Health Services Research & Development

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Spotlight: Palliative and Hospice Care Research

November 2014


As the nation's largest integrated healthcare system, VA provides care to more than 8 million 1 Veterans. For Veterans enrolled in VA care faced with serious, long-term, or life-ending illness, VA offers specialized support services in the form of palliative care and hospice care. 2

Palliative and hospice care share components that sometimes overlap, but important distinctions exist: Hospice care is provided to those at the end of life and always incorporates palliative care. 3 However, palliative care is not limited to those with a terminal illness; regardless of diagnosis, the goal of palliative care is to provide patients with relief from the symptoms, pain, and stress of a serious illness. Palliative care services are often simultaneously provided with, or integrated into treatment and may be requested at any time; hospice care is usually provided during the last six months of life. Components of palliative care 4 include:

  • Respite care. Often, family members act as primary caregivers for those with long-term illness. Respite care services provide short-term coverage—sometimes as briefly as an hour—for primary caregivers.
  • Comfort care. Some treatments for serious illness have significant side effects such as nausea, difficulty breathing, or increased pain levels. Comfort care focuses on alleviating these symptoms
  • Emotional support. Coping with a serious illness can take an emotional, as well as physical toll. Resources such as individual or group therapy to help cope with stress may be part of palliative care services.
  • Care coordination. For individuals with complex conditions, coordinating care over multiple facilities and providers can be challenging. Care coordination is the organization of patient care activities between providers, the patient, and family involved in a patient's care to facilitate the appropriate delivery of health care services. Care coordination can help families keep track of everything from medication to treatment appointments.
  • Informed decision-making. Palliative care supports patients by providing them with an open discussion about treatment options.

For Veterans enrolled in VA care, the Geriatrics and Extended Care Service (GECS) administer both hospice and palliative care, and those services follow generally accepted definitions: Hospice is defined by VA as comfort-based care for Veterans who have a terminal condition with six months or less to live. Palliative care is defined as a form of treatment that emphasizes comfort care, but does not require the Veteran have a terminal condition. 5

To support and inform VA's commitment to Veterans in need of palliative and hospice care, investigators with VA's Health Services Research and Development Service (HSR&D) conduct a variety of studies looking at cost, quality, and access to these services. The following HSR&D-funded studies and citations are just a few of the ongoing and recently completed investigations focused on palliative and hospice care.

  • Veterans' and Families' Priorities for Palliative Home Care Services. Hospice is not an option for those who are receiving life-prolonging treatment or who have a prognosis greater than six months. For these patients and their families, palliative care must be provided outside of a hospice environment. Therefore, alternatives to hospice that meet the palliative care needs of Veterans living at home with serious illness, without the eligibility restrictions that hospice imposes—are important for VA.

    Using telephone interviews with 453 Veterans with congestive heart failure and chronic obstructive pulmonary disease and 131 family members at the Philadelphia and Greater Los Angeles VAMCs, investigators sought to identify aspects of palliative care that were most important to Veterans and their families. Investigators sought to determine the relative values that Veterans and their family members placed on different services and priorities for care. Results showed that among Veterans the highest priority service was transportation, followed by: a meal program, family care, and having a nurse available up to five times a week. Additional priorities included: having a care coordinator, peer support, a counselor, reimbursement for home health support, respite care, availability of a chaplain, and having someone hired from a health care agency for home health support. For family members, transportation was also the highest priority, followed by nurse availability, family care, having a care coordinator, and a meal program. Additional priorities included, having peer support, a counselor, and access to a chaplain, among others.

    Results from this study may help VA design and deliver Veteran-centered programs that provide the specific services considered most important by Veterans seeking palliative care, particularly for those with either serious, non-cancer illnesses or those who may not be eligible for traditional hospice services.

    Publications resulting from this study include a description of activity limitation stages among Medicare beneficiaries and an assessment of the need for regular quality review of palliative care services.

  • Outlook: An Intervention to Improve Quality of Life in Serious Illness Study. The commitment to provide quality VA care through the entire spectrum of Veteran's lives, and the mandate for quality end-of-life care, requires empirically-tested interventions to improve care for Veterans with life-limiting illness. Significant effort has focused on pain and symptom control; however, VA palliative care should include other elements of patient experience, including spiritual support, life review, and the opportunity to engage in life closure. In this study, investigators sought to determine whether a brief, inexpensive, non-physician implemented intervention to foster Veterans' preparation for end of life, and completion of end of life activities (advance directives, living wills) reduces suffering and improves quality of life for Veterans with life-limiting illness.

    A total of 221 patients were randomized into three groups: Outlook (group 1), attention control/relaxation (group 2), and usual care (group 3). Veterans in the Outlook group met with an intervention facilitator three times over a period of one month and discussed issues of forgiveness, heritage, and conducted a life review. Participants in the second group also met with a facilitator three times over a one-month period, during which they listened to a non-guided relaxation CD for approximately 45 minutes. Participants in the usual care group received no intervention.
    Results showed that the participants in the Outlook intervention group had higher preparation for end-of-life at the first post-assessment and an improved sense of social well-being at the second post-assessment when compared with participants in the usual care group. When compared with Veterans in the relaxation group, Outlook participants did not have significant differences, over time, in preparation, completion, overall quality of life, anxiety or depression. Additional analyses on intervention effects for those who were experiencing distress (depression, anxiety, low sense of peace) around cancer versus other diagnoses were also conducted. Those results showed that Veteran participants with cancer and those with low sense of peace had improved levels of preparation at the first follow-up assessment as compared with usual care. Veterans with symptoms of depression had higher quality of life at the first assessment following the intervention, as compared with relaxation participation
    Investigators believe that study results confirm the Outlook intervention as having a positive impact on social well-being as compared with usual care. They also suggest that differences found between those with serious illness versus those in hospice care indicate distinct needs for each group. Investigators also suggest that the Outlook intervention, if implemented among those with anxiety or depression, would benefit from a pairing with cognitive behavioral treatment.
    The study has resulted in a number of publications, including an assessment of family perspectives about end-of-life care and a discussion of a communication tool to explore patients' understanding about their own illness.


  • Surgical Patients Less Likely to Receive Hospice or Palliative Care Compared to Medical Patients. This study looked at the use of palliative and hospice care in the VA healthcare system among surgical and medical patients at the end of life. Investigators identified 191,280 VA patients who died between FY09 and FY12, and who had an acute VA inpatient admission within one year prior to death. Veterans were categorized as surgical if they had undergone a major surgical procedure in the last year of life and medical if they had not received a surgical procedure within their last year. Findings showed that VA surgical patients were less likely to receive either hospice or palliative care in the year prior to death compared with medical patients (38% vs. 41%, respectively). This difference also was present in a separate analysis of palliative care (37% surgical vs. 39% medical) and hospice care (21% surgical vs. 24% medical). After adjusting for certain patient characteristics, differences in the use of palliative or hospice care were intensified. However, among Veterans who received hospice or palliative care, surgical patients lived significantly longer than their medical counterparts. Over the study period, the use of palliative services for medical patients increased from 29% to 47%, and for surgical patients from 27% to 45%. Hospice use also increased for both groups—from 21% to 27% for medical patients and from 19% to 24% for surgical patients.

    Olmsted C, Johnson A, Kaboli P, Cullen J, and Vaughan-Sarrazin M. Use of Palliative Care and Hospice among Surgical and Medical Specialties in the Veterans Health Administration. JAMA Surgery; September 24, 2014;e-pub ahead of print.

  • Systematic Frailty Screening may Lead to Reduced Post-Operative Mortality in Frail Veterans. In this study, investigators implemented a quality improvement initiative to screen for frailty in Veterans scheduled for elective surgery in order to identify those at high-risk for post-operative mortality and morbidity. This systematic frailty-screening program effectively identified at-risk surgical patients and was associated with a significant reduction in mortality in Veterans undergoing palliative care consultation. Implementation of the screening program was associated with a 33% reduction in 180-day mortality even after controlling for age, frailty, and whether the patients had surgery. Given the high mortality risk in this group, study models suggest that for every four patients screened, one death was prevented or delayed at 180 days. After implementation of the frailty-screening program, surgeons ordered palliative care consultations more frequently, and those consults were more likely to take place before the index operation. Pre-operative palliative care consultations ordered by a surgeon were also associated with the greatest reduction in mortality.

    Ernst K, Hall D, Schmid K, et al. Surgical Palliative Care Consultations Over Time in Relationship to Systemwide Frailty Screening. JAMA Surgery. September 10, 2014;e-pub ahead of print.


References

  1. National Center for Veteran Analysis and Statistics website. Number of Veteran Patients by Healthcare Priority Group: FY2000 to FY2013. http://www.va.gov/vetdata/utilization.asp
  2. VA Geriatrics and Extended Care Services website. http://www.va.gov/geriatrics/guide/longtermcare/Hospice_and_Palliative_Care.asp
  3. National Hospice and Palliative Care Organization website. http://www.nhpco.org
  4. National Hospice and Palliative Care Organization website: An Explanation of Palliative Care. http://www.nhpco.org/palliative-care-0
  5. VA Geriatrics and Extended Care Services website. http://www.va.gov/geriatrics/guide/longtermcare/Hospice_and_Palliative_Care.asp