Spotlight on Palliative Care
For Veterans facing a life-threatening illness, palliative care can provide relief from pain and suffering – and can offer additional benefits for family members who may be acting as a Veteran’s informal caregiver. Palliative care can improve an individual’s quality of life by:
- Addressing physical symptoms to make the Veteran more comfortable;
- integrating the psychological and spiritual aspects of patient care;
- offering a support system to help patients live as actively as possible;
- helping family members cope during the patient’s illness and, if necessary, with bereavement;
- affirming life and viewing dying as a normal process;
- using a team approach to address the needs of patients and their families, including bereavement counseling.
VA’s Office of Palliative Care supports Veterans early in the course of their illness, combining an array of services with treatment aimed at curing or controlling disease and improving quality of life. In VA, palliative care is provided by an interdisciplinary team that includes a medical provider, social worker, nurse, chaplain, mental health provider, and others. The entire care team’s focus is on identifying, respecting, and providing the necessary help for a Veteran to achieve his or her goals for care. Palliative care services may address physical symptoms, family coping, emotional or spiritual distress, or access to needed resources.
Part of VA’s goal in providing palliative care is to implement those practices that have good evidence for their effectiveness. Investigators in VA’s Health Services Research and Development Service (VA HSR&D) conduct research that supports the use of evidence-based, effective palliative care practices. The following studies represent just a few of the ongoing and completed investigations conducted by HSR&D researchers.
Understanding and assessing Veterans’ spiritual care needs is a central component of VA’s palliative care program. However, tools that systematically assess those needs—and that communicate those needs to other disciplines as well as link them with interventions and treatment recommendations—are lacking. A rigorously evaluated spiritual needs assessment tool should help ensure that VA’s Palliative Care Program meets Veterans’ spiritual needs at end of life by filling existing gaps. Such a tool would also be a valuable resource to the chaplaincy service, palliative care teams, and other clinicians caring for those with serious illness.
About the Study
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. In this project, investigators will develop a spiritual assessment tool for use by VA palliative care teams; conduct cognitive testing and validation of the tool; and will create a plan of care toolkit for use by palliative care team members. Investigators will recruit patients with advanced serious illnesses such as stage IV cancer, stage III or IV congestive heart failure, severe chronic obstructive pulmonary disorder, and end-stage renal disease. Investigators will then conduct focus groups with patients, families, and providers (nurses, physicians and social workers) from the Durham VA Medical Center—as well as with chaplains from the VA National Office—to gain feedback on tool content and use.
Karen E Steinhauser, PhD, is an investigator with the Durham Center of Innovation to Accelerate Discovery and Practice Transformation in Durham, NC.
Aggressive end-of-life (EOL) care is prevalent for individuals with advanced cancer, and multiple clinical trials show that patients with terminal cancer benefit from concurrent care—treatment for cancer in addition to palliative EOL care. VA provides hospice care for Veterans, allowing them a choice of receiving concurrent treatments such as radiation and chemotherapy. Results from this study indicate that Veterans with newly diagnosed end-stage lung cancer treated at VA medical centers (VAMCs) with the most expansion in hospice use had a significantly greater likelihood of receiving chemotherapy or radiation therapy after hospice enrollment—but a lower likelihood of having aggressive treatment or intensive care unit use. In addition, six-month costs for these Veterans were significantly lower. These results suggest that VA’s substantial investment in hospice care has had the dual effect of maintaining Veterans’ access to radiation and chemotherapy and reducing overall costs.
About the Study
This study sought to determine if increased availability of hospice for Veterans is associated with reduced aggressive treatments and medical care costs at the end of life. Investigators evaluated 13,085 Veterans newly diagnosed with stage IV non–small cell lung cancer (NSCLC) from 113 VAMCs between 2006 and 2012 (and who died between 1/1/2006 and 12/31/2012). The primary outcomes were receipt of aggressive treatments (two or more hospital admissions within 30 days, tube feeding, mechanical ventilation, intensive care unit admission) and total costs in the first six months after diagnosis.
Veterans with NSCLC treated in a VAMC in the top hospice quintile (79% hospice users), relative to the bottom quintile (55% hospice users), were more than twice as likely to have concurrent cancer treatment after initiating hospice care. Radiation therapy was more common than chemotherapy. The six-month costs were lower by an estimated $266 per day for the high-quintile group vs. the low-quintile group. There was no survival difference through 180 days post-diagnosis.
Vince Mor, PhD, is an investigator with HSR&D’s Center for Long Term Services and Supports in Providence, RI.
In addition to these recent articles, this study has resulted in numerous publications:
Mor V, Wagner TH, Levy C, et al. Association of Expanded VA Hospice Care With Aggressive Care and Cost for Veterans With Advanced Lung Cancer. JAMA Oncology. 2019 Jun 1;5(6):810-816.
Haverhals LM, Manheim CE, Mor V, et al. The Experience of Providing Hospice Care Concurrent with Cancer Treatment in the VA. Support Care Cancer. 2019
The Veteran population is growing in both age and diversity, and as such, a greater focus on care at end of life (EOL) is critical. Currently, there is a significant lack of evidence for effective, culturally-appropriate EOL services. In this ongoing study, investigators expect to identify specific patterns and organizational nursing characteristics around EOL care for minority Veterans, and to use those patterns to develop and implement appropriate, culturally-tailored EOL services.
About the Study
Using a variety of VA data sources, investigators are:
- examining EOL care patterns, including burdensome transitions and intensive EOL care, and are comparing racial/ethnic minority to non-minority Veteran populations;
- describing organizational nursing characteristics of VA Medical Centers where minority and non-minority Veterans are cared for at the EOL;
- identifying the extent to which observed racial/ethnic differences in family perceptions of EOL care quality are associated with EOL care patterns and modifiable aspects of nursing care organization, including nurse staffing, the nurse work environment, and racial/ethnic diversity of nursing staff; and
- exploring the perspectives of bereaved family members of racial/ethnic minority and non-minority Veterans on factors that influence quality of EOL care, including EOL care patterns and nursing care.
Included in the data sets are nearly all inpatient deaths in 142 VA Medical Centers nationally (n=~46,000) from FY11-FY15. Bereaved Family Survey (BFS) responses are available for nearly 60% of these decedents. The BFS has provided a rich source of qualitative data that has contributed to investigators’ understanding of culturally-relevant EOL measures. Investigators are still compiling data and expect to have final results in late 2021.
Ann Kutney Lee, PhD, RN, is an investigator with HSR&D’s Center for Health Equity Research and Promotion in Philadelphia, PA.
Despite guideline recommendations to integrate palliative care into curative care, the majority of patients do not receive palliative care services until all curative options are exhausted. Initiating early palliative care shortly after lung cancer diagnosis may provide an opportunity to improve lung cancer care quality in VA. In this study, investigators assessed a nurse-led palliative care intervention for Veterans newly diagnosed with lung cancer. This study is expected to demonstrate that nurses, serving as a liaison among palliative care, oncology and other subspecialty services, may reduce barriers to further integration of palliative care services. This also would further support VA’s ongoing goal of providing personalized, proactive, patient-driven healthcare and improving access and health outcomes.
About the Study
This randomized controlled trial was conducted at three VA facilities and sought to determine the efficacy of a nurse-led, telephone-based, palliative care intervention on improving the quality of care for Veterans with newly diagnosed lung cancer. Additionally, the study tested an innovative care delivery model to improve patients' access to palliative care. Investigators determined the effect of the study intervention on Veterans’ willingness to discuss treatment preferences with their clinician and family members. Study participants were randomly assigned to receive either the nurse-led palliative care intervention and usual care, or to receive only usual care. Key outcomes include quality of life, symptom burden, and patient satisfaction of care. Data collection is complete and the study is in the data analysis phase.
Principal Investigator: Lynn F. Reinke, PhD, ARNP, is an investigator with HSR&D’s Center of Innovation for Veteran-Centered and Value Driven Care, in Seattle, WA.
This study has resulted in the following publications:
- Sullivan DR, Chan B, Lapidus JA, et al. Association of Early Palliative Care Use with Survival and Place of Death Among Patients with Advanced Lung Cancer Receiving Care in the Veterans Health Administration. JAMA Oncology. 2019 Sep 19;5(12):1702–9.
- Reinke LF, Vig EK, Tartaglione EV, et al. Protocol and Pilot Testing: The Feasibility and Acceptability of a Nurse-led Telephone-based Palliative Care Intervention for Patients Newly Diagnosed with Lung Cancer. Contemporary Clinical Trials. 2018 Jan 1; 64:30-34.
- Reinke LF, Meier DE. Research Priorities in Subspecialty Palliative Care: Policy Initiatives. Journal of Palliative Medicine. 2017 Aug 1; 20(8):813-820.
- Aslakson RA, Reinke LF, Cox C, et al. Developing a Research Agenda for Integrating Palliative Care into Critical Care and Pulmonary Practice to Improve Patient and Family Outcomes. Journal of Palliative Medicine. 2017 Apr 1; 20(4):329-343.