Abstract and Introduction
Background and Objectives: The purpose of this study is to compare treatment preferences of patients to those of surrogates on the Physician Orders for Life-Sustaining Treatment (POLST) forms.
Research Design and Methods: Data were collected from a sequential selection of 606 Massachusetts POLST (MOLST) forms at 3 hospitals, and corresponding electronic patient health records. Selections on the MOLST forms were categorized into All versus Limit Life-Sustaining Treatment. Multivariable mixed effects (grouped by clinician) logistic regression models estimated the impact of using a surrogate decision maker on choosing All Treatment, controlling for patient characteristics (age, severity of illness, sex, race/ethnicity), clinician (physician vs non-physician), and hospital (site).
Results: Surrogates signed 253 of the MOLSTs (43%). A multivariable logistic regression model taking into consideration patient, clinician, and site variables showed that surrogate decision makers were 60% less likely to choose All Treatment than patients who made their own decisions (odds ratio = 0.39 [95% confidence interval = 0.24–0.65]; p < .001). This model explained 44% of the variation in the dependent variable (Pseudo-R 2 = 0.442; p < .001); mixed effects logistic regression grouped by clinician showed no difference between the models (LR test = 4.0e-13; p = 1.00).
Discussion and Implications: Our study took into consideration variation at the patient, clinician, and site level, and showed that surrogates had a propensity to limit life-sustaining treatment. Surrogate decision makers are frequently needed for hospitalized patients, and nearly all states have adopted the POLST. Researchers may want study decision-making processes for patients versus surrogates when the POLST paradigm is employed.
The Physician Orders for Life-Sustaining Treatment (POLST) paradigm offers a structured approach for physicians, nurse practitioners, and physician assistants to discuss and document patient preferences for life-sustaining treatments. The POLST is not a substitute for advance directives, which are meant to name a surrogate decision maker and describe care preferences for future, unknown medical situations (National POLST Paradigm, 2017b). The Institute of Medicine recommends the POLST when disease advances and when patients are facing their final year of life (Institute of Medicine, 2014). If a patient needs a surrogate decision maker, such as in situations when a patient is deemed by a physician to be temporarily or permanently "not competent" to make medical decisions (Drane, 1984), the POLST reflects preferences resulting from discussions between clinicians and patients' surrogates.
The POLST Form is a medical order and is transferrable across care settings; this is particularly helpful given that individuals in the last 6 months of life are often under the care of more than 10 different physicians across multiple settings (Dartmouth Institute for Health Policy and Clinical Practice, 2014). Program efficacy studies indicate that the POLST improved documentation in medical records about end-of-life care, and that terminal interventions were largely consistent with documented preferences (Hickman et al., 2009; Hickman et al., 2011; Richardson, Fromme, Zive, Fu, & Newgard, 2014; Schmidt, Hickman, Tolle, & Brooks, 2004; Tolle, Tilden, Nelson, & Dunn, 1998). The POLST paradigm has been, or is in the process of being implemented in 48 states (National POLST Paradigm, 2017a), and its use will likely grow in the coming years along with the numbers of individuals aging with chronic illness.
Previous research using POLST data showed that a majority of completed POLST records indicate a preference to limit life-sustaining treatments (Fritz & Barclay, 2014; Fromme, Zive, Schmidt, Cook, & Tolle, 2014; Fromme, Zive, Schmidt, Olszewski, & Tolle, 2012; Hammes, Rooney, Gundrum, Hickman, & Hager, 2012; Hickman, Keevern, & Hammes, 2014; Kim, Ersek, Bradway, & Hickman, 2015; Schmidt, Zive, Fromme, Cook, & Tolle, 2014; Tarzian & Cheevers, 2017; Tolle et al., 1998) even though the POLST allows patients or surrogates to indicate a preference to apply all treatment. One reason for the large proportions preferring to limit treatment may be due to clinicians' interpretation of the need for a POLST form; that is, administering full treatment to sustain life is the default situation, and POLST forms are thus only needed if individuals prefer treatment limitations. Another reason may be attributed to study populations, largely comprised of non-Hispanic White individuals, who are more likely to prefer treatment limitations than those from minority populations (Rahman, Bressette, Gassoumis, & Enguidanos, 2016). Studies have not examined treatment preferences when surrogates or health care proxies make decisions documented on POLST forms.
Almost one-half of hospitalized older adults use a surrogate decision maker; and three out of four physicians in a hospital sample reported that they have made a major decision with a surrogate in the past 30 days (Torke et al., 2014; Torke, Siegler, Abalos, Moloney, & Alexander, 2009). Guidance from the American Medical Association (2016) recommends that physicians guide surrogates to employ the ethical principle of "substituted judgment," that is, to choose the treatment path the patient would have chosen if he or she were able. However, researchers have questioned the accuracy of substituted judgment for more than 25 years, and have shown in experimental vignettes that surrogates are largely unable to predict patient decisions about life-sustaining treatments (Barrio-Cantalejo et al., 2009; Hinderer, Friedmann, & Fins, 2015; Seckler, Meier, Mulvihill, & Cammer Paris, 1991; Shalowitz, Garrett-Mayer, & Wendler, 2006; Suhl, Simons, Reedy, & Garrick, 1994; Torke, Alexander, & Lantos, 2008). When there is no evidence of what a patient would have wanted, clinicians may apply the "best interest" standard, which is based on the "the pain and suffering associated with the intervention," "the degree of and potential for benefit," and "impairments that may result from the intervention" (American Medical Association, 2016).
There is evidence of strong correlation between proxy and self-reports for observed behaviors, such as walking limitations after a stroke (Powell, Johnston, & Johnston, 2007) and quality of life measures associated with physical functions, such as breathing, hearing, sleeping (Elliott, Lazarus, & Leeder, 2006). Socio-demographic characteristics and the type of chronic conditions can confound results, but controlling for these confounders has confirmed that proxy reports are accurate for observable behaviors, such as the ability to walk a certain distance, but potentially inaccurate for subjective behaviors, such as the ability to manage money or unobserved behaviors, such as difficulty in using the toilet (Li, Harris, & Lu, 2015).
Specific to patients nearing the end of life, family members can be reliable proxy reporters of objective quality of life measures, such as walking, nausea, and vomiting, but with mixed results for subjective measures, such as fatigue or pain. Further, when there is a discrepancy, proxies tend to report worse subjective quality of life than patients (Ferri & Pruchno, 2009; Kirou-Mauro, Harris, Sinclair, Selby, & Chow, 2006; Kutner, Bryant, Beaty, & Fairclough, 2006; Novella et al., 2001). In a sample of patients in an inpatient palliative care unit, proxy family or physician reports of patient symptoms were poorly correlated with patient reports during early hospitalization (Day 3), improved over time (Day 6), but were still low (<35% agreement) on measures of physical symptoms and psychological well-being (Jones et al., 2011). Family caregivers tended to overestimate the intensity or frequency of lack of energy, anxiety, sadness, and pain distress compared with patients. On the other hand, physicians generally underestimated symptom burden compared with patients (Oechsle, 2013).
Gerontologist. 2019;59(5):811-821. © 2019 Oxford University Press