Monday, January 02, 2006

Thinking ahead

Notwithstanding that today was officially a holiday at the hospital, I was working. I was in today to chair a Consultation of the Ethics Committee. You will understand that I cannot speak specifically to the Consultation, either in subject or content. Still, it was certainly thought provoking.

As is the case in many such discussions, an Advance Directive was central to the conversation. I have for some years participated in educating patients, families, and staff on Advance Directives. I can remember the time before Living Wills were generally accepted. I remember the passage of the Patient Self-determination Act. I have been part of many discussions on the topic, not least because I live in the state where the case of Nancy Cruzan was fought out. In all those discussions, I have come to some conclusions.

First, I think Advance Directives are valuable and important, whether a Health Care Directive or a Durable Power of Attorney for Health Care Decisions. Developed thoughtfully, used carefully, they can bring a good deal of peace to those who have them, and to those called upon to exercise them.

Second, I think the conversation leading to an Advance Directive is more important than the piece of paper. Truly understanding what a person really wants takes more knowledge, more relationship, than a document can record. I have helped patients complete documents they did not want to share with family; but I have always counseled sharing. For someone to carry out my wishes, in light of how much gray area there is in many medical crises, someone needs to spend time with me, to know me with some sophistication.

Third, I think those conversations need to happen over breakfast or dinner. It’s hard to think about those decisions in those controlled, relatively calm circumstances. It’s that much harder in the context of a new diagnosis or a medical mystery. The conversation needs time to reflect, to digest, to settle in. Trying to address it in a hurry, in grief or anxiety, doesn’t allow for that. It needs to happen when the family has the time and room to “fuss, cuss, and discuss.”

Finally, we need to advocate for this in season and out of season. I do my share of supply work. I often begin the announcements by speaking of my “second sermon:” a reflection on Advance Directives in light of the Prayer Book rubric requiring clergy to speak on occasion about the fact that we die, and that we need to make provision for our estate, caring for family, and, if we can, for the Church (a gold star for those who recall where in the Prayer Book that rubric is). Based on that I also call for Advance Directives in the same vein. We can remind those we serve outside the hospital that before we die we are quite likely to be sick, and we can also serve family by preparing for that eventuality.

An Advance Directive may or may not be worth the paper it’s printed on. We need to also encourage the support of family and communication with family and friends that will prevent the patient’s wishes to come as a surprise. We may serve families in the hospital in times of critical decision. We can serve those outside the hospital if we can help them make preparation, and help those times of crisis require fewer decisions.

One final thought: the Center for Practical Bioethics in Kansas City has a program called Caring Conversations. It is designed to help families think through and then talk about end-of-life concerns before putting pen to paper. You can get more information about Caring Conversations at http://www.practicalbioethics.org/cpb.aspx?pgID=886.

2 comments:

Dan Hoffman said...

Thank you, Marshall, for putting up your blog. I have bookmarked it and hope to return from time to time. Count me in as one of your readers!

I especially appreciated your comments on end of life directives. This is something I have given much thought to and have shared mine with my family and some friends. The problem is that it is hard to know how to make them want to talk about it. They respond "Oh, Dan (Dad), you don't look like you are leaving us anytime soon." Maybe it is because they are, like your children, early adults and just haven't thought a lot about death.

I felt that I also had to give thought to this because I am an out gay man in a committed relationship and I didn't want Frank, my partner, to be sidelined. Incidentally, I made him my health proxy as well.

I'll stop rambling on. Please write more. I'll be visiting your site from time to time.

Bill said...

Marshall,
I visit you again. On December 13, just over a year ago, I had an ICD (defibrillator-pacemaker) implanted. Because my surgeon told me there was a 1 in 1000 chance of death, I made out a durable power of attorney.

The surgery was done in a hospital almost 100 miles from where I live and my older daughter happens to work in that hospital as a NICU nurse. I made her the person who would make decisions for me and felt very comfortable doing that.

Some parents may not have good relationships with their children, but I think mine are what God had in mind. If anything, she would be slow to "pull the plug," but she is very aware about how I feel about things and would carry out my wishes with great love.

Thanks again,
Bill