Patients with life-limiting illness confront physical, emotional and spiritual suffering. While efforts to assess and improve pain and symptom management are essential to quality palliative care, both clinical experience and a significant body of research demonstrate that addressing spiritual needs also is central to reducing patient suffering, improving quality of life, and informing care decisions. However, there exists no gold standard, empirically developed and rigorously validated tool to assess veterans spiritual care needs and thus translate preferences for care providers.
The aims of this project are: (1) development of a spiritual assessment tool for palliative care with serious illness, (2) Cognitive testing and validation of the tool and (3) Development of a toolkit to team members and informing a plan of care.
This is a mixed methods tool development and validation study. Qualitative methods of focus groups, in-depth interviews and cognitive testing will be used for tool development. We will conduct focus groups with patients, families, and providers (chaplains, nurses, physicians and social workers) to gain feedback on tool content and use. Chaplain discussions also will focus on tool format, feasibility and acceptability among chaplains. We will recruit patients with advanced serious illnesses such as stage IV cancer, stage III or IV CHF and severe COPD, and ESRD, bereaved family members of veterans, and healthcare professionals, from the Durham VA and chaplains also from the National Office. Subsequently, we will develop the instrument and cognitively test its consistency, acceptability, and need for refinement. Following refinements, traditional psychometric testing will be used to validate the tool, in a large population of veterans (n=250), as described above, to establish reliability and validity. Following validation, qualitative methods will be used to develop guidelines for tool use. The overall approach is patient-centered, and includes key involvement of chaplains and other relevant stakeholders including patients with life limiting illness, family members, chaplains, and health care team members input and preferences.
We are in the process of coding the transcriptions of focus groups and qualitative interviews.
Assessment of spiritual care needs is central to goals and mandates of palliative care, the VA and Joint Commission on Accreditation of Healthcare Organizations. Spiritual and existential beliefs, for those religious and not, are associated with improved quality of life, reduced suffering, and preferences for care. Yet, tools that systematically assess need, link those needs with intervention, treatment recommendations, and outcomes, and communicate needs with other disciplines, are lacking. This is an empirically designed and rigorously evaluated spiritual assessment tool would provide clinicians and administrators with a means to meet these goals. A tool developed specifically for veterans with serious illness would include the unique existential needs that arise as end of life nears as well as those more common among veterans, such as moral injury. Assessing spiritual needs and resources of veterans during advanced illness facilitates alignment of treatment choices with individual values and preference and enhance care coordination, and is consistent with the priorities of the VA Blueprint for Excellence. A fully validated spiritual assessment tool for seriously ill veterans would be a resource to the chaplaincy service, palliative care teams, and other clinicians caring for those with serious illness.
External Links for this Project
Grant Number: I01HX002037-01A1
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TRL - Applied/Translational
Attitudes/Beliefs, Cancer, Cardiovascular Disease, End-of-Life, Patient Preferences, Quality of Life