Introduction : Les personnes atteintes de cancer et vivant à domicile sont de plus en plus en nombreuses. Les proches aidants sont des acteurs importants auprès de la personne malade. Ils sont confrontés, à ce titre, aux douleurs cancéreuses sévères de leur proche. La douleur est l’un des symptômes les plus fréquents en cancérologie, souvent insuffisamment soulagée. L’objectif de cette étude était de mieux connaître la perception qu’ont les proches aidants de leur rôle à domicile, particulièrement vis-à-vis de la douleur liée au cancer et de ses traitements.
Méthode : Une étude qualitative a été menée au moyen d’entretiens semi-dirigés auprès de proches aidants de patients atteints d’un cancer en phase palliative spécifique ou symptomatique et présentant des douleurs nécessitant l’administration d’opioïdes. Les thèmes explorés ont été la communication, l’anticipation, la coordination, l’accompagnement et l’adaptation.
Résultats : Douze entretiens ont été réalisés. La plupart des proches aidants disent se rendre disponibles pour le confort du patient, la surveillance des symptômes et l’usage des opioïdes. Ces derniers sont sources de nombreux questionnements. En outre, les proches aidants se sentent responsables de tout faire et de s’organiser pour faire face à la douleur. Enfin, ils se considèrent comme les mieux placés pour soutenir au quotidien le patient, tant pour les aspects pratiques que socio-affectifs. Les professionnels de santé, en particulier les infirmiers libéraux, sont des éléments importants sur lesquels ils peuvent s’appuyer.
Discussion : L’enjeu pour les proches aidants est de conforter leur rôle dans le soulagement des douleurs du malade à domicile. Communiquer, coordonner les différents acteurs et participer aux prises de décision sont les moyens d’y parvenir mais ces fonctions sont variables dans le temps. Il convient de trouver l’équilibre dans la charge qui leur incombe. Cela invite les professionnels à être attentifs à leurs besoins en proposant une aide flexible et adaptée à chaque situation.
Eight focus groups were conducted in four public hospitals in Madrid to explore healthcare professionals' perceptions of advance directives (ADs) in order to improve the understanding of their lack of success among physicians and patients. A purposive sample of sixty healthcare professionals discussed ADs and reasons for their infrequent use. Three main themes were identified: perceptions about their meaning, appraisals of their use in clinical practice, and decision-making about them. Healthcare professionals perceived a lack of clarity about their definition and implementation. There is insufficient awareness of their efficacy in improving the quality of clinical relationships and decision-making, and they are often perceived only as a bureaucratic procedure. Advance directives are not integrated in the clinical practice of Madrid's healthcare specialist services because their application is exceedingly complex, because of insufficient education about them (for both professionals and citizens), and because of lack of procedural clarity. Consequently, healthcare professionals are not aware of how ADs could improve clinical decision-making, of when and for whom their use is appropriate, and of who has responsibility for providing ADs-related information to patients. These circumstances contribute to patients' lack of interest in completing these documents and to physicians' sceptical views about their usefulness.
CONTEXT: Children with life-shortening serious illnesses and medically complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most.
OBJECTIVE: To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home.
METHODS: Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains.
RESULTS: Forty-seven parents participated. Overall, highest-rated domains included Physical Aspects of Care: Symptom Management, Psychological/EmotionalSupportfor the Child, and Care Coordination. Lowest-rated domains included Spiritual and Religious Aspects of Care and Cultural Aspects of Care. In exploratory analyses, parents who had other children rated the Psychological/Emotional Aspects of Care for the Sibling(s) domain significantly higher than parents who did not have other children (P=0.02). Furthermore, bereaved parents rated the CaregiverSupportat the End of Life domain significantly higher than parents who were currently caring for their child (P=0.04). No other significant differences in domain ratings were observed.
CONCLUSIONS: Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.
Background: General Practitioners (GPs) are the main providers of primary palliative care (PPC). At the same time they are the main initiators of specialised palliative homecare (SPHC). In Germany, little is known about factors which influence GPs in their involvement of SPHC. Aim of our study is to identify factors that drive GPs to give value to and involve SPHC.
Methods: A cross-sectional survey was performed. In 2018, questionnaires were mailed to 6000 randomly selected GPs from eight German federal states, focusing on the extent of GPs’ palliative care activities and their involvement of SPHC.
Results: With a response rate of 19.4% and exclusion of GPs working in SPHC-teams, n = 1026 questionnaires were appropriate for analysis. GPs valued SPHC support as the most “important/very important” for both “technical/invasive treatment measures” (95%) and availability outside practice opening hours (92%).
The most relevant factor influencing perceived SPHC-importance was GPs’ self-reported extent of engagement in palliative care (ß = - 0.283; CI 95% = - 0.384;-0.182), followed by the perceived quality of utilised SPHC (ß = 0.119; CI 95% = 0.048;0.190), involvement in treatment of palliative patients after SPHC initiation (ß = 0.088; CI 95% = 0.042;0.134), and conviction that palliative care should be a central part of GPs’ work (ß = - 0.062; CI 95% = - 0.116;-0.008). Perceived SPHC-importance is also associated with SPHC-referrals (ß =0.138; p < 0.001). The lower the engagement of GPs in palliative care, the more they involve SPHC and vice versa.
Conclusions: GPs with low reported activity in palliative care are more likely to initialise SPHC for palliative care activities they do not deliver themselves for various reasons, which might mean that the involvement of SPHC is substitutive instead of complementary to primary palliative care. This finding and its interpretation should be given more attention in the future policy framework for (specialised) palliative homecare.
BACKGROUND: A previous study found that care provided by a nurse practitioner (NP) during oncological or palliative care was highly regarded. These patients, however, were considered a special population due to suffering from life-threatening illnesses. It remains unclear whether the results are transferable to patients with chronic conditions. Patient's perceptions of the quality of NP care have reflected that it equals or exceeds that of physicians, but the root causes of these remarks remain unclear.
PURPOSE: To describe the difference in perception of NP care by patients suffering from chronic heart failure (CHF) or inflammatory bowel disease (IBD) in contrast with NP oncological or palliative care.
METHODOLOGICAL ORIENTATION: A qualitative study from a phenomenological perspective was conducted. Data were analyzed using Colaizzi's seven-step method and the Metaphor Identification Procedure.
SAMPLE: In 2018 and 2019, 16 outpatients receiving CHF or IBD care were interviewed.
CONCLUSIONS: Although chronic and life-threatening diseases may differentiate patients' perspectives, it can be generally stated that patients value NPs to be reliable, helpful, and empathic. Patients feel empowered, at peace and in control thanks to integrated care by dedicated experts.
IMPLICATIONS FOR PRACTICE: Outpatients highly appreciate the "communicator role" and "skilled companionship" performed by NPs, to fulfill their needs for attention to the "complete picture." Therefore, further consideration of these competencies is recommended.
OBJECTIVES: To explore perceptions, experiences and expectations with respect to palliative care of patients with severe mental illness (SMI) and an incurable, life-limiting chronic illness.
METHODS: Face-to-face semistructured interviews were conducted with 12 patients (10 of them living in a mental healthcare institution) with severe mental and physical health issues in the Netherlands. A semistructured interview guide was used to elicit perceptions of, experiences with and expectations regarding palliative care. Data were analysed using inductive content analysis.
RESULTS: Analysis of the data revealed eight categories: perceptions on health and health issues, coping with illness and symptoms, experiences with and wishes for current healthcare, contact with relatives and coresidents, experiences with end of life of relatives and coresidents, willingness to discuss end of life and death, wishes and expectations regarding one's own end of life and practical aspects relating to matters after death. These categories were clustered into two separate themes: current situation and anticipation of end of life. Interviewees with SMI appeared not accustomed to communicate about end-of-life issues, death and dying due to their life-threatening illness. They tended to discuss only their current situation and, after further exploration of the researcher, the terminal phase of life. They seemed not engaged in their future palliative care planning.
CONCLUSIONS: Findings of this study highlight inadequacies in advance care planning for patients with SMI. Results suggest using values, current and near wishes, and needs as a starting point for establishing a gradual discussion concerning goals and preferences for future medical and mental treatment and care.
OBJECTIVE: to understand the meanings attributed by nurses about conditions that interfere in defending of the elderly's autonomy on the terminality of life in the context of hospitalization.
METHOD: qualitative and exploratory study, which applied the Grounded Theory. Data were collected between November 2016 and May 2017, in the internal medicine wards of a hospital in Rio de Janeiro, Brazil, through non-participant observation and semi-structured interviews. Three sample groups composed of ten nurses, eight doctors, and 15 nursing technicians were investigated.
RESULTS: the conditions are related to the medical power, subordination of nurses, family influences; the functional decline of the elderly; and biomedical model. Final considerations: the elderly's autonomy is veiled and violated since their abilities are subjugated, and the family's will and professional paternalism may prevail. However, this right must guide contemporary care models and integrate palliative care.
Objective: The aim of this study was to examine the effectiveness and efficiency of interprofessional case conferences on home-based end-of-life care to bridge perceptions gaps regarding ethical dilemmas among different healthcare professionals and analyze essential issues extracted the interprofessional discussions.
Patients and Methods: The participants could spend only a limited amount of time after their working hours. Therefore, we shortened and simplified each of three case scenarios so that the discussions do not last longer than 90 minutes. For the case conferences, we selected 3 cases, which entailed the following ethical dilemmas pertaining to home-based end-of-life care: refusal of hospital admission, passive euthanasia, and emergency transport. Participant responses were audio-recorded, transcribed, and analyzed using qualitative content analysis and Jonsen's four topics approach.
Results: A total of 136 healthcare professionals (11 physicians, 35 nurses, and 90 care workers) participated in the case conferences. The physicians, nurses, and care workers differed in their perceptions of and attitudes toward each case, but there were no interprofessional conflicts. Despite the short duration of each case conference (90 minutes), the participants were able to discuss a wide range of medical ethical issues that were related to the provision of appropriate home-based end-of-life care to older adults. These issues included discrimination against older adults (ageism), self-determination, an unmet desire for caregiver-patient communication, insufficient end-of-life care skills and education, healthcare costs, and legal issues.
Conclusion: The physicians, nurses, and care workers differed in their perceptions of and attitudes toward each case, but there were no interprofessional conflicts.
BACKGROUND: Quality of care for patients dying in hospital remains suboptimal. A major problem is the identification of valid sources of information about the views and experiences of dying patients and their relatives.
AIM: This study aimed to estimate the agreement on quality of end-of-life care from the perspectives of bereaved relatives, physicians and nurses interviewed after the patients' death.
DESIGN: In this prospective study, we interviewed, after the patient death, the bereaved relatives, the attending physicians and the reference nurses, using the Toolkit After-death Family Interview and the View Of Informal Carers-Evaluation of Services (VOICES). Agreement was assessed using Lin's concordance correlation coefficient, Cohen's kappa, overall concordance correlation coefficient and Fleiss' kappa.
SETTING/PARTICIPANTS: We enrolled a consecutive series of 40 adult patients who died of cancer between January and December 2016 who had spent at least 48 hours in the medical oncology ward of the Santa Maria Hospital of Reggio Emilia, Italy.
RESULTS: We interviewed all physicians and nurses, and 26 (65.0%) out of 40 relatives. We found a poor agreement on overall quality of care among the three proxies (+0.21; -0.04 to 0.44), between relatives and nurses (+0.05; -0.39 to +0.47), and between relatives and physicians (+0.25; -0.13 to +0.57). A similar poor agreement was observed for all the other Toolkit and VOICES scales.
CONCLUSIONS: The agreement was rather poor, confirming previous results in different settings. Information from professional proxies should not be used for assessing the quality of care or for estimating missing information from bereaved relatives.
OBJECTIVE: The objectives of this study were to identify barriers to end-of-life discussion with advanced cancer patients and their families as perceived by oncologists, certified/specialized nurses in cancer nursing (hereafter, collectively referred to as 'nurses') and medical social workers, as well as to clarify their opinions about effective strategies to facilitate end-of-life discussion.
METHODS: A questionnaire survey was distributed to 4354 medical professionals working at 402 designated regional cancer hospitals in Japan. Responses were obtained from 494 oncologists (valid response rate 30.7%), 993 nurses (46.7%) and 387 medical social workers (48.1%).
RESULTS: Among the barriers to end-of-life discussion with advanced cancer patients, factors related to patients and families, such as 'Family members' difficulty accepting loved one's poor prognosis', were recognized as the most important issues, which was the common view shared across the three types of medical professionals who participated in this study. Nurses and medical social workers were significantly more likely than oncologists to recognize as important issues 'Health care team disagreement about goals of care' and 'Lack of training to have conversations for end-of-life discussion'. To facilitate end-of-life discussion, 'providing mental and emotional support for the patients and their families after end-of-life discussion' was needed most as perceived by the respondents regardless of their profession.
CONCLUSIONS: Barriers impeding end-of-life discussion were factors related to patients and their families, and oncologists' close cooperation with nurses and medical social workers is important in providing emotional support for patients and families. To facilitate end-of-life discussion, it is important to share information on patients' prognosis and goals for treatment among oncologists and other medical professionals, as well as strengthen communication skill of these medical professions.
OBJECTIVE: Palliative care providers may face questions from patients and relatives regarding the heritability of cancers. Implications of such discussions for providers have been little explored. This study aimed to gather palliative care providers' views on their main needs, roles, and ethical concerns regarding cancer family history discussions.
METHOD: The palliative care providers who participated in the 2015 and 2017 annual meetings of the Quebec Palliative Care Association were approached to complete a web-based questionnaire. Study participants answered the questionnaire between November 2016 and July 2017. They were asked to identify the most facilitating factor for cancer family history discussions, as well as their most important knowledge needs, potential role, and ethical concerns. Descriptive analyses were conducted.
RESULTS: Ninety-four palliative care providers answered the questionnaire. Access to specialized resources to obtain information and protocols or guidelines were considered the most facilitating factors for cancer family history discussions by 32% and 20% of providers, respectively. Knowledge of hereditary cancers was the most relevant educational need for 53%. Thirty-eight per cent considered essential to be informed about their rights and duties regarding cancer family history discussions. Being attentive to patients' concerns and referring families to appropriate resources were identified as the most relevant roles for palliative care providers by 47% and 34% of respondents, respectively. Fifty-eight per cent agreed that cancer family history discussions should be initiated only if beneficial to family members.
SIGNIFICANCE OF RESULTS: Education on hereditary cancers made consensus among palliative care providers as the most important knowledge need regarding discussing cancer family history at the end of life. Nonetheless, other less commonly expressed needs, including access to genetics specialists, protocols, or guidelines, and awareness of provider rights and duties concerning such discussions, deserve attention. Answering providers' needs might help optimize cancer predisposition management in palliative care.
BACKGROUND: Palliative care is increasingly becoming an accepted treatment choice for many individuals diagnosed with end-stage kidney disease (ESKD). Yet, its utilisation is non-existent in many lower- and middle-income countries (LMICs). This study explored the perceptions of individuals with ESKD and their informal caregivers on palliative care as a treatment option for the disease in Ghana.
METHODS: This was a phenomenological study, with an in-depth analysis of data collected from nine individuals with ESKD and six informal caregivers through individual, face-to-face semi-structured interviews. The study was conducted in two renal centres within the Kumasi metropolis, Ghana among individuals with ESKD seeking care from both renal centres and their informal caregivers.
RESULTS: Three main themes were derived from this study - motivation for initiating haemodialysis, facing realities of haemodialysis, and considering palliative care. Participants felt that haemodialysis (HD) was not meeting their health expectations and demonstrated a general willingness to utilise palliative care if it would reduce suffering.
CONCLUSIONS: This study has shown that individuals with ESKD or their informal caregivers would consider palliative care services, if available. It paves the way for discussions about palliative care for ESKD to begin across renal centres within Ghana and other similar settings. Exploring perspectives of clinicians in such settings could inform strategies on how to implement palliative care for ESKD management in such settings.
BACKGROUND: The early integration of palliative care significantly improves quality of life for children with cancer. However, cultural, structural, and socioeconomic barriers can delay the integration of palliative care into cancer care, particularly in low-income and middle-income countries. To date, little is known regarding the timing of and barriers to palliative care integration in Eurasia.
METHODS: The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey evaluates physician perceptions regarding palliative care integration into pediatric oncology in Eurasia. This evidence-based survey was adapted to the regional context; iteratively reviewed by US and regional panelists; and piloted in English, Russian, and Mongolian. After distribution to physicians caring for children with cancer, statistical analysis was complemented by qualitative analysis of open-ended responses.
RESULTS: A total of 424 physician responses were received from 11 countries in the Eurasian region. Study findings demonstrated wide variability in access to palliative care experts across countries (18%-96%), with the majority of providers (64%) reporting that the initial palliative care consultation typically occurs when curative options are no longer available. Providers desired an earlier initial palliative care consultation than what currently occurs in their setting (P < .001). Primary barriers to timely consultation included limited access to palliative care services and specialists, lack of physician education, and perceived family resistance.
CONCLUSIONS: The current study is the first to identify physician perceptions of the delayed timing of palliative care integration into childhood cancer care and associated barriers in Eurasia. These findings will inform the development of targeted interventions to mitigate local structural and cultural barriers to access and facilitate earlier palliative care integration in the region.
AIMS: To test the feasibility of surveying bereaved next-of-kin in the South Island about their perceptions of end-of-life care for people over 18 years of age; to report results; and to identify issues for future research.
METHOD: The study used the VOICES (Views of Informal Carers Evaluation of Services) questionnaire from the UK, adapted for use in Aotearoa New Zealand. Identification of next-of-kin for all South Island deaths September-November 2017 was undertaken by a commercial firm specialising in such work. Addresses of next-of-kin were sought from the Electoral Roll, with 1,813 eligible people identified and 272 (15.0%) next-of-kin unable to be traced. Surveys were posted out once only, with options to complete by mail, online, by telephone or with a face-to-face interview.
RESULTS: Of the 1,541 surveys distributed, 514 (33.4%) were completed. Results confirmed the suitability of the locally modified VOICES instrument and research process. The quality of care overall was rated most highly in hospice or own home, but only a minority were able to die in these settings. Nevertheless, relatives indicated that most people died 'in the best place'.
CONCLUSIONS: The VOICES questionnaire is acceptable to respondents and there are viable methods for seeking a population sample. Aspects of the questionnaire require modification before wider use. The information obtained can help district health boards, hospices other healthcare providers, and consumers in planning for end-of-life care.
OBJECTIVE: The purpose of this study was to describe differences and identify education gaps in the perception of palliative care (PC) between neonatal care providers in a Level IV Neonatal intensive care unit.
STUDY DESIGN: This is a descriptive survey mixed methods study. Email surveys were sent to social workers, pharmacists, dieticians, nurses, respiratory therapists, fellows and faculty in November of 2018. Total number of respondents was 181 with a response rate of 56%.
RESULTS: Statistically significant differences between faculty and non-faculty were found in regards to benefits of early PC consults, need for automatic consults for certain diagnosis and the frequency of PC consults.
CONCLUSION: The perception of PC differs greatly between faculty and non-faculty. Educational initiatives surrounding PC and communication along with instituting automatic consults for certain diagnosis could help bridge this difference in perception and educational gap.
IMPORTANCE: In the Kilimanjaro region of Tanzania, there are no advance care planning (ACP) protocols being used to document patient preferences for end-of-life (EoL) care. There is a general avoidance of the topic and contemplating ACP in healthcare-limited regions can be an ethically complex subject. Nonetheless, evidence from similar settings indicate that an appropriate quality of life is valued, even as one is dying. What differs amongst cultures is the definition of a 'good death'.
OBJECTIVE: Evaluate perceptions of quality of death and advance EoL preparation in Moshi, Tanzania.
DESIGN: 13 focus group discussions (FGDs) were conducted in Swahili using a semi-structured guide. These discussions were audio-recorded, transcribed, translated, and coded using an inductive approach.
SETTING: Kilimanjaro Christian Medical Centre (KCMC), referral hospital for northern Tanzania.
PARTICIPANTS: A total of 122 participants, including patients with life-threatening illnesses (34), their relatives/friends (29), healthcare professionals (29; HCPs; doctors and nurses), and allied HCPs (30; community health workers, religious leaders, and social workers) from KCMC, or nearby within Moshi, participated in this study.
FINDINGS: In characterizing Good Death, 7 first-order themes emerged, and, of these themes, Religious & Spiritual Wellness, Family & Interpersonal Wellness, Grief Coping & Emotional Wellness, and Optimal Timing comprised the second-order theme, EoL Preparation and Life Completion. The other first-order themes for Good Death were Minimal Suffering & Burden, Quality of Care by Formal Caregivers, and Quality of Care by Informal Caregivers.
INTERPRETATION: The results of this study provide a robust thematic description of Good Death in northern Tanzania and they lay the groundwork for future clinical and research endeavors to improve the quality of EoL care at KCMC.
Objective: Patients with cancer face numerous problems at the end of their lives, which makes palliative care necessary for a peaceful death. Considering the important role nurses play in the provision of end-of-life care, the present study was conducted to study the effect of a traditional training method on nurses' perception of and clinical competency in providing end-of-life care to patients with cancer in a hospital in Southeastern Iran.
Methods: This was a pilot clinical trial in which the nurses in an oncology ward were allocated to two groups, experimental (n = 24) and control (n = 33), using a table of random numbers. The experiment group received three sessions of workshop training. The nurses' perception and clinical competency were measured before and 3 months postintervention.
Results: The results showed the perception scores in the experimental and control groups to be 171.75 ± 19.54 and 170.03 ± 17.03 before education and 176.16 ± 19.54 and 176.12 ± 16.12 postintervention, respectively. The scores of clinical competency were 98.71 ± 10.24 and 99.58 ± 12.17 before education and 101.5 ± 14.67 and 104.97 ± 12 postintervention in the experimental and control groups, respectively. According to the findings, neither of the groups showed a significant difference between pre- and post-intervention in terms of perception of or clinical competency in end-of-life care.
Conclusions: A traditional training method such as workshop training cannot cause long-term improvement in nurses' end-of-life care perception or clinical competency. It seems that nurses would benefit from acquiring cognitive and behavioral skills and knowledge through a more continuous form of instruction delivered through modern blended educational methods.
BACKGROUND: Studies have shown gaps in prognostic understanding among patients with cancer. However, few studies have explored patients' perceptions of their treatment goals versus how they perceive their oncologist's goals, and the association of these views with their psychological distress.
METHODS: We conducted a cross-sectional study of 559 patients with incurable lung, gastrointestinal, breast, and brain cancers. The Prognosis and Treatment Perception Questionnaire was used to assess patients' reports of their treatment goal and their oncologist's treatment goal, and the Hospital Anxiety and Depression Scale was used to assess patients' psychological symptoms.
RESULTS: We found that 61.7% of patients reported that both their treatment goal and their oncologist's treatment goal were noncurative, whereas 19.3% reported that both their goal and their oncologist's goal were to cure their cancer, 13.9% reported that their goal was to cure their cancer whereas their oncologist's goal was noncurative, and 5% reported that their goal was noncurative whereas their oncologist's goal was curative. Patients who reported both their goal and their oncologist's goal as noncurative had higher levels of depression (B=0.99; P=.021) and anxiety symptoms (B=1.01; P=.015) compared with those who reported that both their goal and their oncologist's goal was curative. Patients with discordant perceptions of their goal and their oncologist's goal reported higher anxiety symptoms (B=1.47; P=.004) compared with those who reported that both their goal and their oncologist's goal were curative.
CONCLUSIONS: One-fifth of patients with incurable cancer reported that both their treatment goal and their oncologist's goal were to cure their cancer. Patients who acknowledged the noncurative intent of their treatment and those who perceived that their treatment goal was discordant from that of their oncologist reported greater psychological distress.
The objective of this study was to understand the organizational context of nurses' use of advance care plans (ACPs). We use a modified version of Bandera's social cognitive theory model to understand relationships between organizational constructs such as experience with ACPs and satisfaction with organizational support and oncology nurses' knowledge, behaviors, and perceptions around ACPs. The sample included practicing registered nurses with a major focus in oncology who were members of the Oncology Nursing Society in the United States, and nurses at medical hospital or community care settings were included. Institutional review board approval was obtained, and permission was granted from the oncology nursing organization for online surveys. A validated ACP survey was used to measure nurses' experiences and perceptions of working with ACP. Perceptions of ACP by patients, vicarious experience with ACP, direct experience of ACP, having received training, and perceptions of organizational support for ACP were all predictive of total ACP behaviors in the workplace. The final regression model had 3 independent variables and accounted for 33% of the variance in total ACP behaviors. Both vicarious and direct experience with ACP was associated with ACP behaviors in workplaces. This implies the need for more vicarious and direct training experiences, as well as organization support, to build self-efficacy to perform ACP.
Background: Although access to advance care planning (ACP), palliative care, and hospice has increased, public attitudes may still be barriers to their optimal use.
Purpose: To synthesize empirical research from disparate sources that describes public perceptions of ACP, palliative care, and hospice in ways that could inform public messaging.
Data Sources: Searches of PubMed and other databases were made from January 2011 to January 2020.
Study Selection: Studies reporting survey or interview data with the public that asked specifically about awareness and attitudes toward ACP, palliative care, or hospice were included.
Data Extraction and Synthesis: Two reviewers independently screened citations, read full texts, and performed data abstraction. Twelve studies met inclusion criteria and included >9800 participants. For ACP, 80% to 90% of participants reported awareness, and a similar proportion considered it important, but only 10% to 41% reported having named a proxy or completed a written document. For palliative care, 66% to 71% of participants reported no awareness of palliative care, and those who reported awareness often conflated it with end-of-life care. However, after being prompted with a tested definition, 95% rated palliative care favorably. For hospice, 86% of participants reported awareness and 70% to 91% rated it favorably, although 37% held significant misconceptions.
Limitations: A limited number of studies met inclusion criteria, and some were published in nonpeer reviewed sources. The studies reflect public perceptions pre-COVID-19.
Conclusion: Consumer perceptions of ACP, palliative care, and hospice each have a distinct profile of awareness, perceptions of importance, and reports of action taking, and these profiles represent three different challenges for public messaging.