Important story on NYT blog: When Advance Directives Are Ignored

Paula Span wrote a very important story on the New York Times‘ New Old Age blog about how – despite the best efforts – a dying person’s documented wishes might be unknown or ignored.

The story discusses one possible solution – the use of a POLST form. POLST stands for a Physician Orders for Life Sustaining Treatment. The story explains:

“Oregon, which pioneered POLST (Physician Orders for Life Sustaining Treatment) 20 years ago, in 2009 created an electronic Polst registry giving emergency workers and hospitals round-the-clock online access.

In a new study of 58,000 Oregonians who died in 2010 and 2011, the registry’s first two years, (researchers) found that with Polst “you are extremely likely to have your wishes respected,” she said. Of those who specified “comfort measures only,” only 6.4 percent died in a hospital. Because some terminally ill patients can’t be kept comfortable at home, that percentage will never be zero. Those who specified “full treatment” to prolong life, on the other hand, were more apt to die in the hospital (44.2 percent) than those with no Polst in the registry.

Alas, most of us don’t live in Oregon (or West Virginia, which also has a state registry). Although more than 40 other states have some sort of Polst program, they’re not nearly as advanced and may not extend to every region or hospital or ambulance squad.”

My 93.5 year old Dad lives in an assisted living facility and he has a POLST form. But after reading the NYT story, I did some digging and soon learned that his state does not have an electronic POLST registry.

So reporter Span’s advice stands:

“Meanwhile, the best advice I can find is that everyone should have an advance directive, discuss his or her decisions with doctors and family members, and appoint a strong health care proxy. Then that person has to physically shove the appropriate forms under people’s noses at every hospitalization, every visit to a new physician, every transfer to a nursing facility. … Even then, things can go wrong.”

I don’t have much confidence that my Dad’s POLST will be known or followed if he has a cardiac arrest or some other event in a public hallway or dining room of the facility in which he lives. There appear to be a lot of holes in the non-system.

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Comments

Mary Barton posted on June 24, 2014 at 2:29 pm

Before they instituted their current Medical Orders for Life Sustaining Treatment policy, Massachusetts had a pilot program that used a MedicAlert type bracelet to identify a patient’s wish to be Not resuscitated in the case of cardiac arrest. (ie, to be DNR). That was a clear bit of communication for someone living out in the community. I wonder if someone could opt to wear something similar, as a safeguard when out of one’s usual location.

Sara Buscher posted on June 24, 2014 at 5:50 pm

Most states have laws for Do Not Resuscitate Orders which are evidenced by the wearing the bracelet you mention. This is an excellent way, and better than a piece of paper like a POLST/MOLST, to communicate the existence of the order. Emergency responders are trained to look for the bracelet and act accordingly.

Maggie Mahar posted on June 30, 2014 at 2:19 pm

A DNR anklet is good—but it don’t help you if you don’t need to be resuscitated.

You also need protection against being kept alive through extraordinary measures,
One of the easiest (and least panful) ways to die to stop fluids and food (this needs to be
supervised by a palliative care specialist or hospice worker who will oversee your care, control
pain, etc.)

But many hospitals won’t do this—even if you have an advance directive and a strong health care proxy–unless you are in the hospital’s hospice care unit (NOT its intensive care unit.)

Alternatively , if the doctor says the patient is within 6 months of dying he or she can be transferred to a hospice. Medicare will pay for it, and hospice workers will withhold food and liquids.

The main thing to remember is this: if you want to be sure your advance directive is honored, don’t go to an ER or a hospital. If you are that sick they are likely to put you in an ICU–a very difficult way to die.

Stay at home or in your assisted living facility.