My book club engaged in a stimulating discussion about life and death last night. The book I selected for the group to read was Knocking on Heaven’s Door by Katy Butler, a memoir about Butler’s father Jeff’s long struggle to survive a series of strokes and heart disease. Butler’s mother Valerie is Jeff’s caregiver and often the bane of Butler’s existence. The story encompasses family dynamics, medical ethics, Medicare, health care spending on the elderly and America’s inability to deal with death.

At the end of our long and winding discussion last night, we all weighed in on what our individual takeaway was from the book. Mine was how important it is in the stress and tension of the moment of a medical crisis to take a moment to breath. As Francesco Fiorista, a Slow Medicine practitioner says, “To do more is not necessarily to do better.” Medical advocates should  ask about the pros and cons of a course of treatment before they agree to it. Advocates should ask about alternatives to suggested treatments and tests. Before agreeing to a test, ask: will the results change future treatments and is this treatment absolutely necessary? And the most important question of all to ask, “What about doing nothing?” An avalanche of medical complications and crisis could be averted by simply doing nothing.

Another important piece of this debate is the absolute necessity of talking to your family about your individual preferences when faced with life threatening illness. Death is part of life and inevitable so let’s talk about it, openly and honestly before you’re in the emergency room.

Family dynamics are so often a part of this end of life drama. Issues of estrangement, abuse, hard feelings inevitably surface and often create a minefield of emotion. This is certainly true in Butler’s case. Distant relatives often second guess the hands-on care giver but offer little emotional support. After her parent’s death, Butler reflects upon her frustration with her brother’s lack of involvement in their parents care but realizes she never clearly communicated with him about what she needed in the way of support and help.

Butler writes, “The work of death does not start on the day that someone says to you. ‘Your mother is dying.’ No one may ever say this. There may always be another treatment.”To this end, it is important to have conversations about the person’s wishes as early as possible. Ask what makes life living for you? Then listen closely to the answer.

Here’s a link to get you started on this conversation…

http://theconversationproject.org/