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Patients get the specific care they want at the end of life when they document their wishes using a physician orders for life-sustaining treatment (POLST) form, according to a just-published study that examined death records for 58,000 people who died of natural causes in 2010 and 2011 in Oregon.1
"This is the strongest data that we have had. It’s associated with a much higher level of meeting patients’ wishes than anything anyone else has developed," says Susan W. Tolle, MD, FACP, one of the study’s authors and director of Oregon Health & Science University’s Center for Ethics in Health Care in Portland.
The study of 17,902 decedents with a POLST form in the state’s registry included multiple care settings, says Tolle, "which no other study has done. It matches orders marked on your POLST form and where you died."
Of the decedents’ orders for scope of treatment, 26.7% were for "limited additional interventions" and 6.4% were for full treatment. Of the 66% with orders for comfort measures only, 6.4% died in the hospital, compared with 44.2% of those with orders for full treatment and 34.2% for those with no POLST form in the registry.
"The results are somewhat surprising only because we have not found advanced directives to be nearly as effective as what is suggested in this study for POLST," says Reid Blackwelder, MD, president of the American Academy of Family Physicians.
The researchers were surprised that individuals who marked "full treatment" on the POLST form had a 10% higher rate of death in the hospital than those who had no POLST form at all. "Personally, I hadn’t expected it to be higher than no POLST form, which is a default to full treatment," says Tolle.
Tolle expects that the new data will result in increased utilization of POLST, especially in the 43 states where POLST programs already exist or are in development. "In other states, this will give more support to bringing coalitions together to solve policy problems in their state, when existing policies make dissemination more difficult," she says.
While several states are currently developing POLST programs, only Oregon and West Virginia have mature programs that have had the chance to grow and develop. "Hopefully, states with new programs will see similar results," says Blackwelder. "A central registry is needed to ensure immediate access to these orders, regardless of location. This will be challenging in some states."
Some state laws do not recognize the POLST form as a legal form of advance planning, and therefore do not provide needed legal protections to doctors and facilities for withholding care pursuant to the form, says Jason W. Manne, JD, Dr.PH, an adjunct professor at the University of Pittsburgh Law School.
"Bioethicists need to be the ones making sure that hospitals and other medical providers have a quality POLST process, so we can be assured that the form expresses authentic and stable patient preferences," he adds.
There are logistical issues related to the storage and retrieval of POLST forms, including lack of systems that capture advance care planning documents in electronic medical records. "Unlike Oregon, most states do not have statewide registries. The program relies on the transfer of a paper form," says Susan E. Hickman, PhD, senior affiliate faculty at Indiana University Health’s Charles Warren Fairbanks Center for Medical Ethics in Indianapolis.
Culturally, use of POLST requires recognition that there are limits to what providers can do, says Hickman, and a willingness to talk about difficult decisions.
"We are starting to see more attention to the need for difficult discussions, as well as increased training opportunities to help health care providers build skills," says Hickman. "But more work is needed to help ensure high-quality decisions."
POLST is often confused with an advance directive, says Patricia A. Bomba, MD, FACP, program director of New York’s medical orders for life-sustaining treatment (MOLST), an endorsed POLST program launched in 2004. It is often not recognized that there are different target populations for the different forms.
"Ethicists should become educated themselves," urges Bomba. "They need to understand the difference between advance directives and medical orders, the different appropriate populations for each type of form, and the processes for completing each."
The main misconception about the POLST is that it is appropriate for individuals not near the end of life, according to Manne. "Although some states have adopted laws recommending the form for people with up to five years of life expectancy, this is not a proper use of the form," he says.
As with many end-of-life discussions and orders, the potential exists for patients, family members, and even providers to forget that the patient always has the right to change their mind and revoke such forms, says Blackwelder.
"From my perspective, such forms create a forum for discussion, and a reminder that the health care team should always explore these issues and verify preferences," he says.
One out of seven POLST forms entered in the Oregon registry are revisions of an existing form. "The message that you can change your mind at any time needs to be clear," says Tolle. "It’s not unusual to fill out more than one POLST form as you are nearing the end of your life."
Another common misconception is that POLST is focused only on limiting treatment. "This isn’t about saying you can’t have treatment — it’s about documenting what treatment you want," says Tolle. "Lots of people who are not really close to death are marking yes’ to CPR."
Many hospitals and systems do not have bioethicists on staff, but they may have an ethics committee. "Such committees will need to be involved in the education about and use of POLST forms," says Blackwelder.
Communities vary in terms of aggressiveness of practices at the end of life, notes Tolle. "National ethics leaders need to move beyond saying patients have a right to have their wishes respected, and make sure it’s happening in the community where they live," she urges. "The time is now and the tools are here."