Abstract
Collins A, McLachan SA, Philip J: Community knowledge of and attitudes to palliative care: A descriptive study. Palliat Med 2019 [Epub ahead of print]; DOI:10.1177/0269216319888371
Palliative care (PC) is predominantly accessed late in the course of an illness, despite evidence to suggest the benefits of early engagement. Strategies are required to reduce the barriers to the delivery of PC. The aim of this cross-sectional survey study was to describe community understandings of and attitudes to PC and explore characteristics significantly associated with favorable attitudes toward PC. A community-based sample of consecutive English-speaking adults who volunteered their participation in response to a study advertisement distributed online through established community groups were enrolled in the study. Results demonstrated that a total of 421 participants (75% female, mean age 51 ± 15.1) reported a median of at least three misperceptions of PC. Older age, previously undertaking a caregiving role, knowing someone who had received PC and reporting more accurate knowledge of PC significantly predicted favorable attitudes to PC. Other factors typically associated with health literacy such as tertiary education, working at a medical facility and speaking a language other than English at home were not predictive. The authors conclude that gaps in knowledge about PC exist in community, which may limit citizen's potential access to quality care in the event of serious illness. These results point to a role for public education programs, which may, in turn, also shift attitudes to PC.
Patel P, Lyons L: Examining the knowledge, awareness, and perceptions of palliative care in the general public over time: A scoping literature review. Am J Hospice Palliat Care 2019 [Epub ahead of print]; DOI:10.1177/1049909119885899
The field of PC is growing as the world population ages and the burden of chronic diseases increases. Thus, it is important that the general public is knowledgeable about PC and the benefits PC provides. The aim of this study was to describe the public's knowledge, awareness, and perceptions of PC and determine whether these have changed over time. A scoping literature review was conducted from 1968 to May 2019 using PubMed, EMBASE, and MEDLINE databases. Results demonstrated that 13 studies met inclusion criteria that originated from the United States, Canada, Scotland, Italy, New Zealand, Ireland, United Kingdom, Korea, and Sweden between years 2003 and 2019. Participants were adults and mostly <64 years, women, and Caucasian. Most studies reported the public having poor knowledge (7/9 articles) and awareness (4/6 articles) of PC for the past 16 years. Top characteristics associated with increased levels of knowledge and/or awareness of PC included women (6/8 articles), age 40+ (6/8 articles), experience with a close friend and/or relative requiring PC (4/8 articles), and working in health care and/or PC (4/8 articles). The most common perceptions of PC were associated with patients who have terminal illnesses and end-of-life care. Participants commonly received information about PC from the media, having a close friend or relative requiring PC, and working in a health care setting. The authors conclude that the public has poor knowledge and awareness about PC and several misperceptions exist. These findings have remained constant over time despite growth in the field of PC, which highlights the strong need for focused educational interventions.
Norte N, Stepan K: Advance care planning conversations in the oncology setting: Tips from the experts. J Canc Educ 2019 [Epub ahead of time]; DOI:10.1007/s13187-019-01631-1
Advance care planning (ACP) has been identified as a fundamental part of every patient's total health care plan and is actively supported by several health care organizations. Despite these endorsements, however, having ACP conversations has not come easily for physicians. Training future physicians should include practical ways to address this issue. The authors approached 50 physicians at an oncology hospital who were identified as having the most ACP conversations. Twenty-six percent participated in a survey that was sent out electronically through Qualitrics. All answers were recorded online and responses were collected and analyzed according to thematic analysis methodology. Major themes were noted and summarized for each of the survey's 10 questions, resulting in how the physicians can successfully plan for and initiate ACP conversations with their patients and families. Themes touched upon self-awareness, one's outlook on the value of life, and the importance of death as part of the care continuum. A physician's own perception of the value of ACP conversations greatly influences them having those conversations. Furthermore, it is key that the physician understands and be aware of the patient's perspective regarding their cancer and how it impacts them. This dynamic will then allow the physician to better align their plan of care with the treatment goals and expectations of the patient. Future training programs should incorporate these suggestions.
Asano R, Abshire M, Dennison-Himmelfarb C, Davidson PM: Barriers and facilitators to a ‘good death’ in heart failure: An integrative review. Collegian 2019 [Epub ahead of print]; DOI:10.1016/j.colegn.2019.09.010
Heart failure (HF) is the final common pathway of many cardiovascular diseases, and yet many individuals with HF die hospitalized, suffering needlessly, and experiencing what could be termed a “bad death.” Although it is essential to address the wishes of individuals and their families in improving the quality of end-of-life care for patients with HF, their unmet needs remain poorly understood. The aim of this study was to systematically review the literature describing a good death or end-of-life care in HF and to synthesize identified studies to describe how elements of HF care may contribute to a good death. PubMed and Scopus were searched from January 2001 to April 2018. The method of Whittemore and Knafl guided this review to identify emergent themes. Results demonstrated that of the 436 studies identified, 43 met the inclusion criteria. Five themes associated with end-of-life care in HF and a good death were generated: (1) location of death, (2) preferred care, (3) PC utilization, (4) interventions to improve the likelihood of a good death, and (5) the intersection of individual, family, health care providers, and community-level factors. This integrative review highlights several factors that prevent patients with HF from receiving PC, such as difficulty predicting mortality, late referral misconception of the role of PC, and low availability of resources. The authors conclude that this review has identified modifiable barriers and facilitator of a good death and emphasized the importance of considering the intersection of patient, provider, and health care system issues in facilitating a good death for patients with HF.
Mosoiu D, Rogozea L, Alison L, et al.: Palliative care in heart failure. A public health emergency. Am J Therap 2019 [Epub ahead of print]; DOI:10.1097/MJT.0000000000001067
PC is the holistic care of patients with life-limiting illnesses focused on relief of suffering and maximizing quality of life for patients and their families. Patients with HF are the largest group eligible for PC services, but only a small percentage of them receive PC. The optimal content and method of delivery of PC interventions to HF patients in resource-limited countries remain unknown. The integration of PC into existing HF disease management continues to be a challenge. In this study, PubMed was searched to identify articles on the topic published in the past five years (2014 to April 2019). One hundred thirty-six articles were identified—14 articles out of them were included in the revision. Results demonstrated that research concerning PC in HF is still scarce and comes predominantly from developed countries. PC in HF improves patients' and caregivers' outcomes in terms of dyspnea, sleep, depression, communication, coping, and caregiving burden. Specialized home-based PC services have a positive impact on patients' physical and emotional wellbeing while decreasing utilization of medical services. Fatigue, dyspnea, and pain are frequent symptoms. Evidence concerning use of opioids for dyspnea is increasing. Family caregivers offer a considerable amount of care during the disease trajectory. There is often incongruence between the caregiver's and the patient's wishes in terms of treatment decisions and preferences. Caregivers should be assessed for risk and supported in their roles in care management and care coordination. The authors conclude that because of the unpredictability of the disease and difficulty in prognostication, PC should be introduced at the point of diagnosis of HF. Basic education in PC needs to be introduced early in the training of cardiology staff, focused on concept definition, differencing PC and terminal care, symptom management, communication, and decision making.