OBJECTIVE: To know the facilities and difficulties the palliative care team professionals experience in the implementation process of advance healthcare directives.
METHOD: Exploratory-descriptive study with a qualitative approach, involving 51 professionals from seven palliative care teams in the state of Rio Grande do Sul, Brazil. The data were collected between December 2018 and April 2019 and discursive textual analysis was applied.
RESULTS: The facilities found were: the approach by the palliative care team; listening and respecting patients' wishes; effective communication between professionals, patients, and family members and resolution of difficult situations. The difficulties reported were: legal issues; the lack of knowledge of professionals about the subject; the lack of institutional protocols; the difficulty in talking about death and the family barrier.
CONCLUSION: Despite the perceived facilities and difficulties, palliative care professionals intend to work based on the patients' desires and will, aiming to offer dignity in the dying process.
BACKGROUND: In the Arab and Islamic world, data on palliative and end-of-life (PEOL) care education are minimal.
OBJECTIVES: The current study's primary aim was to identify what PEOL care education is delivered to undergraduate nurses in Egypt and the teaching strategies used to deliver this education. A secondary aim was to assess the feasibility of using online surveys in nursing research in Egypt.
DESIGN: This is a cross-sectional survey.
SETTINGS: Ten randomly selected faculties of nursing across Egypt.
PARTICIPANTS: Nursing educators who were working at three academic departments; Medical-Surgical Nursing, Critical Care Nursing, and Gerontological Nursing; in the participating faculties.
METHODS: After face-to-face recruitment of participants, data were collected using an online questionnaire with an adjunctive use of paper questionnaires. The questionnaire assessed participants' and courses' characteristics, the inclusion of the PEOL Care Index content in the surveyed courses, and teaching strategies used to deliver this content.
RESULTS: A total of 95 nursing educators were involved in the current study (response rate = 86.4%). All participants were female, and 87.4% responded via online questionnaires. The overall coverage of the PEOL care content ranged from 76% to 100%. End-of-life care and spiritual care were the least frequently reported PEOL care topics; on average, by 19.6% and 36% of the educators, respectively. Lecture was the most frequently used teaching strategy, followed by clinical field practice (mean percentages of utilization: 77.7% and 53.6%, respectively).
CONCLUSIONS: In Egypt, most PEOL care topics are covered in undergraduate nursing curricula. Yet, educating these topics is predominantly theoretical. End-of-life care and spiritual care are the least frequently covered PEOL care topics. Online surveys are feasible for multisite curricular assessment, and this feasibility may be augmented by face-to-face recruitment of participants and adjunctive use of paper questionnaires.
Objective: Lack of palliative care knowledge among caregivers may pose an access barrier for cognitively impaired older adults, who may benefit from the specialized care. Therefore, this study aims to examine the effectiveness of an educational intervention in improving palliative care knowledge among informal caregivers of cognitively impaired older adults.
Method: Using a one-group, pre- and post-test intervention design, this study implemented an individual, face-to-face educational intervention with an informational brochure for 43 informal caregivers of chronically or seriously ill older adults (50+) with cognitive impairment, recruited from communities in West Alabama. Their level of knowledge about palliative care was assessed by the Palliative Care Knowledge Scale (PaCKS). The pre- and post-test scores were compared by the Wilcoxon signed-ranks test, and the racial subgroup (Whites vs. Blacks) comparison was made by the Mann–Whitney U test.
Results: There was a statistically significant difference between the pre- and post-test scores (z = 5.38, p < 0.001), indicating a statistically significant effect of the educational intervention in improving palliative care knowledge among participants. There was a significant difference (U = 143, p < 0.05) between Whites and Blacks in the pre-test, which, however, disappeared in the post-test (U = 173.50, p > 0.05), suggesting that the amount of increased PaCKS scores were significantly greater for Blacks (Mdn = 9.50) than for Whites (Mdn = 4.00, U = 130.50, p < 0.05).
Significance of results: This study demonstrated that a one-time educational intervention can improve the level of palliative care knowledge among informal caregivers of chronically or seriously ill older adults with cognitive impairment, particularly among Black caregivers. Therefore, further educational efforts can be made to promote palliative care knowledge and reduce racial disparities in palliative care knowledge and its use.
PURPOSE: To examine the effect of education on nursing personnel's knowledge and attitudes regarding the use of hand massage, breathing techniques, and essential oils with hospice and palliative care patients.
BACKGROUND: Unrelieved, end of life pain is common among hospitalized patients on hospice and palliative care units. Integrative care techniques such as hand massage, breathing techniques, and essential oils can be available to use with these individuals. Nursing personnel are often unaware of other techniques that are not a traditional pharmacology approach to pain.
METHODS: A quasi-experiment was conducted to evaluate the effect of an educational intervention on nursing personnel's knowledge and attitudes regarding the use of three integrative care techniques (hand massage, breathing techniques, and essential oils) with hospice and palliative care patients in an acute care setting. Data on knowledge and attitudes were collected pre- and postintervention.
RESULTS: Following the intervention, improvements in nursing personnel's attitudes and knowledge toward the use of the three techniques were found.
CONCLUSION: Results of this study suggest that education of nursing personnel may positively influence knowledge and attitudes toward providing hand massage, breathing techniques, and essential oil for end of life patients.
Background: Music therapy (MT) and virtual reality (VR) have shown favorable patient-reported outcomes during serious illness.
Objectives: To evaluate implementation measures of feasibility, usability, and acceptability of a VR-based MT intervention.
Design: A pilot implementation study of a two-day VR-MT intervention using mixed methods. Patients created a personalized soundtrack with a music therapist, and then paired the soundtrack with a 360° VR environment.
Setting/Subjects: Hospitalized patients with palliative care needs.
Results: Of 23 patients (ages 20-74 years, 52% women), 17 completed the intervention, including 39% during an intensive care unit stay. Participants scored usability above average. For satisfaction, 53% chose the highest rating. Most participants spoke favorably of VR-MT, describing pleasant emotional and physical responses. Participants provided feedback on length, frequency of use, VR options, and timing of delivery.
Conclusion: This VR-MT intervention was feasible, usable, and acceptable for hospitalized palliative care patients. Further study will test VR-MT outcomes.
Objective: To determine the level of palliative care involvement before and after medical assistance in dying (MAID) requests, and to compare the differences between those who completed MAID and those who requested but did not complete MAID.
Design: Retrospective chart review.
Setting: The Ottawa Hospital (TOH) in Ontario.
Participants: Ninety-seven patients who requested MAID at TOH between February 6, 2016, and June 30, 2017.
Main outcome measures: Completion of MAID.
Results: Eighty-four patients were included in the study. Fifty patients (59.5%) completed MAID. The most common reasons for not completing MAID were death before completion of the required assessments (47.0%), ineligibility (26.5%), and loss of capacity (14.7%). The most common diagnoses were cancer (72.6%) and neurologic disease (11.9%). The most frequent reasons for requesting MAID were physical suffering (77.4%), loss of autonomy (36.9%), and poor quality of life (27.4%). Patients who completed MAID in this study were more likely to report physical suffering as the reason for their request than those who did not complete MAID (84.0% vs 67.6%; P = .08), yet only 23.8% of all patients requesting MAID had an Edmonton Symptom Assessment Scale completed. Before MAID request, 27.4% of patients had a community palliative care physician and 59.5% had palliative care involvement in any setting. The TOH palliative care team was involved in 46.4% of patients who requested MAID.
Conclusion: There is still inadequate provision of palliative care for those requesting MAID. Guidelines, legislation, and guidance are needed to help physicians ensure patients are aware of and understand the benefits of palliative care in end-of-life decisions. However, the involvement of palliative care with patients who completed MAID was similar to those who did not complete MAID. Multicentre studies are needed to further explore the MAID process and clarify the role of palliative care in that process.
Contemporary society has grown seemingly detached from the realities of growing old and subsequently, dying. A consequence, perhaps, of death becoming increasingly overmedicalised, nearly one in two UK nationals die institutional deaths. In this article we, two architectural scholars engaged in teaching, research and practice and a nurse and healthcare scholar with a focus on end-of-life care and peoples' experiences, wish to draw attention to a controversy resulting from a paucity in current literature on the terms of reference of the dying 'patient' as we navigate the future implications of the COVID-19 pandemic. This contributes to a relative lack of touchstones for architects to refer to when designing person-centred palliative care environments. Unlike common building types, architects are extremely unlikely to have lived experience of palliative care environments as patients; and therefore, require the help of healthcare professionals to imagine and empathise with the requirements of a person dying away from home. This paper includes a review of ageing and dying literature to understand, and distil from an architectural perspective, who, design professionals, are designing for and to remember the nuanced characteristics of those we hold a duty of care toward. We ask readers to heed the importance of accurate terms of reference, especially when commissioning and/or designing environments of palliative care. Furthermore, we put forward an appeal for interdisciplinary collaboration to develop a framework for codesigning positive experiences of person-centred care and environments at the end of life.
New public health approaches to palliative care highlight the role of communities in care, yet there is little evidence of studies on community-led initiatives in the palliative care context. Therefore, the aim of this study, which took place in Auckland, New Zealand, was to (1) explore Pacific family carers’ views on what they need to feel supported as they care for older family members at the end of life and (2) to devise a resource that reflects their views that may be used to raise community awareness about these needs. This was achieved using a Participatory Action Research (PAR) framework in which a focus group was carried out and a work group formed to implement the focus group’s recommendations that were informed by a thematic analysis of the focus group data. The analysis resulted in the foregrounding of four themes, with the focus of this paper being on the 4th theme, the centrality of spirituality for a group of Pacific caregivers. This emphasis was chosen due to it being an underexplored topic in the palliative care literature. Co-creating resources based on research with community members allows for the development of tailored approaches of significance to that community, in this instance, a music video.
CONTEXT: The palliative medicine workforce lacks racial diversity with <5% of specialty Hospice and Palliative Medicine (HPM) fellows identifying as Black(1). Little is known about Black trainees' exposure to palliative care during their medical education.
OBJECTIVES: To describe palliative care training for Black students during medical school, residency, and fellowship training.
METHODS: We conducted a cross-sectional descriptive study employing internet searches and phone communication in September 2019. We evaluated 24 medical schools in 3 pre-determined categories: historically black colleges and universities (HBCUs, N=4) and non-underrepresented minority-serving institutions with the highest (N=10) and lowest (N=10) percentage of Black medical students. Training opportunities were determined based on the presence of a course, clerkship or rotation in the medical school and residency curricula, a specialty HPM fellowship program, and specialty palliative care consult service at affiliated teaching hospitals.
RESULTS: None of the four HBCUs with a medical school offered a palliative care course or clerkship, rotation during residency, or specialty HPM fellowship program. Three of four HBCUs were affiliated with a hospital that had a palliative care consult service. Institutions with the highest Black enrollment were less likely to offer palliative care rotations during internal medicine (p= 0.046) or family medicine (p= 0.019) residency training than those with the lowest Black enrollment.
CONCLUSION: Residents at schools with the highest Black medical student enrollment lack access to palliative care training opportunities. Efforts to reduce health disparities and underrepresentation in palliative care must begin with providing palliative-focused training to physicians from underrepresented minority backgrounds.
End-of-life care of critically ill adult patients with advanced or incurable cancers is imbued with major ethical challenges. Oncologists, hospitalists, and intensivists can inadvertently subjugate themselves to the perceived powers of autonomous patients. Therapeutic illusion and poor insight by surrogates in physicians' ability to offer accurate prognosis, missed opportunities and miscommunication by clinicians, and lack of systematic or protocolized approach represent important barriers to high-quality palliative care. Enhanced collaboration, models that allow clinicians and surrogates to share the burdens of decision, and institutional support for early integration of palliative care can foster an ethical climate.
BACKGROUND: The interprofessional approach is part of the philosophy in palliative care, and its benefits are already documented. However, there are no evidence regarding the process through which the interprofessional team faces the process of the patient's end-of-life and how this experience might be of value for the team's development itself. The aim of this study was to analyse and understand the psychosocial processes that occurs when an interprofessional team accompanies patients and their families to death in palliative care, with the ultimate aim to develop a substantive theory to describe this phenomenon.
METHODS: A Grounded Theory method, as theorized by Strauss and Corbin, was adopted for this study. Data were collected through semi-structured interviews and then independently analysed using constant comparison analysis. Fourteen healthcare professionals - belonging to different disciplines (doctor, nurse coordinator, nurse, nurse assistant, psychologist) - were interviewed in a Northern Italy palliative care facility.
FINDINGS: The core category of this study was identified to be the process of accompaniment of the dying patient as an interprofessional ecosystem. Moreover, the results showed four main factors determining the development of the core psychosocial process: from professionals' 'Hidden Amazement' to 'Onerous Happiness' where 'Weaving of Professional Resources' and 'Work Meaning' are the underlying conditions to catalyse the process itself.
CONCLUSION: Interprofessional care appears an essential value, which becomes the source of the team's strength when facing end-of-life experiences. Health policies and organisations should take the importance of the characteristics of the work environment more carefully. The meaning that professionals attribute to their work and to the team itself, indeed, it may have impact on the overall quality of care and contribute to sustain work engagement, even in stressful situations like end-of-life care.
BACKGROUND: The linguistic and cultural diversity found in European societies creates specific challenges to palliative care clinicians. Patients' heterogeneous habits, beliefs and social situations, and in many cases language barriers, add complexity to clinicians' work. Cross-cultural teaching helps palliative care specialists deal with issues that arise from such diversity. This study aimed to provide interested educators and decision makers with ideas for how to implement cross-cultural training in palliative care.
METHODS: We conducted four focus groups in French- and Italian-speaking Switzerland. All groups consisted of a mix of experts in palliative care and/or cross-cultural teaching. The interdisciplinary research team submitted the data for thematic content analysis.
RESULTS: Focus-group participants saw a clear need for courses addressing cross-cultural issues in end-of-life care, including in medical disciplines outside of palliative care (e.g. geriatrics, oncology, intensive care). We found that these courses should be embedded in existing training offerings and should appear at all stages of curricula for end-of-life specialists. Two trends emerged related to course content. One focuses on clinicians' acquisition of cultural expertise and tools allowing them to deal with complex situations on their own; the other stresses the importance of clinicians' reflections and learning to collaborate with other professionals in complex situations. These trends evoke recent debates in the literature: the quest for expertise and tools is related to traditional twentieth century work on cross-cultural competence, whereas reflection and collaboration are central to more recent research that promotes cultural sensitivity and humility in clinicians.
CONCLUSION: This study offers new insights into cross-cultural courses in palliative and end-of-life care. Basic knowledge on culture in medicine, variable practices related to death and dying, communication techniques, self-reflection on cultural references and aptitude for interprofessional collaboration are central to preparing clinicians in end-of-life settings to work with linguistically and culturally diverse patients.
Context: The unmet needs of patients with advanced disease are indicative of the patient centredness of healthcare. By tracking unmet needs in clinical practice, palliative interventions are aligned with patient priorities, and clinicians receive support in intervention delivery decisions for patients with overlapping, complex needs.
Objective: Identify tools used in everyday clinical practice for the purpose of identifying and addressing unmet healthcare needs for patients with advanced disease.
Methods: We conducted PubMed and Cumulative Index of Nursing and Allied Health Literature searches to include studies published between 1 January 2008 and 21 April 2020. Three concepts were used in constructing a search statement: (1) patient need, (2) validated instrument and (3) clinical practice. 2313 citations were reviewed according to predefined eligibility, exclusion and inclusion criteria. Data were collected from 17 tools in order to understand how instruments assess unmet need, who is involved in tool completion, the psychometric validation conducted, the tool’s relationship to delivering defined palliative interventions, and the number of palliative care domains covered.
Results: The majority of the 17 tools assessed unmet healthcare needs and had been validated. However, most did not link directly to clinical intervention, nor did they facilitate interaction between clinicians and patients to ensure a patient-reported view of unmet needs. Half of the tools reviewed covered =3 dimensions of palliative care. Of the 17 tools evaluated, 4 were compared in depth, but all were determined to be insufficient for the specific clinical applications sought in this research.
Conclusion: A new, validated tool is needed to track unmet healthcare needs and guide interventions for patients with advanced disease.
Assisi Hospice is a charity organisation that provides the whole continuum of inpatient (85 beds), day care and home care services. In line with national COVID-19 measures, the hospice came up with guidelines to reflect these measures on the ground. The experience of Assisi Hospice in delivering palliative care in a pandemic mirrors that of similar hospice providers in Singapore. We have chosen to describe the challenges based on each setting below and the strategies implemented to mitigate them.
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On 2 January 2020, Singapore implemented preventive measures to minimise importation of COVID-19 cases after China reported its first case to the World Health Organisation on 31 December 2019, in what was to become a global pandemic. After confirming its first local case of COVID-19 on 23 January 2020, Singapore has adopted increasingly stringent containment measures, moving into mitigation mode when the number of cases escalated. Local hospitals have also instituted progressively stricter restrictions on visitation hours and the number of visitors. As of 28 May 2020, there were 33,249 confirmed cases of COVID-19, with 14,925 cases under observation, 18,294 cases discharged, 7 patients in critical condition and 23 deaths attributed to COVID-19.
CONTEXT: Current studies suggested that cultural and religious factors, as well as law and policy, may have impeded the advancement of palliative care in the Middle East. Little is known about healthcare providers' perceptions of palliative care and the barriers to its development in the Gulf Cooperation Council (GCC)
OBJECTIVES: To understand healthcare professionals' attitudes and beliefs regarding palliative care and to highlight current practice barriers in Bahrain.
METHODS: Semistructured interviews with 16 healthcare providers (physicians and nurses) were conducted. Thematic analysis was then performed after interviews were transcribed verbatim.
RESULTS: Healthcare professionals perceived palliative care as a service only delivered to patients at the end-of-life. Palliative care was only offered to patients who have been diagnosed with cancer and had exhausted all curative treatments. Do-Not-Resuscitate orders and Code Status discussions are not currently practiced. Palliative care decisions are usually decided by patients' families. Middle Eastern culture, healthcare law and policy, conservative interpretations of Islam and a lack of professional expertise were identified as barriers.
CONCLUSION: This study unveiled the perceptions of palliative care among healthcare professionals in a GCC country. Six major barriers that hindered palliative care practice were identified. Future healthcare policy in the region needs to address these barriers within the current healthcare system while taking culture, religion, and social factors into consideration.
Objectives: Determine feasibility, acceptability, and preliminary effects of the Palliative Care Social Worker-led ALIGN (Assessing & Listening to Individual Goals and Needs) intervention in older persons admitted to Skilled Nursing Facility (SNF) and their caregivers.
Design: A pilot pragmatic randomized stepped wedge design of ALIGN versus usual care in three SNFs.
Setting and Participants: One hundred and twenty older adults and caregivers (optional) with advanced medical illnesses.
Measures: Primary outcomes were feasibility and acceptability. We collected exploratory patient-/caregiver-centered outcomes at baseline and three months and conducted a medical record review at six months to assess documentation of Advance Directives (AD). We also collected exploratory health care utilization data, including hospitalizations, mortality, and hospice utilization.
Results: Of 179 patients approached, 120 enrolled (60 ALIGN patients with 15 caregivers and 60 usual care patients and 21 caregivers). Four intervention patients refused ALIGN visits, 8 patients died or discharged before initial visit, and 48 intervention patients received ALIGN visits, with [about] 80% having caregivers participating in visits, regardless of caregiver study enrollment. Quantitative exploratory outcomes were not powered to detect a difference between groups. We found 91% of ALIGN patients had a completed AD in medical record compared to 39.6% of usual care patients (p < 0.001). Qualitative feedback from participants and SNF staff supported high acceptability and satisfaction with ALIGN.
Conclusion and Clinical Implications: A pragmatic trial of the ALIGN intervention is feasible and preliminary effects suggest ALIGN is effective in increasing AD documentation. Further research is warranted to understand effects on caregivers and health care utilization. The current model for SNF does not address the palliative care needs of patients. ALIGN has potential to be an effective, scalable, acceptable, and reproducible intervention to improve certain palliative care outcomes within subacute settings.