I just learned that the Illinois legislature passed a bill authorizing Physician Orders on Life-Sustaining Treatment (POLST) (ILH 3134) which was signed by the Governor last week. We haven’t addressed POLST on the NDY blog yet, but it’s a primary focus of legislative activism on the part of the so-called “end-of-life” coalitions that formed during the height of 1990’s mega funding through Last Acts.
The argument for developing POLST forms is that advance directives can be long and complicated, specifying various health conditions and treatment options, potentially requiring both a doctor and attorney to determine how they would apply in a given real life situation. Perhaps more significantly, research continues to show that most people don’t have advance directives. So the argument goes, emergency medical personnel and most other health care providers can’t process the advance directives if a medical crisis or decision point arises, so they resuscitate or otherwise aggressively treat someone who didn’t want it. POLST is a short and simple form, brightly colored, that is supposed to tell medical personnel what to do.
The POLST provision in the Illinois bill is amazingly brief.
In consultation with a statewide professional organization representing physicians licensed to practice medicine in all its branches, statewide organizations representing nursing homes, registered professional nurses, and emergency medical systems, and a statewide organization representing hospitals, the Department of Public Health shall develop and publish a uniform form for physician do-not-resuscitate orders that may be utilized in all settings. The form shall meet the minimum requirements to nationally be considered a physician orders for life-sustaining treatment form, or POLST, and may be referred to as the Department of Public Health Uniform DNR Advance Directive. This advance directive does not replace a physician’s do-not-resuscitate (DNR) order.
The bill’s reference to national standards presumably refers to the concepts promoted through the National POLST Paradigm Task Force (“Task Force”).
A major concern that NDY has about POLST is that some state laws only require the doctor to sign the form that will be used as the basis to deny life-sustaining treatment. Although the national Task Force recommends that the individual or surrogate signature should be required, it is not required in New York (though there is space on the form for it), and is apparently not proposed to be required in Illinois. According to a letter urging the Illinois Governor to sign the POLST bill into law, promoted through the Chicago End-of-Life Care Coalition:
The new IDPH Uniform DNR Advance Directive form will be a standardized advance directive and a secure document that is completed by a person who is known to have a terminal illness, a chronic condition that will lead to cessation of life, is generally frail, or lives in a nursing home. As a Physician Order for Life Sustaining Treatment (POLST), it is signed by a doctor after the patient has selected clearly presented treatment choices, then entered into the patient’s medical record, and therefore a secure directive for future medical care. (Emphasis added.)
The only purported justification I’ve heard from POLST advocates for why the patient needn’t sign the POLST form is the suggestion that it would be too inconvenient because they are sick. That explanation doesn’t make sense if the person is able to complete the form as described in the Illinois letter.
But the larger question is how can health care providers know that a POLST form signed only by a physician accurately reflects the wishes of the individual? The answer given by POLST advocates is that the physician is supposed to fill out the POLST form based on direct communications with the individual or their surrogate. Basically, we’re all supposed to trust the physician to have those discussions and document them accurately.
There are a lot of potential reasons to doubt whether such unquestioning societal trust can ever be justified in the real world, reasons derived from factors like insurance coverage denials, medical error, medical malpractice, time constraints on physician visits, contractual constraints on “utilization” (i.e. provision of medical treatments), to name a few.
But perhaps the most glaring factor that comes to my mind is the existence of laws in many states which allow physicians to overrule an individual’s advance directive, or individual or surrogate decision, in favor of life-sustaining treatment. These are generally called futility provisions, but they don’t objectively define “futility”. Instead they leave it up to the physician to determine what treatments are required by the prevailing standard of care and what treatments are not. Blanket authority and full legal immunity are vested in the physician, without accountability. Futility policies have been discussed extensively in medical literature, and by commentators including on this blog.
In states which allow doctors to make futility judgments that overrule an individual’s decision for treatment, and in the absence of the individual’s signature or some type of independent oversight and enforcement, how can we ever be sure that a doctor’s signature on a POLST form reflects the person’s treatment choices rather than the physician’s?
Unfortunately the disability community has a lot of experience with devaluation by physicians and other health care providers, devaluation that leads to pressure to forego life-sustaining treatment. We aren’t impressed by empty platitudes and we won’t be getting on the POLST bandwagon anytime soon. – Diane Coleman