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Palliative and End-of-Life Care

A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Global Health".

Deadline for manuscript submissions: closed (31 May 2020) | Viewed by 67583

Special Issue Editors

Dr. Doris Y. P. Leung

E-Mail Website
Guest Editor
School of Nursing, The Hong Kong Polytechnic University, Hong Kong 999077, China
Interests: cancer; geriatrics; palliative care; caregiving
Special Issues, Collections and Topics in MDPI journals
Dr. Helen Y. L. Chan

E-Mail Website
Guest Editor
The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China
Interests: qualitative and mixed-methods research; chronic illness; long-term care; end-of-life care; care ethics
Special Issues, Collections and Topics in MDPI journals

Special Issue Information

Dear colleagues,

The landscape of palliative and end-of-life care has changed substantially in the past decade due to changes in the demographics, medical technology, and disease pattern, which have resulted in a huge number of people who live with chronic progressive conditions. Decisions about medical treatments have become very complicated, as the survival rate is no longer being seen as the sole care outcome and the burdens and benefits brought by the treatments are subject to interpretation. This gives rise to growing concerns over what is meant by “good death”, and thus how to define good care near the end of life.

The increasing number of people with palliative care needs has also led to an unprecedented dependence on carer support for high-quality care. There is a growing realization that the provision of palliative care is a vital element to meet the complex needs of these patients and their family including various distressing symptoms, as well as social and psycho-spiritual concerns from the time of diagnosis until the last phase of life, and thereby to optimize their quality of life.

This Special Issue is intended to inform policy and practice for improving palliative and end-of-life care. The topics of interest include but are not limited to identifying personal, socio-cultural, environmental, and legal factors influencing the quality of end-of-life care, perspectives or experiences of various stakeholders towards palliative and end-of-life care, the palliative care needs of patients and family members, developing and testing of innovative interventions in supporting caregiving in palliative care or promoting palliative care, and in optimizing the quality of life of people with life-limiting conditions and their family members. Different kinds of articles, such as original articles, literature reviews, and brief reports, are welcomed.

Dr. Doris Y. P. Leung
Dr. Helen Y. L. Chan
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • Palliative care
  • End-of-life care
  • Hospice care
  • Advance care planning
  • Caregiving
  • Complex chronic condition
  • Life-limiting condition
  • Life-threatening diseases
  • Quality of life
  • Policy

Published Papers (17 papers)

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Editorial

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7 pages, 268 KiB  
Editorial
Palliative and End-of-Life Care: More Work is Required
by Doris Y. P. Leung and Helen Y. L. Chan
Int. J. Environ. Res. Public Health 2020, 17(20), 7429; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17207429 - 13 Oct 2020
Cited by 6 | Viewed by 4469
Abstract
There is currently growing recognition of the complex care needs of patients with life-limiting conditions and their family members, prompting the need to revisit the goals of medicine. This Special Issue reflects a broad research agenda in the field of palliative and end-of-life [...] Read more.
There is currently growing recognition of the complex care needs of patients with life-limiting conditions and their family members, prompting the need to revisit the goals of medicine. This Special Issue reflects a broad research agenda in the field of palliative and end-of-life care. A total of 16 papers of empirical studies and systematic review are included spanning five domains, namely, patient, caregiver, healthcare provider, policy, and methodology. The results generally suggest the merits of palliative care and reveal room for further improvement in palliative care education, manpower, infrastructure, and legal and policy frameworks. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care)

Research

Jump to: Editorial, Review

16 pages, 959 KiB  
Article
Hospice Employees’ Perceptions of Their Work Environment: A Focus Group Perspective
by Rebecca H. Lehto, Carrie Heeter, Jeffrey Forman, Tait Shanafelt, Arif Kamal, Patrick Miller and Michael Paletta
Int. J. Environ. Res. Public Health 2020, 17(17), 6147; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17176147 - 24 Aug 2020
Cited by 18 | Viewed by 4830
Abstract
Burnout in healthcare professionals can lead to adverse effects on physical and mental health, lower quality of care, and workforce shortages as employees leave the profession. Hospice professionals are thought to be at particularly high risk for burnout. The purpose of the study [...] Read more.
Burnout in healthcare professionals can lead to adverse effects on physical and mental health, lower quality of care, and workforce shortages as employees leave the profession. Hospice professionals are thought to be at particularly high risk for burnout. The purpose of the study was to evaluate workplace perceptions of interdisciplinary hospice care workers who provide care to patients at end of life. Six focus groups and one semi-structured interview were conducted with mixed group of social workers, managers, nurses, hospice aides, chaplains, support staff, and a physician (n = 19). Findings from the groups depicted both rewards and challenges of hospice caregiving. Benefits included intrinsic satisfaction from the work, receiving positive patient and family feedback, and teamwork. Challenges reflected issues with workload, technology issues, administrative demands, travel-related problems, communication and interruptions, difficulties with taking time off from work and maintaining work-life integration, and coping with witnessing grief/loss. Hospice workers glean satisfaction from making meaningful differences in the lives of patients with terminal illness and their family members. It is an expected part of the job that certain patients and situations are particularly distressing; team support and targeted grief support is available for those times. Participants indicated that workload and administrative demands rather than dealing with death and dying were the biggest contributors to burnout. Participants reported episodic symptoms of burnout followed by deliberate steps to alleviate these symptoms. Notably, for all except one of the participants, burnout was cyclical. Symptoms would begin, they would take steps to deal with it (e.g., taking a mental health day), and they recovered. At an organizational level, a multipronged approach that includes both personal and occupational strategies is needed to support professional caregivers and help mitigate the stressors associated with hospice work. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care)
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12 pages, 580 KiB  
Article
Source of Social Support and Caregiving Self-Efficacy on Caregiver Burden and Patient’s Quality of Life: A Path Analysis on Patients with Palliative Care Needs and Their Caregivers
by Doris Y. P. Leung, Helen Y. L. Chan, Patrick K. C. Chiu, Raymond S. K. Lo and Larry L. Y. Lee
Int. J. Environ. Res. Public Health 2020, 17(15), 5457; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17155457 - 29 Jul 2020
Cited by 32 | Viewed by 5180
Abstract
Few studies have explored the inter-relationships of sources of social support and caregiving self-efficacy with caregiver burden and patient’s quality of life among patients with palliative care needs and their caregivers. This study tested the associations of two sources of social support (family [...] Read more.
Few studies have explored the inter-relationships of sources of social support and caregiving self-efficacy with caregiver burden and patient’s quality of life among patients with palliative care needs and their caregivers. This study tested the associations of two sources of social support (family and friends) and the mediating role of caregiving self-efficacy on caregiver burden and patient’s quality of life. A convenience sample of 225 patient–caregiver dyads recruited between September 2016 and May 2017 from three hospitals in Hong Kong was included in the current analysis. Results showed that the final model provided a satisfactory fit (SRMR = 0.070, R-RMSEA = 0.055 and R-CFI = 0.926) with the data, as good as the hypothesized model did (p = 0.326). Significant associations were detected. Family support had a significant negative indirect effect on caregiver burden and a significant positive indirect effect on patient’s quality of life through caregiving self-efficacy, whereas friend support had a significant positive direct effect on caregiver burden but a minimal effect, if any, on patient’s quality of life. These findings emphasized (1) the importance of caregiving self-efficacy in improving caregiver burden and patient’s quality of life and that (2) sources of social support may be an important dimension moderating the associations of caregiving self-efficacy with caregiver burden and patient’s quality of life. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care)
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14 pages, 646 KiB  
Article
Quality of Palliative and End-Of-Life Care in Hong Kong: Perspectives of Healthcare Providers
by Eliza Lai-Yi Wong, Nicole Kiang, Roger Yat-Nork Chung, Janice Lau, Patsy Yuen-Kwan Chau, Samuel Yeung-Shan Wong, Jean Woo, Emily Ying-Yang Chan and Eng-Kiong Yeoh
Int. J. Environ. Res. Public Health 2020, 17(14), 5130; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17145130 - 16 Jul 2020
Cited by 26 | Viewed by 6842
Abstract
Background: In response to population aging, there is a need for health systems to focus on care for chronic disease, specifically palliative care, while focusing on people-centered care. The objective of this study is to explore the healthcare system enablers and barriers to [...] Read more.
Background: In response to population aging, there is a need for health systems to focus on care for chronic disease, specifically palliative care, while focusing on people-centered care. The objective of this study is to explore the healthcare system enablers and barriers to the provision of quality palliative and end-of-life care from the perspective of healthcare professionals. Materials and Methods: Using purposive sampling, fifteen focus group interviews and nine individual interviews involving 72 healthcare providers were conducted. Primary qualitative data were collected between May 2016 and July 2017. All recorded discussions were transcribed verbatim and analyzed. A thematic framework was developed. Results: The provision of quality palliative and end-of-life care is influenced by the interaction and integration of nine sub-themes under four identified themes: (1) political context; (2) organization setting; (3) support to patients, caregivers, and family members, and (4) healthcare workers and the public. Conclusions: Integration of palliative and end-of-life care is an important pillar of healthcare service to improve quality of life by addressing patients’ values, wishes and preference, and assist their family to handle challenges at the end stage of life. Further improvements to the service framework would be required, specifically in the political framework, multidisciplinary approach, and readiness and competence in healthcare workers and community. These were highlighted in our study as key components in service provision to ensure that patients can receive continuous and integrated care between hospitals and the community as well as dignified care at the end stage of life. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care)
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18 pages, 775 KiB  
Article
Examining the Gaps and Issues of End-of-Life Care among Older Population through the Lens of Socioecological Model—A Multi-Method Qualitative Study of Hong Kong
by Roger Yat-Nork Chung, Dong Dong, Nancy Nam Sze Chau, Patsy Yuen-Kwan Chau, Eng Kiong Yeoh and Eliza Lai-Yi Wong
Int. J. Environ. Res. Public Health 2020, 17(14), 5072; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17145072 - 14 Jul 2020
Cited by 10 | Viewed by 3905
Abstract
End-of-life (EOL) care for terminal illness and life-limiting conditions is a sector in the health service spectrum that is drawing increased attention. Despite having the world’s longest life expectancy and an ever-escalating demand for long-term care, Hong Kong’s EOL care was underdeveloped. The [...] Read more.
End-of-life (EOL) care for terminal illness and life-limiting conditions is a sector in the health service spectrum that is drawing increased attention. Despite having the world’s longest life expectancy and an ever-escalating demand for long-term care, Hong Kong’s EOL care was underdeveloped. The current study aims to provide a holistic picture of gaps and issues to EOL care in Hong Kong. Data collection was conducted using a multi-method qualitative approach that included focus groups and in-depth interviews with key informants and stakeholders, and longitudinal case studies with patients and families. Deductive thematic analysis was used to examine service gaps in current EOL care through the lens of a socioecological model where gaps and issues in various nested, hierarchical levels of care as well as the relationships between these levels were studied in detail. Using the model, we identified gaps and issues of EOL care among older populations in Hong Kong at the policy, legal, community, institutional, as well as intrapersonal and interpersonal levels. These include but are not limited to a lack of overarching EOL care policy framework, ambiguity in the legal basis for mental incapacity, legislative barriers for advance directives, inadequate capacity, resources, and support in the community to administer EOL care, inadequate knowledge, training, and resources for EOL care in health and social care sectors, inadequate medical-social interface, general reluctance and fear of death and dying, as well as the cultural interpretation of filial piety that may lengthen the suffering of the dying patients. Findings highlight the multi-level gaps and issues of EOL care in a place where western and eastern culture meet, and shed light on how best to design more effective and comprehensive policy interventions that will likely have a more sustainable and instrumental impact on facilitating person-centered EOL care during the end of life. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care)
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12 pages, 1436 KiB  
Article
Burden of Healthcare Utilization among Chronic Obstructive Pulmonary Disease Patients with and without Cancer Receiving Palliative Care: A Population-Based Study in Taiwan
by Li-Ting Kao, Kuo-Chen Cheng, Chin-Ming Chen, Shian-Chin Ko, Ping-Jen Chen, Kuang-Ming Liao and Chung-Han Ho
Int. J. Environ. Res. Public Health 2020, 17(14), 4980; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17144980 - 10 Jul 2020
Cited by 6 | Viewed by 2501
Abstract
Chronic obstructive pulmonary disease (COPD) is a chronic disease that burdens patients worldwide. This study aims to discover the burdens of health services among COPD patients who received palliative care (PC). Study subjects were identified as COPD patients with ICU and PC records [...] Read more.
Chronic obstructive pulmonary disease (COPD) is a chronic disease that burdens patients worldwide. This study aims to discover the burdens of health services among COPD patients who received palliative care (PC). Study subjects were identified as COPD patients with ICU and PC records between 2009 and 2013 in Taiwan’s National Health Insurance Research Database. The burdens of healthcare utilization were analyzed using logistic regression to estimate the difference between those with and without cancer. Of all 1215 COPD patients receiving PC, patients without cancer were older and had more comorbidities, higher rates of ICU admissions, and longer ICU stays than those with cancer. COPD patients with cancer received significantly more blood transfusions (Odds Ratio, OR: 1.66; 95% C.I.: 1.11–2.49) and computed tomography scans (OR: 1.88; 95% C.I.: 1.10–3.22) compared with those without cancer. Bronchoscopic interventions (OR: 0.26; 95% C.I.: 0.07–0.97) and inpatient physical restraints (OR: 0.24; 95% C.I.: 0.08–0.72) were significantly more utilized in patients without cancer. COPD patients without cancer appeared to receive more invasive healthcare interventions than those without cancer. The unmet needs and preferences of patients in the life-limiting stage should be taken into consideration for the quality of care in the ICU environment. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care)
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13 pages, 1609 KiB  
Article
Establishment of a Palliative Care Consultation Service (PCCS) in an Acute Hospital Setting
by Peter Tom Engel, Tharshika Thavayogarajah, Dennis Görlich and Philipp Lenz
Int. J. Environ. Res. Public Health 2020, 17(14), 4977; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17144977 - 10 Jul 2020
Cited by 8 | Viewed by 2425
Abstract
Background and study aims: Acute health service requires focused palliative care (PC). This study was performed to provide guidance for the establishment of a palliative care consultation service (PCCS). Patients and methods: This study was conceived as a retrospective single-center study [...] Read more.
Background and study aims: Acute health service requires focused palliative care (PC). This study was performed to provide guidance for the establishment of a palliative care consultation service (PCCS). Patients and methods: This study was conceived as a retrospective single-center study for observing, analyzing and evaluating the initial setup of a PCCS from 1 May 2015 to 31 May 2018. Patients from Muenster University Hospital with advanced life-limiting diseases, identified to require PC, were included. Results: PCCS was requested from various departments, for between 20 and 80 patients per month, corresponding to a total of 2359 for the study period. Requests were highest in internal medicine (27.3%), gynecology (18.1%) and radiotherapy (17.6%). Time to referral was significantly shorter in departments with special PCCS ward rounds (6 ± 9 vs. 12 ± 22 days, p < 0.001). The most frequently reported symptoms were fatigue, pain and loss of appetite. Pain was frequently localized in the stomach (20.4%), back (17.1%), or in the head and neck area (14.9%). After the first PCCS consultation, 254 patients (90%) reported sufficient pain relief after 48 h. An introduction/modification of painkiller medication, which was recommended for 142 inpatients, was implemented in 57.0% of cases by the respective departments. Overall, the direct realization of PCCS recommendations reached only 50% on average. Conclusions: Besides an analysis of the ability to address the symptoms of the referred patients by the PCCS, this study highlights the importance of the interaction between PCCS and other departments. It further elucidates the role and possibilities of this service both in regular ward rounds and individual staff contacts. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care)
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10 pages, 798 KiB  
Article
Shock Index: A Simple and Effective Clinical Adjunct in Predicting 60-Day Mortality in Advanced Cancer Patients at the Emergency Department
by Tzu-Heng Cheng, Yi-Da Sie, Kuang-Hung Hsu, Zhong Ning Leonard Goh, Cheng-Yu Chien, Hsien-Yi Chen, Chip-Jin Ng, Chih-Huang Li, Joanna Chen-Yeen Seak, Chen-Ken Seak, Yi-Tung Liu, Chen-June Seak and SPOT Investigators
Int. J. Environ. Res. Public Health 2020, 17(13), 4904; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17134904 - 07 Jul 2020
Cited by 7 | Viewed by 2629
Abstract
Deciding between palliative and overly aggressive therapies for advanced cancer patients who present to the emergency department (ED) with acute issues requires a prediction of their short-term survival. Various scoring systems have previously been studied in hospices or intensive care units, though they [...] Read more.
Deciding between palliative and overly aggressive therapies for advanced cancer patients who present to the emergency department (ED) with acute issues requires a prediction of their short-term survival. Various scoring systems have previously been studied in hospices or intensive care units, though they are unsuitable for use in the ED. We aim to examine the use of a shock index (SI) in predicting the 60-day survival of advanced cancer patients presenting to the ED. Identified high-risk patients and their families can then be counseled accordingly. Three hundred and five advanced cancer patients who presented to the EDs of three tertiary hospitals were recruited, and their data retrospectively analyzed. Relevant data regarding medical history and clinical presentation were extracted, and respective shock indices calculated. Multivariate logistic regression analyses were performed. Receiver operating characteristic (ROC) curves were plotted to evaluate the predictive performance of the SI. Nonsurvivors within 60 days had significantly lower body temperatures and blood pressure, as well as higher pulse rates, respiratory rates, and SI. Each 0.1 SI increment had an odds ratio of 1.39 with respect to 60-day mortality. The area under the ROC curve was 0.7511. At the optimal cut-off point of 0.94, the SI had 81.38% sensitivity and 73.11% accuracy. This makes the SI an ideal evaluation tool for rapidly predicting the 60-day mortality risk of advanced cancer patients presenting to the ED. Identified patients can be counseled accordingly, and they can be assisted in making informed decisions on the appropriate treatment goals reflective of their prognoses. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care)
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14 pages, 366 KiB  
Article
Knowledge, Attitudes and Expectations of Physicians with Respect to Palliative Care in Ecuador: A Qualitative Study
by Viviana Dávalos-Batallas, Vinita Mahtani-Chugani, Carla López-Núñez, Víctor Duque, Fatima Leon-Larios, Maria-de-las-Mercedes Lomas-Campos and Emilio Sanz
Int. J. Environ. Res. Public Health 2020, 17(11), 3906; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17113906 - 31 May 2020
Cited by 9 | Viewed by 2686
Abstract
Background: The worldwide need for palliative care is high, especially in mid- income countries like Ecuador, where the percentage of patients receiving such care is very small due to the scarcity of infrastructure and specialized personnel and to the unequal distribution in the [...] Read more.
Background: The worldwide need for palliative care is high, especially in mid- income countries like Ecuador, where the percentage of patients receiving such care is very small due to the scarcity of infrastructure and specialized personnel and to the unequal distribution in the country. The objective of this study is to explore the knowledge, attitudes and expectations related to palliative care of the physicians in Ecuador. Methods: A qualitative study based on 28 semi-structured interviews, from March 2014 to November 2016, with physicians working in four cities in Ecuador recruited through the snowball technique. Thematic analysis was developed supported by the ATLAS.ti software. Results: Five core themes were identified: (1) training, (2) health policy, (3) professionals’ activities, (4) health services and (5) development of palliative care in Ecuador. Conclusions: Strategies are needed which intensify the training of medical professional in palliative care, as well as avail the human resources and materials for providing it. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care)
8 pages, 318 KiB  
Article
Spanish Version of the Attitude Towards Euthanasia Scale
by Elia Fernández-Martínez, Juan José Fernández-Muñoz, Cristina Romero-Blanco, María Laura Parra-Fernández and María Dolores Onieva-Zafra
Int. J. Environ. Res. Public Health 2020, 17(11), 3855; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17113855 - 29 May 2020
Cited by 2 | Viewed by 3043
Abstract
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 [...] Read more.
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 α = 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. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care)
9 pages, 299 KiB  
Article
A National, Palliative Care Competency Framework for Undergraduate Medical Curricula
by Jolien Pieters, Diana H.J.M. Dolmans, Marieke H.J. van den Beuken-van Everdingen, Franca C. Warmenhoven, Judith H. Westen and Daniëlle M.L. Verstegen
Int. J. Environ. Res. Public Health 2020, 17(7), 2396; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17072396 - 01 Apr 2020
Cited by 13 | Viewed by 3546
Abstract
As nearly all doctors deal with patients requiring palliative care, it is imperative that palliative care education starts early. This study aimed to validate a national, palliative care competency framework for undergraduate medical curricula. We conducted a Delphi study with five groups of [...] Read more.
As nearly all doctors deal with patients requiring palliative care, it is imperative that palliative care education starts early. This study aimed to validate a national, palliative care competency framework for undergraduate medical curricula. We conducted a Delphi study with five groups of stakeholders (palliative care experts, physicians, nurses, curriculum coordinators, and junior doctors), inviting them to rate a competency list. The list was organized around six key competencies. For each competency, participants indicated the level to which students should have mastered the skill at the end of undergraduate training. Stability was reached after two rating rounds (N = 82 round 1, N = 54 round 2). The results showed high levels of agreement within and between stakeholder groups. Participants agreed that theoretical knowledge is not enough: Students must practice palliative care competencies, albeit to varying degrees. Overall, communication and personal development and well-being scored the highest: Junior doctors should be able to perform these in the workplace under close supervision. Advance care planning scored the lowest, indicating performance in a simulated setting. A wide range of stakeholders validated a palliative care competency framework for undergraduate medical curricula. This framework can be used to guide teaching about palliative care. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care)
9 pages, 760 KiB  
Article
Changes in Body Mass Index, Energy Intake, and Fluid Intake over 60 Months Premortem as Prognostic Factors in Frail Elderly: A Post-Death Longitudinal Study
by Yoshiaki Kawakami and Jun Hamano
Int. J. Environ. Res. Public Health 2020, 17(6), 1823; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17061823 - 11 Mar 2020
Cited by 6 | Viewed by 3196
Abstract
Survival prediction is considered difficult in elderly individuals with cognitive frailty or dementia that leads to death. The aim of this study was to verify temporal changes in body mass index (BMI), energy intake, and fluid intake measured continuously in frail elderly people [...] Read more.
Survival prediction is considered difficult in elderly individuals with cognitive frailty or dementia that leads to death. The aim of this study was to verify temporal changes in body mass index (BMI), energy intake, and fluid intake measured continuously in frail elderly people as prognostic factors for death. We assessed 106 frail elderly individuals who received >2-year care at an elderly care facility and died at the facility. We analyzed temporal changes in BMI, energy intake, and fluid intake from a maximum of 60 months premortem to death and determined the relationship between these parameters. BMI was significantly below the reference values from 9 months prior to death, but energy intake remained constant from 2 months prior to death to death (p < 0.001). However, the mean fluid intake decreased suddenly immediately prior to death. We compared the changes in each parameter during the year prior to death and during the preceding year and found significant differences in all parameters (p < 0.001). From 60 months prior to death to death, BMI, energy intake, and fluid intake decreased in the same order over time. Therefore, these parameters can be used as prognostic factors for death in frail elderly people. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care)
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10 pages, 289 KiB  
Article
Diagnosing Gaps in the Development of Palliative and End-of-Life Care: A Qualitative Exploratory Study
by Helen Y. L. Chan, Diana T. F. Lee and Jean Woo
Int. J. Environ. Res. Public Health 2020, 17(1), 151; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17010151 - 24 Dec 2019
Cited by 22 | Viewed by 4565
Abstract
A global report found that the quality of dying in Hong Kong lagged behind that of other high-income economies. This study aims to examine the service gaps by conducting a qualitative exploratory study from multiple stakeholders’ perspectives. Purposive and snowball sampling strategies were [...] Read more.
A global report found that the quality of dying in Hong Kong lagged behind that of other high-income economies. This study aims to examine the service gaps by conducting a qualitative exploratory study from multiple stakeholders’ perspectives. Purposive and snowball sampling strategies were used to maximize variation in the sample. We interviewed 131 participants, including patients, family members, health care providers, administrators, lawyers, and policy makers. The situation analysis helped identify the facilitators and barriers at individual, organizational, and socio-cultural levels that affect service development. Findings showed that awareness on palliative and end-of-life care is growing, but the existing care is limited in terms of acceptability, coverage, variation in practices, continuity, and sustainability. A number of policy, economic, socio-cultural, environmental, and legal factors were also found to hinder service development. Findings of this study demonstrated that the development of palliative and end-of-life care services involved a paradigm shift relating to society as a whole. The overarching theme is to formulate a government-led policy framework. Furthermore, a public health approach has been advocated to create a supportive environment for service development. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care)
12 pages, 335 KiB  
Article
Student’s Inventory of Professionalism (SIP): A Tool to Assess Attitudes towards Professional Development Based on Palliative Care Undergraduate Education
by Antonio Noguera, María Arantzamendi, Jesús López-Fidalgo, Alfredo Gea, Alberto Acitores, Leire Arbea and Carlos Centeno
Int. J. Environ. Res. Public Health 2019, 16(24), 4925; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph16244925 - 05 Dec 2019
Cited by 6 | Viewed by 3004
Abstract
Introduction: Quality medical education, centered on a patient’s needs, is crucial to develop the health professionals that our society requires. Research suggests a strong contribution of palliative care education to professionalism. The aim of this study was to design and validate a [...] Read more.
Introduction: Quality medical education, centered on a patient’s needs, is crucial to develop the health professionals that our society requires. Research suggests a strong contribution of palliative care education to professionalism. The aim of this study was to design and validate a self-report inventory to measure student’s professional development. Method: Sequential exploratory strategy mixed method. The inventory is built based on the themes that emerged from the analysis of four qualitative studies about nursing and medical students’ perceptions related to palliative care teaching interventions (see Ballesteros et al. 2014, Centeno et al. 2014 and 2017, Rojí et al. 2017). The structure and psychometrics of the inventory obtained is tested in two different surveys with two different groups of medical students. Inventory reliability and construct validity are tested in the first survey group. To verify the inventory structure, a confirmatory factor analysis is performed in a second survey group. Results: The inventory has 33 items and seven dimensions: a holistic approach, caring for and understanding the patient, personal growth, teamwork, decision-making, patient evaluation, and being a health care professional. Cronbach’s-alpha was 0.73–0.84 in all seven domains, ICC: 0.95. The confirmatory factor analysis comparative fit index (CFI) was 1 with a standardized root mean square Index 0.088 (SRMR) and obtained a 0.99 goodness-of-fit R-square coefficient. Conclusions: this new inventory is grounded on student’s palliative care teaching experiences and seems to be valid to assess student’s professional development. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care)
11 pages, 307 KiB  
Article
Validation of the Hong Kong Chinese version of the Support Person’s Unmet Needs Survey—Short Form
by Doris Y. P. Leung, Yin-Ping Choy, Wai-Man Ling, Elaine Yim, Winnie K. W. So, Carmen W. H. Chan and Yim-Wah Mak
Int. J. Environ. Res. Public Health 2019, 16(21), 4103; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph16214103 - 24 Oct 2019
Cited by 4 | Viewed by 2699
Abstract
This study describes the psychometric properties of a Hong Kong Chinese version of the short form of the Support Person’s Unmet Needs Survey (SPUNS-SF) for caregivers of patients with cancer. A convenience sample of 280 patient-caregiver dyads was recruited between April and June [...] Read more.
This study describes the psychometric properties of a Hong Kong Chinese version of the short form of the Support Person’s Unmet Needs Survey (SPUNS-SF) for caregivers of patients with cancer. A convenience sample of 280 patient-caregiver dyads was recruited between April and June 2018. A subsample of 70 caregivers completed the survey again, two weeks later. A confirmatory factor analysis (CFA) examined the instrument’s factorial structure, ordinal alpha coefficients evaluated the internal consistency, and intra-class correlation coefficients (ICCs) assessed the test-retest reliability. Convergence validity was evaluated by the correlations with sleep disturbance and caregiver burden in caregivers. The Hong Kong Chinese version of the SPUNS-SF (SPUNS-SFHKC) had a high completion rate of 96.8% (271/280) among caregivers. The original five-factor model provided an acceptable fit with the data in the CFA. The ordinal alpha coefficients were 0.866–0.945, and the two-week test-retest reliabilities were 0.524–0.678. The correlations of the five domains of the SPUNS-SFHKC with caregiver burden were 0.257–0.446, and for sleep disturbance were 0.075–0.464. The SPUNS-SFHKC has a suitable factor structure and psychometric properties for use in assessing unmet supportive needs among Chinese caregivers of patients with cancer. The applicability of the instrument for long-term use still needs to be studied. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care)

Review

Jump to: Editorial, Research

15 pages, 642 KiB  
Review
End-of-Life Cancer Care Resource Utilisation in Rural Versus Urban Settings: A Systematic Review
by Jessica Cerni, Joel Rhee and Hassan Hosseinzadeh
Int. J. Environ. Res. Public Health 2020, 17(14), 4955; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17144955 - 09 Jul 2020
Cited by 15 | Viewed by 3863
Abstract
Background: Despite the advances in End-of-life (EOL) cancer care, disparities remain in the accessibility and utilisation of EOL cancer care resources. Often explained by socio-demographic factors, geographic variation exists in the availability and provision of EOL cancer care services among EOL cancer decedents [...] Read more.
Background: Despite the advances in End-of-life (EOL) cancer care, disparities remain in the accessibility and utilisation of EOL cancer care resources. Often explained by socio-demographic factors, geographic variation exists in the availability and provision of EOL cancer care services among EOL cancer decedents across urban versus rural settings. This systematic review aims to synthesise mortality follow-back studies on the patterns of EOL cancer care resource use for adults (>18 years) during end-of-life cancer care. Methods: Five databases were searched and data analysed using Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Inclusion criteria involved; a) original research; b) quantitative studies; c) English language; d) palliative care related service use in adults (>18 years) with any malignancy excluding non-melanoma skin cancers; e) exclusive end of life focus; f) urban-rural focus. Narrative reviews and discussions were excluded. Results: 24 studies met the inclusion criteria. End-of-life cancer care service utilisation patterns varied by rurality and treatment intent. Rurality was strongly associated with higher rates of Emergency Department (ED) visits and hospitalisations and lower rates of hospice care. The largest inequities between urban and rural health service utilisation patterns were explained by individual level factors including age, gender, proximity to service and survival time from cancer diagnosis. Conclusions: Rurality is an important predictor for poorer outcomes in end-of-life cancer care. Findings suggest that addressing the disparities in the urban-rural continuum is critical for efficient and equitable palliative cancer care. Further research is needed to understand barriers to service access and usage to achieve optimal EOL care for all cancer patient populations. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care)
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16 pages, 617 KiB  
Review
A Methodological Review of Mixed Methods Research in Palliative and End-of-Life Care (2014–2019)
by Sergi Fàbregues, Quan Nha Hong, Elsa Lucia Escalante-Barrios, Timothy C. Guetterman, Julio Meneses and Michael D. Fetters
Int. J. Environ. Res. Public Health 2020, 17(11), 3853; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph17113853 - 29 May 2020
Cited by 28 | Viewed by 6981
Abstract
Mixed methods research has been increasingly recognized as a useful approach for describing and explaining complex issues in palliative care and end-of-life research. However, little is known about the use of this methodology in the field and the ways in which mixed methods [...] Read more.
Mixed methods research has been increasingly recognized as a useful approach for describing and explaining complex issues in palliative care and end-of-life research. However, little is known about the use of this methodology in the field and the ways in which mixed methods studies have been reported. The purpose of this methodological review was to examine the characteristics, methodological features and reporting quality of mixed methods articles published in palliative care research. The authors screened all articles published in eight journals specialized in palliative care between January 2014 and April 2019. Those that reported a mixed methods study (n = 159) were included. The Good Reporting of a Mixed Methods Study (GRAMMS) criteria were used to assess reporting quality. Findings showed that 57.9% of the identified studies used a convergent design and 82.4% mentioned complementarity as their main purpose for using a mixed methods approach. The reporting quality of the articles generally showed a need for improvement as authors usually did not describe the type of mixed methods design used and provided little detail on the integration of quantitative and qualitative methods. Based on the findings, recommendations are made to improve the quality of reporting of mixed methods articles in palliative care. Full article
(This article belongs to the Special Issue Palliative and End-of-Life Care)
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