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VA End-of-Life Spiritual Care: A Qualitative Pilot Study
Bei-Hung Chang, ScD
VA Boston Healthcare System Jamaica Plain Campus, Jamaica Plain, MA
Funding Period: October 2010 - September 2011
Addressing spiritual issues in patient care is important, particularly among those with terminal illness and at the end of life. The VA recognizes the importance of providing spiritual care to terminally ill patients. The VHA Directive 2008-066 establishes Palliative Care Consult Teams with the role of providing comprehensive management of Veterans' various needs, including spiritual needs, at the end of life. Despite the focus on spiritual care in the VA, research on the spiritual needs and experiences of spiritual care of Veterans at the end of life and their families is limited.
This pilot study has two specific aims. Aim 1: To collect qualitative information regarding spiritual needs and experience of spiritual care provided in the VA to patients near the end of life and their families. Aim 2: To develop a spiritual care survey instrument for use in future research. The survey instrument developed using data collected in the pilot study will be refined in an Investigator Initiated Research (IIR) proposal designed to study the association between spiritual care/support and outcomes of end-of-life care.
We collected qualitative information regarding spiritual needs and experience of spiritual care provided in the VA Boston Healthcare System (VABHS) to patients near the end of life and their families from the perspectives of chaplains, Veterans and family members. Five Christian chaplains who provide care to patients at end of life were interviewed. We also interviewed 17 Veterans with a life expectancy of 12 months or less, as estimated by a clinician, and 9 family members of these Veterans. Each interview was recorded and transcribed. Analysis based on Grounded Theory was used to identify themes from each interview question. Although we derived the themes from patient and family interviews separately, we combined data from Veterans and family members due to the substantial overlap.
The interviews with chaplains indicated that the Palliative Care Consult Team in the VABHS appears to have a strong referral and communication system in which every palliative care patient was seen by a chaplain and the care plan was discussed with an interdisciplinary team. Chaplains reported providing a range of services to address religious, spiritual, emotional, family, and illness concerns. Chaplains are aware of Veterans' unique spiritual needs, including working through guilt for killing in war and needing forgiveness. Chaplains' ideas for improvement of spiritual care services include increasing time to provide care, providing bereavement care and support to families, and adding chaplains with different religious backgrounds. Chaplains reported that various aspects of their personal spirituality (e.g., broad religious background, faith in God, belief in the power of hope, respect and acceptance of patients' beliefs, being a Veteran, and life experience) influence the nature of their care.
Spiritual needs expressed by Veterans and their families included religious activities (e.g., religious rituals, prayers), divine intervention (e.g., have God answer prayers), reconnection to their religion, time with family, compassion/love, respect, and conversations about spiritual concerns. The spiritual care Veterans received matched their reported needs. Veterans and their families were generally satisfied with VA spiritual care with respect to the nature, style and content of the care and the characteristics of the care providers. They requested more frequent and longer visits from chaplains. Several Veterans indicated that their military experience profoundly impacted their spirituality both positively and negatively. However, not all of those expressing negative impacts voluntarily said that they need assistance with their spiritual trauma.
Based on the themes of spiritual needs derived from the interviews, we developed the draft Spiritual Care Scale for Veterans and Family, which has a Veteran version and a family version. The scale is to be self-administered by patients and family members using 5-point Likert scales to rate the degree (No Need to Great Need) to which they have a particular spiritual need (e.g., Prayers from others), the frequency (Never to Very Often) with which they receive care for this need and satisfaction with the care (Very Dissatisfied to Very Satisfied or No need). There are a total of 12 specific needs/cares for the Veteran version and 11 for the family version. One open-ended item is included in each version for respondents to list other needs/cares. The items in the Veteran and Family versions have only minor differences in wording to reflect that some of the family members' spiritual needs are related to the illness of the Veteran. For example, 'Help to cope with suffering from your illness' in the Veteran version is phrased as 'Help to cope with your suffering due to the illness of your loved one' in the family version. One extra item about the need to resolve guilt, anger, etc. from events in the military experience is included in the Veteran version. The scale also includes a question about general satisfaction with the spiritual care provided in the hospital and a question about areas for care improvement. Cognitive testing of the draft scale was conducted by asking patients and their families to fill it out and then describe their understanding of the questions. The scale was revised for clarity in wording and instructions after the testing.
This study provides insights into the nature of spirituality, spiritual needs and spiritual care experience in the VA from the perspectives of VA chaplains as well as Veterans at the end of life and their families. The results also indicate areas for improving the quality of care. Most importantly, the study developed a scale that once been validated can be used as a tool to assess the spiritual needs and spiritual care experience of Veterans and their families across the country. Subsequently, the validated scale can be used to study the impact of spiritual care on outcomes of end of life care. The validated scale can also be used to identify areas of spiritual care that can improve delivery of VA's mandated benefit of hospice and palliative care.
External Links for this Project
NIH ReporterGrant Number: I01HX000399-01
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DRA: Aging, Older Veterans' Health and Care
DRE: Treatment - Observational
MeSH Terms: none