Concordance between Goals of Care and Treatment Decisions for Persons with Dementia

Abstract

Most families chose comfort as the primary GOC. Further research is needed to translate this preference into comfort-focused treatment plans for late-stage dementia. Clinicaltrials.gov : NCT01565642 (3/26/12).

Concordance Between Proxy Level of Care Preference and Advance Directives Among Nursing Home Residents With Advanced Dementia: A Cluster Randomized Clinical Trial

“…Our results confirm prior research describing advance directives among NH residents with advanced dementia, 16,35,36 but further that work by examining the pattern of those directives in the context of care preferences as stated by their proxies. As in earlier research, we found that most residents had DNR orders, whereas directives to withhold hospital transfers, tube-feeding, and IV hydration were less common, and directives to withhold antibiotics were particularly low.…”

“…As in earlier research, we found that most residents had DNR orders, whereas directives to withhold hospital transfers, tube-feeding, and IV hydration were less common, and directives to withhold antibiotics were particularly low. 16,35,36 Advance directive ascertainment requires two conditions; first, clinicians must discuss a particular treatment with proxies, and second, proxies must make a deliberate decision to withhold that treatment. Not surprisingly, DNR was the most prevalent directive, as it is both widely addressed in ACP discussions, 25 and a relatively straightforward decision as resuscitation is very aggressive and not beneficial for residents with life-limiting disease.…”

“…Despite its importance, “care consistent with goals” is challenging to define and operationalize as an outcome. 11–16 As a key first step, goals of care must be defined and captured, which in and of itself, may be difficult for individual patients to conceptualize and articulate. While there is no set approach, a common rubric categorizes three levels or goals of care; life-prolonging care, basic or intermediate care, and comfort care.…”

“…With these caveats, once a goal of care is articulated, concordance with that goal must be operationalized in terms of treatment decisions and actual care received; an exercise that is not straightforward and largely subjective. 11–16 Little evidence is available to clearly state whether or not specific treatments will achieve a desired goal (e.g., do antibiotics prolong life in advanced illness?). Furthermore, individual patients with varying conditions may differ in terms of how they categorize an uncomfortable intervention.…”

Implementing the theory-based advance care planning ACP+ programme for nursing homes: study protocol for a cluster randomised controlled trial and process evaluation

“…Because improving staff level outcomes is a necessary precondition before being able to change outcomes for residents and families, we feel this is an important first step in the effectiveness assessment of ACP+. Follow-up funding will enable us to also assessretrospectivelywhether the ACP+ programme had an effect on care concordance at the end of life, based on chart reviews and family interviews of nursing home residents who died during trial period [41,42], and we will include residents and their families from intervention nursing homes in the process evaluation to evaluate their experiences. We do stipulate that this rationale underlying the study's aim, generates an additional study limitation, given that changes in staff knowledge/self-efficacy may lead to changes in both behaviour as well resident outcomes.…”