“Fear of living with a disability” pushes rejection of treatment in advance care planning

Editor’s note. The following comes from NRLC’s Robert Powell Center for Medical Ethics.

Disabled-manThere is currently a major nation-wide push, both in the private and public spheres, to promote “Advance Care Planning.” There is strong reason for concern that, motivated by cost concerns, promotion of advance directives and advance care planning frequently deviates from a neutral effort to elicit and implement patients’ genuine wishes in the direction of influencing them, subtly, or not too subtly, to reject life-preserving treatment.

One recent example can be found in New York State “Conversation Ready” Project materials uses the heavy-handed description

“Are there circumstances that you would consider worse than death? (Long-term need of a breathing machine or feeding tube, not being able to recognize your loved ones)”

The shocking thing is that materials leave out basic information, including the fact that many studies show that it is difficult for doctors to predict whether these interventions will be either short-term or permanent. What about those who would want these interventions for a short-term? There is no separate question posed in that manner.

What about the thousands of people living full and long with the use of assisted feeding, breathing machines, and so forth? Where are their stories?

A recent letter from the disability rights groups Not Dead Yet and the Center for Disability Rights opposing the “Conversation Ready” Project protested its negative framing of life with disabilities:

Understandably, individuals do not want to lose their abilities due to an accident, illness, or age. Yet disability is a natural part of the human experience and it is unacceptable that a government program will encourage people to choose death over disability… Though this site also refers to individuals coping with advanced and untreatable diseases, The Conversation Project makes it clear that the fear of living with a disability is what drives the seemingly innocuous decision-making process designed to steer people away from receiving care.

More info on how advance care planning materials already in widespread use are suffused with vivid, emotional, and distorted presentations designed to persuade individuals to forego life-preserving medical treatment can be found here.

This problem will not be limited to New York State. This summer, the Obama Administration has proposed a regulation using its executive power to pay doctors to conduct advance care planning conversations with seniors, to take effect January 1, 2016.But Rep. Steve King (R-IA) has introduced a bill, H.R. 3251, to prevent the Administration from implementing that funding.

You may ask Your Representative to Co-Sponsor H.R. 3251 against Biased “Advance Care Planning” Under Medicare by clicking here.