Name of Project: Palliative Care in Nursing Homes
Institution: University of Pennsylvania School of Nursing and Genesis Elder Care, Philadelphia, PA
PI: Neville Strumpf, PhD, RN, FAAN and Howard Tuch, MD, CMD
Abstract (as described by Project staff)
In an effort to alter the culture and process of dying in nursing homes, our specific objectives have been to:
Our project has been carried out in six nursing homes within a large for-profit long-term care network. The homes average 130 beds each and are located in Maryland, three rural homes on the eastern shore and three suburban homes in the Baltimore area. Four of the homes are intervention projects; the other two are controls.
Brief Synopsis of Program Characteristics, Successes and Challenges
This project is a melding of the efforts of Genesis ElderCare, the third largest long-term-care provider in the country and the University of Pennsylvania’s School of Nursing. It is analyzing the difference over time in six nursing homes receiving one of three conditions: palliative care training, training plus an interdisciplinary team and conventional care (control). In this effort, the University of Pennsylvania creates curriculum and provides nurse consultants. Genesis provides the sites and palliative care oversight. We understand that Genesis ElderCare is the only for-profit nursing home corporation to have a director of palliative care.
Success is, in part, because of the solid working relationship between these two organizations. Also, they had the foresight to include a Genesis vice president of operations as part of the team. This addition to the team increases Genesis buy-in and helps ensure that most of what’s been designed in terms of forms, staff and orientation, is now part of operations at these Genesis homes and easily exportable through their very large system.
There are a total of approximately 540 residents in the intervention homes of which 60, on average, are actively considered to be on the palliative care program. Residents are considered for the program based on a review of their health care record by an interdisciplinary team, which takes into account the level of diagnosis, frailty, severity of symptoms and wishes of the patient and family.
Nursing home personnel carry out the project with support from the project director and the nurse consultant. Two of the four homes develop interdisciplinary teams with their staff, facilitated by the nurse consultant. The nurse consultant delivers a minimum of 4-5 hours per week continuing training and support in pain and symptom management, advance care planning and social, spiritual and bereavement support in each of four intervention nursing homes. The interdisciplinary palliative care teams (medical director, director of nursing, palliative care coordinator, social worker and others) engage in problem solving, identify palliative care candidates, discuss cases, etc.
The project has collected data on enrolled and consented residents, staff and families since April 1999. Data gathered includes the characteristics of persons appropriate for palliative care, documentation of advance care planning, pain and symptom management, and events during the final month of life, staff attitudes and family satisfaction. Through this process they have identified an assessment protocol for identifying individuals likely to benefit from palliative care, and proposing a patient identification tool that captures residents in need of palliative care. The project is currently evaluating the proposed tool as a model capable of identifying residents in need of palliative care.
Surveys show that the nursing home staff agree overwhelmingly that the resident’s right to treatment choice was paramount (97 percent), 39 percent think that dying residents should be referred to hospice, 22 percent felt that end of life is a time of great suffering, and 18 percent indicated that the nursing home was not a good place to die. Staff also indicated that their greatest clinical challenges were pain control (74 percent), loneliness (68 percent) and depression (56 percent). In general, staff attitudes reflected respect of resident choices and comfort, particularly pain management, as the primary goal of care in the terminal phases of chronic illnesses. At the same time, there was ambivalence regarding current care practices. Project leaders believe that staff clearly needs additional clinical skills if they are to deliver more individualized care aimed at addressing symptoms and other problems.
Project staff has completed a second survey on attitudes toward death and will be able to make pre and post comparisons regarding the impact of the intervention, as well as any emerging trends or differences among homes or between the urban and rural homes.
More important comparative data is on its way from a subset of data form the Palliative Care Worksheet, completed on all residents at the time of death and provides information concerning events at the end of life. It literally will provide comparative data on the effect of the project.
Among the most interesting lessons learned was that the project reflects a microcosm of a broad set of national issues facing nursing homes that attempt to implement palliative care. Despite commonalities or differences, all nursing homes seem to go through the same three key transitions in the implementation of palliative care: introducing the concept, overcoming barriers and achieving sustainability. The project staff has written and published a complete article on these findings.
The project found unique ways of communicating to overcome these communications challenges including bi-weekly telephone conference calls among key staff, team empowerment through training and consultative support, shared values and beliefs, knowledge, onsite champions, administrative support, etc.
According to project staff, accomplishments during the project included enhanced knowledge in pain and symptom management, stabilization in key leadership positions in three of the four homes, more residents identified for palliative care, greater dialogue concerning advance directives, reduction in the use of feeding tubes, fewer transfers to the hospital, a closer working relationship with hospice; outside referrals to the home based in knowledge of its palliative care program and efforts to incorporate alternative therapies into care. Areas of greatest need continue to be ongoing training of staff, meeting the spiritual needs of residents and families, working with selected physicians who do not agree with staff concerning goal of palliative care, incorporation of palliative care into quality improvement activities, marketing and promoting the program and maintaining momentum.
Exportable Products/Tools
Policy Issues
Payment for long-term-care palliative care remains elusive. The project staff believes they are also facing regulations that are not always compatible with the goals of palliative care. There has been significant staff turnover due to insufficient employee compensation at nursing homes.
Communications
This project has conducted a videoconference for the University of Pennsylvania Delaware Valley Geriatric Education Center Regional Network of Nursing Homes “Palliative Care in Nursing Homes” and interviewed on WHYY National Public Radio in Philadelphia regarding hospice/home care.
Project leadership presented a poster during the October 2000 International Congress of Palliative Care. Also in October 2000 they were involved in a presentation to the Annual Meeting of the National Citizens Coalition for Nursing Home Reform in Washington, DC. They also presented four papers at the November 2000 annual meeting of the Gerontological Society of America.
Internal Sustainability
According to project staff, critical to sustainability is:
In three or four centers the culture has been sufficiently changed to impact how individuals deliver care to the patients. However, if this project is seen only as a “program” and not the standard of care, the project leadership warns that the changes will dissipate as new staff come in and out.
After three years, the project staff would expect that the tools would be in place to ensure that the quality of life of patients will be improved. However, turnover in staff, which is devastating to the nursing home industry, could undermine this as well as other quality of care concerns. Without solid corporate leadership to keep care centered on quality of life, staff turnover could easily erode the impact of this project. As a result of this project’s success, the Genesis corporate office is considering making the nurse consultant position permanent. They also plan to extend this model into other Genesis nursing homes.
Generalizing the Model
The model is generalizable to other nursing homes, and in fact, Genesis is considering replicating the model to all Genesis long-term care facilities.
Because nursing homes are very complex environments, project staff recommends that if others are interested in replicating the model, that they pare down the model to a few essentials that can be used throughout all long-term care settings. Further, expect it to take much longer than expected. The team suggested patience. Take the time to form trusting relationships with providers. Keep the project grounded and patient focused. The team should offer continuing support and mentoring for health care providers. Acknowledge and celebrate successes! Be prepared for constant turnover in staff and the sense that you are starting all over again, but be persistent. The change comes in little doses over longer periods of time. Improvement in systems already in place in the nursing home industry would help generalize what we have learned form this project. Working with and improving tools already in place can serve as a catalyst to improve end-of-life care.
Words of Wisdom from the Project
According to project staff:
“When introducing the concept, major hurdles need to be overcome as in a project involving education of all staff, altered processes of care delivery and cultural change. These hurdles include having a common understanding of palliative care in nursing home, providing staff with the capacity to recognize appropriate recipients of palliative care and to assure that once identified, residents and families continue to be closely monitored and supported until death occurs. While the project provided a carefully prescribed set of protocols, these protocols were sometimes viewed by staff as barriers: additional paperwork, more meetings and a greater workload. Staff needed to be convinced that this truly was an improved process that would result in improved patient and family care. Major barriers to any sustainable palliative care program were turnover in leadership staff, inadequate knowledge and limited physician involvement. Critical to the success of this model has been corporate support from Genesis ElderCare, consistent presence of the nurse consultant and well-developed assessment tools and protocols.
