Patients who document their end-of-life wishes using a special medical form get the specific care they want in their final days, according to a study published online in the Journal of the American Geriatrics Society.
The study by researchers at Oregon Health & Science University looked at the growing use of the voluntary form, called Physician Orders for Life-Sustaining Treatment, or Polst. The document lets patients request or refuse certain medical treatments such as CPR or intensive care. The study is the largest on the topic so far and the first to look at preferences stated in the form and where people actually die.
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Polst programs have been adopted or are in development in 43 states. Proponents say that in addition to giving patients a voice in the face of advanced illness, they can help trim the nation's bill for costly interventions that don't extend life for patients who don't want them. However, the programs remain controversial with some groups in the often-fraught national debate about end-of-life care.
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Lead study author Erik Fromme of Oregon Health & Science University reviews a Polst form with patient Helen Hobbs, 96.
The researchers examined death records for 58,000 people who died of natural causes in 2010 and 2011 in Oregon, where the Polst approach was developed in 1991 and which has the most comprehensive data on its use. Nearly 18,000 of the patients, or roughly 30%, had such forms on file at time of death. In comparing the location of death with the medical treatment people requested on their forms, only 6.4% of patients who specified "comfort measures only," or allowing for a natural death while relieving pain and suffering, died in a hospital. Meanwhile, 22.4% of patients who chose "limited additional interventions" died in a hospital and 44.2% of patients who chose "full treatment" died there. Of people with no such form, 34.2% died in a hospital.
"We think almost everyone in our study who wanted to be with family and avoid an unwanted terminal hospitalization, as long as their comfort could be managed, got their wish," said Susan Tolle, senior author of the study and director of the Center for Ethics in Health Care at the university. "There is a remarkable association between where you die and the orders selected on your Polst form."
The forms are meant to be signed by a patient's physician, nurse practitioner or physician assistant after a discussion with the patient. In Oregon, patients can choose to have the form stored in a secure online registry that emergency personnel can access quickly in a crisis.
Some organizations that oppose Polst forms say they pose unacceptable risks to patients' well-being, including Catholic bishops' groups in some states which have said that the forms conflict with church doctrine and ethical values. Wisconsin's Catholic bishops, for example, have published their own guidelines aimed at helping individuals convey their desires regarding health-care decision-making to align with church principles.
Polst forms are revocable at any time. But critics have also raised concerns about whether some patients fully understand their choices and how easily patients can alter the form. Some critics believe only doctors, not other health professionals, should administer the forms.
Unlike an advance directive or living will, which are often recommended for healthy patients to make their end-of-life wishes known to loved ones, and which may designate a surrogate to make decisions, Polst forms are designed for seriously ill or frail patients whose health indicates that such decisions might need to be made in a relatively short time frame. Clinicians are encouraged to offer them to patients if they wouldn't be surprised to see them die within a year, and the forms are revocable at any time.
Research in the same geriatrics journal earlier this year found the increased use of advance directives during the past decade has had little effect on hospitalization and hospital death.
"While there have been many efforts to improve end of life care in the U.S., Polst seems to be the first approach shown to be effective in achieving for patients what they would like in their end of life care, and where that care should be delivered, be it in the hospital or home," said Mark Siegler, director of the MacLean Center for Clinical Medical Ethics at the University of Chicago, who wasn't involved in the study.
Besides providing documents that meet local regulations, Polst programs train health-care providers to discuss end-of-life treatment choices. Once signed by both patient and clinician, the form becomes an enforceable standing medical order in the patient record. States that have adopted the program also have put in place general protections for medical personnel who follow the directives.
Carlos Rivera, 72 years old, survived a heart attack at 50 and was resuscitated by emergency medical personnel. But with advanced heart disease, he said he wouldn't want to repeat the experience and signed a Polst form that includes a do-not-resuscitate order. "It would take the load off my family and relieve them of fighting over what to do," said Mr. Rivera, who retired as a community agent in the Portland school system. "And people have the right to determine their own destiny."