Palliative and End-of-Life Care Issues in Adults: The Physician Orders for Life-Sustaining Treatment (POLST) Program
Susan E. Hickman
Palliative and end-of-life care has received increasing attention from researchers and policy makers over the past 25 years. The Institute of Medicine’s (IOM) 2014 report, Dying in America: Improving Quality and Honoring Individual Preferences, provides a comprehensive review of the multitude of problems that complicate caring for patients near the end of life. A fragmented and uncoordinated health care system often leads to care that is inconsistent with patient values and goals. Families are poorly integrated into care, yet are expected to take on increasing responsibility for caregiving. Conversations about values, goals, and preferences are essential to providing patient-centered care and supporting high-quality decisions, but these conversations often do not occur or are poorly conducted because of a lack of clinician training. Policy changes and payment reform are needed to support and incentivize high-quality care (IOM, 2014).
The process of discussing patient goals, values, and preferences for care is an important strategy for improving care of the dying. The advance care planning process involves conversations that ideally occur over time between the patient, family members, and treating clinicians. To help ensure that resulting decisions are known and honored in the event that the patient loses decisional capacity, treatment preferences should be recorded and readily accessible (IOM, 2014).
Traditionally, the living will has been used to document patient preferences for care at the very end of life. However, living wills are largely ineffective at altering treatments (Fagerlin & Schneider, 2004; Silveira, Wiitala, & Piette, 2014; Wilkinson, Wenger, & Shugarman, 2007) unless they are part of a broader community-based advance care planning system (Hammes, Rooney, & Gundrum, 2010; Hammes, Rooney, Gundrum, Hickman, & Hager, 2012). The language contained in living wills is often vague, requiring interpretation by a physician before the wishes can be acted upon. It can also be challenging for healthy adults to predict their treatment preferences in the future when faced with some unknown health problem. Only a minority of adults have living wills, and the documents are frequently unavailable when needed for those who do (Fagerlin & Schneider, 2004).
Cardiopulmonary resuscitation (CPR) code status orders are an alternative strategy to document patient treatment preferences for care at the end of life. The options are full code (attempt resuscitation) or do not resuscitate (DNR). However, this approach is problematic as well. A focus on CPR falsely dichotomizes and oversimplifies choices about end-of-life care and palliation (Happ et al., 2002). Patients and family members face numerous decisions in the final months and weeks of life before code status decisions become relevant. The presence of a DNR order is not specific to other life-sustaining treatments or immediately applicable in most situations. However, this is often the only piece of information available about the overall goals of care. Code status orders may be overgeneralized and assumed to reflect preferences for the broader plan of care, resulting in limitations on treatments that may not necessarily reflect patient preferences (Beach & Morrison, 2002; Holtzman, Pheley, & Lurie, 1994; Zweig, Kruse, Binder, Szafara, & Mehr, 2004).
The Physician Orders for Life-Sustaining Treatment (POLST) program was designed to overcome the limitations of traditional advance care planning tools (Hickman, Hammes, Moss, & Tolle, 2005). The centerpiece of the program is a form used to record treatment preferences as medical orders. It is designed for use with patients with advanced illness or frailty who are nearing the end of life. The POLST form orders are contained in sections: Section A—resuscitation code sta-tus; Section B—level of medical interventions (including hospitalization); Section C—antibiotics; and Section D—artificially administered nutrition. The form is completed by a health care professional based on a discussion with the patient or his or her decision maker. It is then signed by a physician, nurse practitioner, or physician assistant, thus recording the patient’s treatment preferences as actionable medical orders that can be honored throughout the health care system (Hickman et al., 2005).
The POLST was initially developed in Oregon in the early 1990s, and its use has since spread. The POLST program caught the attention of clinicians and policy makers around the United States, aided in part by the Robert Wood Johnson Foundation Community-State Partnerships Program (Christopher & Bain, 2003; Christopher & Spann, 1999) and the IOM report (Field & Cassel, 1997). The first community outside of Oregon to adopt the POLST was La Crosse, Wisconsin, where POLST use began in 1996. The National POLST Advisory Panel was formed in 2004 with initial members including representatives from the five states using POLST at that time (Oregon, Washington, Wisconsin, West Virginia, and New York) as well as the American Bar Association; later the group expanded to include Pennsylvania. New bylaws were issued in 2007, creating the National POLST Paradigm Task Force. This group provides interested states with educational resources, guidance, and consultation services to support development. As of 2016, almost half the states in the country have an active POLST program endorsed by the National POLST Paradigm Task Force, and almost every other state has a similar program at varying stages of development. Models based on the POLST paradigm are now being used in the care of tens of thousands of seriously ill patients across the country. Although the name of these programs varies by state, the programs share the same core elements (www.polst.org).
RESEARCH ON THE POLST PARADIGM
Research has played an important role in the development of the POLST paradigm from the beginning. In addition to formative research that led to the development of the POLST (Dunn et al., 1996), researchers have always been actively involved in the national program. A growing body of research provides data to guide implementation and quality improvement as well as drive policy change through evaluations of POLST use. A 2015 review of the literature identified 23 studies on the use of POLST in the clinical context (Hickman, Keevern, & Hammes, 2015) and eight additional studies were published in the subsequent year. A summary of key research findings is provided here.
Patient characteristics, including age, race, and primary disease, influence whether and how the POLST form is used. Older patients are more likely to have POLST (Fromme, Zive, Schmidt, Cook, & Tolle, 2014; Fromme, Zive, Schmidt, Olszewski, & Tolle, 2012; Hammes et al., 2012; Schmidt, Zive, Fromme, Cook, & Tolle, 2014) and orders to limit treatments are more common in older patients than in younger patients (Hickman, Tolle, Brummel-Smith, & Carley, 2004; Schmidt et al., 2014). Non-White patients use POLST less frequently (Hickman, Nelson, Perrin, Moss, Hammes, & Tolle, 2010) and have orders for more aggressive interventions in Section B than White patients (Hickman et al., 2010; Rahman, Bressette, Gassoumis, & Enguidanos, 2015). Diagnosis may influence whether POLST is used. Research on Oregon decedents suggests that patients with cancer are more likely to have POLST at the time of death than patients with heart disease (Fromme et al., 2014).
Setting of Care
The way in which POLST is used also varies by setting. For example, the frequency of different resuscitation code status orders documented on POLST differs depending on the population. In one hospice sample, 99% of patients had a DNR order at the time of death (Hickman et al., 2009). In a mixed community sample drawn from the Oregon POLST registry, only 72% of patients had an order for DNR (Fromme et al., 2012). Overall, the pattern of orders varies, with orders for more curative treatment in populations where there is more variability in prognosis and health status, and orders for more comfort-focused treatment in populations where prognosis and health status are more uniformly poor (Hammes et al., 2012; Hickman et al., 2004, 2009, 2010; Fromme et al., 2012).
Timing of POLST Orders
POLST is intended for patients who are nearing the end of life (www.polst.org). Recent research suggests that POLST is completed a median of 6.4 weeks before death (Zive, Fromme, Schmidt, Cook, & Tolle, 2015). New and revised POLST forms are more common for patients near the end of life (Hickman et al., 2011; Zive et al., 2015). Typically, when POLST forms are revised, it is to document orders for less aggressive treatment (Hickman et al., 2011; Zive et al., 2015). Almost half of forms are written within the final 4 weeks of life (Zive et al., 2015).
Associations Between POLST Form Orders and Outcomes
Section B of the POLST is the form’s most unique feature because it provides medical orders for the desired level of medical intervention. Multiple studies have found associations between treatments and Section B orders. Patients with comfort care orders are less likely to receive life-sustaining treatments such as hospitalization than patients with orders for full treatment (Hammes et al., 2012; Hickman et al., 2004, 2009, 2010). The only study to date comparing POLST users with a randomly selected sample of non-POLST users was funded by the National Institute of Nursing Research (NINR; NR009784). Chart review data was abstracted for residents with and without POLST forms at a random sample of facilities in Oregon, Wisconsin, and West Virginia. Multilevel modeling, including facility characteristics and patient characteristics, suggested that patients with comfort care orders were less likely to receive life-sustaining treatments than patients without a POLST form (Hickman et al., 2010). Given that patients with comfort care orders are less likely to go to the hospital, it is unsurprising that additional research suggests patients with orders for comfort care are less likely to die at the hospital (Fromme et al., 2014; Hammes et al., 2012; Pedraza, Culp, Falkenstine, & Moss, 2016; Tuck et al., 2015).
Treatments provided to patients are generally consistent with the orders documented on POLST (Hickman et al., 2011; Lee, Brummel-Smith, Meyer, Drew, & London, 2000). Section A orders about resuscitation are the only section where it is possible make a determination about whether an indicated treatment was not provided, because it is clear that CPR was indicated if a patient is deceased and there is no record of a CPR attempt or explanation about why the treatment was not provided (e.g., rigor mortis). In a multistate study, detailed chart reviews yielded data suggesting that treatments were consistent with Section A orders 98% (300/306) of the time. In Sections B, C, and D of the POLST, it is only possible to look at whether the treatment provided is consistent with the order as written. If the treatment is not provided, it is unclear if it was indicated and not provided because of POLST or just not ever indicated. In the multistate study, treatments were consistent with Section B orders 91% (102/112) of the time. A majority of the treatments provided to patients with orders for comfort care were comfort-focused, such as hospitalizations for uncontrolled pain, and only a small number were inconsistent with the order to provide comfort care. Antibiotic use was consistent with orders about antibiotic use 93% (224/241) of the time (Hickman et al., 2011), though there were no differences in antibiotic use between residents with and without POLST (Hickman et al., 2010). Consistency was lowest between treatment and orders about feeding tube use. Feeding tube use was consistent with orders 64% (12/22) of the time. However, the 10 discrepancies were due largely to situations in which the order reflected a preference for a trial period of feeding tube use. Feeding tube use was categorized as inconsistent because a trial had been started and never discontinued or revisited. The small number of cases involved makes it problematic to generalize about the utility of this order.
Clinician Experiences With POLST
Clinician reports about the use of POLST are largely positive. Hospice staff report that POLST helps initiate conversation, guides treatment decisions, and provides clear instructions (Hickman et al., 2004). Emergency medical services (EMS) personnel report that POLST orders often result in changes to the treatments provided when they arrive at the scene, such as withholding CPR (Schmidt, Hickman, Tolle, & Brooks, 2004; Schmidt, Olszewski, Zive, Fromme, & Tolle, 2013). However, there are challenges in implementing POLST, including education gaps resulting in difficulty understanding and explaining the form (Hickman et al., 2009; Sugiyama et al., 2013; Vo et al., 2011; Waldrop, Clemency, Maguin, & Lindstrom, 2014), discomfort with the problems the form raises (Hickman et al., 2009; Sugiyama et al., 2013), and difficulty interpreting the orders (Mirarchi, Cammarata, et al., 2015; Mirarchi, Doshi, Zerkle, & Cooney, 2015). A variety of logistical problems have also been identified, including concerns about the amount of time involved in discussing POLST, challenges in obtaining clinician signatures, problems transferring the form across settings, and family disagreements. Notably, a majority of these problems are not specific to POLST. The frequency, duration, and impact of these problems are unknown. Efforts to implement POLST may draw increased attention to the broader cultural and systems problems described in the recent IOM report (IOM, 2014).
Legal Issues and POLST
A related area of research focuses on the legal issues central to use of the POLST tool. In 2008, investigators at the Oregon Health & Science University School of Nursing, the American Bar Association, and the West Virginia Center for Health, Law, and Ethics collaborated on a study evaluating potential state legal barriers to POLST implementation (Hickman, Sabatino, Moss, & Nester-Wherle, 2008). Interviews were conducted with key legal informants in each state, and a review of laws was conducted to supplement the interviews. Although some states are able to develop programs based on the POLST model within the language of existing state laws and regulations, most require legislative change (Sabatino & Karp, 2011). Several key areas of the law were identified as representing potential legal barriers, including limitations on consent to forgo life-sustaining treatment, medical preconditions and witnessing requirements, default surrogate provisions, and out-of-hospital DNR (OHDNR) protocol barriers (Hickman et al., 2008). A second study evaluated the factors that facilitated or hindered states with active POLST programs (Sabatino & Karp, 2011). Findings include variability in legislative and regulatory approaches, the identification of facilitators, and delineation of almost 40 issues and barriers encountered during all phases of development (Sabatino & Karp, 2011).
Limitations of Existing POLST Research