Hospice is misunderstood. Although hospice in the US has existed for more than 40 years, many people and even some physicians do not fully understand hospice care. People misunderstand the payment mechanism, they fear that enrolling in hospice means institutionalizing their loved ones even though 80% of hospice care occurs at home, they fear that hospice means ?giving up? and/or they have concerns that hospice hastens death, despite evidence to the contrary. Consequently, hospice us underutilized ? less than 50% of older adults on Medicare enrolled in hospice prior to death. The ubiquitous misunderstandings and associated underutilization, interventions that promote patient and family-centered decision making related to hospice are needed. Patient decision aids (PtDAs) are an effective strategy to promote quality patient-centered care. A Cochrane review of 115 randomized trials of PtDAs demonstrated that they reduced decisional conflict, improved patient-provider communication, and increased patient involvement in medical decision making. However, none of these decision aids relate to hospice. A rigorous environmental scan of the current PtDAs available for hospice care and found only 7 PtDAs that mention hospice (often as part of another decision). All failed to adequately explain the nuances of hospice enrollment, eligibility and services provided. Further, our preliminary data demonstrate that hospice care is misunderstood by most people including some physicians. Hospice is often introduced as a last resort and is presented to patients and loved ones late in the disease trajectory preventing enrollees from benefiting from the spectrum of hospice services available. Hospice decision-making is a high stakes decision fraught with emotion and complexity. We developed a hospice specific PtDA to address the many barriers associated with hospice enrollment by clarifying the misunderstandings and validating the emotion and complexity of hospice decision making. Additionally, we hope our PtDA will facilitate end-of-life discussions earlier in disease trajectory. The goal of this project is to determine the feasibility and acceptability of a hospice decision aid among a diverse population of older adults at multiple stages of illness (Aim 1) and to determine the preliminary efficacy of the hospice decision aid on decision quality, hospice knowledge, and values-concordance (Aim 2). By testing the feasibility, acceptability, and preliminary efficacy of a novel hospice PtDA in a diverse population of older adults, we aim to simultaneously explore barriers to PtDA implementation in both an outpatient primary care and inpatient palliative care setting. We will gather sufficient pilot data to support a subsequent effectiveness/implementation trial and thus address the absence of quality of SDM interventions for end-of-life care decision-making.
Hospice is misunderstood and underutilized. No quality decision aids for patients and families considering hospice are currently available. This research project addresses this key gap in quality patient-centered care for people facing end-of-life decisions by testing the feasibility, acceptability and preliminary efficacy of a novel hospice patient decision aid developed by the study team.
