From the Division of Palliative Care, Butler Health System, Butler, PA (Drs. Stein, Reefer, Selvaggi, Ms. Doverspike); the University of Pittsburgh Medical Center, Pittsburgh, PA (Dr. Rajagopal); and the Duke Cancer Institute and Duke Fuqua School of Business, Durham, NC (Dr. Kamal).
Abstract
- Objective: To describe an approach to develop a community-centric palliative care program in a rural community health system and to review data collected over the program’s first year.
- Methods: We describe the underlying foundations of our program development including the health system’s prioritization of a palliative care program, funding opportunities, collaboration with community supports, and the importance of building a team and program that reflects a community’s needs. Data were collected through a program-maintained spreadsheet and a data monitoring system available through the Global Palliative Care Quality Alliance.
- Results: 516 new inpatient consultations were seen during the first year, for a penetration of 3.7%. The demographics of the patients who received consultation reflect that of the surrounding community. Over 50% of patients seen within the first year died, and hospice utilization at home and within facilities and inpatient hospice units increased. In addition, 79% of the patients seen by the palliative care team had a confirmed code status of do not resuscitate and do not intubate.
- Conclusions: Butler Health System’s approach to development of a palliative care program has resulted in increasing utilization of palliative care services in the hospital. Having hospital administration support, community support, and understanding the individualized needs of a community has been essential for the program’s expansion.
Key words: palliative care; program development; community hospital; rural.
Since its inception, palliative care has been committed to providing specialty-level consultation services to individuals with serious illness and their loved ones. The field has focused heavily on growth and acceptance, consistently moving upstream with regards to illness trajectory, across diseases, and across demographic variables such as age (eg, pediatric quality of life programs) and race (eg, community outreach programs addressing racial disparities in hospice use). An important frontier that remains challenging for much of the field is expansion into the community setting, where resources, implicit acceptance, and patient populations may vary.
As health system leaders appreciate the positive impacts palliative medicine on patient care and care quality, barriers to implementing palliative care programs in community hospitals must be addressed in ways tailored to the unique needs of smaller organizations and their communities. The goal of this paper is to outline the approach taken to develop Butler Health System’s community-centric palliative care program, describe our program’s underlying foundation rooted in community supports, and recount steps we have taken thus far to impact patient care in our hospital, health system, and community through the program’s first year.
Community Hospital Palliative Care—The Necessity and the Challenges
Palliative care has made strides in its growth and acceptance in the last decade; yet, the distribution of that growth has been skewed. Although 67% of hospitals now report access to specialist palliative care programs, most of the 148% growth over the last decade has been actualized in larger hospitals. Ninety percent of hospitals with greater than 300 beds report palliative care service availability whereas only 56% of small hospitals were identified to have this specialty care [1].
The inequity of access is also seen in other countries. A recent Canadian study retrospectively examined access to care of 23,860 deceased patients in Nova Scotia. Although they found 40.9% of study subjects were enrolled in a palliative care program at urban, academic centers, patients in a rural setting were only a third as likely to be enrolled in a palliative care program [2]. This access gap has important effects on patient-level outcomes, as evidence has consistently demonstrated that patients in rural settings who receive palliative care have decreased unnecessary hospitalizations and less in-hospital deaths [3].
While evidence of improved outcomes is strong, important barriers stand in the way. In a 2013 study, 374 health care providers at 236 rural hospitals in 7 states were interviewed to determine barriers to providing palliative care in rural settings. Barriers identified include a lack of administrative support, access to basic palliative care training for primary care physicians, and limited relationships to hospices [4]. Additional challenges include lack of access to tertiary-level specialty clinicians, access to and misconceptions about prescription medications, transportation for patients and providers, and incorporating a patient’s community supports [5–7].
Proposed Solutions
Techniques to improve palliative care access for rural and community centers that have been previously reviewed in the literature include videoconferencing with tertiary care experts in palliative care and education through small community-level lectures [8–10]. Goals of rural and suburban palliative care programs are broadly similar to programs at academic medical centers; however, few studies have identified impact of palliative medicine on patient care in community settings. In one suburban practice, a study found that patients were more likely to die at home if they had multiple caregivers, increased length of time under palliative care, and older age upon referral [11].
The United States has few large-scale pilot programs attempting to address the palliative needs of a more suburban or rural population. Of these, the Minnesota Rural Palliative Care Initiative developed by Stratis Health is perhaps the best publicized. Stratis Health developed and led an 18-month learning collaborative from October 2008 to April 2010 through which community teams developed or improved palliative care services. Through this initiative, a community-based health care practice model was developed that took advantage of the strong interrelationships within rural communities. After 18 months, 6 out of 10 rural Minnesota communities had formal palliative care programs, and 8 to 9 out of 10 had capabilities to at least address advance directives as well as provider and community education [12]. In another initiative, the NIH established a new suburban clinic with tertiary providers specifically for resource intensive, underserved patients [13]. The clinic was established by partnering with a service that was already in place in the community. Twenty-seven patients were seen within 7 months. The most common consults were patients with numerous comorbidities and chronic pain rather than terminal diagnoses. Given the intensive need of these patients, the authors felt that a consultation service and an interdisciplinary team that included psychosocial/spiritual/social work providers offered the most efficient method of delivering advanced palliative care needs.
The research regarding both solutions to challenges and novel methods of addressing the care gap remains sparse as evidenced by the conclusions of multiple systematic reviews and meta-analyses and the inability of the Cochrane review to find papers meeting inclusion criteria regarding techniques of community support in palliative care [14,15]. There remains a need to identify practical techniques of implementing palliative care in rural and suburban settings.