Doctor with dying patient

End-of-life and palliative care are key issues in today’s health care landscape. While empirical evidence has been collected on the benefits of palliative care programs more generally, rigorous research lacks in the area of palliative care within nursing homes.

Dr. Helena Temkin-Greener of the University of Rochester Medical Center (URMC) is leading a study focused on building an evidence-base for palliative care in nursing homes. ElderBranch spoke with Dr. Temkin-Greener to learn about the need for palliative care in nursing home settings, the URMC pilot and the feasibility of broad roll-out of similar programs.

Palliative Care in Nursing Homes Today

Nursing homes largely do a poor job when it comes to palliative care today. According to the Center to Advance Palliative Care (CAPC), half of nursing home residents suffer from untreated pain. Comfort care and symptom management are lacking and hospice is under-utilized. With as many as 25% of people passing away in a nursing home setting, high quality support and care for the dying is critical in these environments.

Dr. Temkin-Greener cites lack of nursing home-specific palliative care practice guidelines, inadequate staff education with regard to palliative and end-of-life care and failure to integrate palliative care practices into regular care as some of the key barriers to nursing homes offering high quality, comprehensive palliative care today. “Only 17% of nursing homes report having special program trained staff for palliative/EOL care, and similar number report staff training for hospice care”, she explains.

CAPC’s survey of palliative care in nursing homes supports the above and reveals other critical gaps:

  • Lack of knowledge surrounding palliative care: many staff members either believe it to be synonymous with good nursing care or with end-of-life-care
  • Lack of awareness of existing palliative care tools and program: many homes aren’t aware that educational materials for staff and family members of residents are readily available
  • Disruption in care due to hospitalizations: chronic disease patients often going back and forth between acute care settings and nursing homes, leading to discontinuity in care practices

The University of Rochester project is intended to address the issues and barriers highlighted above, and provide rigorous, empirical evidence on the effects of palliative care in nursing homes.

The URMC Pilot

The University of Rochester study is being designed as a randomized controlled trial with 32 nursing homes in Upstate New York. The homes will be randomly assigned to either a control group (no change to status quo care) or a treatment group (palliative care to be incorporated).

Leveraging the National Quality Forum’s guidelines for palliative care, Dr. Temkin-Greener’s team will work with nursing home staff and other stakeholders, including residents and their families, to adapt palliative care practice guidelines for the participating nursing homes. These guidelines will both address protocols for the identification of residents in need of palliative care and procedures for the treatment of these residents.

Next, the research team will develop dedicated palliative care teams at each “treatment” facility. The TeamSTEPPS model will be used to form these teams. TeamSTEPPS, which stands for Strategies and Tools to Enhance Performance and Patient Safety, is a team development model jointly developed by the Department of Defense and the Agency for Healthcare Research and Quality. The model is centered on an evidence-based teamwork system to improve communication and teamwork skills among health care professionals.

Additionally, Dr. Temkin-Greener’s team will leverage the End-of-Life Nursing Education (ELNEC) geriatric curriculum to provide end-of-life content education for staff in the “treatment” homes.

Ultimately, the study will compare outcomes for both the control group and treatment group, focusing on indicators such as pain management, shortness of breath, depression, and hospitalizations. The researchers will also examine how care delivery and management may have changed at each of the homes.

Dr. Temkin-Greener believes that nursing home leadership and commitment are critical to success of these kinds of palliative care programs in the nursing home setting. “Nursing homes that have agreed to participate in this project are already very committed and clearly interested in developing their palliative care skills and improving resident outcomes. But that commitment will need to be sustained over time and become a very important aspect of operations, regardless of the many competing needs that each facility is likely to face over time”, she remarks.

Challenges to Broader Adoption

“We know that teams produce better health care outcomes,” affirms Temkin-Greener. However, while innovation succeeds on a small scale, it does not always follow that it will succeed on a larger scale. Broad adoption carries its own set of challenges.

Dr. Temkin-Greener acknowledges the team aspect as one of the key challenges, “Certainly the creation of well-functioning palliative care teams will be a challenge, as will be their sustainability beyond the intervention phase. Similarly, continuous education of staff, particularly given high rates of turnover, is a concern.” She continues that her team plans to address this potential issue by providing nursing homes with on-going, on-line access to educational resources for palliative care.

She also points to the challenges posed by the current regulatory environment, “Many [nursing homes] are under tremendous stress from regulatory requirements and often have insufficient resources. Changing state and federal rules to pay nursing homes directly for the provision of palliative (rather than hospice) care may be one mechanism for promoting such programs more broadly.”

Lastly, she calls attention to the fact that simply having competing priorities at the nursing homes is enough to pose a challenge to the successful adoption of palliative care programs.

Looking Ahead

While the potential challenges to roll-out are clear, without strong empirical evidence of successful models, the necessary change both in nursing homes and at the regulatory level will never follow. As such, Dr. Temkin-Greener’s study is a promising step forward on the path to improved palliative care in nursing homes.

About Dr. Helena Temkin-Greener

Dr. Helena Temkin-Greener is Professor and Chair (interim) in the Department of Public Health Sciences and the University of Rochester School of Medicine, where she also serves as co-director of research for the Center for Ethics, Humanities, and Palliative Care. She is a health services researcher whose work focuses on teams, teamwork, and their association with patient care outcomes and quality of care. Her new study, titled “Improving Palliative and End-of-Life Care in Nursing Homes,” has recently been

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