Editor’s note: The following post, on palliative care in the long term setting, is authored by Mary Ersek and David Stevenson (photos and linked bios above) and by Justine Sefcik, MS, RN, a fourth year doctoral student at the University of Pennsylvania School of Nursing, a 2012-2014 National Hartford Centers of Gerontological Nursing Excellence Patricia G. Archbold Scholar, and a previous Jonas Hartford Scholar. The post is the first in a periodic Health Affairs Blog series on palliative care, health policy, and health reform. The series will feature essays adapted from and drawing on an upcoming volume, Meeting the Needs of Older Adults with Serious Illness: Challenges and Opportunities in the Age of Health Care Reform, in which clinicians, researchers and policy leaders address 16 key areas where real-world policy options to improve access to quality palliative care could have a substantial role in improving value.
As we begin the series, we offer the following short introduction from Diane Meier and Amy Kelley: “Because of its focus on quality of care, the Affordable Care Act is poised to expand access to palliative care services for the sickest, most vulnerable, and therefore most costly, 5 percent of patients, who drive about 50 percent of all healthcare spending. Palliative care is specialized medical care for people with serious illnesses that focuses on providing relief from symptoms, pain, and stress, whatever the diagnosis or stage of illness. Patients (and family caregivers) receiving palliative care experience improved quality of life, better symptom management, lower rates of depression and anxiety, and improved survival. Because patient and family needs are met, crises are prevented, thereby directly reducing need for emergency department and hospital use and their associated costs.”
Around a quarter of older Americans die in nursing homes each year, including nearly 70 percent of individuals with advanced dementia. For these individuals, the delivery of coordinated, person-centered services at the end of life is a central component in the array of supportive and therapeutic services they receive. Although growing numbers of nursing home residents are accessing Medicare’s hospice benefit before death, substantial barriers continue to impede the meaningful integration of palliative and hospice care into the long-term services and supports that most nursing home residents receive. These barriers range from the orientation of nursing homes — and the regulatory standards that govern them — toward rehabilitative care, to the fragmented approach of Medicare and Medicaid in financing acute, post-acute, palliative, and supportive services.
The challenge of improving end-of-life care in nursing homes is broad, and no single policy reform or intervention alone will be sufficient. Nonetheless, there are several mechanisms by which policymakers and practitioners could improve end-of-life care in nursing homes. Importantly, these mechanisms align broadly with the guiding principles for long-term services and supports (LTSS) outlined by the US Commission on Long-Term Care in their final report to Congress. Specifically, the Commission concluded that there is an urgent need to enhance the quality of LTSS and improve the coordination among the providers that deliver these services. While emphasizing the need to finance and deliver services in a fiscally sustainable way, the Commission called for improving “the integration of LTSS with health care services in a person- and family-centered approach.”
What is meant by a “person- and family-centered approach?” It is care that starts with understanding what matters most to the patient and their loved ones, and then building a care plan to achieve the goals that they articulate. Palliative care is a growing model for enhancing LTSS that aligns well with the Commission’s recommendations. CMS defines palliative care as “patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering.”
Palliative care is not just for people at the end of life; rather, it can be integrated throughout the continuum of illness to address physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice.” Hospice is a type of palliative care that focuses on the final months of life, whereas palliative care is provided at all stages of serious illness, regardless of the patient’s prognosis or treatment choices. Key features of palliative care are: open communication about future illness trajectories, which allows for patient and family-centered discussions of treatment options and goals of care; documentation of these goals, often through completion of advance directives or a Physician’s Orders for Life-Sustaining Treatments (POLST) form; holistic assessment and interventions to minimize physical, psychosocial, and spiritual suffering; support of activities to bring life closure; and bereavement services for families.
Palliative Care And Nursing Homes
Currently, most formal palliative care programs operate in clinic and hospital settings, where there is evidence that these programs enhance the quality of care, increase patient and family satisfaction, and decrease health care costs. The failure of palliative care to take hold in nursing homes stems from several factors: regulations that favor rehabilitation over palliative care; inadequate staff knowledge and skill in palliative care; financial disincentives (e.g., higher reimbursement for skilled nursing care and invasive therapies); misconceptions about palliative care; and lack of reimbursement for specialized palliative care.
Hospice agency/nursing home partnerships. There are three models for delivering palliative care in nursing homes. The first model involves partnerships between hospice agencies and nursing homes. This approach has grown substantially since the late 1980s, when CMS determined that eligible nursing home residents could access the Medicare hospice benefit. Around a third of all nursing home decedents now use the Medicare hospice benefit before death. Hospice supplements the resources available at nursing homes, introducing services such as expert symptom management, additional personal care, spiritual counseling, social work services, and volunteer and bereavement services. Although some authors have raised questions of the fit between Medicare’s configuration of the hospice benefit and the nursing home setting, hospice use in NHs is associated with decreased unnecessary therapies, fewer hospitalizations, improved pain and symptom management, and higher family satisfaction with care.
Externally based palliative care. A second model is one in which external palliative care consultation teams respond to requests from nursing home clinicians. This model can serve a broader population of NH residents, as there is no need to forgo curative therapies or to meet the hospice requirement of a prognosis of six-months or less to live to receive services. The consultant, a physician or nurse practitioner, bills under Medicare part B; therefore costs for these services are not incurred by nursing homes. While this model is not yet widely used, Evercare™ a division of the UnitedHealth Group® and the Bluegrass Palliative Care Consultation Service are two different and successful external palliative care consultation models.
Facility-based palliative care. The third approach is to cultivate facility-based palliative care expertise and adoption of palliative care practices. There are many ways to accomplish this goal, and each facility can tailor efforts based on their own needs and resources. Staff training is a cornerstone, in addition to implementation of policies and procedures that support palliative care. Many nursing homes are making use of established palliative care resources such as the End-of-life Nursing Education Consortium (ELNEC) Geriatric curriculum. This comprehensive train-the-trainer program is appropriate for many nursing home staff, including licensed nurses, nursing assistants, and social workers, and has been disseminated across the US.
Another resource is the Comfort First program that was developed by the Beatitudes Campus in Phoenix, Arizona, and currently is expanding to facilities in New York City and Chicago. Comfort First steps away from adherence to a rigid set of procedures and schedules to help staff maintain the dignity and maximize comfort for persons with advanced dementia. Early results demonstrate reduced use of antipsychotic medicines, restraints, and staff turnover.
Although these emerging palliative care models hold great promise for enhancing LTSS, additional policy changes are needed to integrate palliative care services more fully into nursing homes. First, CMS should ensure that palliative care and hospice are included in payment models that seek to integrate LTSS with acute and post-acute care (e.g., accountable care organizations, medical homes, and bundled payment demonstrations), provided sufficient safeguards are included to ensure quality of care. Second, policymakers could allow some package of palliative care and hospice services to be delivered alongside SNF care, mitigating the barrier the SNF benefit poses to hospice utilization currently. Similarly, hospice eligibility policies could be re-evaluated in the context of how the benefit is currently used. Third, regulatory and performance-based payment and reporting efforts should incorporate performance measures that are appropriate for patients with advanced illness.
We applaud CMS’ 2012 revised guidance for state surveyors that elaborated policies on identification of and adherence to advance directives and end-of-life care. CMS should also take steps to develop palliative care quality indicators focused on the concordance of care received with resident and family priorities. Finally, nursing homes should be held accountable for the quality of end-of-life care provided for all residents, including those who use hospice and those who do not, and should receive the resources needed to provide residents with care that promotes quality of life.