The POLST conversation

Much of the impetus in the long-term care (LTC) industry over the past decade has been on person-centered care, especially on the care and supports needed for a person to age well. But what about dying well?

Misconceptions still abound on documenting end-of-life decision-making, including what the various forms authorize. A resident might have a do not resuscitate (DNR) form, an advance directive, a living will, a Physicians Order for Life-Sustaining Treatment (POLST) form or all of the above. Or, more likely, perhaps none of the above.

The stats are sobering:

• Most Americans lack knowledge about their end-of-life choices. [National Academies Dying in America report, 2014]
• Fewer than 10 percent of Americans say they’d prefer to die in a hospital setting. [National Academies Dying in America report, 2014]
• 82 percent of Californians say it’s important to put end-of-life wishes in writing, but only 23 percent have actually done so. [2012 California HealthCare Foundation survey]
• 90 percent of people say talking about end-of-life care with their families is important, but only 27 percent have done so. [2013 Conversation Project national survey]

While hospice providers are leading the way for industry best practices, the concept of person-centered dying has not always been embraced by other senior care settings, notes the National Academies of Sciences, Engineering and Medicine’s landmark 2014 report, Dying in America. “People nearing the end of life often experience multiple transitions between healthcare settings—including high rates of apparently preventable hospitalizations—which can fragment the delivery of care and create burdens for patients and families,” the report notes. “Not only do most Americans lack knowledge about end-of-life care choices, but the health community and other leaders also have not fully utilized strategies to make that knowledge available, meaningful and relevant across diverse population groups. Efforts are needed to normalize conversations about death and dying.”

The push for POLST adoption stems from the need for an actionable document to guide emergency personnel, nursing home staff and hospitalists in what to do—and what not to do—when a resident has a life-threatening crisis. By its nature, the POLST form represents an actual order for or against specific treatments and is far more detailed than a DNR form. As senior care providers and families strive to tailor treatments to the residents’ own wishes, the need for documenting and constantly updating those decisions becomes key.

So far, state-based POLST initiatives have varied greatly. Currently, 21 states have some sort of POLST program in the works, but only Oregon, California and West Virginia have a mature program in place. Oregon has been a leader since 1991, due greatly to the work of Susan Tolle, MD, Professor of Medicine, Division of General Internal Medicine and Geriatrics at the Oregon Health & Science University (OHSU) and the administrative director of Oregon’s POLST program. “The seeds of acceptance for POLST have grown fast,” Tolle says. “Even if your facility is not using a POLST form right now, it’s highly likely in the next two years it will be available in your region because that’s what’s happening across the country.”

Who needs a POLST?

The POLST form isn’t for everyone in senior care, especially at intake. Many older adults are living healthy lives or managing chronic conditions well into their 80s, and they understandably welcome conversations about proactive wellness and the active life more than discussions about death. Provider care teams wanting to begin the POLST conversation should focus first on residents who have debilitating or terminal conditions, including those with dementia and those with a degenerative condition that is likely to result in a life-depending visit to the hospital, especially if those visits could become recurrent.

“Most people nearing the end of life are not physically, mentally or cognitively able to make their own decisions about care,” notes the Dying in America report. “The majority of these patients will receive acute hospital care from physicians who do not know them. Therefore, advance care planning is essential to ensure that patients receive care reflecting their values, goals and preferences.” However, administrators should be aware that while skilled nursing facilities (SNFs) and hospices can encourage an advance directive or a POLST form, no resident can be forced to sign them.

The caregiver conversation

In early 2016, the Centers for Medicare and Medicaid Services (CMS) approved the reimbursement for physician conversations with patients about end-of-life care—a clear acknowledgement of the importance of the dialogue in advance of future treatment decisions.

Primary care visits are the prime place to start the POLST conversation, especially since family caregivers tend to accompany the patient to their doctor visits, Tolle says. Yet while physicians are the lead source of the end-of-life care conversations, in the nursing home setting, nurses and other caregivers often find themselves involved in fielding questions or explaining choices.

Regardless, end-of-life wishes need to be an ongoing conversation based on the progression of disease and the potential for recurrence of intervention. That includes frequent assessment of the patient’s physical, emotional, social and spiritual well-being,” the National Academies report stresses.

Caregivers and residents should talk specifically about hospital transfers and what should take place in the acute care setting. “Being in a hospital can be very confusing, and sometimes our machinery is frightening,” Tolle says. “Some people hate to be enclosed in an MRI scanner. But if we sedate them, they are more confused and more likely to fall. So, there are many things about the end of life where people would like to indicate a plan that is different from completing full treatment.”

Access to the POLST

Once a POLST form is signed, where is it stored? Can nursing home staff find it easily? What about the local hospital or emergency personnel? Capturing and storing the POLST in an electronic format may seem like the easy answer for data-sharing, but it’s not quite that simple, Tolle says.

“We were faxing paper forms in the beginning,” she recalls of the Oregon initiative. “But a coordinated, statewide approach was essential for continuity of care, so now we have a complex hybrid system that can accept paper or electronic data. For some settings, like adult foster care or assisted living, it could be a long time before they’re electronic.”

Yet, the key to a successful POLST program is timely access to the documentation when care choices become an issue. “You don’t really care if it’s paper or electronic. What matters is that an emergency department or anyone else can get to that POLST form when crucial decisions need to be made,” Tolle says. “If a patient has a cardiac arrest, the staff on call needs to know if that person wants to be transported or if he’s on hospice care.”

POLST: Not a one-and-done form

The POLST is not a “Yes or No” form. It’s a vibrant, deep set of choices meant to reflect the resident’s wishes at that time—and those wishes can change. The biggest mistake for SNFs is to view the POLST as a form that can be updated on a pre-determined calendar schedule, say, every six months, Tolle says.  Instead, caregivers should be trained to discuss and update the POLST documentation every time a resident experiences a change of condition.

Residents need to be educated frequently on their choices since the failure to limit a hospital’s orders will almost always result in life-saving measures, says Tolle, who also practices at OHSU’s hospital. “If you show up at the hospital and have no orders otherwise, we will treat you.”

Even in the hospice setting, many residents don’t have a POLST when they arrive, says Shaun Moss, RN, COO of Companion Hospice, headquartered in Costa Mesa, California, and a 20-year hospice nurse. “At first, maybe 15 to 20 percent of our patients had something in place when they arrived. Now it’s closer to 50 percent. But, how do you know that piece of paper represents how the patient feels now? We update the form at admission to make sure it’s reflective of their current wishes, and we keep updating it.”

The dementia factor

Few situations show the importance of POLST documentation than residents with a diagnosis of dementia. In time, they will lose much of their ability to express themselves in sentence-form, but many can continue to express their wishes in other ways, Tolle says.

Moss agrees, adding, “Of course it’s a very important process for those with dementia, but plenty of other conditions can interfere with communication and decision-making, too.”

When is the best time for residents to be introduced to the POLST conversation? It depends on the resident’s prognosis and rate of decline, but most caregivers would rather the conversation take place before hospice care comes into play. “I wish people would talk about end-of-life wishes sooner,” says Moss, who also has served as an assisted living director. “Those patients and families are missing the gift of talking about it before a crisis, when things are peaceful.”

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Additional resources for caregivers:

Dying in America: The landmark 2014 report from the National Academies of Sciences, Engineering and Medicine on end-of-life care in America.

"POLST: Doing it better," [VIDEO] Produced by the Oregon POLST Program as an educational tool for healthcare professionals.

"Understanding POLST," [VIDEO] Produced by the Oregon POLST Program as a guide for residents and families.

Factsheet on end-of-life care physician reimbursement: Produced by The Conversation Project.

Pamela Tabar

Pamela Tabar was editor-in-chief of I Advance Senior Care from 2013-2018. She has worked as a writer and editor for healthcare business media since 1998, including as News Editor of Healthcare Informatics. She has a master’s degree in journalism from Kent State University and a master’s degree in English from the University of York, England.