John Kelly Quoted in NPR Thanksgiving Day Article on POLST

As regular readers of the NDY blog know, the disability community has concerns about Physician Orders for Life-Sustaining Treatment (POLST).  (For NDY’s overall take on the subject, go here, and for NDY’s summary policy paper on POLST, go here.)

For one thing, even though it says “for” life-sustaining treatment, it would be more accurate to say “on” or “re(garding)”.  And if you really want to be accurate in reflecting the medical profession’s intent in promoting POLST, you’d say “against” or “vs” because there seems to be a far from subtle POLST bias against life-sustaining treatment.

In fact, as NPR’s After the Cranberries and Pie, Let’s Talk About Death by Nancy Shute explains:

“Because it’s signed by a doctor or other provider, a POLST has teeth. It overrides the legal obligation of an EMT or a hospital to provide CPR and other emergency care that for old and sick people can lead to a long, miserable hospital stay.”

Besides the inherent bias against treatment, the disability community is deeply concerned about the inappropriate use of POLST on people with disabilities who are nowhere near dying.  John Kelly described his experience with MOLST (the Massachusetts version of POLST) in his recent online response to a survey by the Institute of Medicine’s Committee on Approaching Death.   So Shute contacted John when she was preparing her article for NPR’s Thanksgiving edition.

Here’s how she conveyed John’s concern:

Some members of the disability community have questioned whether POLST is being too broadly applied. Rather than give people more control over end-of-life medical care, they say, it could mean interpreting “disabled” to mean “on death’s door”.

“Our concern is that it’s being used with non-terminal people,” says John Kelly, a 54-year-old quadriplegic who lives in Boston. He was taken aback when a nurse showed up with Massachusetts’ version of the form, called a MOLST. “I joke that I’ve got my pink MOLST on the fridge, and I’m afraid that the firemen will come in and glance at the refrigerator and say, OK, he’s got [a do-not-resuscitate order]. They interpret it as meaning no treatment at all.”

Shute also spoke with Dr. Susan Tolle, identified as “director of the Center for Ethics in Health Care at Oregon Health Science University”, though not mentioning that Tolle is also a member of the executive committee of the National POLST Paradigm Task Force.   According to Tolle:

“We would encourage doctors to reach out to patients if they would not be surprised if they died in the coming year,” Tolle says, “or if they had advanced frailty. The little old lady hunched over their walker, that’s the definition of frailty.”

***

POLST is almost certainly inappropriate for someone disabled but otherwise healthy, Tolle says. “People are handing out the form a little too early sometimes, and we want to push back on that,” she says. “It’s for people who we can say are in the winter of their lives. They have advanced illness and frailty. They have declining health.”

The definition of who’s appropriate for POLST is a significant aspect of Dr. Tolle’s work over a period of years, and this vague, overbroad and confusing description appears to be the best she can offer.  No wonder that mistakes are being made that put our lives at risk. – Diane Coleman