What’s in a name? A qualitative exploration of what is understood by “palliative care” in the emergency department

Background: The understanding of what palliative care is, and which patients may benefit from palliative care, has important implications for optimal patient care in all areas of health provision. Aim: To explore the understanding of palliative care by healthcare professionals caring for patients with advanced cancer attending emergency departments. Design: Qualitative study, with two phases: the first, a series of focus groups with healthcare professionals from various disciplines and settings caring for patients with advanced cancer presenting to emergency departments; the second, semi-structured telephone interviews with emergency healthcare professionals across Australian States and Territories, including outside metropolitan centers. The data were audio-recorded and transcribed, with analysis undertaken using a qualitative thematic analysis. Setting/participants: Saturation of themes was reached after 8 focus groups (22 emergency nurses, 21 emergency physicians, 6 oncologists, 6 hospital palliative care clinicians, and 28 community palliative care clinicians) and 11 telephone interviews (8 emergency physicians and 3 emergency nurses), a total of 94 participants. Results: The overarching theme was that healthcare professionals held contradictory understandings of palliative care and its application in the emergency department; subthemes highlighted these inconsistencies when the term “palliative” is used, in understandings of and engagement with palliative care services and in perceptions about the practical utility of palliative care. Conclusion: There are entrenched contradictions and tensions surrounding the term “palliative care”; confronting these is likely to require more than re-branding, and will promote better care for this vulnerable patient group in the emergency department.

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Harmonizing Palliative Care: National Survey to Evaluate the Knowledge and Attitude of Emergency Physicians towards Palliative Care

10.1101/19003939 ◽

2019 ◽

Author(s):

Ameena Mohammed Al-Ansari ◽

Saleem Nawaf Suroor ◽

Sobhi Mostafa AboSerea ◽

Wafaa Mostafa Abd-El-Gawad

Keyword(s):

Palliative Care ◽

Emergency Departments ◽

Negative Attitude ◽

Care Practice ◽

List Type ◽

Emergency Physicians ◽

Poor Knowledge ◽

Care Services ◽

Palliative Care Services

Background and AimAlthough the challenges of integrating palliative care practices across care settings are real and well recognized until now little is known about palliative care practice of emergency physicians (EPs) and their accessibility to palliative care services in Kuwait. So the aim of this study was to explore the attitude, and knowledge encountered by EPs in providing palliative care in all general hospitals in Kuwait.MethodA cross-sectional survey was performed in the emergency rooms of all general hospitals in Kuwait using Palliative Care Attitude and Knowledge (PCAK) questionnaire.ResultsOf the total number of physicians working in emergency rooms (n=156), 104 (66.67%) had completed the survey. 76.9% (n=80) of the EPs had either uncertain attitude toward palliative care. Most of the EPs (n=73, 70.28%) didn’t discuss the need of the patients to palliative care either with the patients or their families. Only 16 (15.4%) of the EPs responded correctly to the most of the questions while nearly half of the EPs (n=51, 49%) had poor knowledge especially in the most effective management of refractory dysnea (n=18, 17.3%). Experience ≥ 11yrs and better knowledge scores were independent predictors of positive attitude after adjustment of age, sex, qualifications, specialty, position, and nationality [OR: 5.747 (CI: 1.031-25.00), 1.458(CI: 1.148-1.851); p-value: 0.021, 0.002 respectively]..ConclusionsDespite recognizing palliative care as an important competence, the majority of the emergency physicians in Kuwait had uncertain attitude and poor knowledge towards palliative care. Lack of knowledge, direct accessibility to palliative care services and lack of support from palliative medicine specialists were the main reasons for uncertain and negative attitude. Efforts should be done to enhance physician training and provide palliative care resources in order to improve the quality of care given to patients visiting emergency departments.What this paper addsStudies proved that the emergency room may be a suitable place for early referral of patients who may benefit from palliative care especially old age to prevent upcoming undesired admissions and hospital deaths.The integration of palliative care concepts and consultation teams into emergency medicine may help to avoid unnecessary and burdensome treatments, tests, and procedures that are not aligned with patients’ goals of care.Although the challenges of integrating palliative care practices across care settings are real and well recognized until now little is known about palliative care practice of emergency physicians and their accessibility to palliative care services in Kuwait.Recently, a newly developed tool called Palliative Care Attitude and Knowledge (PCAK) questionnaire was created to assess the attitude and knowledge of non-palliative physicians toward palliative care. So the aim of this study was to explore the attitude, and knowledge encountered by emergency physicians in providing palliative care using PCAK 8 in emergency departments in all generalStudies showed that early palliative care consultation was shown to improve quality of life for cancer patients and may even lengthen their survival.What this study addsDespite recognizing palliative care as an important competence, the majority of the emergency physicians in Kuwait had uncertain attitude and poor knowledge towards palliative care. Lack of knowledge, direct accessibility to palliative care services and lack of support from palliative medicine specialists were the main reasons for uncertain and negative attitude.Efforts should be done to enhance physician training and provide palliative care resources in order to improve the quality of care given to patients visiting emergency departments.

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Challenges of paediatric palliative care in Romania: a focus groups study

BMC Palliative Care ◽

10.1186/s12904-021-00871-7 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Nadia Pacurari ◽

Eva De Clercq ◽

Monica Dragomir ◽

Anca Colita ◽

Tenzin Wangmo ◽

...

Keyword(s):

Palliative Care ◽

Focus Groups ◽

Healthcare Professionals ◽

Paediatric Oncology ◽

Pediatric Palliative Care ◽

Charitable Organizations ◽

Number Of Children ◽

Care Services ◽

Paediatric Palliative Care ◽

Palliative Care Services

Abstract Background The availability of palliative care facilities for children vary considerably among the European member states. In Romania, a country where health expenditure is among the lowest in Europe, palliative care has been mainly provided by charitable organizations. Despite the high number of children needing palliative care, there is scant literature and research available on paediatric palliative care in Romania. The study explores the viewpoints of various paediatric oncology providers with regard to paediatric palliative care provision in Romania. Methods Four mixed focus groups were conducted at four university-affiliated paediatric oncology centres located in three distinct Romanian regions (Bucuresti-llfov, Nord-Est and Nord-Vest). The focus groups were analyzed using thematic coding. Results For many healthcare professionals, emotional burden inherent to the profession; unhealthy work-life balance and understaffing were among the biggest barriers to the successful integration of pediatric palliative care. The lack of staff was attributed to a shortage of financial resources, and to the persisting cultural stigma surrounding palliative care and oncology. Also political turmoil was identified as an important obstacle to palliative care implementation. Conclusion Significant barriers persist limiting the broader implementation of pediatric palliative care in Romania. In order to render palliative care in pediatric oncology more sustainable, more attention should be paid to the mental health care of healthcare professionals working in this field, to the development of mobile palliative care services and to the emigration of skilled medical staff.

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Palliative care in the emergency department as seen by providers and users: a qualitative study

Scandinavian Journal of Trauma Resuscitation and Emergency Medicine ◽

10.1186/s13049-019-0662-y ◽

2019 ◽

Vol 27 (1) ◽

Cited By ~ 3

Author(s):

Silvia Di Leo ◽

Sara Alquati ◽

Cristina Autelitano ◽

Massimo Costantini ◽

Gianfranco Martucci ◽

...

Keyword(s):

Emergency Department ◽

Palliative Care ◽

Quality Improvement ◽

Qualitative Study ◽

Emergency Departments ◽

Healthcare Professionals ◽

Quality Improvement Program ◽

Care Needs ◽

Improvement Program ◽

Palliative Care Needs

Abstract Background Much effort has been made to explore how patients with advanced chronic illness and their families experience care when they attend the Emergency Department, and many studies have investigated how healthcare professionals perceive Palliative Care provision in the Emergency Department. Various models exist, but nonetheless incorporating palliative care into the Emergency Department remains challenging. Considering both healthcare professionals’ and users’ perspective on problems encountered in delivering and receiving appropriate palliative care within this context may provide important insight into meaningful targets for improvements in quality of care. Accordingly, this study aims at exploring issues in delivering palliative care in the Emergency Department from the perspective of both providers and users, as part of a larger project on the development and implementation of a quality improvement program in Italian Emergency Departments. Methods A qualitative study involving focus group interviews with Emergency Department professionals and semi-structured interviews with patients with palliative care needs in the Emergency Department and their relatives was conducted. Both datasets were analyzed using Thematic Analysis. Results Twenty-one healthcare professionals, 6 patients and 5 relatives participated in this study. Five themes were identified: 1) shared priorities in Emergency Department among healthcare professionals and patients, 2) the information provided by healthcare professionals and that desired by relatives, 3) perception of environment and time, 4) limitations and barriers to the continuity of care, and 5) the contrasting interpretations of giving and receiving palliative care. Conclusions This study provides insights into targets for changes in Italian Emergency Departments. Room for improvement relates to training for healthcare professionals on palliative care, the development of a shared care pathway for patients with palliative care needs, and the optimization of Emergency Department environment. These targets will be the basis for the development of a quality improvement program in Italian Emergency Departments.

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Facilitators and barriers to the delivery of palliative care to children with life-limiting and life-threatening conditions: a qualitative study of the experiences and perceptions of healthcare professionals

Archives of Disease in Childhood ◽

10.1136/archdischild-2021-321808 ◽

2021 ◽

pp. archdischild-2021-321808

Author(s):

Sarah Mitchell ◽

Anne-Marie Slowther ◽

Jane Coad ◽

Sophie Bertaud ◽

Jeremy Dale

Keyword(s):

Palliative Care ◽

Focus Groups ◽

Healthcare Professionals ◽

Clinical Uncertainty ◽

Care Services ◽

Paediatric Palliative Care ◽

Palliative Care Teams ◽

Palliative Care Services ◽

Life Threatening ◽

Facilitators And Barriers

ObjectiveTo understand healthcare system facilitators and barriers to the delivery of palliative care for children with life-limiting and life-threatening conditions and their family members.DesignFocus groups with children’s palliative care professionals. Data were analysed using thematic analysis.SettingFour regions of England (West Midlands, South West, Yorkshire and Humber, and London) from December 2017 to June 2018.ParticipantsHealthcare professionals (doctors, nurses and allied healthcare professionals) working in children’s palliative care services.FindingsA total of 71 healthcare professionals participated in the focus groups. Three overarching themes were identified which influenced whether and when children were referred to and started to receive palliative care: (1) the unspoken background of clinical uncertainty which often delayed palliative care; (2) the cultural ‘collusion of immortality’, where conversations about the possibility of dying can be avoided or deferred; and (3) the role of paediatric palliative care teams in ‘illuminating the blind spot’ of palliative care as well as providing hands-on care.ConclusionsPalliative care is a holistic approach to care that focuses on quality of life for people living with life-limiting and life-threatening conditions that can be delivered alongside active treatment. There is a need to prioritise and integrate this into healthcare services for children more effectively if improvements in care are to be realised. While more specialist paediatric palliative care services are needed, the unspoken background of clinical uncertainty needs to be addressed together with the collusion of immortality within healthcare culture and organisations.

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Faculty Opinions recommendation of Early integration of palliative care services with standard oncology care for patients with advanced cancer.

Faculty Opinions – Post-Publication Peer Review of the Biomedical Literature ◽

10.3410/f.718039425.793496834 ◽

2014 ◽

Author(s):

Rakesh Jalali

Keyword(s):

Palliative Care ◽

Advanced Cancer ◽

Early Integration ◽

Care Services ◽

Palliative Care Services ◽

Oncology Care

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What makes palliative care needs “complex”? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care

BMC Palliative Care ◽

10.1186/s12904-020-00700-3 ◽

2021 ◽

Vol 20 (1) ◽

Cited By ~ 1

Author(s):

Anne M. Finucane ◽

Connie Swenson ◽

John I. MacArtney ◽

Rachel Perry ◽

Hazel Lamberton ◽

...

Keyword(s):

Palliative Care ◽

Focus Groups ◽

Healthcare Professionals ◽

Psychological Needs ◽

Care Providers ◽

Specialist Palliative Care ◽

Care Needs ◽

Complex Needs ◽

Sequential Explanatory ◽

Palliative Care Needs

Abstract Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.

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Palliative Care Needs of Advanced Cancer Patients in the Emergency Department (S767)

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2017.12.421 ◽

2018 ◽

Vol 55 (2) ◽

pp. 693

Author(s):

Isabelle Marcelin ◽

Caroline McNaughton ◽

Nicole Tang ◽

Jeffrey Caterino ◽

Corita Grudzen

Keyword(s):

Emergency Department ◽

Palliative Care ◽

Cancer Patients ◽

Advanced Cancer ◽

Advanced Cancer Patients ◽

Care Needs ◽

Palliative Care Needs

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69 Exploring learners’ perspectives of a pediatric palliative care tele-mentoring and education program (project ECHO) in a resource-limited setting

Paediatrics & Child Health ◽

10.1093/pch/pxaa068.068 ◽

2020 ◽

Vol 25 (Supplement_2) ◽

pp. e29-e29

Author(s):

Emily Evans ◽

Megan Doherty ◽

Shokoufeh Modanloo ◽

Jennifer Rowe ◽

Dennis Newhook ◽

...

Keyword(s):

Palliative Care ◽

Focus Groups ◽

South Asia ◽

Healthcare Professionals ◽

Pediatric Palliative Care ◽

Learning Resources ◽

Resource Limited Settings ◽

Project Echo ◽

Resource Limited ◽

One Year

Abstract Introduction/Background More than 98% of children who need palliative care live in low- or middle-income countries where access to palliative care is extremely limited. A lack of palliative care education for health care providers has been identified as a significant barrier to improving access to palliative care. Project ECHO (Extension of Community Healthcare Outcomes) is an online tele-mentoring educational platform developed to improve access to specialist care in these underserved areas. From 2018 to 2019, we piloted a one-year Project ECHO program which provided pediatric palliative care training for healthcare professionals mainly within India and surrounding South Asian countries. Objectives The objective of this study was to explore the learning experiences of participants in a Project ECHO on pediatric palliative care in South Asia and explore considerations to improve ECHO to cater to the unique learning needs and challenges for healthcare professionals in resource-limited settings. Design/Methods We implemented a one-year Project ECHO targeting healthcare providers in South Asia, which consisted of 24 bi-weekly 90-minute sessions. Learners who attended at least 20% (5 sessions) were invited to participate in focus groups. Focus groups were designed to explore participants’ experiences and the perceived strengths and weaknesses of the program. Recordings of the focus group sessions were transcribed, coded and independently verified. The codes were then arranged into overarching themes. Results Seventeen individuals from India and Bangladesh participated in four focus groups at the end of ECHO PPC. Following coding and analysis, two major themes and seven sub-themes were identified. The themes included: (1) Benefits of participation in ECHO PPC (creation of a community of practice; opportunity to exchange cultures, ideas and experiences; supportive role of the facilitator and peers; increased relevant knowledge and skills; and access to additional learning resources) and (2) Barriers to participation (difficulties with time and practice schedule management; and language and sociocultural factors). Conclusion Healthcare professionals in resource-limited settings benefit from project ECHO through the creation of a supportive, online learning community of peers where ideas, experiences and learning resources can be shared. Addressing barriers to participation may enhance the learning experience of project ECHO in the future.

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