More Oregonians are leaving instructions regarding their end-of-life wishes for medical interventions, but a growing percentage of those are choosing full resuscitation or other aggressive measures.
That could suggest that the instruction forms, intended to protect people from unwanted interventions at the end of life, are being filled out too early by people who aren’t at risk of impending death.
Researchers from the Center of Ethics in Healthcare at Oregon Health & Science University published results last month from an analysis of a registry for Physician Orders for Life-Sustaining Treatment, known as POLST forms. The forms indicate whether the person wants full resuscitation and CPR performed by emergency medical services in the event he or she is found unconscious, not breathing or without a pulse. The forms are generally used to avoid unwanted interventions or hospitalizations.
Oregon developed the first POLST forms in 1993, and in 2009, created a registry of forms that could be checked by emergency medical personnel or doctors in case a hard copy could not be quickly located. The registry has received over 350,000 forms from more than 220,00 patients.
The researchers, led by Dr. Susan Tolle, matched death records to POLST forms in the registry for two groups: patients who died in 2010 and 2011 just after the registry was launched, and those who died in 2015 and 2016.
The proportion of Oregonians who died with a form in the registry increased from 31 percent to 45 percent over that time frame. It is unclear how many more Oregonians filled out forms but did not submit them to the registry.
“Oregonians do plan, and they plan at a remarkable rate compared to the rest of the country,” Tolle said. “Almost half of people at the time they die have a POLST form in the registry”
Cancer remains the most common cause of death in Oregon and accounts for the largest number of POLST forms. But compared with the earlier time period, more forms are being filed out by patients with Alzheimer’s disease and dementia, chronic lower respiratory diseases, Parkinson’s disease and kidney problems. The timing between completion of the forms and death increased significantly from 5 weeks in the first time period to 21 weeks in the second.
Patients with conditions of frailty such as Alzheimer’s or Parkinson’s, typically have a longer period of decline, sometimes as long as 10 years, while patients with widespread cancer who have made the decisions to stop treatment often don’t survive more than six months, Tolle said. That was reflected in the registry, where patients who died of cancer typically completed their forms at a median seven weeks before their deaths. Patients with Alzheimer’s or Parkinson’s on the other hand, completed the forms at a median of 52 weeks before death.
“We know we really have some work to do in really individualizing about the trajectory to death and the way people die, and then teaching about the ‘when’ question,” Tolle said.
Unlike advanced directives, which are generally filled out while people are relatively healthy, POLST forms are generally intended to be completed when someone is more seriously ill and could die within the year.
The timing could be adding to the trend of more forms requesting aggressive intervention. While do-not-resuscitate and comfort-measures-only orders were still the most common choices in the registry, an increasing number of people opted for “attempt CPR,” “limited treatment,” or “full treatment.”
“If you fill out a POLST form that says full code, full treatment, that’s exactly the care you would have gotten without a POLST form,” Tolle said.
The data from the registry cannot determine why more people are choosing those options. But the OHSU researchers identified potential reasons.
In 2011, the Affordable Care Act expanded the Medicare annual wellness visit to include end-of-life care planning, and in 2016, such conversations became a billable Medicare benefit. The researchers suggested that doctors and their patients who went through that planning process might have been more likely to fill out a POLST form as a result, even though the patient had no life-limiting illness.
It’s also possible that families of those with more serious illnesses had been instructed to call hospice instead of emergency medical services and so those forms were not submitted to the registry. That could skew the numbers toward more people choosing more aggressive treatment.
Tolle has heard stories from younger, healthier seniors suggesting they were offered forms before they were needed.
“They were healthy and 65, and somebody had offered them a POLST form, and they were wondering if they should really have it,” she said.
Earlier this year, Tolle wrote in the journal Health Affairs about concerns that health plans were tracking how often doctors were completing POLST forms and using the data as a way to measure the quality of their care. That led to healthy patients feeling pressured to a complete a POLST form even though they weren’t close to death.
And in California, use of POLST forms was added to the data set that skilled nursing facilities were required to collect, leading to some nursing homes having a completion rate of 100 percent.
“There are some areas where it seems like folks are trying to make it a requirement to have one in some facilities,” said Dr. Laura Mavity, a palliative care doctor with St. Charles Bend. “It’s really meant to be something that is the family’s choice. It was never meant to be mandated.”
Completing forms too early could leave patients at risk that their initial choices are no longer valid. POLST forms automatically expire after 10 years in the registry or when a new form is submitted.
“Studies have shown that POLST has really helped to make sure that people receive the level of care they want at end of life,” Mavity said. “But we always need to attend to those risks, to make sure that as the pendulum swings in medicine, that we never get to a point where it is a mandatory thing.”
Studies have shown that POLST forms work. Those who complete forms requesting comfort-only care are less likely to end up in the hospital or the intensive care unit receiving invasive medical treatments they don’t want. After Oregon published outcomes data in 1998 others states began implementing similar forms.
The Oregon forms will undergo some revisions next year, including a change in the name, from “physician orders” to “portable orders” to reflect the expanding range of providers who can now complete forms for their patients.
The color of the forms will change from pink to white with a pink border to facilitate photocopying and scanning of forms.
The most substantive change will be the removal of the section about feeding tubes.
“It’s never an emergency to put a feeding tube in,” Tolle explained. “And you always have an informed consent because it’s a surgical procedure.”
Feeding tubes were once thought to extend the lives of patients with dementia. But recent studies have shown that patients are often restrained to avoid pulling out the tubes, which in turn increases the risk for bed sores.
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