End-of-life decisions

How does one have a good life? A good question. But not the question that I thought I would be considering when I met recently with a group of doctors and nurses to discuss end-of-life decisions.

These medical professionals specialized in palliative care, medical care that relieves pain, symptoms and stress caused by serious illness. These doctors and nurses, who had collectively seen thousands of patients faced with terminal illnesses, were meeting with me and the News & Review Custom Publications editor to discuss end-of-life decisions.

Over the last several years, we have established a separate publications division at the News & Review that creates mini-newspapers for clients. While we have produced around 200 of these sponsored publications, this was the first time that we worked with a health organization wanting to help the community understand end-of-life decisions.

So we started asking questions. What procedures are most often done? What are the common myths about the end of life? Where are the breakdowns in communication?

These intelligent, knowledgeable caregivers had a lot to say. They spoke about the extreme difficulties of effective communication about death. That it’s so much easier to give false hope. That the system is set up to do things when really there is not much that can be done or should be done. About the joyful times when they could help someone live out their final months without pain, and able to see that new baby or go to that wedding. That medical studies have shown that patients in palliative care tend to live longer than patients who are receiving more aggressive treatments.

In our several-hour discussion, the caregivers repeatedly said how important advance directives were. Doctors, who of course have a good understanding of medical odds and the impact of aggressive treatment, generally avoid extreme end-of-life measures for themselves. I asked each of the doctors and nurses: On what percentage of your patients do you perform end-of-life procedures that you would not want done on yourself? The common answer was 75 percent.

Three out of four patients. And the doctors clearly care for their patients. They would like to reorient their profession. But like a soldier who is still courageously fighting a futile war, the caring doctors and nurses can only practice medicine within our current system. So they do.

They, like other medical professionals I have spoken with, are clearly upset about Sarah Palin’s ridiculous death-panels argument. Doctors being compensated for consulting with patients about likely outcomes became a politically toxic issue. So we now have an inhumane system that pays doctors for doing things that should not in their opinion be done, but will not reimburse them for time spent helping patients to have a better understanding of their condition.

I am hoping to have a good life that includes a good death. I left my discussion with the good doctors and nurses believing that they could help me. It would help if our politicians also learned the concept of “First, do no harm.”