Thursday, October 6, 2011

Honor the Advance Directive - or Not?

I gave a lunch time talk at a retirement home today to a group of about 60 pretty bright folks including judges, chaplains, professors, etc. The subject was "Your Life Your Choices", a program oriented toward educating families about the value of advance planning and how to make their values and wishes known. The discussion was dynamic and lively.

One consistent point about advance directives is to preserve the patient's autonomy for decision making by having a person "close to their heart" act in their behalf when the patient is no longer competent.

After the session and discussion, a lady quietly approached me and asked if she could have a moment of my time. She said, "My husband has worsening Alzheimer's and can no longer care for himself reliably. He's been transferred to the Memory Care Unit. The doctors say he is no longer competent to make any health care or financial decisions so the burden is entirely on me, but I have a problem. My husband said a few years ago and signed the papers that he would want full life support including fluid and nutrition to sustain him. But I don't know if that's the right thing to do now."

My first thought was to advise her to meet with her doctor and a palliative care or hospice provider to look at all the options with their benefits and burdens. Also I advised meeting with a social worker and/or a spiritual counselor to explore the difficult decisions and to meet as an entire family unit. Then I asked her, "Do you think if your husband's heart stops that CPR would benefit him?"

"No," she replied. "But I'm not sure what his wishes in his present situation would really be. He never talked about quality of life issues much."

I tried to reassure her that there were no clear guidelines in this situation. To try to take the burden off a bit, I told her that doctors in general didn't feel obligated to provide treatments to patients that are not beneficial. She gave me a sad smile saying, "thanks, but I still don't know what to do."

Comment: It can at times be very difficult for a surrogate to truly know the wishes of the patient who is ill and can't further discuss their status. That's why I encourage patients to write an addendum to the Living Will giving their overview of "quality of life." What are the biggest hopes and biggest fears about the end of life? What would be acceptable or when to "pull the plug"? The more we can let our surrogate know our true feelings, the better the decision will be, but it's hardly ever easy in the gray zone such as with this patient.

An example of fear is the story of Chopin's heart. His great fear was being buried alive so he had his physician promise to remove his heart at death, thus ensuring he was dead! Chopin is buried in France but the heart is enshrined in a church in Poland, a significant tourist draw. Chopin's wishes were honored. May we all have surrogates that know our own hearts.


  1. From stories like these it's easy to see the problems that can arise when people have not discussed their end-of-life wishes enough. But how do you spread the message and make sure more people think about these issues and make their wishes known? Should family doctors bring the issue up with all their patients? Is this a public health issue that should be dealt with at the national level? As a medical student, I haven't learned about any of this. Should I be worried?

  2. Rosa, these are excellent questions. This is a public health issue and lots more remains to be done. Please see my prior posts "Can We Talk About Death" and "Your Life Your Choices". Medical Schools should, I hope, be actively educating students about advance directives. Some communities and health care systems are identifying the patients most at risk by disease profile or age and directing programs toward them. Yes, physicians should be discussing end-of-life planning in an office visit beginning at age 65 or with the ill patients. I wouldn't worry too much but you might want to read more about the ethics debates in this area and see how you can become actively involved at your school. Best wishes for a productive career!

  3. Thank you Dr. deMaine. Your blog is very instructive and inspiring. I'm interested now in finding out what's being done here in Quebec around these issues. Unfortunately, there is a shortage of family doctors here that I imagine is an obstacle to end-of-life planning, among other health issues.

  4. I briefly searched the web re "Quebec and end of life". Several links showed up. Here's one from the Ministry of Health:

    I would imagine that Quebec would have unique cultural issues surrounding end of life care. Washington State has an End Of Life Consensus Committee (EOLCC) sponsored by the State Medical Society. It brings doctors, nurses, pharmacists, chaplains, palliative care, hospice, non-profits, and others together to work on a wide variety of issues as well to lobby for needed State wide improvements in the law and funding.