Public Awareness and Perceptions of Palliative and Comfort Care

Abstract

In April 2018, Barbara Bush, champion for universal literacy and former First Lady of the United States, died at the age of 92 after a prolonged illness. Two days prior, a family spokesperson announced that she had “decided not to seek additional medical treatment and [would] instead focus on comfort care.” We analyzed Google Trends data to assess whether this announcement generated public curiosity regarding the phrase ‘comfort care.’ Google searches for the phrase ‘what is comfort care?’ spiked immediately after the April 15 announcement, exceeding the prior year's search frequency by nearly fourfold (Figure). This spike was disproportionately common in Houston, Texas—Mrs. Bush's hometown. These findings highlight a lack of awareness regarding palliative-related services and are concerning given the benefits of palliative care for patients with life-limiting illness. Although the term was coined nearly half a century ago, there is substantial misunderstanding and lack of awareness about palliative care. A national survey of 800 US adults conducted in 2011 by the Center to Advance Palliative Care found that 70% were “not at all knowledgeable” about palliative care.1Shalev A Phongtankuel V Kozlov E Shen MJ Adelman RD Reid MC Awareness and misperceptions of hospice and palliative care: a population-based survey study.Am J Hosp Palliat Care. 2018; 35: 431-439Crossref PubMed Scopus (87) Google Scholar After they were provided with a brief description of palliative care services, 9 of 10 felt it was important to have access to palliative care for patients and their families, including their own loved ones. Another study surveyed 800 New York State adults in 2016 regarding palliative and hospice care and found similar results.1Shalev A Phongtankuel V Kozlov E Shen MJ Adelman RD Reid MC Awareness and misperceptions of hospice and palliative care: a population-based survey study.Am J Hosp Palliat Care. 2018; 35: 431-439Crossref PubMed Scopus (87) Google Scholar Most equated palliative care with symptom management, but were unaware that it included psychosocial and spiritual support, bereavement services, support for family and caregivers, and the affirmation of life—key principles of palliative care. Individuals also used palliative and hospice care definitions interchangeably and regarded both as "end of life" care. Only 22% recognized comfort care as a component of palliative care. In addition, 37% and 53% of respondents demonstrated misperceptions about hospice and palliative care services, respectively. Results from a randomized trial of a nurse-delivered palliative intervention vs usual care among patients with advanced cancer found that many believed that palliative care was synonymous with end-of-life care, which was negatively stigmatized to represent death, resulting in avoidance and fear.2Bakitas M Lyons KD Hegel MT et al.Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial.JAMA. 2009; 302: 741-749Crossref PubMed Scopus (1206) Google Scholar Taken together, these findings suggest low public awareness about palliative care and its benefits, although individuals appear to be interested in accessing this care for their loved ones after being introduced to the core concepts of the specialty. This lack of awareness indicates that patients and caregivers are underexposed to these services and their demonstrated benefits. In fact, palliative services are underutilized among both cancer and noncancer populations. Less than 5% of hospitalized patients receive palliative care and less than half of those who die receive hospice care.1Shalev A Phongtankuel V Kozlov E Shen MJ Adelman RD Reid MC Awareness and misperceptions of hospice and palliative care: a population-based survey study.Am J Hosp Palliat Care. 2018; 35: 431-439Crossref PubMed Scopus (87) Google Scholar High-quality end-of-life care has been defined by various measures, including reduced hospital and intensive care unit visits, dying in a preferred setting (eg, home rather than hospital), preparation for death, improved patient and family comfort, and reduced duration of grief among family members. Studies have shown that combining standard care with palliative care for patients with malignancy leads to better outcomes, including symptom management, quality of life, and reduced burden on caregivers. For some patients, early palliative care is even associated with longer and better-quality life, reduced intensive care, and more appropriate hospice referral.3Temel JS Greer JA Muzikansky A et al.Early palliative care for patients with metastatic non-small-cell lung cancer.N Engl J Med. 2010; 363: 733-742Crossref PubMed Scopus (5006) Google Scholar The latter finding is relevant given that patients may have strong preferences for where they spend their final days. In an observational study of 458 hospitalized adult patients admitted to a general internal medicine service (only 11% with cancer), 75% preferred to die at home. Of the 123 patients who died during the follow-up period, 66% did so in an institutional setting. This population's preference for dying at home is consistent with public opinion surveys and is notable because some studies have observed overall better quality of care at home near the end of life in comparison with in-hospital settings (including inpatient hospice and palliative care units).4Hales S Chiu A Husain A et al.The quality of dying and death in cancer and its relationship to palliative care and place of death.J Pain Symptom Manage. 2014; 48: 839-851Abstract Full Text Full Text PDF PubMed Scopus (68) Google Scholar Importantly, no study has identified harms related to the provision of palliative care. The underuse of palliative care and evidence of negative end-of-life outcomes, such as dying in nonpreferred locations, highlight the need for increased awareness of and access to palliative care for patients with life-limiting illness. Concerted efforts are needed to address the underuse of palliative services from both supply and demand perspectives. Measures should be taken to increase public awareness of palliative care and clarify misperceptions to reduce avoidance based on misperceptions or stigma. This might be accomplished through public awareness campaigns or hospital and specialty-wide initiatives. For example, the Center to Advance Palliative Care developed a website (https://www.getpalliativecare.org) and YouTube channel that host videos providing lay explanations about palliative care, how to access services, and patient narratives about their experiences receiving care. To our knowledge, no study has assessed that initiative's impact on improving awareness, dispelling misconceptions, or increasing demand for services. From a supply standpoint, an obvious intervention is to train more palliative care providers. This could be accomplished by better aligning graduate medical education funding with our population's needs and increasing the demand for those positions by increasing provider reimbursement. In 2010, there were 74 accredited palliative care training programs offering 181 positions. During the most recent fellowship match, 122 programs offered 387 training positions and 86% were filled. However, this is insufficient in meeting the growing need for end-of-life care among the aging US population, and it will be necessary to meet this need by increasing the skills of non–specialty-trained providers.5Kamal AH Bull JH Swetz KM Wolf SP Shanafelt TD Myers ER Future of the palliative care workforce: preview to an impending crisis.Am J Med. 2017; 130: 113-114Abstract Full Text Full Text PDF PubMed Scopus (123) Google Scholar The continued incorporation of palliative care training into medical school, residency, and fellowship training programs, and among independent practitioners, is essential. This approach appears to be consistent with the evolving educational landscape within internal medicine. Although the Accreditation Council for Graduate Medical Education has no formal requirements or guidelines for palliative care training within internal medicine (something that should be reconsidered), a 2015 survey of 338 program directors found that 88% reported that palliative care was a “very important part of their residents’ training.”6Edwards A Nam S Palliative care exposure in internal medicine residency education: a survey of ACGME internal medicine program directors.Am J Hosp Palliat Care. 2018; 35: 41-44Crossref PubMed Scopus (14) Google Scholar Seventy-six percent of programs already offered a palliative care rotation. Aside from focusing on education, incentivizing providers by including end-of-life quality metrics into hospital- and provider-level reimbursement policies or value-based payment models would likely lead to a rapid expansion of services and fuel innovations in palliative care delivery and measurement. Similar approaches were adopted to address hospital-based infection rates and chronic disease management leading to substantial and sustained improvements in outcomes for those conditions. Regardless of whether incentives are realigned, it appears that the expansion of palliative care programs is already associated with cost savings in most cases.7Smith S Brick A O'Hara S Normand C Evidence on the cost and cost-effectiveness of palliative care: a literature review.Palliat Med. 2014; 28: 130-150Crossref PubMed Scopus (295) Google Scholar Palliative care aims to improve quality of life for patients and their caregivers by addressing the physical, psychosocial, and spiritual challenges of facing life-limiting illness; evidence is mounting that it is effective in doing so. However, palliative services are underutilized nationally, in part due to a shortage of board-certified palliative care providers. This problem is compounded by the public's general lack of awareness about these services as evidenced by the public curiosity near the end of Mrs. Bush's life. The proportion of Americans aged 65 years and older is projected to increase from 46 million to more than 98 million by 2060. This increase will bring with it an unprecedented prevalence of chronic and end-stage illnesses and thereby a greater need for practitioners who are skilled in providing palliative care for those patients and their families. Strategies aimed at increasing the provision of palliative care should focus on raising awareness and addressing misperceptions among the public and realigning educational and incentive-based policies to ensure that the US health care system can provide high-quality care for patients throughout all stages of life.