Life Matters Media
Quality of life at the end of life

The State Of POLST: A Conversation With Pioneer Susan Tolle

BY DANIEL GAITAN | daniel@lifemattersmedia.org

As the POLST paradigm spreads across the nation and gains acceptance among patients and providers, some critics have expressed concern about its effect on end of life care.

For millions of seriously ill and aged Americans, advance health care directives alone will not be enough to ensure their end of life care wishes are honored in case of emergency or incapacity.

Dr. Susan Tolle

Dr. Susan Tolle

That’s why Oregon Health and Science University medicine professor Dr. Susan Tolle created POLST (Physicians Orders For Life-Sustaining Treatment).

Tolle began developing the medical order in the early 1990s in Oregon. POLST allows terminally ill adults to make clear what medical treatments they desire or wish to avoid – they may indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes, among other things. They also indicate the location where they prefer to receive care.

POLST, far more detailed than conventional living wills or advance health care directives, must be signed by a medical practitioner to be valid. Ideally, a POLST form is completed only after meaningful conversation between the patient, his or her doctor and loved ones.

Tolle hopes people in their last year of life will carry a copy with them to guide emergency medical services to provide or withhold specific treatments. It’s designed to travel.

However, some doctors have questioned the rapid nationwide expansion of POLST and several Roman Catholic organizations are worried about the possibility that POLST could compromise patient-centered decision-making, leading to premature death or suffering.

Tolle spoke with Life Matters Media about her efforts, the state of the POLST movement and addressed some criticism.

How do you react to the increasing amount of criticism to POLST?

As POLST becomes much stronger and much more widely used, it becomes in many ways a bigger target.

When it first started in Oregon, no one paid any attention to it. There were no articles saying it shouldn’t be used or videos saying it’s not a good thing. It was a clinically-based activity seen as medical orders, not something that was more politically charged or felt to need a great deal of regulation.

Now, criticism comes in two forms. The first is academically, with end of life leaders very invested in their way of approaching end of life care and more of an advocate for their program and not necessarily for POLST. The other is a steady level of concern by a small group of members from the Catholic Medical Association, along with a small number of bishops, particularly in Wisconsin.

What the people who oppose POLST miss: there are a substantial number of individuals nearing the end of life with advanced illness who feel very strongly that they would prefer not to die in the hospital – they want to die at home, they feel more comfortable in a different environment, they want to be with people who understand their condition, or with people who can just get them a cup of coffee when they want. It’s clear that a POLST program is associated with getting your wishes far, far more often.

ePOLST is the fully integrated electronic version of POLST in Oregon. How is it working?

We are digital in my institution – I go online, I fill them out and instantly the toolbar turns to ‘Yes.’ I print a copy for the patient and it automatically goes into the registry. It can be found instantly by EMS or any other health care system in the state.

It is fabulous. It is error-free in submissions, which means that they are dated correctly with a readable signature and with orders that are not incompatible – you can’t mark that you want CPR and comfort measures only, it won’t let you.

It also plays videos automatically at different points. If a patient wants to talk about a feeding tube, you can show them what one looks like.

We are also able to measure how often POLST forms are checked throughout our institution. Are people actually using it to guide care? It’s exciting.

There is also an ePOLST system in New York, but it is not as heavily used as ours.

ePOLST will clearly grow. People have a real sense that if you fill-out some important papers in a health care system, that system should be able to find it in its medical records. They assume that this already happens.

How many states have POLST programs?

The most exciting news is that California became a mature state. There are three: Oregon, West Virginia and California, the largest. In those states, if you are a patient or family member, every single region of that state in hospitals, hospices or long-term care facilities are using POLST. It’s a big deal.

There are 19 ‘endorsed states,’ counting the three mature states. There are also 25 ‘developing states’ and three states not-conforming to POLST requirements – they have programs that have something wrong. There are two states with POLST contacts but no program; South Dakota has no contact at all.

Much of the country has access, but it is spotty in all but three states. It is a little bit of ‘swiss cheese’ situation, but filling in quickly in endorsed states. Things are changing, which is why people are questioning whether it should be rolled out so quickly.

– Disclosure:  Life Matters Media Co-Founders Randi Belisomo and Dr. Mary F. Mulcahy serve on the Illinois POLST Task Force