Study Investigates the Challenge of Documenting End-of-Life Preferences

Detailed instructions reflecting the wishes of people facing serious advancing illness offer family and health care providers valuable guidance for end-of-life care.

But the basic process of collecting that information—from the design of standardized forms to procedures used to complete them—varies greatly from state to state and at individual health care settings. Those operational details can have a dramatic impact on the quality of information collected and the usefulness of the instructions themselves.

Kathrin Boerner, an associate professor of gerontology at UMass Boston’s McCormack Graduate School, used detailed interviews with team members at 2 Massachusetts nursing homes to study policy and practice associated with gathering information about end-of-life care wishes. Boerner, along with UMass Boston assistant sociology professor Jason Rodriquez and 2 other co-authors, recently published their findings in the journal Geriatric Nursing.

MAJOR FINDINGS

According to researchers, nursing home staff members reported confusion about some medical issues, traceable to the design of the standard form approved for use in Massachusetts. The study also highlighted problems created by nursing home procedures that specified when forms were expected to be filled out and the staff members responsible for their completion.

Most states have issued their own standardized forms for Medical Orders for Life-Sustaining Treatment (MOLST) or Physician’s Orders for Life-Sustaining Treatment (POLST). The functionality of those state forms varies, as does local emphasis on promoting their use. A statewide MOLST expansion effort was launched in Massachusetts in 2010.

“Our findings were limited to a small group in 1 state,” said Boerner, who is a fellow at the LeadingAge LTSS Center @UMass Boston. “But they highlight the need for researchers and policy makers across the country to gather more information about how the process actually works on the ground. The kinds of issues we identified in health care settings can make it harder to achieve the goal of improving end-of-life care.”

The research team led by Boerner focused on 2 nursing homes operated by the same agency. One home served long-term residents primarily, and had a high hospice referral rate. The other home had a relatively high percentage of post-acute care residents and a lower hospice referral rate.

Staff members at both nursing homes were generally supportive of MOLST forms and appreciated their value. But interviews identified specific procedural problems, including:

Timing: Staff members were required to complete a MOLST form at the time of admission. Residents were often not focused well enough at that time to make detailed medical decisions. The MOLST form also became one of many documents to be completed upon admission, receiving relatively brief attention by admitting nurses. The MOLST form is intended to be completed after a detailed conversation with a doctor.

Personnel: MOLST forms do not become active until they are signed by a doctor. But in many cases, the study found, an admitting nurse was the first and often the only staff person involved in filling out the form. Typically, doctors or social workers were included only if problems arose.

Excessive use: A MOLST form is not necessary or appropriate for all nursing home residents. Some long-term residents and most post-acute care patients do not need one. Policies that require completed MOLST forms for all residents, however well intentioned, can create confusion and waste resources.

Staff members interviewed for the study also said residents who struggled with the Massachusetts MOLST form most often found its terminology confusing or misguiding. Staff members also reported that some form categories seemed to conflict.

IMPLICATIONS

Boerner said Massachusetts and other states that experience similar issues with their MOLST or POLST forms might consider reviewing versions that offer greater clarity on key points, such as those used in California and Oregon.

“End-of-life planning tools such as POLST and MOLST can help document and honor a person’s care preferences,” said Boerner. “But the extent to which they can fulfill their potential depends critically on how they are designed and implemented.”

The study of MOLST implementation in nursing homes was supported by a seed grant from the Gerontology Institute at UMass Boston. The co-authors of the Geriatric Nursing article Emma Quach of the Center for Healthcare Organization and Implementation Research at the Bedford VA Medical Center in Bedford, Mass., and Meghan Hendricksen, a UMass Boston gerontology graduate research assistant.

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