetative state and placed on a feeding tube.  The question of what Terri would have wanted was disputed from 1998 to 2005 and involved not only her parents and husband, but the courts, all the way to the U.S. Supreme Court, the Florida state legislature and the U.S. Congress.

None of these women was very old.  None was sick or facing surgery or some other medical procedure.  None had advance directives that could have made clear what she wanted from her medical care providers. These are hard choices and deserve thought and consideration whether you are in your 20s or 70s.  And your choices may change, so if you have completed your advance directives, you need to pull them out every few years to see if they still reflect what you want.  Of course, if you would like copies of advance directive forms or to talk to someone about your choices, please call us at Calvert Hospice.  We would be glad to help.