Each evening, Tina Castanares sits with her 97-year-old mother and reviews the next day. Castanares tells her mother who will wake her up in the morning and help her get ready for the day. Then her mother recites what she wants and doesn’t want paramedics to do in case she has a heart attack during the night.
Castanares knows that might sound morbid, but the ritual keeps her mother’s mind sharp and comforts her to know that her mother’s end-of-life wishes will be considered in an emergency.
That’s why her mother filled out a Physician Order for Life-Sustaining Treatment form, commonly called POLST. A recent study says that nearly half of all Oregonians who have died since the form was created had one filled out and the percentage of people doing so has only grown. The state leads the country how many people have a POLST form.
About 31 percent of people who died from 2010 to 2011 had a POLST on file with the state’s registry. A group of Oregon Health & Science University researchers, along with one from Harvard’s Dana-Farber Cancer Institute, found that number had jumped to 45 percent between 2015 and 2016.
In that same time frame, the number of deaths in Oregon by natural causes increased nearly 13 percent while the number of forms filled out by nearly 66 percent. Researchers say that indicates the popularity of the form has grown independent of the size of the population who would need it.
Oregon has led the country in palliative care in several ways. One of the most high-profile is Oregon’s Death with Dignity law, passed by voters in 1994 and enacted in 1997, years before other states started to adopt similar physician-assisted suicide laws.
But POLST is possibly the most impactful. The Center for Ethics in Health Care at Oregon Health & Science University put together a group of health care providers from the state to create the document, which allows anyone to say what kind of life-saving measures they want or don’t want in an emergency.
Every state now has some form of a POLST form. Oregon also has the most robust registry that any doctor or emergency worker can access in seconds.
Paramedics in Oregon are allowed to start CPR or other resuscitation techniques on a person in a medical crisis at their own discretion. But the chance of it working can be as low as 3 percent for people who are permanent residents of a nursing home. So many frail and older people fill out a POLST form that refuses those resuscitations measures.
Castanares’ mother is one of them. When an ambulance came twice, both times for non-life-threatening injuries, emergency crews were able to immediately look up her POLST form and see that she doesn’t want to be evaluated for anything beyond the injury. She has also made it clear she doesn’t want a breathing tube or other interventions other than those that would make her comfortable and able to be at home before she dies.
“She just really wants a natural death and really feels the POLST protects that,” Castanares said.
OHSU Center for Ethics in Health Care Director Dr. Susan Tolle said that many people who fill out a POLST form do it for the same reasons. However, the number of people who want extensive medical care in emergency situations has increased, according to the study.
About 13 percent of people who had a POLST form filled out when they died in 2015 to 2016 requested every life-saving measure, whereas only 8 percent did in 2010 to 2011.
And sometimes those desires change over time. Many people fill out more than one POLST over the course of their life, Tolle said, as their diagnosis changes or they experience new ailments.
“This is like any other medical order: if the wishes and the values and the context change, the orders need to change so that the plan of care is clearly guided as someone moves from one care setting to another,” Tolle said.
Tolle was also surprised to find that many people fill it out earlier in life.
The older an Oregonian is, the more likely they are to have a POLST form on file with the state. For people 95 and older, nearly 60 percent have a form — an increase of 83 percent over the last five years. But even people in their 60s and 70s have filled out the forms at a growing rate.
More than 31 percent more people between 65 and 74 had a POLST on file when they died than in 2010.
That could change how doctors talk to patients about POLST forms. Many people who are frail or have weak immune systems die suddenly from pneumonia or complications relating to disease. Tolle also said that people with memory or dementia conditions have started to fill out forms years before they expect to die.
Doctors tend to recommend POLST forms for people who are within months or a year of death. But Tolle said that might be excluding people who want to state their needs early and often.
“We didn’t really think carefully enough or fully understand the special needs of those at the most advanced age and frailty, and especially those with cognitive impairment,” Tolle said.
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