Maureen Metzger

Meaning and practice of palliative care for hospitalized older adults with life limiting illnesses.

Objective. To illustrate distinctions and intersections of palliative care (PC) and end-of-life (EOL) services through examples from case-centered data of older adults cared for during a four-year ethnographic study of an acute care hospital palliative care consultation service. Methods. Qualitative narrative and thematic analysis. Results. Description of four practice paradigms (EOL transitions, prognostic uncertainty, discharge planning, and patient/family values and preferences) and identification of the underlying structure and communication patterns of PC consultation services common to them. Conclusions. Consistent with reports by other researchers, study data support the need to move beyond equating PC with hospice or EOL care and the notion that EOL is a well-demarcated period of time before death. If professional health care providers assume that PC services are limited to assisting with and helping patients and families prepare for dying, they miss opportunities to provide care considered important to older individuals confronting life-limiting illnesses.

Process and impact of an advance care planning intervention evaluated by bereaved surrogate decision-makers of dialysis patients.

Background: Few studies have examined the process and impact of an advance care planning intervention experienced by surrogate decision-makers of dialysis patients. Aim: To explore the perspectives of the bereaved surrogates of dialysis patients on the process and impact of an advance care planning intervention and to compare the perceived impacts of the intervention between African Americans and Whites. Design: Qualitative interviews and thematic analysis. Setting/participants: 24 bereaved surrogates of patients from outpatient dialysis centers were interviewed. Both patients and surrogates had been participants in a larger efficacy study and had received an advance care planning intervention, SPIRIT (Sharing Patient’s Illness Representations to Increase Trust). Results: Two themes related to the process of SPIRIT were as follows: (1) SPIRIT provided a welcome opportunity to think about and discuss topics that had been avoided and (2) SPIRIT helped patients and surrogates to share their feelings. Four themes of the SPIRIT’s impact were as follows: (1) SPIRIT was an eye-opening experience, acquiring knowledge and understanding of the patient’s illness and end-of-life care, (2) SPIRIT helped strengthen relationships between patients and surrogates, (3) SPIRIT helped surrogates feel prepared during the time leading up to end-of-life decision-making, and (4) SPIRIT helped surrogates have peace of mind during and after actual end-of-life decision-making. Themes related to SPIRIT’s impact on feeling prepared for end-of-life decision-making and the actual decision-making experience more frequently occurred in African Americans than in Whites. Conclusion: Our data may help explain the beneficial effects of SPIRIT on surrogates, but future trials should include data on control surrogates’ perspectives.

“That Don’t Work for Me”: Patients’ and Family Members’ Perspectives on Palliative Care and Hospice in Late-Stage Heart Failure

Experts in both heart failure and palliative care recommend collaboration between the two disciplines as a mechanism to improve late-stage heart failure care. However, referral rates of heart failure patients to palliative care services remain low. The purpose of this study was to describe the perspectives of heart failure patients and their family members regarding the barriers to palliative care in late-stage heart failure care. We used qualitative content analysis to identify themes from 40 semistructured interviews with 24 hospitalized late-stage heart failure patients and 16 designated family members. Results indicated that participants often refused or deferred palliative care services if they viewed hospice and palliative care as synonymous. They perceived that a set of hospice “rules” existed and that they were “deal breakers” for heart failure patients as they impeded the goals of aggressively managing troubling symptoms and/or providing comfort at end of life. The findings from this study underscore the need to examine the current hospice guidelines and for clinicians to view palliative care as a philosophy of care that allows for the unpredictable trajectory of heart failure.

A randomized controlled pilot trial to improve advance care planning for LVAD patients and their surrogates

OBJECTIVES To examine feasibility, acceptability and preliminary effects of an advance care planning (ACP) intervention, SPIRIT-HF, in LVAD patients and their surrogates. BACKGROUND LVADs may improve HF symptoms but they are not curative. Thus, ACP is needed to prepare patients and surrogates for end-of-life (EOL) decision-making. METHODS Bridge to transplant and destination therapy LVAD patient-surrogate dyads were randomized to either SPIRIT-HF or usual care. Percentages of eligible dyads who were enrolled and completed the study determined feasibility. Analysis of interviews with SPIRIT dyads determined acceptability. Group comparisons of dyad congruence, patients decisional conflict, and surrogates decision-making confidence determined preliminary effects. RESULTS Of 38 eligible dyads, 29 (76%) were enrolled, randomized, and completed the study. The 14 intervention dyads characterized SPIRIT-HF as beneficial. All dyads demonstrated improvement in outcomes. However, SPIRIT-HF dyads tended toward greater congruence on patient EOL treatment goals. CONCLUSIONS SPIRIT-HF is feasible and acceptable. Results will inform future trials.

Latent Classes of Prognosis Conversations in Palliative Care Decision-Making Consultations (FR424-B)

Result. Layers of multiple and often conditional prognoses were interwoven with patient values and goals to help convey to patients that their current illness path would not deliver them to their hoped for destination. Using the travel language grounded in the data, we found six main processes which were often combined: A) locating the patient on the path, B) looking ahead to path destinations, C) creating new destinations, D) changing paths and identifying crossroads, E) the experience (eg, speed and difficulty) of the path, and F) linking with patient values and goals. Participants contextualized the favorable or unfavorable direction of potential paths and destinations on the concordance with patient’s values and clinically feasible goals. Conclusion. Prognostic conversations established connections between patients’ clinical conditions, possible treatment options, how treatments might be experienced, and their likely outcomes. These processes allowed for nuanced discussions of patients’ goals in the context of clinical feasibility. Implications for Research, Policy, or Practice. These findings provide important glimpses into how palliative care clinicians, seriously ill patients, and families address prognosis in active pursuit patient-centered care.

Forecasting and Foretelling: Association Between Expected Survival Time and Characteristics of Prognosis Communication in Palliative Care Consultations (316-C)

Forecasting and Foretelling: Association Between Expected Survival Time and Characteristics of Prognosis Communication in Palliative Care Consultations (316-C) Robert Gramling, MD DSc, University of Rochester, Rochester, NY. Sally Norton, PhD RN FPCN, University of Rochester, Rochester, NY. Susan Ladwig, MPH, University of Rochester Medical Center, Rochester, NY. Maureen Metzger, RN MS, University of Rochester School of Nursing, Rochester, NY. Jane Deluca, PhD RN, University of Rochester, Rochester, NY. Ronald Epstein, MD, University of Rochester, Rochester, NY. Timothy Quill, MD, University of Rochester, Rochester, NY. Stewart Alexander, PhD, Duke University, Durham, NC. (All authors listed above for this session have disclosed no relevant financial relationships.)