Maryjo Prince-Paul

Improving the Quality of Spiritual Care as a Dimension of Palliative Care: The Report of the Consensus Conference

A Consensus Conference sponsored by the Archstone Foundation of Long Beach, California, was held February 17-18, 2009, in Pasadena, California. The Conference was based on the belief that spiritual care is a fundamental component of quality palliative care. This document and the conference recommendations it includes builds upon prior literature, the National Consensus Project Guidelines, and the National Quality Forum Preferred Practices and Conference proceedings.

Safety and benefit of discontinuing statin therapy in the setting of advanced, life-limiting illness: a randomized clinical trial.

IMPORTANCE For patients with limited prognosis, some medication risks may outweigh the benefits, particularly when benefits take years to accrue; statins are one example. Data are lacking regarding the risks and benefits of discontinuing statin therapy for patients with limited life expectancy. OBJECTIVE To evaluate the safety, clinical, and cost impact of discontinuing statin medications for patients in the palliative care setting. DESIGN, SETTING, AND PARTICIPANTS This was a multicenter, parallel-group, unblinded, pragmatic clinical trial. Eligibility included adults with an estimated life expectancy of between 1 month and 1 year, statin therapy for 3 months or more for primary or secondary prevention of cardiovascular disease, recent deterioration in functional status, and no recent active cardiovascular disease. Participants were randomized to either discontinue or continue statin therapy and were monitored monthly for up to 1 year. The study was conducted from June 3, 2011, to May 2, 2013. All analyses were performed using an intent-to-treat approach. INTERVENTIONS Statin therapy was withdrawn from eligible patients who were randomized to the discontinuation group. Patients in the continuation group continued to receive statins. MAIN OUTCOMES AND MEASURES Outcomes included death within 60 days (primary outcome), survival, cardiovascular events, performance status, quality of life (QOL), symptoms, number of nonstatin medications, and cost savings. RESULTS A total of 381 patients were enrolled; 189 of these were randomized to discontinue statins, and 192 were randomized to continue therapy. Mean (SD) age was 74.1 (11.6) years, 22.0% of the participants were cognitively impaired, and 48.8% had cancer. The proportion of participants in the discontinuation vs continuation groups who died within 60 days was not significantly different (23.8% vs 20.3%; 90% CI, -3.5% to 10.5%; P=.36) and did not meet the noninferiority end point. Total QOL was better for the group discontinuing statin therapy (mean McGill QOL score, 7.11 vs 6.85; P=.04). Few participants experienced cardiovascular events (13 in the discontinuation group vs 11 in the continuation group). Mean cost savings were

Relationships among Communicative Acts, Social Well-Being, and Spiritual Well-Being on the Quality of Life at the End of Life in Patients with Cancer Enrolled in Hospice

3.37 per day and

The Spiritual Struggle of Anger toward God: A Study with Family Members of Hospice Patients

716 per patient. CONCLUSIONS AND RELEVANCE This pragmatic trial suggests that stopping statin medication therapy is safe and may be associated with benefits including improved QOL, use of fewer nonstatin medications, and a corresponding reduction in medication costs. Thoughtful patient-provider discussions regarding the uncertain benefit and potential decrement in QOL associated with statin continuation in this setting are warranted. TRIAL REGISTRATION clinicaltrials.gov Identifier: NCT01415934.

Forgiveness, depressive symptoms, and communication at the end of life: a study with family members of hospice patients.

BACKGROUND The importance of communication in close, personal relationships has been well-documented. At the end of life, communication, social relationships, and spirituality seem to have greater importance. Some studies suggest that the quality of life at the end of life (QOLEOL) involves these components. OBJECTIVE The primary aim of this study was to investigate the communicative acts of love, gratitude, and forgiveness, and to explore the extent to which the communicative acts, social well-being, and spiritual well-being predict the overall QOLEOL when controlling for physical symptoms. DESIGN Cross-sectional, descriptive, correlational design. SETTING/SUBJECTS A convenience sample of all adult hospice patients, aged 35-80, with a cancer diagnosis, residing in their private home in a community setting, was recruited from a large, non-profit hospice program in the midwestern United States. MEASUREMENTS Patients completed the Functional Assessment of Cancer Therapy-General (FACT-G) social/family well-being subscale, the JAREL Spiritual Well-Being tool, an investigator-designed tool to measure communicative acts, and the global, single-item QOL indicator of the QUAL-E. RESULTS Strong, positive correlations among social and spiritual well-being, communicative acts, and QOLEOL were found (p < 0.01). Spiritual well-being most significantly predicted the QOLEOL, explaining 53.5% of explained variance in the QOLEOL. Although not statistically significant, the communicative acts of love and gratitude made a small contribution to the overall model. The communicative act of forgiveness did not perform well. CONCLUSIONS The knowledge gained through this investigation laid the groundwork for future studies in identifying the importance of explicitly assessing relationships and supporting patients and families in their communication. In order to learn more about this phenomenon and establish a foundation for intervention, confirmation is required regarding the connections between the spiritual and social domains, the relationships between the specific communicative acts and the QOLEOL, as well as establishment of valid measurement approaches.

La mejora de la calidad de los cuidados espirituales como una dimensión de los cuidados paliativos: el informe de la Conferencia de Consenso*

INTRODUCTION Anger toward God is a common form of spiritual struggle, one that people often experience when they see God as responsible for severe harm or suffering. The aim of this study was to assess the prevalence, correlates, and preferred coping strategies associated with anger toward God among family members of hospice patients. METHODS Teams from a large hospice in the midwestern United States distributed surveys, one per household, to family members of home-care patients. The survey assessed feelings toward God (anger/disappointment and positive feelings), depressive symptoms, religiosity, and perceived meaning. Participants also rated their interest in various strategies for coping with conflicts with God. RESULTS Surveys (n=134) indicated that 43% of participants reported anger/disappointment toward God, albeit usually at low levels of intensity. Anger toward God was associated with more depressive symptoms, lower religiosity, more difficulty finding meaning, and belief that the patient was experiencing greater pain. Prayer was the most highly endorsed strategy for managing conflicts with God. Other commonly endorsed strategies included reading sacred texts; handling the feelings on ones own; and conversations with friends, family, clergy, or hospice staff. Self-help resources and therapy were less popular options. CONCLUSION Anger toward God is an important spiritual issue among family members of hospice patients, one that is commonly experienced and linked with depressive symptoms. It is valuable for hospice staff to be informed about the issue of anger toward God, especially because many family members reported interest in talking with hospice team members about such conflicts.

Lack of Communication and Control: Experiences of Distance Caregivers of Parents With Advanced Cancer

INTRODUCTION Forgiveness has begun to receive empirical attention in end-of-life contexts, but primarily among patients. This study examined forgiveness issues and communication priorities among family members of hospice patients. METHODS Surveys were distributed to family members of home-care patients in a large not-for-profit hospice in the Great Lakes region of the United States. Family members wrote what they would like to say to patients before they died. They also rated the importance of several expressions (love, gratitude, giving and seeking forgiveness, saying farewell) and the extent to which they had already expressed these messages. Participants rated their depressive symptoms and the quantity of unresolved offenses committed by themselves and the patient. RESULTS Of 147 surveys returned by participants, 142 were usable. In comparison with forgiveness-related communications, expressions of love, gratitude, and farewell were more consistently rated important; yet many participants rated forgiveness (giving and seeking) as extremely important. If forgiveness was rated important but had not been fully expressed, participants reported more depressive symptoms (p<0.05). Also, unresolved offenses (by participants or patients) correlated positively with depressive symptoms (p<0.05). CONCLUSION Although not as commonly endorsed as expressions of love and gratitude, forgiveness-related communications are seen as extremely important by many family members of hospice patients. If family members see forgiveness (granting or seeking) as important but have not completed the process, these unresolved issues are associated with depressive symptoms. This study suggests that unresolved offenses and forgiveness issues warrant assessment and clinical attention within families receiving hospice care.

Personal Relationships and Communication Messages at the End of Life

Resumen Los dias 17 y 18 de febrero de 2009, en Pasadena (California, Estados Unidos), se celebro una Conferencia de Consenso patrocinada por la Fundacion Archstone de Long Beach (California). La conferencia se baso en el convencimiento de que el cuidado espiritual es un componente fundamental de los cuidados paliativos. Este documento, asi como las recomendaciones que incluye de la conferencia, se basa en documentacion previa, las directrices del Proyecto Nacional de Consenso, la Guia de Buenas Practicas del Foro Nacional de Calidad y en presentaciones de la propia conferencia.

Ethical conduct of palliative care research: Enhancing communication between investigators and institutional review boards

PURPOSE/OBJECTIVES To explore the new and complex phenomenon of distance caregiving in the advanced cancer population. RESEARCH APPROACH Qualitative. SETTING A large comprehensive cancer center in the midwestern region of the United States. PARTICIPANTS 14 distance caregivers of parents with advanced cancer. METHODOLOGIC APPROACH Patients with advanced lung, gastrointestinal, and gynecologic malignancies consented to have their distance caregiving adult children contacted to participate in the study. Responses to three open-ended questions guided the tape-recorded telephone interviews with the distance caregivers. Following transcription, content analysis with inductive coding was performed. FINDINGS Two major themes, communication and control, and five subthemes, benefits and burdens of distance caregiving, dealing with uncertainty, direct action through information seeking, protecting, and staying connected, emerged from the data. CONCLUSIONS Distance caregivers experience some of the same stressors that local caregivers of patients with cancer experience. In addition, they have unique psychosocial needs related to the burden of geographic distance. INTERPRETATION Distance caregivers could benefit from nursing interventions targeted at their unique needs. Innovative interventions using Web-based computer technology for improved communication, as well as supportive care interventions, may be helpful.

Moving Beyond the Anecdotal: Identifying the Need for Evidence-based Research in Hospice and Palliative Care

The diagnosis of advanced illness often brings with it an element of limited time. Being diagnosed with a life-limiting illness and facing death can evoke many painful emotions including anxiety, sadness, and uncertainty. However, it can also create the potential for profound growth and transformation. The end of life is a time-intensive crucible in which patients and family members have important things to express to one another. Embedded in this time are 2 elements of daily functioning: personal relationships and communication. Having conversations about the relationship and communicating love, gratitude, and/or forgiveness may have potential benefits for the dying person and those considered close and important.