This week, the Pew Charitable Trusts’ Stateline carried an article entitled “New End-of-Life Measure Quietly Sweeps the Nation.” The measure described is Physician Orders for Life-Sustaining Treatment (POLST), sometimes also called Medical Orders for Life-Sustaining Treatment (MOLST). According to the National POLST Paradigm website, POLST originated in 1991, and 14 states had adopted it by 2004, when the National POLST Paradigm Initiative Task Force formed to expand the practice.
This blog has only covered POLST twice, once regarding the Illinois program and once regarding the New Jersey POLST bill. A POLST is a medical order, signed by a physician, instructing a health care provider about what types of life-sustaining treatment to provide or withhold. The instruction is supposed to be based on the wishes of the individual or their authorized surrogate health care decision maker. The National Task Force “strongly recommends” that the patient or surrogate signature also be required, but not all states have adopted that requirement.
A primary concern about POLST is whether an individual’s POLST form actually reflects their wishes, and whether the individual’s wishes are based on informed consent. Other forms of advanced directives in which people designate their health care wishes are not signed by physicians, so they need to be translated into medical orders to direct health care provider behavior, but POLST is a medical order that is effective immediately. If you or someone else calls 911 in an emergency, the emergency medical technicians (EMTs) know to look for a POLST form and to do what it says. If the POLST form says “do not resuscitate”, then the EMT’s are supposed to comply.
The Stateline article briefly but accurately reflects the disability community’s concerns as follows:
Some disability rights groups have focused on the issue of patient signatures. Without one, according to Diane Coleman, president of the disability rights group Not Dead Yet, “How do we know the POLST medical order actually reflects the desires of the individual?” Coleman worries that depending on how POLSTs are presented, they can make life-sustaining treatments—such as the use of feeding tubes—seem unbearable, even though many disabled people are able to live full lives because of them.
The reporter, Michael Ollove, also interviewed Cathy Ludlum from Second Thoughts Connecticut, and noted that:
Disabled rights groups lobbied successfully against POLST in Connecticut this year.
I don’t know about you, but successful lobbying against a mainstream bill by a disability rights group is not something I read about every day. Second Thoughts CT developed an effective flyer, researched with citations, to talk about the concerns they had with the bill. Among other things, the flyer said:
While MOLST is intended for people with about a year to live, there is a real danger that people with chronic and severe disabilities will get swept in as well. In California, nursing facilities pressured all patients to have a POLST, whether or not they were terminally ill. Delaware recently suspended its MOLST for similar reasons. People with years ahead of them are often considered “terminal” by medical professionals not familiar with the disability world. … Many of these concerns could have been addressed if people with disabilities had been at the table designing Connecticut’s MOLST pilot.
Connecticut’s research was very helpful to me and led me to some additional resources.
The Stateline article was picked up by the Huffington Post, which received 78 comments, including several by Stephen Drake, who went toe-to-toe with other commenters, and myself. As Stephen noted, “If the patient or surrogate signature isn’t required, this document is less about safeguarding the rights and preferences of the patient than it is relieving some perceived burden of uncertainty on medical providers.”
My comment passed on the information that I got from CT, and connected the dots between POLST concerns and futility policies:
Some problems with POLST implementation have come to light. Delaware suspended use of its POLST form when it was found that it was being used for people who did not meet the state’s criteria for POLST eligibility in that they were not terminal. In California, the state protection and advocacy agency issued a report documenting a case alleging that an individual’s physician revised his POLST form to say the opposite of the patient’s expressed wishes to receive life-sustaining treatment. It is perhaps a little known fact that many states allow doctors to overrule a person’s choice to receive life-sustaining treatment under “futile care” policies. (See http://medicalfutility.blogspot.com.) A balanced approach to POLST policy development must take these realities into account.
That last sentence sums it up for now. – Diane Coleman