Today, on National Healthcare Decisions Day, authors Kate O’Malley of the California HealthCare Foundation and Nancy Zweibel of the Retirement Research Foundation, discuss how foundation efforts have contributed to the adoption and expansion of a standard paradigm for end-of-life planning.

Many people assume that their family members know the kind of care they would want in the event of a health crisis, but in reality, relatives often feel ill-equipped to make difficult decisions about a loved one’s care without a plan. Which is why, on National Health Care Decisions Day, we all are encouraged to think about what type of care we would want in the event of a medical emergency, share those decisions with our loved ones, and express them in writing.

Hopefully, many Americans will take this opportunity to complete or update an advance directive, which provides general guidance about health care wishes and names a proxy decision maker. But for people with life-limiting illness, for whom these issues are real and present, these documents may not be enough to guide care at the end of life. Too often, neither living wills nor proxy decision makers are available when a life-threatening event occurs. Living wills may be too vague to be helpful, or they may have been completed long before the current situation, so they raise questions about validity.

More than twenty years ago, a program began in Oregon to overcome these hurdles and honor the current treatment wishes of patients with advanced illness. Physician Orders for Life-Sustaining Treatment (POLST) encourages communication between providers and patients, enabling patients to make more informed decisions. POLST guides patients through the risks and benefits of medical treatments pertinent to their own medical situation so that they can request or refuse certain measures, such as resuscitation, breathing tubes, or feeding tubes. Signed by the patient and a doctor (nurse practitioners and physician assistants can sign POLST forms in some states), a POLST form differs from an advance directive because it creates a set of medical orders that determine the intensity of medical treatment, and it is honored across all settings of care.

POLST is making a difference. Studies have shown that among patients with a completed POLST, treatment preferences were respected 98 percent of the time, and no one received unwanted resuscitation, intensive care, or breathing or feeding tubes. POLST closes the gap between the end-of-life treatment patients want and what they receive.

POLST is a powerful tool to help patients with life-limiting illnesses to decide and communicate their wishes. The following are two foundations’ lessons from their efforts to support the adoption and spread of POLST.

The Adoption of POLST in California

The California HealthCare Foundation works as a catalyst to fulfill the promise of better health care for all Californians. In 2007 the foundation recognized the need to expand POLST to California to ensure that patients with serious, life-threatening illness receive care consistent with their wishes. That year, the foundation made a grant to the Coalition for Compassionate Care of California to develop a strategy to introduce POLST in the Golden State.

The chosen strategy was three-pronged. The foundation supported local POLST coalitions to ensure that resources were available in communities all over California. In tandem, the coalition formed and staffed a statewide task force of representatives of hospitals, nursing homes, and emergency services; physicians; consumers; regulators; and advocates to guide the adoption of POLST across different settings of care. Finally, the coalition developed a robust statewide education effort to prepare health care providers to have the conversation with patients about end-of-life care.

For the past six years, more than $4 million in grants sponsored twenty-seven local POLST coalitions, fifteen statewide “train the trainer” sessions (which have trained 600 POLST trainers), and the translation of the California POLST form into Armenian, Chinese, Farsi, Hmong, Korean, Pashto, Russian, Spanish, Tagalog, Vietnamese, and Braille. Its grants also supported the creation of uniform educational materials, policies, and protocols for hospitals, nursing homes, hospices, and others interested in initiating POLST conversations with patients. In 2009, California legislation was enacted that requires that POLST be honored across all settings of care and provides protection against lawsuits involving health care providers who honor POLST in good faith.

Providers in California have markedly increased their awareness and use of POLST.

* After two years of POLST implementation in California, 62 percent of nursing homes in the state reported that at least half of their residents had a completed POLST on file.

* In 2011, approximately 300 of the 1,200 nursing homes in California completed a survey on POLST use. Of those 300 homes, 84 percent reported educating staff about POLST; 89 percent had admitted a patient with a completed POLST form.

* In 2012, 74 percent of California’s assisted-living facilities had carried out staff education about POLST, and more than 75 percent of facilities in the state had admitted a resident with a completed POLST form.

* An informal survey found that the percentage of emergency room physicians in California who are familiar with POLST increased between 2010 and 2012 from 75 percent to 93 percent.

The focus on provider education, stakeholder engagement, development of shared resources, and ensuring quality of the POLST conversation and documentation are credited with the increased awareness and uptake in California.

The National Expansion of POLST

Improving patient care at the end of life is also directly relevant to the mission of the Retirement Research Foundation, a national funder based in suburban Chicago, which works to improve quality of life for older adults. In 2011, after a review of the evidence base, the foundation recognized that POLST conversations are a best practice for bringing choice and dignity to people with life-limiting illness. That same year, the foundation funded a three-year, $597,765 grant to the Oregon Health and Science University Foundation to catalyze a national expansion of POLST. Funding is enabling the national POLST program office at that university to provide grants to state POLST coalitions, offer mentorship to states, and provide technical assistance on legal and medical questions that states must address in implementing POLST. Since the grant was made:

* state-specific POLST forms have been approved in Connecticut, Iowa, Michigan, New Hampshire, and New Jersey;

* states such as North Carolina, North Dakota, and Virginia, among others, have converted smaller regional programs into statewide POLST efforts; and

* states such as Nevada and South Carolina have formally begun POLST program development.

The Retirement Research Foundation has also funded POLST development in Illinois, which approved its official POLST document on March 14, 2013, and has already trained 350 health care professionals. Two pilots are under way, structured training materials have been developed, and implementation is taking off statewide. The Illinois work is housed at the University of Illinois Hospital and Health Sciences System, which received the Retirement Research Foundation funding to spearhead POLST implementation and training in the state.

Lessons Learned

Both foundations have learned tremendous lessons in their efforts to date:

* Quality of the conversation is paramount—the strength of the POLST form is only as good as the quality of the conversation on which it is based.

* There is no need to reinvent the wheel—with foundation support, the national POLST office can provide a wealth of materials and technical assistance to accelerate the implementation of POLST.

* Physician leadership is key—POLST is a set of physician orders and requires the active engagement of the medical community in all aspects of implementation.

* POLST dissemination is a “big tent” process—efforts to engage stakeholders’ participation must be skillfully navigated and genuinely welcomed.

* State and local action is necessary—community champions are critical to implementation at the local level, while work at the state level is needed to address policy and regulation changes.

* Focus on consistency—coordinated efforts are most successful if everyone uses a standard form, communication, and educational materials.

In Summary

POLST was created two decades ago in an effort to ensure that the wishes of those with advanced illness are followed. According to a national survey of POLST contacts provided by Oregon Health and Sciences University and conducted by the Retirement Research Foundation in April 2013, more than twenty states have active POLST paradigm programs.  And POLST programs are being developed in the rest of the states, with the exception of three.  The active programs are known by various names in different states, including POLST (California, Pennsylvania, Wisconsin); MOLST (Massachusetts, New York); MOST (Colorado, North Carolina); POST (Idaho, West Virginia); and LaPOST (Louisiana).  The POLST conversation and form can help patients with advanced or terminal illness get the care they want, but first, the paradigm must be incorporated into the fabric of patient care—a difficult, but doable task.

Related Health Affairs content:

“Living and Dying Well: Amy Berman Leads by Example,” letter by Irene Frye and Nancy Zweibel of the Retirement Research Foundation, Health Affairs, July 2012.

“Palliative Care: The Author Replies,” letter by Amy Berman of the John A. Hartford Foundation, Health Affairs, July 2012.