Purpose: Misconceptions regarding activity and toxicity of therapeutic interventions are common among cancer patients. There is little knowledge about the factors that contribute to a more realistic perception by patients.
Methods: This pilot study was designed as a prospective questionnaire survey and included 101 therapy-naïve patients treated at the Division of Oncology, Medical University of Vienna. After obtaining written informed consent, patients’ expectations about treatment aims, side effects and the satisfaction with their oncologic consultation were interrogated before the first treatment cycle by questionnaires.
Results: Of 101 patients, 53 (53%) were female and 67/101 (66%) were treated with curative attempt in an adjuvant or neo-adjuvant setting. The most common diagnoses were lung cancer (31%) and breast cancer (30%). Although 92% of patients were satisfied with the information given by their oncologist, palliative patients were more likely to declare that not everything was explained in an intelligible manner (p = 0.01). Patients with a first language other than German stated more often that their physician did not listen carefully enough (p = 0.02). Of 30 patients, 26 (87%) receiving chemotherapy with palliative intent believed that their disease was curable. Concerning adverse events, female patients anticipated more frequently hair loss (p = 0.003) and changes in taste (p = 0.001) compared to men. Patients under curative treatment were more likely to expect weight loss (p = 0.02) and lack of appetite (p = 0.01) compared to patients with palliative treatment intent.
Conclusion: In conclusion, cancer patients were satisfied with the patient-doctor communication. This prospective study aggregated patients’ concerns on side effects and the perception of therapeutic goals in therapy-naïve patients. Of note, the majority of patients treated in the palliative setting expected their treatment to cure the disease.
OBJECTIVE: Despite the increased focus on improving advance care planning (ACP) in African Americans through community partnerships, little published research focused on the role of the African American church in this effort. This study examines parishioner perceptions and beliefs about the role of the church in ACP and end-of-life care (EOLC).
METHOD: Qualitative interviews were completed with 25 church members (parishioners n = 15, church leader n = 10). The coding of data entailed a direct content analysis approach incorporating team experts for final themes.
RESULTS: Seven themes emerged: (1) church role on end-of-life, (2) advocacy for health and well-being, (3) health literacy in EOLC, (4) lay health training on ACP and EOLC, (5) church recognized as a trusted source, (6) use of church ministries to sustain programs related to ACP and EOLC, and (7) community resources for EOLC needs.
SIGNIFICANCE OF RESULTS: The church has a central role in the African American Community. These findings suggest that involving African American churches in ACP and EOLC training can have a positive effect on facilitating planning and care during illness, dying, and death for their congregants.
Importance: Medicare Advantage (MA) insures an increasing proportion of Medicare beneficiaries, but evidence is lacking on patient or family perceptions of the quality of end-of-life care in MA vs traditional Medicare.
Objective: To determine if there is a difference in quality of care reported by family and friends of individuals who died while insured by MA vs traditional Medicare at the end of life.
Design, Setting, and Participants: This cross-sectional study used the 2011 to 2017 Medicare-linked National Health and Aging Trends Study to conduct population-based survey research representing 8 668 829 Medicare enrollees. Included individuals were 2119 enrollees who died when aged 65 years or older, with quality of care reported by a family member or close friend familiar with the individual’s last month of life. Analysis was conducted in July 2020.
Exposures: MA enrollment at the time of death or before hospice enrollment.
Main Outcomes and Measures: Perception of end-of-life care was measured with 9 validated items, with the primary outcome variable being overall care rated not excellent. We conducted a propensity score–weighted multivariable model to examine the association of each item with MA vs traditional Medicare enrollment. The propensity score and multivariable model included covariates capturing demographic and socioeconomic factors, function and health, and relationship of the respondent to the individual who died. The sample was then stratified by hospice enrollment and setting of care in the last month.
Results: Of 2119 people in the sample, 670 individuals were enrolled in MA at the time of death or prior to hospice (32.7%) and 1449 were enrolled in traditional Medicare (67.3%). In survey-weighted percentages, 53.6% (95% CI, 51.0% to 56.1%) were women and 43.4% (95% CI, 41.5% to 45.3%) were older than 85 years at the time of death. In the adjusted model, family and friends of individuals in MA were more likely to report that care was not excellent (odds ratio, 1.28; 95% CI, 1.01 to 1.61; P = .04) and that they were not kept informed (odds ratio, 1.48; 95% CI, 1.06 to 2.05; P = .02). For those in nursing homes, there was an estimated probability of 57.2% of respondents reporting that care was not excellent for individuals with traditional Medicare, compared with 77.9% of respondents for individuals with MA (marginal increase for those in MA, 0.21; 95% CI, 0.08 to 0.32; P = .001).
Conclusions and Relevance: In this cross-sectional study of people who died while enrolled in Medicare, friends and family of those in MA reported lower-quality end-of-life care compared with friends and family of those enrolled in traditional Medicare. These findings suggest that, given the rapid growth of MA, Medicare should take steps to ensure that MA plans are held accountable for quality of care at the end of life.
BACKGROUND: Most older people wish to live in the familiar surroundings of their own home until they die. Knowledge concerning dignity and dignity loss of home-dwelling older women living with incurable cancer should be a foundation for quality of care within municipal healthcare services. The informal caregivers of these women can help increase the understanding of sources related to dignity and dignity loss.
AIM: The aim of this study was to explore informal caregivers' perceptions of sources related to dignity and dignity loss in end-of-life of older home-dwelling women with incurable cancer.
RESEARCH DESIGN AND METHOD: The study was founded upon Gadamer's philosophical hermeneutics. In-depth interviews with 13 informal caregivers were carried out, and four participant observations were performed during home meetings.
ETHICAL CONSIDERATION: The study was based on voluntary participation, informed consent, confidentiality and the opportunity to withdraw at any time. The Norwegian Social Science Data Services approved the study.
RESULTS: Three main sources important in preserving the older women's dignity were identified: maintaining one's self-concept, remaining hopeful and sustaining freedom of choice. We also identified three main sources that lead to dignity loss: Sensing loss of human value, experiencing absence of gentleness and feelings of being treated as an object.
DISCUSSION AND FINAL CONSIDERATIONS: On the individual level, the opportunity to maintain one's self-concept and control in life, preserved dignity, while feelings of existential loneliness led to dignity loss. On the relational level, being confirmed as worthy human beings promoted the women's dignity, whereas dignity loss was related to uncaring behaviours from healthcare professionals. On the societal level, individual decisions concerning travel situations and the place to stay when nearing end-of-life were of crucial importance. Constituting these women's living space, these perspectives should be emphasized in healthcare professionals' educational training and in the municipal end-of-life care of these patients.
Aim: To assess the educational needs, role and perceptions in palliative care issues of radiation oncologists (ROs) and trainees.
Background: 1/3 of radiotherapy patients are treated with palliative intent. Conversely, education and role that ROs have in the palliative care process are not well established, neither in terms of how they perceive their competence nor whether it is important to improve training, research and attention in palliative care issues at radiotherapy congresses.
Material and Methods: Literature systematic review in National Library of Medicine and Cochrane databases with 11 relevant issues to be identified. One doctor made first selection of articles, a second one confirmed their eligibility.
Results: 722 articles reviewed, 19 selected. 100% recognize the importance of palliative care in radiotherapy, 89.4% the need of training in palliative care for ROs, 68.4% the necessity of improving the resident programs, 63.1% the importance of skilled ROs in palliative care, 63.1% the need of better communication skills and pain management (47.3%), 52.6%, the perception of inadequate training in palliative care, 36.8% the lack of research and palliative care topics in radiotherapy meetings, 21% the absence of adequate guidelines regarding palliative care approaches, 42.1% the importance of the ROs in palliative care teams and 26.3% the lack of their involvement.
Conclusion: Palliative care has an important role in radiotherapy but it seems ROs still need more training. It is necessary to improve training programs, increment palliative care research in radiotherapy, giving more attention to palliative care themes at radiotherapy congresses. This could lead to a better integration of radiotherapists in multidisciplinary palliative care teams in the future.
Purpose: To characterize perceptions of palliative versus futile care in interventional radiology (IR) as a roadmap for quality improvement.
Methods: Interventional radiologists (IRs) and referring physicians were recruited for anonymous interviews and/or focus groups to discuss their perceptions and experiences related to palliative verse futile care in IR. Sessions were recorded, transcribed, and systematically analyzed using dedicated software, content analysis, and grounded theory. Data collection and analysis continued simultaneously until additional interviews stopped revealing new themes: 24 IRs (21 males, 3 females, 1–39 years of experience) and 7 referring physicians (3 males, 4 females, 6–14 years of experience) were analyzed.
Results: Many IRs (75%) perceived futility as an important issue. Years of experience (r = 0.60, p = 0.03) and being in academics (r = 0.62, p = 0.04) correlated with greater perceived importance. Perceptions of futility and whether a potentially inappropriate procedure was performed involved a balance between four sets of factors (patient, clinician, procedural, and cultural). These assessments tended to be qualitative in nature and are challenged by a lack of data, education, and consistent workflows. Referring clinicians were unaware of this issue and assumed IR had guidelines for differentiating between palliation and futility.
Conclusion: This study characterized the complexity and qualitative nature of assessments of palliative verses futile care in IR while highlighting potential means of improving current practices. This is important given the number of critically ill patients referred to IR and costs of potentially inappropriate interventions.
AIMS: To examine hospital nurses' perception of their actual and potential contribution to shared decision-making about life-prolonging treatment and their perception of the pre-conditions for such a contribution.
DESIGN: A qualitative interview study.
METHODS: Semi-structured face-to-face interviews were conducted with 18 hospital nurses who were involved in care for patients with life-threatening illnesses. Data were collected from October 2018-January 2019. The interviews were recorded, transcribed verbatim and analysed using thematic analysis by two researchers.
RESULTS: Nurses experienced varying degrees of influence on decision-making about life-prolonging treatment. Besides, we identified different points of contact in the treatment trajectory at which nurses could be involved in treatment decision-making. Nurses' descriptions of behaviours that potentially contribute to shared decision-making were classified into three roles as follows: checking the quality of a decision, complementing shared decision-making and facilitating shared decision-making. Pre-conditions for fulfilling the roles identified in this study were: (a) the transfer of information among nurses and between nurses and other healthcare professionals; (b) a culture where there is a positive attitude to nurses' involvement in decision-making; (c) a good relationship with physicians; (d) knowledge and skills; (e) sufficient time; and (f) a good relationship with patients.
CONCLUSION: Nurses described behaviour that reflected a supporting role in shared decision-making about patients' life-prolonging treatment, although not all nurses experienced this involvement as such. Nurses can enhance the shared decision-making process by checking the decision quality and by complementing and facilitating shared decision-making.
IMPACT: Nurses are increasingly considered instrumental in the shared decision-making process. To facilitate their contribution, future research should focus on the possible impact of nurses' involvement in treatment decision-making and on evidence-based training to raise awareness and offer guidance for nurses on how to adopt this role.
BACKGROUND: The number of centenarians in Europe is increasing; many face health impairments. Adult children often play a key role in their care, but there is a lack of research into what it means for these caregiving relatives to be confronted for many years with their parents' end of life (EOL), dying and death as well as their own advancing age.
AIM: This study aims to analyse the challenges of caregiving adult children regarding their parents' end of life and the related burdens and barriers they report.
MATERIAL AND METHODS: Semi-structured interviews were conducted with 13 caregivers following a theory-based and tested guideline. The computer-aided coding and evaluation followed the structured content analysis approach.
RESULTS: The analysis showed three main themes: 'Confronting EOL', 'Communicating about death and dying' and 'Assisting in the terminal phase'. The respondents commented on burdensome demands and concerns about the future. Further, a strong underlying presence of intra- and interpersonal conflicts relating to EOL became apparent.
DISCUSSION: The results indicate several potential burdens for centenarians' caregiving offspring. They are confronted with a double challenge resulting from the combination of their own advanced age and experiencing the burdens of their parents' very old age. Further, some participants struggled with their own unclear perspective on the future because of the relative but unclear proximity of the parent's death. Multiple conflicts and overlapping conflict dimensions emphasise the potential of the EOL topic to influence the well-being of family caregivers and care recipients.
LIMITATIONS: The convenience sample used for the study may cause limitations, for example, the fact that persons with a formally lower educational status are not represented.
CONCLUSION: The findings suggest that interventions designed for family-related care situations should include topics like 'Finiteness and grief', 'Communicating about dying and death' and 'Decisions and dispositions at EOL'.
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.
OBJECTIVE: Integrated palliative care for populations with cancer is now highly recommended. However, numerous physicians working in cancer care are still reluctant to refer patients to specialist palliative care teams. This study explores their perceptions of palliative care and factors influencing reasons to refer to specialist palliative care.
METHODS: We used a qualitative methodology based on semistructured interviews with physicians working in cancer care, in two tertiary hospitals and one comprehensive cancer centre with access to a specialist palliative care team. Forty-six physicians were invited and 18 interviews were performed until data saturation. Participants were mainly men, licensed in cancer care, 37.9 years old on average and had 13 years of professional experience. The length of interviews was on average 34 min (SD=3). Analysis was performed accordingly with the thematic analysis.
RESULTS: The data analysis found four themes: symptom management as a trigger, psychosocial support, mediation provided by interventions, and the association with terminal care or death. Palliative care integrated interventions were mainly perceived as holistic approaches that offered symptom management expertise and time. They were valued for helping in consolidating decision-making from a different or external perspective, or an 'outside look'. Several barriers were identified, often due to the confusion between terminal care and palliative care. This was further highlighted by the avoidance of the words 'palliative care', which were associated with death.
CONCLUSIONS: National policies for promoting palliative care seemed to have failed in switching oncologists' perception of palliative care, which they still consider as terminal care.
BACKGROUND: The increase in the number of pediatric patients with complex health conditions necessitates the application of advance care planning for children. Earlier, withdrawal of life-sustaining treatment was taboo in the medical society in South Korea due to the history of such practice being punishable by law, and physicians tended to pursue aggressive treatment. With changes in public opinion on end-of-life care, the Korean government enacted a new law that protect human dignity by respecting patients' self-determination and facilitating advance care planning. However, little is known about current state of advance care planning for pediatric patients. The study aimed to assess perceptions regarding advance care planning among South Korean pediatricians and clarify any differences in perception among pediatric subspecialties.
METHODS: This study was an observational cross-sectional survey that used a web-based self-report questionnaire. Participants comprised of pediatricians currently caring for children with life-limiting conditions in 2018.
RESULTS: Of the 96 respondents, 89 were included in the analysis. In a hypothetical patient scenario, more hemato-oncologists and intensivists than neonatologists and neurologists preferred to provide comfort care than aggressive treatment. While 72.2% of hemato-oncologists reported that they usually or always discuss advance care plans with parents during treatment, more than half of other pediatricians reported that they seldom do so. Furthermore, 65% of respondents said that they never discuss advance care planning with adolescent patients. Moreover, there were no notable differences among subspecialties. The most prevalent answers to factors impeding advance care planning were lack of systemic support after performing advance care planning (82.0%) and uncertain legal responsibilities (70.8%).
CONCLUSIONS: The pediatricians differed in their experiences and attitudes toward advance care planning based on their subspecialty. Consequently, institutional support and education should be provided to physicians so that they can include children and families in discussions on prognosis.
Background: Patients often view “palliative care” (PC) as an approach that is synonymous with end-of-life and death, leading to shock and fear. Differing cultural and social norms and religious affiliations greatly determine perception of PC among diverse populations.
Methods: This prospective observational study aimed to explore perceptions of PC among South Asian community members at one Canadian site. Patients who identified themselves as being of South Asian origin were consented and enrolled at a PC Clinic at a community hospital in Brampton, Ontario serving a large South Asian population. Participants filled out an 18-question survey created for the study and responded to a semi-structured interview consisting of 8 questions that further probed their perceptions of PC. Survey responses and semi-structured interviews content were analyzed by four authors who reached consensus on key exploratory findings.
Results: Thirty-four participants of South Asian origin were recruited (61.8% males), and they were distributed by their age group as follows: [(30–49) - 18%; (50–64) – 21%; (65–79) - 41%; (= 80) – 21%]. Five main exploratory findings emerged: (i) differing attitudes towards talking about death; (ii) the key role of family in providing care; (iii) a significant lack of prior knowledge of PC; (iv) a common emphasis on the importance of alleviating suffering and pain to maintain comfort; and (v) that cultural values, faith, or spiritual belief do not pose a necessary challenge to acceptance of PC services.
Conclusions: Observations from this study provide a source of reference to understand the key findings and variability in perceptions of palliative care in South Asian communities. Culturally competent interventions based on trends observed in this study could assist Palliative Physicians in delivering personalized care to South Asian populations.
INTRODUCTION: Do not resuscitate (DNR) decision making is an integral component of emergency medicine practice. There is a paucity of data, protocols and guidelines regarding the perceptions and barriers that are involved in the interactions among healthcare professionals, patients and their caregivers regarding DNR decision making. The aim of this study is, therefore, to explore the perceptions and factors influencing DNR decision making in the emergency department and to evaluate the use of a context-based protocol for DNR decision making.
METHODS AND ANALYSIS: This will be a sequential mixed method study beginning with qualitative research involving in-depth interviews (IDIs) with patient family members and focus group discussion with healthcare professionals. The consensual qualitative approach will be used to perform a thematic analysis to the point of saturation. The expected outcome will be to identify key themes that suggest perceptions and factors involved in DNR decision making. After piloting, the derived protocol will then be used with a different group of individuals (150 healthcare professionals) who meet the eligibility criteria in a quantitative cross-sectional study with universal sampling. Data will be analysed using NVIVO in the qualitative phase and SPSS V.19 in the quantitative phase. The study findings will support the development of a standardised protocol for DNR decision making for healthcare professionals in the emergency department.
ETHICS AND DISSEMINATION: The proposal was reviewed by the ethics review committee (ERC) of the institution (ERC # 2020-1551-7193). The project is an institution SEED grant recipient PF139/0719. The results will be disseminated among participants, patient communities and healthcare professionals in the institution through seminars, presentations, brochures and emails. The findings will be published in a highly accessed peer-reviewed medical journal and will be presented at international conferences.
Background: Studies have shown that telehealth applications in palliative care are feasible, can improve quality of care, and reduce costs but few studies have focused on user acceptance of current technology applications in palliative care. Furthermore, the perspectives of health administrators have not been explored in palliative care and yet they are often heavily involved, alongside providers, in the coordination and use of health technologies. The study aim was to explore both health care provider and administrator perceptions regarding the usefulness and ease of using technology in palliative care.
Methods: The Technology Acceptance Model (TAM) was used as the guiding theoretical framework to provide insight into two key determinants that influence user acceptance of technology (perceived usefulness and ease of use). Semi-structured interviews (n = 18) with health providers and administrators with experience coordinating or using technology in palliative care explored the usefulness of technologies in palliative care and recommendations to support adoption. Interview data were analyzed using inductive thematic analysis to identify common, meaningful themes.
Results: Four themes were identified; themes related to perceived usefulness were: enabling remote connection and information-sharing platform. Themes surrounding ease of use included: integration with existing IT systems and user-friendly with ready access to technical support. Telehealth can enable remote connection between patients and providers to help address insufficiencies in the current palliative care environment. Telehealth, as an information sharing platform, could support the coordination and collaboration of interdisciplinary providers caring for patients with palliative needs. However, health technologies need to passively integrate with existing IT systems to enhance providers’ workflow and productivity. User-friendliness with ready access to technical support was considered especially important in palliative care as patients often experience diminished function.
Conclusion: Participants’ perspectives of technology acceptance in palliative care were largely dependent on their potential to help address major challenges in the field without imposing significant burden on providers and patients.
AIM: To examine whether nurses' location of employment, demographics, or training influences their perceptions of what constitutes optimal care for dying patients in hospital.
DESIGN: Questionnaire-based, cross-sectional study.
METHODS: Between December 2016-June 2018, 582 registered or enrolled nurses from Australia (N = 153), South Korea (N = 241), and Hong Kong (N = 188) employed in a variety of hospital care units rated the extent to which they agreed with 29 indicators of optimal end-of-life care across four domains: patient, family, healthcare team, and healthcare system. Latent class analysis identified classes of respondents with similar responses.
RESULTS: Top five indicators rated by participants included: 'physical symptoms managed well'; 'private rooms and unlimited visiting hours'; 'spend as much time with the patient as families wish'; 'end-of-life care documents stored well and easily accessed' and 'families know and follow patient's wishes'. Four latent classes were generated: 'Whole system/holistic' (Class 1); 'Patient/provider-dominated' (Class 2); 'Family-dominated' (Class 3) and 'System-dominated' (Class 4). Class 1 had the highest proportion of nurses responding positively for all indicators. Location was an important correlate of perceptions, even after controlling for individual characteristics.
CONCLUSION: Nurses' perceptions of optimal end-of-life care are associated with location, but perhaps not in the direction that stereotypes would suggest. Findings highlight the importance of developing and implementing location-specific approaches to optimize end-of-life care in hospitals.
IMPACT: The findings may be useful to guide education and policy initiatives in Asian and Western countries that stress that end-of-life care is more than symptom management. Indicators can be used to collect data that help quantify differences between optimal care and the care actually being delivered, thereby determining where improvements might be made.
PURPOSE: Young adults (YAs; defined as 18-39 years of age) with advanced cancer are a group for whom standardized age-appropriate palliative care has not been established. The purpose of this study was to explore the YA experience and perceptions of palliative care in an outpatient interdisciplinary palliative care clinic for this population.
PATIENTS AND METHODS: Using an interpretive descriptive design, semistructured interviews were conducted with 12 YAs with advanced cancer who were being seen jointly by a palliative care physician and psychiatrist in an ambulatory palliative care clinic. Interviews explored participants' understanding and experiences of receiving palliative care. Six family members were also interviewed to build on the YA experience. Data collection and analysis occurred concurrently, drawing on the constructivist grounded theory method to analyze the data.
RESULTS: Participants described being referred to and seen in the interdisciplinary palliative care clinic as a conflicting and at times difficult experience because of the feeling of being categorized as palliative as YAs. Even so, there were key aspects associated with the specific palliative care approach that allowed YAs to cope with this new label, leading to a beneficial experience, specifically: provided YAs with time and space to explore the experience of having cancer at a younger age, created repeat opportunities to talk openly with people who "got it," and highlighted the importance of including family support in the care of YAs.
CONCLUSION: YAs who were referred to the interdisciplinary palliative care clinic struggled with the category of palliative care but also found the care they received beneficial. Findings provide an approach to palliative care tailored to YAs with advanced cancer.
INTRODUCTION: Although the importance of palliative care (PC) integration in the Emergency Department (ED) has long been recognized, few formalized programs have been reported and none have evaluated the experience of ED clinicians with embedded PC. We evaluate the experience of ED clinicians with embedded PC in the ED during COVID.
METHODS: ED clinicians completed a survey about their perceptions of embedded PC in the ED. We summarized responses to closed-ended items using descriptive statistics and analyzed open-ended items using thematic analysis.
RESULTS: There were 134 ED clinicians surveyed. 101 replied (75% response rate). Of those that had interacted with PC, 100% indicated a benefit of having PC involved. These included freeing up ED clinicians for other tasks (89%), helping them feel more supported (84%), changing the patients care trajectory (67%), and contributing to clinician education (57%) and skills (49%). Among barriers related to engaging PC were difficulty locating them (8%) and lack of time to consult due to ED volume (5%). 98% of respondents felt that having PC in the ED was either "valuable" or "very valuable." Open-ended responses reflected a positive impact on clinician wellness and improvement in access to high quality goal concordant care. Clinicians expressed gratitude for having PC in the ED and noted the importance of having readily available and easily accessible PC in the ED.
CONCLUSION: ED clinicians' perception of embedded PC was overall positive, with an emphasis on the impact related to task management, enrichment of PC skills, providing support for the team, and improved care for ED patients.
BACKGROUND: It is not clear how lay people prioritize the various, sometimes conflicting, interests when they make surrogate medical decisions, especially in non-Western cultures. The extent such decisions are perspective-related is also not well documented.
METHODS: We explored the relative importance of 28 surrogate decision-making factors to 120 Middle-Eastern (ME) and 120 East-Asian (EA) women from three perspectives, norm-perception (N), preference as patient (P), and preference as surrogate decision-maker (S). Each respondent force-ranked (one to nine) 28 opinion-items according to each perspective. Items' ranks were analyzed by averaging-analysis and Q-methodology.
RESULTS: Respondents' mean (SD) age was 33.2 (7.9) years; all ME were Muslims, 83% of EA were Christians. "Trying everything possible to save patient," "Improving patient health," "Patient pain and suffering," and/or "What is in the best interests of patient" were the three most-important items, whereas "Effect of caring for patient on all patients in society," "Effect of caring for patient on patients with same disease," and/or "Cost to society from caring for patient" were among the three least-important items, in each ME and EA perspectives. P-perspective assigned higher mean ranks to family and surrogate's needs and burdens-related items, and lower mean rank to "Fear of loss" than S-perspective (p<0.001). ME assigned higher mean ranks to "Medical facts" and "Surrogate own wishes for patient" and lower mean rank to "Family needs" in all perspectives (p<0.001). Q-methodology identified models that were relatively patient's preference-, patient's religious/spiritual beliefs-, or emotion-dependent (all perspectives); medical facts-dependent (N- and S-perspectives), financial needs-dependent (P- and S-perspectives), and family needs-dependent (P-perspective).
CONCLUSIONS: 1) Patient's health was more important than patient's preference to ME and EA women; society interest was least important. 2) Family and surrogate's needs/ burdens were more important, whereas fear of loss was less important to respondents as patients than as surrogate decision-makers. 3) Family needs were more important to EA than ME respondents, the opposite was true for medical facts and surrogate's wishes for patient. 4) Q-methodology models that relatively emphasized various surrogate decision-making factors overlapped the ME and EA women' three perspectives.