Theories of good death focused on acceptance, control, and meaning-making inform adult palliative care in high-resource settings. As children's palliative and hospice care (CPHC) develops in resource-limited settings, critical conceptualisations of a good death for children across these diverse settings are unknown. Assessed against high-resource setting tenets of good death from carer perspectives, results suggest: carer agency is limited; advanced discussion of death does not occur; distress results from multiple burdens; basic survival is prioritised; physical pain is not an emphasised experience; and carers publicly accept death quickly while private grief continues. Hegemonic conceptions of 'good death' for children do not occur in contexts where agency is constrained and discussing death is taboo, limiting open discussion, acceptance, and control of dying experiences. Alternate forms of discourse and good death could still occur. Critical, grounded conceptualisations of good death in individual resource-limited settings should occur in advance of CPHC development to effectively relieve expansive suffering in these contexts.
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.
AIMS AND OBJECTIVES: The purpose of this study is to elucidate the attitudes and knowledge of nursing home (NH) staff involved in the decision-making process surrounding tube feeding for people with advanced dementia, and regarding palliative care and eating difficulties in this population.
BACKGROUND: Dementia's final stage is associated with eating difficulties. "Comfort feeding" is the approach endorsed by the American Geriatrics society for those with advanced dementia and eating difficulties. Despite this, tube feeding remains a persisting practice in NHs in Israel.
DESIGN: Qualitative descriptive study.
METHODS: 27 NH employees from different sectors employed by seven NHs in Northern Israel underwent semi-structured, face-to-face interviews. The COREQ checklist was used to aid with reporting and analysis of results.
RESULTS: In Israel, there is an emerging palliative care discourse in caring for people with advanced dementia living in the NH setting. However, many interviewed didn't demonstrate an accurate understanding of this term or of the term "comfort feeding". Several barriers toward implementation of palliative care were identified and include a lack of formal education regarding nutrition in advanced dementia, socio-economic factors and their association with the two types of NHs operating in Israel (those with exclusively private funding, and those reimbursed by the Ministry of Health).
CONCLUSIONS: Interviews with NH staff regarding eating difficulties in advanced dementia shed light on the palliative care discourse, which is in a liminal stage in many countries. The themes which emerged may help inform future recommendations regarding palliative care in general and more specifically in NH residents with advanced dementia, in countries where policy is still being developed and refined.
RELEVANCE TO CLINICAL PRACTICE: Understanding barriers toward implementation of a palliative approach and comfort feeding specifically could improve the care for people with advanced dementia in the NH setting.
Background: This study is the first to document knowledge-base and knowledge attitudes about cultural competence and religious literacy in hospice and palliative care in Cyprus.
Objective: The aim of this article is to investigate and document the knowledge-base and attitudes toward advancing knowledge and expertise of hospice and palliative care professionals in Cyprus.
Measurements: A cross-sectional self-administered online survey, which reached 80 hospice and palliative care professionals employed in the sector, was used. The response rate was 64%, which increases the generalizability of the results. Forty-one surveys were completed fully and included in the study. The study was approved by the Ethics Committee of the Frederick University in Cyprus (EEBK EP 2019.01.28).
Results: This study shows that self-awareness, reflexivity, and respect toward the other and other people's culture and religion are associated with the current knowledge-base of the professionals, as well as attitudes toward future learning opportunities, lifelong learning, and initiating learning between professionals and agencies. The results present three themes: knowledge development, knowledge empowerment, and knowledge exchange.
Conclusions: Professionals and organizations need to nurture and promote lifelong learning, supervision, and enable individual practitioners to engage with activities that will enhance their self-awareness, reflexivity, and attitude toward the unique identities of others.
Background: Transitioning from the hospital to community is a vulnerable point in patients' care trajectory, yet little is known about this experience within the context of palliative care. While some studies have examined the patient and caregiver experience, no study to date has synthesized the literature on the healthcare provider's perspective on their role and experience facilitating these transitions.
Aim: The purpose of this systematic review was to understand the experience and perspective of healthcare providers who support the transition of patients receiving palliative care as they move from acute care to community settings.
Design: A qualitative systematic review of studies using thematic analysis as outlined by Thomas and Harden. PROSPERO: ID # CRD42018109662.
Data sources: We searched four databases: MEDLINE, Embase, ProQuest and CINAHL for studies published in English from 1995 until May 22, 2020. Four reviewers screened records using the following selection criteria: (1) peer-reviewed empirical study, (2) adult sample, (3) qualitative study design, (4) perspective of healthcare providers, and (5) included a component of transitions between acute to community-based palliative care. Study findings were analyzed using thematic analysis which entailed: (1) grouping the findings into recurring themes; (2) iteratively referring back to the articles to obtain nuances of the theme and quotations; and (3) defining and solidifying the themes.
Results: Overall 1,791 studies were identified and 15 met inclusion criteria. Studies were published recently (>2015, n = 12, 80%) and used a range of qualitative methods including semi-structured interviews, focus groups, and field interviews. Three core themes related to the role and experience of healthcare providers were identified: (1) assessing and preparing for transition; (2) organizing and facilitating the logistics of transition; and (3) coordinating and collaborating transitional care across sectors. The majority of studies focused on the discharge process from acute care; there was a lack of studies exploring the experiences of healthcare providers in the community who receive patients from acute care and provide them with palliative care at home.
Conclusion: This review identified studies from a range of relatively high-income countries that included a diverse sample of healthcare providers. The results indicate that healthcare providers experience multiple complex roles during the transition facilitation process, and future research should examine how to better assist clinicians in supporting these transitions within the context of palliative care provision.
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.
Objective: This study aimed to develop an assessment tool measuring comprehensive interdisciplinary competence in end-of-life care (EoLC) and investigate its content, construct validity, reliability, and their correlates.
Method: Items of the Comprehensive End-of-Life Care Competence Scale (CECCS) were developed according to a comprehensive core competence framework in EoLC and refined by a multi-disciplinary panel of experts. The psychometric properties were further tested through region-wide surveys of self-administered questionnaires completed by health and social care professionals in Hong Kong.
Results: Participants comprised social workers, nurses, physicians, and allied health care professionals (445 participants in 2016, 410 in 2017, and 523 in 2018). Factor analysis validated the construct of the questionnaire which encompassed 26 items describing EoLC core competences in seven domains with satisfactory internal reliability (confirmatory factor analysis: 2/df = 3.12, GFI = 0.85, TLI = 0.93, CFI = 0.94, RMSEA = 0.07; Cronbach's alphas ranged from 0.89 to 0.97): overarching value & knowledge, communication skills, symptom management, psychosocial and community care, end-of-life decision-making, bereavement care, and self-care. Higher perceived levels in these competences were correlated with a higher level of job meaningfulness and satisfaction (r ranged from 0.17 to 0.39, p < 0.01) and correlated with lower perceived stress (r ranged from –0.11 to –0.28, p < 0.05). Regression analysis found that age and work involvement in EoLC were positively associated with the perceived competences in all domains; professionals working in hospices reported higher levels of competence than workers in other settings; social workers showed lower perceived competences in symptom management, but higher levels in bereavement care than other health care professionals.
Significance of results: The validity and internal reliability of CECCS were demonstrated. The levels of perceived competences working in EoLC were significantly associated with professionals’ job-related well-being. Practically, there is still room for improvement in comprehensive competences among health and social care workers in Hong Kong.
Context: In most jurisdictions where medical-aid-in-dying (MAiD) is available, this option is reserved for individuals suffering from incurable physical conditions. Currently, in Canada, people who have a mental illness are legally excluded from accessing MAiD.
Methods: We developed a questionnaire for mental health care providers to better understand their perspectives related to ethical issues in relation to MAiD in the context of severe and persistent suffering caused by mental illness. We used a mixed-methods survey approach, using a concurrent embedded model with both closed and open-ended questions.
Findings: 477 healthcare providers from the province of Québec (Canada) completed the questionnaire. One third of the sample (34.4%) were nurses, one quarter psychologists (24.3%) and one quarter psycho-educators (24%). Nearly half of the respondents (48.4%) considered that people with a severe mental illness should be granted the right to opt for MAiD as a way to end their suffering. Respondents were more likely to feel comfortable listening to the person and participating in discussions related to MAiD for a mental illness than offering care or the means for the person to access MAiD. Most (86.2%) reported that they had not received adequate/sufficient training, education or preparation in order to address ethical questions surrounding MAiD.
Conclusions: The findings highlight how extending MAiD to people with a mental illness would affect daily practices for mental healthcare providers who work directly with people who may request MAiD. The survey results also reinforce the need for adequate training and professional education in this complex area of care.
New methods of working in relation to the management of patients requiring palliative radiotherapy are being embraced in hospital departments around the world. Team members are expanding on their previously assigned scope of practice to take on duties that had previously only been assigned to a consultant clinical oncologist. Career frameworks such as the four-tier model have been built upon to identify the skills held by other healthcare professionals and show how they may be best placed to take on additional roles within a patient pathway. Experiences of four departments in different countries report their local experiences in using both therapeutic radiographers and nursing staff to undertake advanced and consultant-level practice in relation to the management of both palliative radiotherapy patients and their research work streams. Involvement of other healthcare professionals within the clinical or research pathway for the management of palliative radiotherapy patients can be achieved. Their involvement can support clinicians and help to ensure the safe and efficient management of patients requiring palliative radiotherapy.
Compassion is deemed a "basic social emotion" (Nussbaum) and decreed a National Health Service core value-yet, what does 'compassion' really mean? Moreover, why is it so important, how can we deliver it best and how do we measure achievement here? This essay will argue that compassion stands apart from other forms of interpersonal engagement as a deeply human recognition of another's suffering which inherently motivates action to do something about this. There are two inextricable elements here: the role of suffering, and the resultant call to action it motivates.The role of compassion pivots on suffering, and thus, our interpretation of suffering and what we consider its upstream cause: the problem to be fixed. Palliative medicine here stands apart, priding itself on the holistic care of what is important to the patient; thus, the symptoms problematic to the patient are the problem, rather than the underlying cause per se.Compassion drives motivation to act; medicine equips us with the tools by which we can respond to this. Thus, compassion has been described as a 'calling' to healthcare for many who join the profession, and perhaps it is when these tools seem to fail that compassion fatigue takes hold. Though this is beyond the scope of this essay, compassion fatigue is considered a form of burnout directly related to the experiences of a caregiver. Thus, compassion is central, and its outcomes stem first from our perspective of the issue at hand and second from our ability to drive change. The ability to recognise suffering in another and be motivated to help has relevance far beyond work in palliative medicine; perhaps this form of interpersonal engagement extends to humanity itself.
BACKGROUND: Patient shadowing is an experiential technique intended to enable those who shadow to understand care experience from the patient's point of view. It is used in quality improvement to bring about change that focuses on what is important for patients.
AIM: To explore the acceptability of patient shadowing for health-care staff, the impact of the experience and subsequent motivations to make improvements.
METHOD: A qualitative study with a diverse sample of 20 clinical and non-clinical health-care staff in different end-of-life settings. Data were analysed thematically.
RESULTS: Anticipated anxieties about shadowing did not materialize in participant accounts, although for some it was a deeply emotional experience, intensified by being with patients who were at the end of life. Shadowing not only impacted on participants personally, but also promoted better insights into the experience of patients, thus focusing their improvement efforts. Participants reported that patients and families who were shadowed welcomed additional caring attention.
CONCLUSION: With the right preparation and support, patient shadowing is a technique that engages and motivates health-care staff to improve patient-centred care.
OBJECTIVE: Hospice interdisciplinary team (IDT) providers' attitudes toward sexual and gender minority (SGM) patients and family caregivers impacts quality of care and end-of-life outcomes. This study assessed hospice IDT provider attitudes toward SGM patients and caregivers and identified demographic predictors.
METHODS: Hospice IDT providers (N = 122) completed an adapted 11-item scale measuring attitudes toward SGM hospice patients and caregivers. Descriptive statistics, confirmatory factor analysis, and regression models were conducted.
RESULTS: The hospice-adapted Attitudes Toward LGBT Patients Scale (ATLPS) demonstrated acceptable Cronbach's alpha (0.707). Total scores ranged from 32 to 55 (M = 47.04, SD = 5.64) showing that attitudes were generally positive. Being religious (B=-3.169, p = 0.008) was associated with more negative attitudes, while higher education (B = 1.951, p = 0.002) and time employed in hospice agency (B = 0.600, p = 0.028) were associated with more positive attitudes.
CONCLUSION: This is among the first studies to assess SGM-specific hospice IDT attitudes. Participants had relatively positive attitudes, influenced by religious beliefs, clinical experience, and education. CFA results suggest the need for better instruments to measure this complex construct.
PRACTICE IMPLICATIONS: Education incorporating evidence of disparities, life-course perspectives, and end-of-life experiences of diverse cohorts of SGM patients and families may build on hospice IDT members' experience and training by influencing attitudes, reducing bias and improving competency.
AIM(S): A review of the global literature on the implementation of Advanced Healthcare Directives to date, and of the experiences of the healthcare professionals who must initiate the discussions around advance care planning, as well as support patients' ultimate decisions.
BACKGROUND: Ireland's Assisted Decision-Making (Capacity) Act 2015 legalises Advance Healthcare Directives. It promotes the autonomy of the person and enables them to have treatment in accordance with their will and preferences. However, there is professional uncertainty on how to support and integrate assisted decision-making.
EVALUATION: 16 studies featuring the views of healthcare professionals are included and evaluated using a framework of 'benefits versus challenges'.
KEY ISSUE(S): Four themes clearly emerge during the review process: the concept of capacity and who decides; autonomy vs paternalism - conflict among the healthcare professional/patient/family-carer triad; barriers to advance directives; and timing issues.
CONCLUSION(S): Significant benefits of advance healthcare directives exist for all parties including less stress for patients and families alike, less burden and less residual guilt for surviving relatives, and an over-arching prevention of 'crisis' decision-making.
IMPLICATIONS FOR NURSING MANAGEMENT: This review highlights the central role of the nurse in empowering patients to express their wills and preferences, supporting patients' capacity to make decisions about their own care, initiating end-of-life care discussions and advocating to have advance healthcare directives acknowledged. Moreover, it identifies the challenges ahead for all nurse managers in implementing this new mandate.
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.
Pediatric palliative care (PPC) literature was utilized to identify barriers for early initiation of palliative care at diagnosis among children with life-threatening diseases. Early integration of PPC enhances quality of life and reduces suffering in these children, but many clinicians fail to initiate advanced care planning, establish goals of care, and refer to specialists. Barriers to early PPC initiation include clinician misperceptions, emotional toll on clinicians, and prognostic uncertainty about treatment options and care management strategies. Pediatric nurse practitioners can increase awareness, educate, and support other clinicians to promote early initiation of PPC in children with life-threatening diseases.
BACKGROUND: Nearly 70% of nursing home residents are eligible for palliative care, yet few receive formal palliative care outside of hospice. Little is known about nursing home staff attitudes, knowledge, skills, and behaviors related to palliative care.
METHODS: We administered a modified survey measuring attitudes toward death to 146 nursing home staff members, including both clinical and nonclinical staff, from 14 nursing homes.
RESULTS: Nursing home staff generally reported feeling comfortable caring for the dying, but half believed the end of life is a time of great suffering. Pain control (63%), loneliness (52%), and depression (48%) were the most important issues identified with regard to these patients, and there was ambivalence about the use of strong pain medications and the utility of feeding tubes at the end of life. Top priorities identified for improving palliative care included greater family involvement (43%), education and training in pain control (50%) and in management of other symptoms (37%), and use of a palliative care team (35%) at their facility.
CONCLUSIONS: Findings show there is a need for more palliative care training and education, which should be built on current staff knowledge, skills, and attitudes toward palliative care.
Specialist palliative care services (SPCS) have a vital role to play in the global coronavirus disease 2019 pandemic. Core expertise in complex symptom management, decision making in uncertainty, advocacy and education, and ensuring a compassionate response are essential, and SPCS are well positioned to take a proactive approach in crisis management planning. SPCS resource capacity is likely to be overwhelmed, and consideration needs to be given to empowering and supporting high-quality primary palliative care in all care locations. Our local SPCS have developed a Palliative Care Pandemic Pack to disseminate succinct and specific information, guidance, and resources designed to enable the rapid upskilling of nonspecialist clinicians needing to provide palliative care. It may be a useful tool for our SPCS colleagues to adapt as we face this global challenge collaboratively.
Background: International research has shown that healthcare professionals (HCPs) and nonhealthcare professionals (NHCPs) are unaware of the goals and purposes of palliative care. This study evaluates the knowledge of palliative care among a sample of Portuguese adults and correlates their level of knowledge with age, gender, profession, and experience of family member's palliative care.
Method: A cross-sectional online survey was carried out on a sample of 152 HCPs and 440 NHCPs who completed an anonymous questionnaire of sociodemographic, family, and professional data, and an instrument of 26 dichotomous (true or false) questions focusing on palliative care goals and purposes.
Results: The 592 participants had a mean age of 31.3 ± 11.1 years, and most were female. Statistically significant differences between statements considered as correct by HCPs and NHCPs were found in 24 statements; HCPs had the highest percentage of correct answers. The terms most frequently associated with palliative care mentioned by NHCPs were chronic and progressive disease (n = 76), while HCPs mostly mentioned quality-of-life promotion (n = 29). Women, the elderly, and HCPs had a higher level of knowledge regarding palliative care (p < 0.001).
Conclusions: Results clearly show gaps in knowledge of palliative care, especially among NHCPs. An integrated approach is needed to inform and clarify the philosophy and goals of palliative care in different settings in order to improve knowledge.
Le respect de l’autonomie du patient est essentiel. Il peut rédiger des directives anticipées en vue d’une situation où il ne pourrait plus s’exprimer. Actuellement, peu de personnes les ont rédigées. Nous avons réalisé une étude sur la faisabilité de la mise en place systématique des directives anticipées chez des patients hémodialysés. Cette étude prospective monocentrique a été menée dans un centre d’hémodialyse ambulatoire en 4 étapes : un questionnaire remis aux soignants ; la sélection puis l’information des patients ; la rédaction assistée des directives anticipées par les patients intéressés ; l’évaluation des causes de non-participation. Les soignants connaissent mal le dispositif et ont des réticences : le manque de connaissances médicales du patient, l’angoisse générée par la discussion sur la fin de vie. Cinquante-six patients (51,6 %) ont été inclus et ont reçu les informations. Neuf d’entre eux ont souhaité rédiger leurs directives anticipées sur un formulaire adapté, huit les ont finalisées (7,4 % de la population initiale). La majorité souhaitait une limitation thérapeutique. Vingt-neuf patients ayant reçu l’information n’ont pas souhaité les rédiger, les raisons étant : ils se sentent bien ou pensent que leurs proches prendraient les bonnes décisions. Dix-huit patients sont sortis du centre pendant l’étude. Le développement des directives anticipées nécessite l’information et la formation des soignants, ainsi que l’accompagnement des patients. Peu de patients sont allés au bout de la démarche. La limite de la « compétence » du patient à décider pour lui est difficile à définir. Le rôle du médecin est central pour l’accompagner.
Euthanasia is undoubtedly the protagonist of many of the debates around the end of life both among health staff and in the general population. Considering that nurses provide care for terminally ill patients and support families and patients in their final days, it is essential to know their attitudes towards euthanasia. The aims of the study were to adapt and validate the Attitude Towards Euthanasia scale to a Spanish context, to test the dimensionality and to estimate the reliability of the scale. A cross-sectional study was conducted with a non-probabilistic sample of Spanish health-workers of 201 in a University Hospital in Ciudad Real. A self-reported socio-demographic questionnaire and the Euthanasia Attitude Scale were used for data collection. The psychometric properties of the scale were assessed, including reliability and validity using an exploratory and confirmatory factor analysis. Cronbach’s alpha of the Attitude Towards Euthanasia scale was a = 0.827 and McDonald’s Omega = 0.903. The range of items of homogeneity was from 0.205 to 0.685. For the different exploratory factor analyses carried out, the Bartlett’s test of sphericity was p < 0.001 and the sample index value of Kaiser-Meyer-Olkin was over 0.802. in all cases. We present the factorial weights for three models: The first one assumes a unidimensional solution, the second model was composed by three factors and the third model was composed by four factors. In the confirmatory factor analysis, the three models presented an acceptable fit index. The Attitude Towards Euthanasia scale adaptation to a sample of Spanish health workers has shown, with some limitations, appropriate psychometric properties. There have been several differences between the original factorial solution. It would be necessary to replicate the study to reinforce the findings about the number of factors of the scale.