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ICEOL Research Symposium Abstracts
Defending God: Biblical Responses to the Problem of Evil
James Crenshaw, Ph.D., Duke University
Abstract:
Defending God: Biblical Responses to the Problem of Evil (Oxford University Press, 2005) is the project for which I received a grant, more specifically to explore the biblical understanding of suffering and death as part of the broader investigation of the problem of evil. This exploration entailed the analysis of three manifestations of evil: moral evil, natural evil, and religious evil. The first type operates primarily but not exclusively on the horizontal plane; the second and third types play out on the vertical plane. Each of these forms of evil achieves its sharpest focus in suffering, which, like prosperity, confronts individuals with a test. Unjust suffering raises serious questions about a deity who is thought to embody both justice and mercy. Yet another aspect of suffering, this one divine, generates a daring concept: God also suffers, and this as a direct by-product of choice-a decision to become involved in the human experiment. Suffering, then, while profoundly human, is rooted in divine mystery.
Biblical responses to the problem of evil cover a broad spectrum: from atheistic denial of God's existence to outright admission of ignorance due to finitude. Between these poles, at least eight other responses are advanced: the gods are to blame (polytheism); a demon is at work; God's power and knowledge are limited; God has a split personality; God is busy disciplining humans to build character; suffering and death are punishment for sin; suffering atones for sin; God will make things right in another life. Defending God examines all these responses in detail, concluding that the reification of a literary construct of deity has left troubling theological baggage. In the end, the problem itself needs to be questioned, for genuine service to God ought to be wholly disinterested, that is, gratuitous devotion asking nothing in return.
The Influence of Spirituality on Decision-Making in Patients with Advanced Cancer: A Study of Cultural Differences
Kimberly Johnson, M.D., Duke University Medical Center
Abstract:
Background: Compared to Caucasians, African Americans are less likely to use advance directives and more likely to request life-sustaining therapies at the end of life regardless of prognosis. These differences are often attributed to the importance of spirituality in African-American culture. However, how spiritual beliefs and practices influence the treatment decisions of African Americans and Caucasians facing life-threatening illness has not been well-described. A better understanding of cultural differences in the role of spirituality in medical decision-making will foster improved communication between patients and providers of all ethnic groups and reduce conflict in end-of-life care.
Aims: The specific aims of this study are to examine differences between African Americans and Caucasians with advanced malignancies in: (1) the frequency of organizational and nonorganizational religious activities; (2) intrinsic religious beliefs and experiences; (3) role of spirituality in problem-solving; (4) faith in healing practices and beliefs; (5) the influence of spiritual beliefs on treatment preferences.
Methods : This pilot is a quantitative (standardized measures) and qualitative (in-depth interview guided by open-ended questions) cross-sectional study of a sample of African Americans and Caucasians with Stage IV breast, lung, prostate, colorectal, or renal cell carcinoma recruited from the Duke Oncology Program. Data is collected via a telephone interview which includes three standardized measures of spirituality (Intrinsic Religiosity Scale, Short Form of the Religious Problem-Solving Scale, and Spiritual Faith in Healing Index) and an in-depth interview guide further exploring the importance of spirituality in medical decision-making.
Results To-date: Sixty-one subjects have completed the study, 53 Caucasians and 8 African Americans. The mean age of study participants is 62 (range 37 to 87) and 46 (75.4%) are female. The most common diagnoses are breast cancer (45%) and lung cancer (28%). The majority of both African-Americans and Caucasians in the sample characterize themselves as very/extremely religious (62.5% and 71.7%, respectively). Regarding spiritual faith in healing practices and beliefs, the vast majority of African Americans and Caucasians report the following: praying often for healing of their medical problems (87.5% and 73.6%, respectively); a definite belief in religious miracles (75% and 71.7%, respectively); a definite belief that God acts through doctors to cure illness (62.5% and 64.2%, respectively). When asked what is the most important factor in whether or not people get well from illness, the most common response in each group was God's will (37.5% of African Americans and 41.5% of Caucasians). The second most common response was a good doctor (25% of African Americans and 18.9% of Caucasians).
Summary: Both Caucasians and African Americans in this sample indicate strong spiritual faith in healing practices and beliefs. Analysis of qualitative results will further explore the infleunce of these practices and beliefs on medical decision-making.
Year 3 : The goal is to complete subject enrollment in the next 9 months. We plan to enroll 60 African Americans and 60 Caucasians in this pilot. A major challenge for this research has been the recruitment of an adequate number of African Americans. Of the 126 potentially eligible subjects contacted, 61 (48.4%) agreed to participate in the study. Only 23 (18.3%) of eligible subjects were African-American and only 8 of the 23 (34.8%) completed the study; 53 (51.5%) of eligible Caucasians completed the study. To increase the pool of eligible minority subjects, we have contacted additional providers in the Duke Oncology Program, including those working in outreach clinics, to assist with recruitment. If approved, we will also recruit subjects from Durham Regional Hospital 's community-based practices.
Development and Validation of the Parent Experience of Child Illness (PECI)
Melanie J. Bonner, Ph.D.; Kristina K. Hardy, Ph.D.; A. Bebe Guill, M.Div.; Colleen McLaughlin, M.S.N.; Holly Schweitzer, B..S; and Karen Carter, B.S.; Duke University Medical Center
Abstract:
Objective : To develop a measure of parent adjustment related to caring for a child with a chronic illness and to evaluate the reliability and validity of the measure with a group of parents of children with brain tumors.
Methods : One-hundred forty-nine parents of patients (age <1 year -17 years) diagnosed with a brain tumor were assessed using the 25-item self-report Parent Experience of Child Illness (PECI). Internal consistency, construct validity and factor structure were assessed.
Results : Exploratory factor analysis (EFA) yielded four theoretically coherent factors including: Guilt and Worry, Emotional Resources, Unresolved Sorrow and Anger, and Long-term Uncertainty. Internal reliability for the PECI scales ranged from .72 to .89, suggesting acceptable reliability. As evidence of construct validity, the PECI scales show significant, positive correlations with scales from established measures of parent adjustment.
Conclusion : The PECI augments the current literature by providing a brief measure of parents' subjective distress and perceived emotional resources, domains that are critical but understudied in children with chronic illness and their caregivers.
Key Words : parent adjustment; measure development; pediatric neuro-oncology
Measuring Quality Of Life At The End Of Life:
Validation Of The QUAL-E
Karen Steinhauser, Ph.D.; Veterans' Affairs and Duke University Medical Centers .
Abstract:
Objectives: To validate the QUAL-E, a new measure of quality of life at the end of life.
Design: Cross-sectional study to assess the instrument's psychometric properties, including the QUAL-E's associations with existing measures, evaluation of robustness across diverse sample groups, and stability over time.
Setting: VA and Duke University Medical Centers , Durham , North Carolina
Participants: 248 patients with stage IV cancer, congestive heart failure with ejection fraction £ 20%, chronic obstructive pulmonary disease with FEV 1 £ 1.0 liter, or dialysis-dependent end stage renal disease.
Main Outcome Measure: QUAL-E and five comparison measures: FACIT quality of life measure, Missoula-VITAS Quality of Life Index, FACIT-SP spirituality measures, Participatory Decision Making Scale (MOS), and Duke EPESE social support scales.
Results: QUAL-E analyses confirmed a 4-domain structure (25 items): life completion ( a =.80), symptoms ( a =.87), relationship with health care provider ( a =.71), and preparation for end of life ( a =.68). Convergent and discriminant validity were demonstrated with multiple comparison measures. Test-retest reliability assessment showed stable scores over a one-week period.
Conclusion: The QUAL-E, a brief measure of quality of life at the end of life, demonstrates acceptable validity and reliability, is easy to administer, performs consistently across diverse demographic and disease groups, and is acceptable to seriously ill patients. It is offered as a new instrument to assist in the evaluation of the quality and effectiveness of interventions targeting improved care at the end of life.
'Til Death Do Us Part: Informal Dementia Caregiving in the Last Three Months of Life
Elizabeth C. Clipp, R.N., Ph.D.; Linda K. George, Ph.D.; Donald Taylor, Ph.D.; Truls Otsbye, M.D., Ph.D.; Richard Landerman, Ph.D.; Karen Steinhauser, Ph.D.; Duke University
Abstract:
Background: Despite a vast literature on the consequences of caring informally for elderly family members with Alzheimer's disease or a related dementia (ADRD), little is known about the unique challenges of caregiver burden at end of life.
Objective: To identify informal caregiving demands distinctive to the final phase of life.
Method: Data are drawn from the National Longitudinal Caregiver Study (NLCS) a 4-year prospective study of 2300 family caregivers residing in communities throughout the contiguous US states. Care recipients are elderly male veterans, clinically diagnosed with Alzheimer's disease (AD) or vascular dementia (VAD). Caregivers whose care recipients died within three months of completing an annual survey ( End-of-Life Caregivers ; N=137) were compared with caregivers whose care recipients were alive throughout the entire four-year study ( Middle Stage Caregivers ; N=452).
Results: Bivariate analyses indicated that, compared to continuing caregivers, EOL caregivers assisted older, more physically impaired individuals and reported significantly more secondary help, greater task burden (i.e., physical care tasks), less leisure time, more depressive symptoms and lower life satisfaction. However, in multivariate models these group differences were reduced or eliminated when differences in patient physical functioning were controlled.
Discussion: Although caregivers at the end of life are more negatively affected than middle stage caregivers across most indicators of stress, burden and emotional health, these differences result from the marked physical care needs of the dying care recipient. Nursing interventions aimed to meet the physical care needs of patients dying with dementia should indirectly improve caregiver health and quality of life.
The Experiences of Volunteers Providing Caregiving Support
Marilyn Hartman, Ph.D.; James Brook; Ed Morill; University of North Carolina at Chapel Hill
Abstract:
This research is a collaborative project involving the Psychology Department at the University of North Carolina - Chapel Hill and Project Compassion. It focuses on the activities and experiences of community volunteers providing caregiving support to individuals and families facing serious illness, end of life, or disability. Our particular interest has been in Support Teams, groups of volunteers who work in teams to coordinate their caregiving support efforts, and the predicted advantages for being in a team as opposed to volunteering one on one. The research project includes two components. The goal of the first is to describe the life cycles of Support Teams and to understand the different ways in which they operate. The second component has several goals: (1) to develop self-report measures to assess the subjective experience of volunteer caregiving; (2) to examine the factors that predict positive and negative evaluations of the caregiving experience; and (3) to compare the experiences of Support Team members and one on one volunteers.
To achieve the first goal, we have followed the activities of Support Teams in Orange , Chatham , and Durham counties over a two year period, from September, 2003 through August, 2005. We recruited team members near the beginning of the formation of each team and then requested brief monthly updates about their activities, team meetings, and changes in team membership. Data collection is now complete, with approximately 150 Support Team members entered in the study. We have not yet begun data analysis. We hope to answer the following questions from this component of the research: (1) What are the characteristics of Support Team members? (2) What types of support do they provide and to whom? (3) How much support do they provide? (4) To what extent do the team members interact, and is there a relationship between the amount of interaction and the team's activity level or longevity? In each case we are as interested in understanding the range of possibilities as well as in identifying central tendencies.
The second component of the research involves an assessment of both objective and subjective characteristics of the volunteer experience and will include volunteers who work on Support Teams as well as those who work one on one, and to current volunteers as well as to individuals who no longer volunteer. We have developed two new questionnaires - the Experience of Volunteering Questionnaire, and the Experience of Being on a Support Team Questionnaire - and embedded them in a survey with additional questions about the volunteers' involvement in caregiving support and the infrastructure supporting the volunteer work. The first round of data collection with this new survey will begin in September and will be used to evaluate the factor structure and reliability of the new questionnaires, as well as to make an initial evaluation of their validity. Following revisions of the questionnaires based on these data, a second round of data collection will ensue. This one will be directed to the comparison of the two types of volunteers, with respect to satisfaction, level of involvement, and factors associated with each of these outcomes.
The Dying Caregiver Project
Judith C. Hays, Ph.D., R.N.; Duke University Medical Center .
Abstract:
The Dying Caregivers project narrated the experiences of 25 women who faced imminent death from metastatic breast cancer and continued to provide care to others, including seriously ill family members and young children. The project deliverable was a book manuscript that challenges the prevailing myth that the final stage of life is characterized by dependency and documents a vital agency that is characteristic of some dying individuals.
Despite large literatures on death and dying and on caregiving, virtually nothing has been reported in the professional or academic literature about the experiences of dying caregivers. In theory, dying well involves continuing to contribute to the well-being of others and planning for dependents following death. Yet such late life agency is often neither acknowledged nor supported. The Dying Caregiver project contributed an in-depth analysis of the extent and nature of caregiving among a group of patients with a progressive and fatal illness.
The book manuscript is organized around three trajectories of care: everyday self-care, everyday care of others, and "extraordinary caregiving." Everyday care of the self and others was continually provided by all of the respondents, whose caregiving efforts were remarkable for their variety and resilience in the face of a chronic, fatal illness. Over and above these everyday or "routine" efforts, extraordinary caregiving efforts were required of a substantial subset of respondents who had additional responsibility for the primary or shared care of chronically ill family members, minor children, or themselves under conditions of extreme isolation.
Respondents were 25 women aged 36-94 who were receiving treatment for advanced (Stage IV) breast cancer at Duke Hospital between 1993-1994. They included African-American and White women, primarily of middle and upper income. One quarter of the respondents had primary or shared responsibility for the care of frail or chronically ill adults, including patients with stroke, Parkinson's disease, mental retardation, alcoholism, and severe depressive symptoms. Twenty percent, both married and single mothers, had primary care of minor children, the youngest of whom was 9 years of age. Another 20% lived alone or with a boarder, and therefore had sole responsibility for their own self-care. The interviews lasted approximately an hour and a half, and were guided by a semi-structured interview schedule of questionnaire items and probes.
The book manuscript proposes two conclusions. First, the multiple trajectories of dying and caregiving create conflict and severely challenge one's ability to cope. The interaction of trajectories precipitates and exacerbates the very crises that caregivers are committed to preventing for their dependent family members. The dying trajectory also compresses the normal developmental trajectories of child-rearing, marriage, and elder care, and almost always assures their premature truncation. Second, the trajectories of dying and caregiving are complementary. Dying caregivers described both successful transitions out of the active caregiving role and expansion of caregiving activities into new spheres.
The book concludes by analyzing the extensive gaps in our knowledge base about dying caregivers and proposes programmatic changes for addressing these questions, with special emphasis on hospice care and nursing care.
Access to Nursing Home Hospice: Perspectives of Nursing Home and Hospice Administrators
Laura C. Hanson, M.D., M.P.H.; Sohini Sengupta, Ph.D.; Monica Slubicki, M.D.; University of North Carolina at Chapel Hill
Abstract:
Background and Objectives: Hospice improves the quality of end of life care in nursing homes, but serves less than 10% of dying residents. For residents to elect hospice, nursing homes must first contract for these services. We surveyed nursing home and hospice administrators to describe facilitators and barriers to hospice in nursing homes, and to test whether nursing home administrators' attitudes correlate with hospice use.
Methods: In a mailed survey, all nursing home and hospice administrators in North Carolina responded to items on hospice's effect on quality of care, and on facilitators and barriers to its use in nursing homes. Among nursing home administrators, bivariate analyses were used to test associations of attitudes with use of hospice.
Results: After 2 mailings, 241 (62%) nursing home administrators and 74 (85%) hospice administrators responded. Eighty-three percent of nursing homes had a hospice contract, with a median of 3 residents enrolled in the last 3 months. Nursing home administrators were less likely than hospice administrators to believe that hospice improves quality of care for pain, emotional and spiritual needs and bereavement support. Nursing home administrators were more likely to agree that " Nursing homes provide good care without using hospice for dying residents and their families ," (24% vs. 1%, p<0.001). Among nursing home administrators with a hospice contract (n= 180), those who agreed that hospice improves quality of care had higher rates of hospice use in their facilities.
Conclusion: Nursing home administrators' attitudes toward hospice may influence its availability for nursing home residents.
Defining a Good Death for Residents in Long-Term Care
Sheryl Zimmerman, Ph.D.; Jean Munn, M.S.W.; University of North Carolina at Chapel Hill
Abstract:
As more elderly are living in long-term care (LTC) settings, so too are they dying there. Annual mortality rates range from 14-22% in residential care/assisted living (RC/AL) facilities to 32-34% in nursing homes (NHs). Despite these significant and increasing proportions, end-of-life care in LTC is largely unexamined. This qualitative study uses task-based theory and builds on seminal work conducted by colleagues at Duke University , to define the domains of a good death for residents of NHs and RC/AL facilities. It is examining the importance of known domains as they relate to death in a LTC population (i.e., completion; relationship with the healthcare system; preparation; symptom impact; and social support), and identifying new domains specific to older persons in LTC. Information obtained from ten homogeneous focus groups, comprised of residents, staff, and family members of decedents, from four types of LTC residential settings ("small", "new-model", and "traditional" RC/AL facilities and NHs) will be used to develop these domains. The resulting data will complement an existing NIA-funded quantitative study that has collected data specific to actual deaths in 230 LTC facilities. Upon completion, findings will contribute valuable information toward development of instruments to measure a "good death" for those who die in these settings, as well as provide insight into the lived experience of decedents, family members and their staff caregivers.
When a Caregiver Can No Longer Provide Care:
The experience of transferring a terminally ill spouse to a nursing home Laura S. Porter, Ph.D.; Elizabeth Clipp, R.N., Ph.D.; Francis Keefe, Ph.D.; Karen Steinhauser, Ph.D.; Duke University Medical Center
Abstract:
The institutionalization of a terminally ill patient is a key transition point for a spousal caregiver. The decision alone represents a significant source of stress for most caregivers. Once the placement has occurred, the caregiving spouse often continues to provide emotional and psychosocial care in addition to facing a variety of new stressors. However, little attention has been paid to the challenges and dilemmas of these elderly caregivers . The ultimate goal of this research is to develop more effective ways of helping these caregivers manage stress during this difficult transition. The goal of this pilot study was to obtain information regarding stress, coping, and psychosocial adjustment among caregivers who have recently transferred their terminally ill spouses to a nursing home. Six caregivers completed questionnaires and semi-structured interviews. Five of the six participants were female, and all were Caucasian with a mean age of 78 years. The average length of their marriage was 39 years, and on average their spouse had been ill for 2.8 years. Caregivers reported an average of 4.5 illnesses themselves. Levels of primary stress associated with caregiving were high: caregivers reported spending an average of 21.2 hours per week at the nursing home, and the patient's functional status prior to admission was poor with most being unable to perform basic instrumental and physical activities of daily living. However, caregivers' reports of secondary stress associated with caregiving - operationalized as loss of self, feelings of inadequacy in caregiving, and loss of meaning - were low. Caregivers reported adequate levels of instrumental and subjective social support and adaptive coping. Their most frequently used coping strategies were acceptance, religion, emotional support, and instrumental support, and the least frequently used were behavioral disengagement, denial, substance abuse, and humor. They reported moderate levels of caregiver stress, anticipatory grief, and positive mood, and low levels of negative mood. Qualitative data collected via interview confirmed that the transition was a challenging one, and that spouses felt they received little attention during and after admission to the nursing home. Four of the six participants indicated that interventions addressing coping skills, information needs, and social support would be welcome, with no preference between group versus individual treatment.
There were considerable challenges in identifying these spouses for participation in research. The nursing home environment - including high staff turnover, understaffing, and lack of technology, along with the lack of focus on informal caregivers - posed a barrier to recruitment efforts, and efforts to recruit through hospitals and other organizations also met with limited success. However, findings from this pilot study are among the first to document the unique nature of the psychosocial stress associated with placing a terminally ill spouse into a skilled nursing facility. These data can be used to inform efforts of nursing homes, hospitals, and community organizations to meet the support needs of this population. In addition, the practical knowledge we aquired in the process of this study, along with the data, will inform our future research into the needs of spouses and other informal caregivers faced with the terminal illness of a loved one.
An International Multi-Site Randomized Controlled Trial of Oxygen vs Medical Air for the Palliative Management of Refractory Dyspnea in Patients with PaO 2 >55.
The O 2 Breathe Study.
Amy Abernethy, M.D., Duke University Medical Center and Flinders University; David Currow, M.P.H., F.R.A.C.P., Flinders University; James Tulsky, M.D., Duke University Medical Center; and Peter Frith, M.B., BS Adel, F.R.A.C.P., Flinders University; on behalf of the O2 Breathe Investigators
Abstract:
Management of breathlessness is a central challenge in the care of patients with life-limiting illness; the role of oxygen therapy in this setting remains controversial. Oxygen benefits people with chronic obstructive pulmonary disease (COPD) who have severe hypoxemia (PaO 2 =55mmHg). When PaO 2 >55mmHg and the funding criteria for long-term home oxygen are not met, palliative oxygen may be provided on a compassionate basis for people with intractable breathlessness in the setting of life-limiting illness. In these cases the goal is relief of the sensation of breathlessness and improvement in quality of life, yet we do not know how effective or burdensome such treatment is.
In response, we are conducting an international multi-center randomized double-blind controlled trial of oxygen vs medical air in the palliative care setting. The specific aims are to test the effectiveness of oxygen versus air in relieving the sensation of breathlessness and improving quality of life, to identify predictors of effect and burdens of the interventions, and to analyze costs. Eligible participants have intractable breathlessness at rest or with minimal exertion due to cancer, COPD or chronic heart disease but PaO 2 >55mmHg. A total of 240 participants are being recruited from eight sites in the USA , Australia and the UK . Oxygen or medical air will be delivered continuously from identical appearing concentrators through nasal cannulae for seven days; participants and investigators will be blinded to the gas provided. Outcome measures reflect the specific aims and the primary outcome is breathlessness on a 0-10 numerical rating scale.
Funding from the Duke Institute on Care at the End of Life provided critical support for feasibility testing, coordination of the international team, and initial start-up. Based upon this work one paper and two major grants have been submitted. The results of this study will significantly advance our knowledge of how to better care for this large group of distressed individuals. The results will also advance a long-standing international debate about the role of palliative oxygen for intractable dyspnea and its funding.