Person:

Balboni, Tracy

Background: Despite recognition of the centrality of professional board-certified chaplains (BCC) in palliative care, the discipline has little research to guide its practices. To help address this limitation, HealthCare Chaplaincy Network funded six proposals in which BCCs worked collaboratively with established researchers. Recognizing the importance of interdisciplinary collaboration in the development of a new field, this paper reports on an exploratory study of project members’ reflections over time on the benefits and challenges of conducting inter-disciplinary spiritual care research. Methods: Data collection occurred in two stages. Stage 1 entailed two independent, self-reflective focus groups, organized by professional discipline, mid-way through the site projects. Stage 2 entailed end-of-project site reports and a conference questionnaire. Results: Eighteen professionals participated in the group discussions. Stage 1: researchers perceived chaplains as eager workers passionately committed to their patients and to research, and identified challenges faced by chaplains in learning to conduct research. Chaplains perceived researchers as passionate about their work, were concerned research might uncover negative findings for their profession, and sensed they used a dissimilar paradigm from their research colleagues regarding the ‘ways of relating’ to knowledge and understanding. Stage 2: researchers and chaplains noted important changes they ascribed to the interdisciplinary collaboration that were classified into six domains of cultural and philosophical understanding: respect; learning; discovery; creativity; fruitful partnerships; and learning needs. Conclusions: Chaplains and researchers initially expressed divergent perspectives on the research collaborations. During the projects’ lifespans, these differences were acknowledged and addressed. Mutual appreciation for each discipline’s strengths and contributions to inter-professional dialogue emerged.

Context Talking about death can be difficult. Without evidence that end-of-life (EOL) discussions improve patient outcomes, physicians must balance their desire to honor patient autonomy against a concern that EOL discussions may inflict psychological harm.

Objective To determine whether EOL discussions with physicians are associated with fewer aggressive interventions.

Design, Setting, Participants A United States multi-site, prospective, longitudinal cohort study of advanced cancer patients and their informal caregivers (n=332 dyads), September 2002-February 2008. Patients were followed from enrollment to death a median of 4.4 months later. Bereaved caregivers’ psychiatric illness and quality of life (QoL) was assessed a median 6.5 months later.

Main Outcome Measures The primary outcome were aggressive medical care (e.g., ventilation, resuscitation) and hospice in the final week of life. Secondary outcomes included patients’ mental health and caregivers’ bereavement adjustment.

Results 123 of 332 (37.0%) patients reported EOL discussions before baseline. EOL discussions were not associated with higher rates of Major Depressive Disorder (8.3% vs. 5.8; AOR 1.33, 95% CI 0.54-3.32), or more “worry” (6.5 vs. 7.0; p=0.19)). After propensity-score weighted adjustment, EOL discussions were associated with lower rates of ventilation (1.6% vs. 11.0%; AOR 0.26, 95% CI 0.08-0.83), resuscitation (0.8% vs. 6.7%; AOR 0.16, 95% CI 0.03-0.80), ICU admission (4.1 vs. 12.4%; AOR 0.35, 95% CI 0.14-0.90), and earlier hospice enrollment (65.6% vs. 44.5%; AOR 1.58, 95% CI 1.04-2.63). In adjusted analyses, more aggressive medical care was associated with worse patient QoL (6.4 vs. 4.6; F=3.60, p=0.01) and higher risk for Major Depressive Disorder in bereaved caregivers (AOR 3.37, 95% CI 1.12-10.13), while longer hospice stays were associated with better patient QoL (5.6 vs. 6.9; F=3.70, p=0.01). Better patient QoL was associated with better caregiver QoL at follow-up (β=0.20; p=0.001).

Conclusion EOL discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient QoL and worse bereavement adjustment.

BACKGROUND: Research suggests that patients' end-of-life (EOL) care is determined primarily by the medical resources available, and not by patient preferences. The authors examined whether patients' desire for life-extending therapy was associated with their EOL care. METHODS: Coping with Cancer is a multisite, prospective, longitudinal study of patients with advanced cancer. Three hundred one patients were interviewed at baseline and followed until death, a median of 4.5 months later. Multivariate analyses examined the influence of patients' preferences and treatment site on whether patients received intensive care or hospice services in the final week of life. RESULTS: Eighty-three of 301 patients (27.6%) with advanced cancer wanted life-extending therapy at baseline. Patients who understood that their disease was terminal or who reported having EOL discussions with their physicians were less likely to want life-extending care compared with others (23.4% vs 42.6% and 20.7% vs 44.4%, respectively; P≤.003). Patients who were treated at Yale Cancer Center received more intensive care (odds ratio [OR], 3.14; 95% confidence interval [CI], 1.16-8.47) and less hospice services (OR, 0.52; 95% CI, 0.29-0.92) compared with patients who were treated at Parkland Hospital. However, in multivariate analyses that controlled for confounding influences, patients who preferred life-extending care were more likely to receive intensive care (adjusted OR [AOR], 2.91; 95% CI, 1.09-7.72) and were less likely to receive hospice services (AOR, 0.45; 95% CI, 0.26-0.78). Treatment site was not identified as a significant predictor of EOL care. CONCLUSIONS: The treatment preferences of patients with advanced cancer may play a more important role in determining the intensity of medical care received at the EOL than previously recognized. Future research is needed to determine the mechanisms by which patients' preferences for care and treatment site interact to influence EOL care.