Amelia Barwise, MD, BCh, BAO, MS; Michael E. Wilson, MD
Socioeconomic status (SES) is used to describe the social standing of individuals and is usually based on factors such as income, education, and occupation. Compared to patients with higher SES, patients with lower SES have less income, less education, less desirable occupations, less medical insurance and, in general, less financial access to medical resources. Lower SES has been shown to be an important independent predictor of poor health outcomes, including increased rates of several chronic diseases and increased stress, morbidity, and mortality.1 SES may confound, mediate, or moderate other demographic predictors of healthcare disparities, including racial, ethnic, religious, cultural, and language barriers.2–4
Advance care planning is a concept and service to help patients prioritize their treatment goals.5 It can encompass the documentation of preferences in either a living will or advance directive, designation of a power of attorney or a Physician Order for Life-Sustaining Treatment (POLST) or Medical Order for Life-Sustaining Treatment (MOLST). However, advance care planning may also involve simple discussions that do not lead to specific legally binding documents. Although there may be limitations to the effectiveness of advance care planning, it remains a cornerstone of end-of-life decision-making in the United States.6,7 Patients who have an advance directive are more likely to receive medical care that reflects their stated preferences than patients who do not have one.8,9 Respecting patient preferences is a vital component of quality end-of-life care, so good communication is also essential.10 Expensive and poor-quality care may result if advance care planning has not been done or if there is poor or suboptimal communication. Studies have noted lower family ratings of quality of dying in the ICU, with the effect mediated by lack of an advance directive.11
While low SES has been noted to negatively affect access to care, quality of care, and healthcare outcomes, its role in end-of-life decision-making and care and specifically advance care planning has not been extensively studied as a primary predictor. We conducted a singlecenter study that demonstrated lower use of advance directives among those in the lowest socioeconomic group as well as increased use of advance directives as SES improved.12 Previous work has shown that differences in familiarity with advance care planning terminology, knowledge of advance care planning, and non-completion of advance directives were mediated by socioeconomic factors.13
The mechanisms by which SES might influence patient attitudes about interventions at the end of life, including cardiopulmonary resuscitation, mechanical ventilation, and other aggressive life-sustaining treatments may be influenced by several factors. Those in lower socioeconomic groups may have less education, leading to health literacy issues that may be barriers to good communication14 as well as understanding of treatments, management options, and prognosis.
Disadvantaged and marginalized populations may have fundamentally different beliefs about the benefits of advance directives, perhaps based on their life experience. Due to limited opportunities, they may have a greater willingness to prolong life by accepting interventions that represent a chance, no matter how small, to do so.15 They may have different preferences, which we should respect. Some qualitative research has noted that communication barriers may contribute to ineffective advance care planning among vulnerable populations.16,17 Another likely explanation for lower use of advance directives is the logistic and financial barriers that may cause difficulties accessing the resources required to formulate a useful and workable advance directive or advance care planning services.
Given that a lack of advance care planning has been associated with costly, poor-quality care,18 the association of low SES with lower rates of advance care completion and documentation is concerning. It is possible that lower rates of advance directive completion for those in the lowest socioeconomic group may lead to care that may not fully honor patients’ wishes. We promote advance care planning to try to reduce suffering and needless unwanted care at the end of life. Lack of an advance directive or access to advance care planning may represent a true healthcare disparity.
Since January 2016, the Centers for Medicare and Medicaid Services has introduced two new Current Procedural Terminology (CPT) codes that allow physicians to bill for time spent discussing advance care planning. Patients do not need to subsequently have an advance directive documented but the incentivized payments serve as a means of promoting discussions about end-of-life issues and decision-making. This policy may mitigate economic issues for those with low SES, assuming they have access to healthcare. Encouraging discussions between providers and patients may be an effective means of improving delivery of value-concordant care to vulnerable patients at the end of life that reflects their preferences.19
Clinicians and researchers face several challenges when trying to understand the relationship between SES and advance care planning. The lack of data about SES and its impact on healthcare and health outcomes reflects a lack of consensus about what is considered an appropriate measure of SES and challenges with data collection. Individual SES has previously been approximated from data about housing, zip code, health insurance, income, education, and occupational characteristics.20,21 These static measures are often neither recorded in the electronic medical record nor maintained up to date, resulting in unreliable data that fails to capture social mobility. Due to the poor quality of individual-level SES measures, census-level or area-level SES/disadvantaged area-level indicators are frequently used as proxy measures (Area Deprivation index), which may not always be accurate.22Measuring the quality and not simply the quantity of advance care planning discussions is challenging, as is identifying a good metric for assessing the quality of end-of-life care, death, and dying.
SES is a much discussed but poorly understood and studied demographic predictor.3,23 It incorporates a variety of contextual factors, including education, occupation, income, and insurance. Lower SES may be associated with a variety of other factors that may be correlated with poor health outcomes such as race, ethnicity, religion, and inability to proficiently speak English. However, we should consider SES as a key independent patient-level marker of risk for poor outcomes, including end-of-life care. Measuring the quality of death and dying and the effects of SES will be important going forward as we continue to reflect on whether advance care planning and access to it changes the quality of end-of-life care for patients who are socioeconomically disenfranchised. Respecting patient preferences is a vital component of quality end-of-life care and requires good communication. Advance care planning should encourage clear communication. If lack of advance care planning reflects access or communication issues and not conscious preferences or choices, we should be concerned that we have identified a disparity in healthcare that we should address.
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