Making End-Of-Life Decisions

September 11, 2010 by  
Filed under Elders

In “Frank Talk About Care at Life’s End” (New York Times, 8/24/2010), Jane Brody discusses the recently enacted New York law signed by Governor David Patterson that requires doctors who treat patients with terminal illnesses to give them information about aggressive pain management and hospice care to consider in making their end-of-life medical care decisions.  There is a similar provision in the original Federal health care overhaul proposal.  (It was withdrawn after all the “death panel” objections.)

Many patients are now living longer with incurable diseases (such as cancer) so that it is difficult for people to accept the information from their doctors that no further options are available.  (It is also difficult for doctors to admit that they are at the end of their ability to help a patient.)  What results is a trend to pursue a cure, even though it often destroys the possibility of good quality last days, surrounded by loved ones, in complete physical comfort at end of life.

Studies show that less aggressive end-of-life care can actually result in living a few months longer and with less depression.  But in order to have that, one must give up hope for a cure.  I have never been in that situation and don’t know whether I would opt for aggressive treatment, or if I would choose palliative care. It is a very weighty decision.

When making end-of-life decisions, you (or your families) need to be informed of all of the medical and palliative options.  Younger terminally ill patients may opt for more aggressive treatment, especially those with young children.  But most terminally ill patients choose comfort care after receiving realistic information about their change of survival and how difficult and painful future treatment is likely to be.

It is good to have end-of-life conversations with your family and significant other well before the need for palliative (or medical) care.  However, it doesn’t always help when the time comes.

I had many of these discussions with my former mother-in-law, Marian (who remained my friend after the divorce).  She brought up all of these discussions.  She did not want to live a life that she could not reasonably enjoy.  The problem with her dementia, which crept up slowly on her, was that by the time it was advanced, she was in no position to make arrangements to end her life.  We can’t help her now.  (It would be murder for anyone to purposely end her life.)  Assisted suicide is a crime in all U.S. states except Oregon, Washington State, and Montana.  (It is legal in some countries around the world.)

Marion is now almost 98 years old and has been essentially a vegetable for 5 years.  It is not what she wanted.  She told me many times.

You could look at it as a waste of resources – money spent on caretaking a 98-year-old woman who will never get better, unless there is a medical advance tantamount to a miracle.  This money could be used for dementia research, or for starving people in the world, or to help fix environmental problems.  Another (more positive) way to look at it is that Marian’s caretaking is providing a livelihood for her caretakers.

What if my mother-in-law had been given a choice of ending her life 5 years ago?  Could she have made that decision and put it into effect?  Under current laws, if she had decided to end her own life, she (then 93 years old) would have had to figure out how to do it, accumulated the necessary pills, and take them, without family assistance.  It’s a  set of actions and requires determination that very few people can accomplish.

Advanced cancer is different than dementia.  With advanced cancer, when there is no treatment, you will die without having to accumulate pills to do it yourself.  So people with terminal illnesses such as cancer do have the option to opt for palliative care.  In a way, that is a fortunate silver lining to having a disease such as cancer.

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