Most dementia patients do not have advance care plans
“The Effect of a Comprehensive Dementia Care Management Program on End-of-Life Care,” published in the Journal of the American Geriatrics Society, was authored by Lee A. Jennings, MD, MSHS, Maurice Turner, BS, Chandra Keebler, MD, Carl H. Burton, MD, Tahmineh Romero, MS, MQM, Neil S. Wenger, MD, MPH, and David B. Reuben, MD.
As noted in the study’s abstract, dementia patients or their health care decision makers do not usually participate in advance care planning even though dementia is a life limiting disease. Similarly a minority of dementia patients receive other beneficial health care services such as palliative care services, even though advance care planning can help prevent unwanted aggressive interventions near the end of life.
Dementia patients were part of a special program
The study looked at participants of a single specific dementia care program at the The University of California, Los Angeles, Alzheimer’s and Dementia Care Program, a longitudinal, comprehensive nurse practitioner dementia comanagement program that launched in November 2011.
POLST was part of the comprehensive dementia care offered
Within the dementia care program, nurse practitioners partnered with primary care providers to provide comprehensive dementia care, including advance care planning. POLST, a recognized tool for helping elicit and document treatment preferences, was used in the program, and POLST forms were used for documenting the results of care planning conversations.
Study focused on last 6 months of life
57% of patients had completed POLST forms
All 322 patients enrolled in the study had a documented proxy decision maker. All but one (321 patients) had at least one goals-of-care conversation documented in the last 6 months of life (the median number was 3). Sixty-four percent had documented preferences in the EHR regarding CPR, medical interventions, or artificial nutrition; and 57% had completed POLST forms.
88% elected DNR; 12% CPR
Of those with POLST forms, 12% of the dementia patients (or their proxies) had indicated that they wanted CPR (full treatment); whereas 88% wanted no CPR (DNR) if they were to be found unresponsive.
Limited interventions vs. comfort care
Of the 170 patients who declined CPR, 48% (or 98) of them indicated that they wanted limited interventions, and 35% (or 72) of them wanted comfort-focused care on their POLST forms.
Majority did not want artificial nutrition
An overwhelming majority (74%) of patients or their proxies indicated a preference for no artificial nutrition (including feeding tubes) on their POLST forms.
Differences in outcome
More hospitalizations in those with POLST forms
POLST form completion was correlated with a higher incidence of acute care, including hospitalizations, emergency department visits, or and observational stay. More exactly, 51% of those with POLST forms vs. 39% without POLST forms experienced one of those types of acute hospitalization events within the last 6 months of life. Study authors were not sure why but thought that POLST forms could serve as a marker for more serious conditions, or that hospitalizations might have prompted the completion of POLST forms.
Higher hospice use correlated with POLST
The study participants were more likely to have enrolled in hospice if they had completed a POLST form: 78% vs. 64% of patients who had vs. had not completed POLST forms enrolled in hospice.
Location of death more likely to be at home with POLST
It is widely known that most people would prefer to die at home or under hospice care rather then in the hospital settings of intensive care units, emergency departments or skilled nursing facilities. In this study, those that had completed a POLST form were more likely to die at home. They were also more likely to have discussed hospice enrollment and died while in hospice care. Use of hospice among persons with dementia has historically been low.
Many barriers exist for dementia patients
There are many barriers to the use of hospice and palliative care services among those who have dementia, and unfortunately, advance care planning among dementia planning is uncommon. As a result, it is common for dementia patients to undergo hospitalizations and interventions in the last 6 months of life, which may not be beneficial or wanted. (A lack of advance care planning results in the default standard of care, which is to do as much as possible for a patient, including attempting cardiopulmonary resuscitation, artificial ventilation, and artificial nutrition.)
POLST appears beneficial, does not mean less care
The use of POLST as a tool to aid advance care planning appears to have been effective in this study, giving dementia patients treatments more aligned with their preferences. Study authors noted that the POLST completion does not necessarily indicate that less aggressive treatments are desired, and in fact, 65% of participants who had completed POLST forms wanted either selective or full treatment.
This study was not necessarily representative
Study authors also noted that this study population is not likely to be representative of dementia patients as a whole, since these were patients enrolled in a single program specific to comprehensive dementia care management using nurse practitioners in a community-dwelling population in an academic health system.
In this study, this comprehensive dementia care program was successful in engaging its patients in advance care planning, including POLST, resulting in high quality end-of-life care.
Jennings LA, Turner M, Keebler C, Burton CH, Romero T, Wenger NS, Reuben DB (2019). The Effect of a Comprehensive Dementia Care Management Program on End‐of‐Life Care. Journal of the American Geriatrics Society. First published: 24 January 2019 https://doi.org/10.1111/jgs.15769