Christina M. Puchalski

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.

Spirituality and Religion in Patients with HIV/AIDS

BackgroundSpirituality and religion are often central issues for patients dealing with chronic illness. The purpose of this study is to characterize spirituality/religion in a large and diverse sample of patients with HIV/AIDS by using several measures of spirituality/religion, to examine associations between spirituality/religion and a number of demographic, clinical, and psychosocial variables, and to assess changes in levels of spirituality over 12 to 18 months.MethodsWe interviewed 450 patients from 4 clinical sites. Spirituality/religion was assessed by using 8 measures: the Functional Assessment of Chronic Illness Therapy—Spirituality-Expanded scale (meaning/peace, faith, and overall spirituality); the Duke Religion Index (organized and nonorganized religious activities, and intrinsic religiosity); and the Brief RCOPE scale (positive and negative religious coping). Covariates included demographics and clinical characteristics, HIV symptoms, health status, social support, self-esteem, optimism, and depressive symptoms.ResultsThe patients’ mean (SD) age was 43.3 (8.4) years; 387 (86%) were male; 246 (55%) were minorities; and 358 (80%) indicated a specific religious preference. Ninety-five (23%) participants attended religious services weekly, and 143 (32%) engaged in prayer or meditation at last daily. Three hundred thirty-nine (75%) patients said that their illness had strengthened their faith at least a little, and patients used positive religious coping strategies (e.g., sought God’s love and care) more often than negative ones (e.g., wondered whether God has abandoned me; P<.0001). In 8 multivariable models, factors associated with most facets of spirituality/religion included ethnic and racial minority status, greater optimism, less alcohol use, having a religion, greater self-esteem, greater life satisfaction, and lower overall functioning (R2=.16 to .74). Mean levels of spirituality did not change significantly over 12 to 18 months.ConclusionsMost patients with HIV/AIDS belonged to an organized religion and use their religion to cope with their illness. Patients with greater optimism, greater self-esteem, greater life satisfaction, minorities, and patients who drink less alcohol tend to be both more spiritual and religious. Spirituality levels remain stable over 12 to 18 months.

Patients who want their family and physician to make resuscitation decisions for them : Observations from SUPPORT and HELP

OBJECTIVE: To determine the extent to which older or seriously ill inpatients would prefer to have their family and physician make resuscitation decisions for them rather than having their own stated preferences followed if they were unable to decide themselves.

Evaluation of the FICA Tool for Spiritual Assessment

CONTEXT The National Consensus Project for Quality Palliative Care includes spiritual care as one of the eight clinical practice domains. There are very few standardized spirituality history tools. OBJECTIVES The purpose of this pilot study was to test the feasibility for the Faith, Importance and Influence, Community, and Address (FICA) Spiritual History Tool in clinical settings. Correlates between the FICA qualitative data and quality of life (QOL) quantitative data also were examined to provide additional insight into spiritual concerns. METHODS The framework of the FICA tool includes Faith or belief, Importance of spirituality, individuals spiritual Community, and interventions to Address spiritual needs. Patients with solid tumors were recruited from ambulatory clinics of a comprehensive cancer center. Items assessing aspects of spirituality within the Functional Assessment of Cancer Therapy QOL tools were used, and all patients were assessed using the FICA. The sample (n=76) had a mean age of 57, and almost half were of diverse religions. RESULTS Most patients rated faith or belief as very important in their lives (mean 8.4; 0-10 scale). FICA quantitative ratings and qualitative comments were closely correlated with items from the QOL tools assessing aspects of spirituality. CONCLUSION Findings suggest that the FICA tool is a feasible tool for clinical assessment of spirituality. Addressing spiritual needs and concerns in clinical settings is critical in enhancing QOL. Additional use and evaluation by clinicians of the FICA Spiritual Assessment Tool in usual practice settings are needed.

Improving the spiritual dimension of whole person care: Reaching national and international consensus

Two conferences, Creating More Compassionate Systems of Care (November 2012) and On Improving the Spiritual Dimension of Whole Person Care: The Transformational Role of Compassion, Love and Forgiveness in Health Care (January 2013), were convened with the goals of reaching consensus on approaches to the integration of spirituality into health care structures at all levels and development of strategies to create more compassionate systems of care. The conferences built on the work of a 2009 consensus conference, Improving the Quality of Spiritual Care as a Dimension of Palliative Care. Conference organizers in 2012 and 2013 aimed to identify consensus-derived care standards and recommendations for implementing them by building and expanding on the 2009 conference model of interprofessional spiritual care and its recommendations for palliative care. The 2013 conference built on the 2012 conference to produce a set of standards and recommended strategies for integrating spiritual care across the entire health care continuum, not just palliative care. Deliberations were based on evidence that spiritual care is a fundamental component of high-quality compassionate health care and it is most effective when it is recognized and reflected in the attitudes and actions of both patients and health care providers.

The role of spirituality in health care

The technological advances of the past century tended to change the focus of medicine from a caring, serviceoriented model to a technological, cure-oriented model. Technology has led to phenomenal advances in medicine and has given us the ability to prolong life. However, in the past few decades physicians have attempted to balance their care by reclaiming medicine’s more spiritual roots, recognizing that until modern times spirituality was often linked with health care. Spiritual or compassionate care involves serving the whole person—the physical, emotional, social, and spiritual. Such service is inherently a spiritual activity. Rachel Naomi Remen, MD, who has developed Commonweal retreats for people with cancer, described it well: Helping, fixing, and serving represent three different ways of seeing life. When you help, you see life as weak. When you fix, you see life as broken. When you serve, you see life as whole. Fixing and helping may be the work of the ego, and service the work of the soul (1). Serving patients may involve spending time with them, holding their hands, and talking about what is important to them. Patients value these experiences with their physicians. In this article, I discuss elements of compassionate care, review some research on the role of spirituality in health care, highlight advantages of understanding patients’ spirituality, explain ways to practice spiritual care, and summarize some national efforts to incorporate spirituality into medicine.

Spirituality and End-of-Life Care: A Time for Listening and Caring

DYING IS A NORMAL PART of life. In today’s society, however, dying is still treated as an illness. All too often people die in hospitals or nursing homes, alone and burdened with unnecessary treatment; the same treatment they would have refused if they had the chance to talk about their choices with their physicians long before the deathbed scene. Dying people are not listened to—their wishes, their dreams, their fears go unheeded. They want to share those with us. At the turn of the century, Americans’ life expectancy was 50 years. Now 73% of deaths are among people at least 65 years old, and 24% of deaths are among those at least 85 years old according to an end-of-life committee of the Institute of Medicine.1 The causes of death in 1900 were influenza, tuberculosis, diphtheria, heart disease, cancer, and stroke. Today, heart disease is the number one cause of death followed by cancer and stroke. Modern medicine has granted more people an old age but it also slows the process of dying. The end of life can last several years. As baby boomers and their parents age, problems in end-of-life care are increasingly documented from inadequately treated pain to unwanted or futile therapies. The Institute of Medicine committee reported on a study that showed that 40% of family members of people who died reported their loved ones being in severe pain. 10%–50% of various patient populations receive care that violates their preferences, often in the form of costly emergency department visits or intensive care unit (ICU) stays.1 People often die alone and in pain in hospitals or ICUs. However, 90% of people surveyed said they would prefer to be cared for at home if they were terminally ill with 6 months or less to live. In the early 1900s most people died at home. But in 1992, 57% of deaths were in hospitals and 37% of deaths were in nursing homes and other residencies. Hospices have provided excellent care, but hospice referrals have not been the perfect solution. To receive Medicare benefits a patient must be expected to die within 6 months, and the patient must forego curative therapies. Patients and insurance companies want physicians to make prognosis about time of death. Patients often want the physicians to tell them when they will die, and often, the physicians also want the prognostic certainty before giving up on therapies. Yet, numerous studies have shown that such estimates are often wrong.1 How can we meet the patients’ needs, so that they can die at home and avoid treatments that violate their preferences? How can we, as health care providers and as a society, guarantee people a peaceful, meaningful death? There are no easy answers, but it is clear that spirituality is a very important part of the solution.

Religion, spirituality, and depressive symptoms in patients with HIV/AIDS

BackgroundDepression has been linked to immune function and mortality in patients with chronic illnesses. Factors such as poorer spiritual well-being has been linked to increased risk for depression and other mood disorders in patients with HIV.ObjectiveWe sought to determine how specific dimensions of religion, spirituality, and other factors relate to depressive symptoms in a contemporary, multi-center cohort of patients with HIV/AIDS.DesignPatients were recruited from 4 medical centers in 3 cities in 2002 to 2003, and trained interviewers administered the questionnaires. The level of depressive symptoms was measured with the 10-item Center for Epidemiologic Studies Depression (CESD-10) Scale. Independent variables included socio-demographics, clinical information, 8 dimensions of health status and concerns, symptoms, social support, risk attitudes, self-esteem, spirituality, religious affiliation, religiosity, and religious coping. We examined the bivariate and multivariable associations of religiosity, spirituality, and depressive symptoms.Measurements and main resultsWe collected data from 450 subjects. Their mean (SD) age was 43.8 (8.4) years; 387 (86.0%) were male; 204 (45.3%) were white; and their mean CD4 count was 420.5 (301.0). Two hundred forty-one (53.6%) fit the criteria for significant depressive symptoms (CESD-10 score >-10). In multivariable analyses, having greater health worries, less comfort with how one contracted HIV, more HIV-related symptoms, less social support, and lower spiritual well-being was assocuated with significant depressive symptoms (P<0.5).ConclusionA majority of patients with HIV reported having significant depressive symptoms. Poorer health status and perceptions, less social support, and lower spiritual well-being were related to significant depressive symptoms, while personal regligiosity and having a religious affiliation was not associated when controlling for other factors. Helping to address the spiritual needs of patients in the medical or community setting may be one way to decrease depressive symptoms in patients with HIV/AIDS.

Spirituality and health: the development of a field.

Spirituality has played a role in health care for centuries, but by the early 20th century, technological advances in diagnosis and treatment overshadowed the more human element of medicine. In response, a core group of medical academics and practitioners launched a movement to reclaim medicine’s spiritual roots, defining spirituality broadly as a search for meaning, purpose, and connectedness. This commentary describes the history of the field of spirituality and health—its origins, its furtherance through the Medical School Objectives Project, and its ultimate incorporation into the curricula of over 75% of U.S. medical schools. The diverse efforts in developing this field within medical education and in national and international organizations created a need for a cohesive framework. The National Competencies in Spirituality and Health—created at a consensus conference of faculty from seven medical schools and reported here for the first time—answered that need. Also reported are some of the first applications of these competencies—competency-linked curricular projects. This issue of Academic Medicine features articles from three of the participating medical schools as well as one from an additional medical school. This commentary also describes another competency application: the George Washington Institute of Spirituality and Health–Templeton Reflection Rounds initiative, known as G-TRR, which has provided clerkship students with the opportunity, through reflection on their patient encounters, to develop their own inner resources to address the suffering of others. This commentary concludes with the authors’ proposals for future directions for the field.

Beliefs of primary care residents regarding spirituality and religion in clinical encounters with patients: a study at a midwestern U.S. teaching institution.

Purpose To assess primary care residents’ beliefs regarding the role of spirituality and religion in the clinical encounter with patients. Method In 2003, at a major midwestern U.S. teaching institution, 247 primary care residents were administered a questionnaire adapted from that used in the Religion and Spirituality in the Medical Encounter Study to assess whether primary care house officers feel they should discuss religious and spiritual issues with patients, pray with patients, or both, and whether personal characteristics of residents, including their own spiritual well-being, religiosity, and tendency to use spiritual and religious coping mechanisms, are related to their sentiments regarding spirituality and religion in health care. Simple descriptive, univariate, and two types of multivariable analyses were performed. Results Data were collected from 227 residents (92%) in internal medicine, pediatrics, internal medicine/pediatrics, and family medicine. One hundred four (46%) respondents felt that they should play a role in patients’ spiritual or religious lives. In multivariable analysis, this sentiment was associated with greater frequency of participating in organized religious activity (odds ratio [OR] 1.55, 95% confidence interval [CI] 1.20-1.99), a higher level of personal spirituality (OR 1.05, 95% CI 1.02-1.08), and older resident age (OR 1.11, 95% CI 1.02-1.21; C-statistic 0.76). In general, advocating spiritual and religious involvement was most often associated with high personal levels of spiritual and religious coping and with the family medicine training program. Residents were more likely to agree with incorporating spirituality and religion into patient encounters as the gravity of the patients condition increased (p < .0001). Conclusions Approximately half of primary care residents felt that they should play a role in their patients’ spiritual or religious lives. Residents’ agreement with specific spiritual and religious activities depended on both the patients condition and the residents personal characteristics.