Some days I hate POLST

There are days I hate the POLST form (Physician Orders for Life Sustaining Treatment). In concept, it’s significantly better than the pre-hospital DNR and a generic Advanced Directive. But here in the state of California where I work, the POLST form is misguided, poorly worded, and highly charged with negative connotations. Don’t get me wrong, I still use the POLST all the time. But I have decided it’s time to update the form.

Let’s start with the name of the document: Physician Orders for Life-Sustaining Treatment. The first thing we learn as geriatricians and palliative care providers who regularly have “goals of care” and “end of life” discussions with our patients is to avoid terminology which is medical jargon or laden with weighted connotations. We know that for many of the frail and ill patients with whom we have these complex discussions, cardiac resuscitation and mechanical ventilation often do not actually sustain life in the way most of them would define the quality of life they hope for as the outcome of any intervention. Rather, CPR and mechanical ventilation often prolong an inevitable death. By labeling this document “Physician Orders for Life-Sustaining Treatment” we imply that the interventions described in the form, should they be applied to you when you have “no pulse and [are] not breathing” (as detailed on the form) will be Life-Sustaining. So many of my patients, despite careful and thoughtful in-depth discussions I have with them prior to pulling out the POLST form, take pause when they see the title.

One of our responsibilities is understanding what a meaningful and dignified life—and death—our patients define for themselves. Our role as providers is then to counsel our patients and their surrogates that the Life that might be prolonged by CPR and mechanical ventilation in their current condition may not be meaningful life in any sense that they would wish for. Most people want to sustain their life. Even in the face of advanced chronic illness, unless there is considerable suffering that has been difficult to palliate, most individuals would say ,“of course I choose life” if the alternative is death. Making selections on a document labeled “Life-Sustaining Treatments” implies that you are making a choice between Life and the opposite of life—aka death—and that the Treatments listed must, of course, successfully sustain your life (or why would you label the document “Life-Sustaining Treatments”?

A far more neutral and preferable title for this critical document is Physician Orders for Scope of Treatment (or Medical Orders for Scope of Treatment ) as used in other states. Scope of treatment leaves no fuzzy terminology to be interpreted by the reader. It simply says that this document will tell readers, caregivers, providers, what types and levels of care an individual wants. It does away with the implication that using a POLST form means choosing death over life.

Which leads me to the second poorly worded section of the POLST: “Comfort Measures Only” in contrast to “Full Treatment”. Why do we need to include the word “Only” after “Comfort Measures.” The use of the word Only sets up the connotation that choosing a dignified, comfortable death in our own home is ‘lesser’ or ‘restrictive’ when, in truth, comfort measures can and are FULL treatment in every sense. My colleague Eric Widera has already given his ‘rant’ on this topic so I’ll take the liberty of reposting his prior blog here:

How can we avoid value-laden phrases that add no value? For a start, it would be helpful if we stopped adding them to important end-of-life documents. This wouldn’t be so hard. For instance – here is section B of the POLST form with and without a pithy phrase (see picture for full POLST form):

[] Full Treatment: Includes care described above. Use intubation, advanced airway interventions, mechanical ventilation, and cardioversion as indicated. Transfer to hospital if indicated. Includes intensive care.

[] Includes all care described above. In addition, use intubation, advanced airway interventions, mechanical ventilation, and cardioversion as indicated. Transfer to hospital if indicated. Includes intensive care.

Now which one of these two options did you think tells you more about someone’s treatment preferences? If you answered “they are both the same” than the addition of the phrase “Full Treatment” is at best a waste of ink. If you thought the addition of “Full Treatment” gave you a better idea of what a person would want then we have a much bigger problem than our domestic ink supply.

So, while the POLST form is a valuable tool in concept, as it stands in California it leaves too much room for negative interpretations, second-guessing and doubt by patients and surrogates as to whether they’ve made the wrong decision. Choosing Comfort Measures Only on a Physician Orders for LIFE-Sustaining Treatment form can feel like you do not value life and you are not allowing full treatment when, in reality, choosing to forego CPR/mechanical ventilation may be the most poignant decision you make to define your life as you see it, and to pursue in every way the full scope of treatment (on your terms) for dignity, comfort, and control.

If you agree with the need to change the language of California’s POLST form to:

1) Change the title to POST (Physician Orders for Scope of Treatment) and

2) Remove the words “Only” and “Full Treatment” from the Medical Interventions section

Please join me in developing a California Physician Orders for Scope of Treatment (POST) advocacy group to support these changes with the California Coalition for Compassionate Care’s POLST program.

By: Helen Kao