Patients, Families and Caregivers
Advanced Care Planning
Complementary and Alternative Medicine (CAM)
CME - Continuing Medical Education
When I ask patients about their greatest hopes or fears at the end of life I often get a comment like this, “Well, my biggest fear is that no one will understand what I want and that I’ll end up being a burden to my family. I’m just afraid that the people caring for me might put me through hopeless painful attempts to keep me alive and that I won’t have any say.”
As we go through the discussion, often people haven’t even begun to have the discussions with their families and loved ones about death. It often takes a scare or serious illness to raise the topic, but then we might not be mentally competent. Even people who’ve had the discussions might not have completed a Durable Power of Attorney for Health Care or a Living Will. Or if they have done these, they are at times filed away in a hard to access spot and may not have been reviewed for years.
The medical system defaults to treatment when it comes to saving lives. When 911 is called or you present to an emergency room, if there are no instructions to the contrary and it’s very urgent, the medics will understandably and appropriately initiate treatment. But this is similar to having surgery without understanding the risks or benefits. When we have a cancer diagnosis, are very elderly, or have a combination of serious chronic conditions, we may want to ask for limitations in “heroic care”. Hence a program like Respecting Choices in La Crosse Wisconsin which is actively reaching out and helping people complete advance directives.
So if we can have a good discussion with our doctor, nurse, social worker, or chaplain about end of life issues and what options we need to consider, then we have the benefit of “informed consent.” The advance directive is similar in principle to informed consent we sign before any medical procedure. We understand the risks and benefits and decide what we want.
The Gunderson Clinic in La Crosse Wisconsin has shown us a powerful way to bring end of life discussions to a community in such an effective way that 96% of all deaths there have advance directives completed. The main reason for the directives is to respect a patient’s wishes. The ethical principles involved are to respect a person’s autonomy and to do no harm. There have been significant expenses incurred by the hospital to keep this program operating. Even so, they funded the program because it was the right thing to do.
A secondary benefit was in medical costs. “At Gundersen Lutheran, the cost of care for someone in the last two years of life is about $18,000. The national average is close to $26,000. At one hospital in New York City, it’s more than $75,000.”
This is not rationing. There aren’t (and never were) proposals for “death panels”. But there is a proposal —”it’s in the health bill passed by the House of Representatives — that would pay for the kind of periodic and continued end-of-life discussions with patients that are routine in La Crosse. Gundersen Lutheran is pushing for it.”
It’s encouraging that the medical professions, the public, and now the politicians are seriously engaging in this area. La Crosse is a powerful model leading the way.