Sunday, June 27, 2004

A Dose of Reality. As some of the kin know, I have been researching "end-of-life" issues in preparation for a seminar I will be leading at the Christian Life Conference at Montreat College. The conference begins on July 3 and goes for 3 days. My seminar is just one of a number of small group opportunities that the conference offers, along with big plenary sessions of Bible study, great preaching and worship. I have been reading statutes and cases dealing with "living wills", termination of life-prolonging procedures, physician assisted suicide, and the like. I have also been looking at websites and reading books and articles written by orthodox Christians and others.

On Thursday of this week, the Pulmonary Hypertension Association had its annual conference at the Inter-Continental Hotel in downtown Miami, very near my office. There were over 1000 people who attended the conference: physicians, nurses, representatives of drug companies, patients, and family members. One of the seminars offered at the conference was entitled "End of Life Issues", and Linda Carr, who organized and ran the conference, gave me a ticket to attend. I did so yesterday afternoon.

Linda Carr is the mother in the Carr family, and that family lives near us and attends our church. Linda helped start the Pulmonary Hypertension Association and is a past president of it; the oldest daughter, Hannah, a rising high school senior, suffers from Pulmonary Hypertension ("PH")("Suffers" does not do justice to the way that Hannah and the rest of Carr family deal with the disease. Frankly, if I were a disease, I would not want to fool around with the Carr family); the father, Austin, is a very good trial lawyer and leads a long-running Friday morning men's breakfast where we meet, read scripture and pray; Cody, their son, is a rising senior at Columbia in NY (he's only 19 years old), and Abby, their younger daughter, is such a good soccer player that she plays keeper on the boys' teams. They bless our church and are a remarkable family.

A physician and two RNs led the seminar. Mostly patients attended, although there were some family members and at least two social workers. I had been thinking of "end-of-life" issues as a Christian lawyer, of course, struggling with how the law's rules of decision-making intersect in this context with Christ's commandments to love God and love one another. What the people wanted to know at the seminar, however, was what its like to die. That was their primary "end-of-life" issue.

A lot of people die of "PH". Ten years ago, when physicians in Miami diagnosed Hannah with PH, they told Linda there was not much to be done and that Hannah would soon die. Instead, Linda, through the internet, prayer, and with maternal ferocity, found her way to a physician at Presbyterian Hospital in NY who was working with experimental drugs to deal with PH symptoms. That physician has been working with Hannah since then. Hannah, now a varsity basketball player who has achieved county-wide recognition, is doing well.

But a lot of people die with PH. Maybe most of them die of that disease. I'm not exactly sure about the statistics. But a lot die of it. I think most of the patients at the seminar expected to die of PH, and that's why they were there. There was plenty of time for questions and comments, and one of them said she was in the end stages of the disease (she had a portable oxygen machine that she pulls along behind her, as did several others) and wanted to know whether the physician would describe the stages until death through which she should expect to pass. The patients at the seminar wanted to know whether at their death they would suffocate, was it like drowning, or would they go suddenly?

One person who spoke was a father whose little boy had recently died, and he described the experience at the hospital where his son passed away, surrounded by his family, indicating that it was a gentle death in those circumstances. The doctor answered that sudden death is one of the ways people die and the other is "shortness of breath", the suffocating experience that the people there fear so much. He did not have a lot more to say than that, except to say that people with heart disease die that way too. One of the nurses did not want to use the word "suffocate" and rejected the "drowning" analogy, but said that the way people died was too individualized to give general guidance.

But the other nurse, who in some respects seemed the least articulate during the seminar up to that point, said something very simple and profound: "I am there with the patient as the patient dies, and if he wants something to deal with the discomfort, I will give it to him." God bless such nurses.

So now I am not sure what I am going to say about "End-of-Life Issues", other than to suggest to people that they find the hospital where the little boy died or track down that nurse and have her there when its time for them to go. But I appreciate God leading me to that seminar yesterday. There are, of course, many more things to say about end-of-life issues, but I am going to be thinking about those people at the PH Association seminar for a long time. May God bless them and their families too.

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