The Benefits of Advanced Directives

A friend whose mother has been ill for years writes:

I'm a little close to the issue of Palliative care and the New York Times article has particular resonance for me right now.  As you know she's been diagnosed with MS since 1983.  For the past 2 1/2 years she's been getting significantly worse to the point where she can not bathe, dress, go to the bathroom or, in many cases, feed herself on her own.  My father has been her primary caretaker and this has been adversely affecting his health as well.  Aside from her MS and the various side effects that come with it she is in excellent health.  She has no cancer risk, she has low blood pressure and her heart is in excellent condition.

 

For years she has had a living will which stated that she should not be put on a ventilator or feeding tube and that no extreme measures should be put in place to prolong her life.  My father has a similar document in place.  This was done when my mother was still walking, dressing, feeding and doing most day to day activities herself.  These are not documents they discussed with doctors regarding their conditions, short of making sure their physicians where aware of their wishes, these were documents put in place years ago with the help of attorneys to give them the quality of life they wanted as the end of their life neared. 

 

This year my mother started getting UTI infections which were immune to standard antibiotics.  She was in the hospital in April with a UTI infection for which she needed IV antibiotics, then again at the end of June. When she was released she told my father and I that she didn't want us calling 911 for her anymore.  She had a discussion with several of her doctors regarding what would happen if we didn't call 911 for the next UTI.  We met with an Elderlaw attorney who informed my mother that if she wanted people not to call 911 she should indicate that in a legal document.  My mother called the attorney herself the next day to make the arrangements.  My father and I were not involved in any of that, short taking my mother to the notary to "sign" the document.

 

My mother is very well informed about her condition.  She understands what the ramifications of her illness are and she understood that if she did not go into the hospital with the next UTI that there was a great likelihood she would die.  I am currently 7 1/2 months pregnant with twins and she discussed with me last month whether it would be okay if she didn't make it to see the birth of the kids.  I told her it was.

 

All of my mother's doctors were against this final no-911 directive.  But they were able to give her facts and information objectively while still expressing their extreme dislike of her decisions.

 

This weekend she fell ill with a UTI and became unconscious on Sunday.  We contacted her doctors who could have given us the drugs and ordered nursing care to clear up the infection (possibly) but they refused, saying she should be in the hospital (I am sure this is because if the antibiotics didn't work they didn't want to be held responsible for it from a malpractice standpoint...which is another issue entirely).  Based on the advanced directives she had made, including the most recent one, we could not put her in the hospital.  The doctors viewed the do not call 911 document as a refusal of treatment and have ordered palliative care for her through Hospice.  She has just been put on IV fluids and been catheterized.  She is not yet on painkillers as she does not seem to be in pain, but morphine is available should she need it.

 

And as I go over to my parents home every evening to watch my mother die a little bit more every night I am so extraordinarily grateful.  I am grateful I knew what she wanted, I am grateful that she is going to die with as much grace as she can, I am grateful that she was informed about her medical and legal options and was able to make directives both previously and as they were called for in this situation.

 

But to equate informed decisions and accurate information with something like "death panels" as some of your commenter's have done is sad and scary.  This is something everyone should think about and this is an issue where everyone should be informed, well before they actually have something wrong with them.  This is a situation where everyone can make their own, most rational decision.  Will this be abused by some?  Probably.  Will there be people who manipulate the facts to get patients to achieve the results they want them to.  Probably.  But better to be informed and to be able to make the decision than not.  I have a living will because I want no extreme measures taken.  My husband does not because, to paraphrase, he wants every machine ever invented to keep him alive as long as possible regardless of the cost.

 

The world is not perfect, but informed decisions made by doctors, lawyers and their patients are, in my opinion as I watch my mother die slowly, better than the alternative.  And knowing that my mother made her decision and is allowed to die with as much dignity as possible and free of as much pain as possible gives me a little hope.

If there is anyone I would trust to know her own mind on this subject, and make an informed decision, it was her mother.  I'm glad she got to.

I don't mean to sound as if I'm against palliative care, or living wills or advanced directives.  They're very good things, and everyone should make one long before they think they will need it.  These things are in no way "death panels".  I think, perhaps oddly for a libertarian, that patients should get to make choices about what they want for end of life care, unless it actually bankrupts us.  But that implies actually making a choice, and thinking deeply about these issues, even though we'd rather not confront them directly.  Frankly, I've been looking at living wills, and I get a panic attack just thinking about the conditions under which they might be needed.  This makes it hard to make a clear decision about what I want.