National Healthcare Decisions Day is April 16th. I hadn’t really expected the Centers for Disease Control to be one of the leading resources for my intro on this topic, but they had quite a bit to say:
April 16th is recognized each year as National Healthcare Decisions Day to inspire, educate, and empower the public and providers about the importance of advance care planning.
This was followed by some positive bullet points about why you should “Create Your Advance Care Plan,” e.g. “Gives you and your loved ones peace of mind.” Then the CDC says:
A Lack of Planning Has Economic Consequences
Unnecessary medical expenses for treatment, hospital stays, and nursing homes.
So advance care planning avoids “unnecessary medical expenses.” Presumably, that would be because your advance care plan would tell medical providers not to provide some treatments.
All too often, people with disabilities and our surrogates are encouraged to decide against medical treatment. In some cases, we’re being singled out, but the evidence suggests that most people are pushed in this direction. The typical advance care planning presentation draws upon commonly accepted fears and prejudices about disability to steer people toward declining life-sustaining treatment. The CDC uses a video to set the stage, beginning with the word “Imagine.”
You’re in a hospital and you can’t speak
And soon you won’t be able to swallow or breathe.
The video goes on to paint a grim picture of illness and disability, then urges advance care planning. I’ve summarized disability concerns about the bias in advance care planning as a problem of imbalance. In May 2012, I gave a plenary presentation on the subject to an international advance care planning conference held in Chicago, summarizing at one point as follows:
I call the Disability Perspective a Quest for Balance because advance care planning has developed under the false premise that the primary or only problem is overtreatment of dying people. A balanced approach would also address the problem of undertreatment of people who may or may not be terminally ill. I want to emphasize that while the disability community may be most sensitive to this problem, it affects everyone who may find themselves on the patient end of the health care system.
The risk is that the bias and imbalance may produce an advance care plan that results in a denial of life-sustaining treatment that the person would have wanted if they had better information, resulting in their unnecessary and unintended death. That risk is magnified by recent campaigns to enact legislation and programs to get people to have a Physicians Order on Life-Sustaining Treatment (POLST) or Medical Order on Life-Sustaining Treatment (MOLST). While the typical advance directive requires some time and thought to apply it to a given situation, POLST/MOLST orders are immediately effective medical directives. We’ve elaborated on our POLST concerns in public comments submitted to the Institute of Medicine’s Committee on Approaching Death.
Fortunately, there is now a role model for disability activism on POLST. Second Thoughts Connecticut successfully resisted a 2013 POLST bill in their state, which got them to the table to negotiate a 2014 POLST bill with meaningful consumer protections. The disability advocates, led by Stephen Mendelsohn and Cathy Ludlum, used materials developed by an attorney who’s been analyzing and blogging about POLST, Jason Manne. Here is Manne’s summary description of model POLST legislation:
The following suggested POLST statute is intended to allow individuals to use the form to effectuate their end of life treatment preferences while including protections against abuse and the possibility of death under unintended circumstances. It contains protections not found in most POLST laws. The protections for patients are the following:
- Limiting use of the POLST to individuals who have qualifying medical conditions
- Setting standards for the POLST “conversation” to ensure that people using the form have stable treatment preferences and are not steered to reject treatment.
- Requiring a patient or surrogate signature on the POLST for it to be effective.
- Requiring that the patient or surrogate promptly receive a copy of the POLST, so he or she can discuss it with family members and reconsider, if appropriate.
- Requiring mandatory reviews to update the form periodically.
- Requiring ongoing quality control reviews in facilities that use the POLST and mandating a review of compliance with the POLST law as part of licensing inspections.
Second Thoughts Connecticut drew from Manne’s analysis and brought other research and materials to bear to negotiate and reach a consensus with Connecticut POLST advocates for a POLST bill that is as close to a model for the nation as we have seen.
A news article about POLST and the Connecticut bill highlighted their success in reaching a balanced proposal to pilot their approach. We hope to see positive updates in the near future.