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Public Health Palliative Care and Public Palliative Care Education

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A special issue of Healthcare (ISSN 2227-9032). This special issue belongs to the section "Community Care".

Deadline for manuscript submissions: closed (31 December 2022) | Viewed by 32828

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Special Issue Editors

Dr. Georg Bollig

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Guest Editor

Department of Anesthesiology, Intensive Care, Palliative Medicine and Pain Therapy, HELIOS Klinikum Schleswig, 24837 Schleswig, Germany
Interests: palliative care; death; dying; home death; hospital death; tele-palliative care
Special Issues, Collections and Topics in MDPI journals

Dr. John Rosenberg

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Guest Editor

School of Nursing, Midwifery and Paramedicine, University of the Sunshine Coast, Caboolture QLD 4510, Australia
Interests: public health; palliative care; death literacy

Special Issue Information

Dear Colleagues,

Today, palliative care is seen as an essential part of public health care. The provision of palliative care in the community is a public duty. Palliative care and end-of-life care at home for all in need can only be done as a cooperation of healthcare professionals and citizens. The compassionate community approach introduced by Kellehear has led to the recognition of palliative care as everyone’s business and an important public health topic. Unfortunately, death literacy is not yet common among the public. Public awareness of palliative care is low, and public palliative care education is rarely implemented in most communities. Nevertheless, some educational programs for public palliative care education, for example, the Last Aid Course, do exist in some countries in Europe, Brazil and Australia.

There are many open questions concerning public health palliative care and public education. Empowerment of citizens is needed to enable them to participate in palliative care and end-of-life care provision. Cultural aspects of public health palliative care must be explored and included in future public palliative care education programs.

The goal of this Special Issue on “Public Health Palliative Care and Public Palliative Care Education” is to highlight recent advances and challenges in public health palliative care and education. We welcome original research, reviews and other papers that address these challenges and encourage submissions that cover a broad range of topics, including social and cultural aspects and experiences with public health palliative care and public palliative care education in the communities.

This Special Issue will be of interest to researchers and clinicians from various fields and to policymakers, officials, and politicians who have to make public health decisions and policies for the future facing demographic changes and an increased need for palliative care and end-of-life care in the community. The current COVID-19 pandemic has shown the importance of a broad implementation of palliative care in all communities and societies. Manuscripts on lessons learned from the COVID-19 pandemic connected to public palliative care education are also welcome.

We look forward to receiving your contributions.

Dr. Georg Bollig
Dr. John Rosenberg
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. Healthcare is an international peer-reviewed open access semimonthly 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 2700 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

Public health
Palliative care
Education
Last Aid
Home death
Information
Awareness
Compassionate communities

Published Papers (13 papers)

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Editorial

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4 pages, 184 KiB

Open AccessEditorial

Public Health Palliative Care and Public Palliative Care Education

by Georg Bollig and John P. Rosenberg

Healthcare 2023, 11(5), 745; https://doi.org/10.3390/healthcare11050745 - 03 Mar 2023

Cited by 1 | Viewed by 1254

Abstract

This Special Issue, “Public Health Palliative Care (PHPC) and Public Palliative Care Education (PPCE)”, highlights recent advances and challenges in PHPC and PPCE [...] Full article

(This article belongs to the Special Issue Public Health Palliative Care and Public Palliative Care Education)

Research

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10 pages, 473 KiB

Open AccessArticle

“I Needed to Know, No Matter What I Do, I Won’t Make It Worse”—Expectations and Experiences of Last Aid Course Participants in Germany—A Qualitative Pilot Study

by Chantal Giehl, Nino Chikhradze, Georg Bollig, Horst Christian Vollmar and Ina Otte

Healthcare 2023, 11(4), 592; https://doi.org/10.3390/healthcare11040592 - 16 Feb 2023

Cited by 2 | Viewed by 1483

Abstract

Background: The need to care for a loved one in a palliative state can lead to severe physical as well as psychological stress. In this context, Last Aid courses have been developed to support caring for relatives and to stimulate the public discussion on death and dying. The purpose of our pilot study is to gain an understanding of the attitudes, values, and difficulties of relatives caring for a terminally ill person. Methods: A qualitative approach was used in form of five semi-structured guided pilot interviews with lay persons who recently attended a Last Aid course. The transcripts of the interviews were analyzed following Kuckartz’s content analysis. Results: Overall, the interviewed participants have a positive attitude toward Last Aid courses. They perceive the courses as helpful as they provide knowledge, guidance, and recommendations of action for concrete palliative situations. Eight main topics emerged during analysis: expectations regarding the course, transfer of knowledge, reducing fear, the Last Aid course as a safe space, support from others, empowerment and strengthening of own skills, and the improvement needs of the course. Conclusions: In addition to the expectations before participation and the knowledge transfer during the course, the resulting implications for its application are also of great interest. The pilot interviews show initial indications that the impact, as well as supportive and challenging factors regarding the ability to care for relatives to cope, should be explored in further research. Full article

(This article belongs to the Special Issue Public Health Palliative Care and Public Palliative Care Education)

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11 pages, 252 KiB

Open AccessArticle

Last Aid Course—The Slovenian Experience

by Erika Zelko, Larisa Vrbek and Melita Koletnik

Healthcare 2022, 10(7), 1154; https://doi.org/10.3390/healthcare10071154 - 21 Jun 2022

Cited by 1 | Viewed by 1423

Abstract

Educating and raising awareness among lay members of the public about palliative care can significantly improve the care for terminally ill patients and their quality of life. This paper reports on the survey aimed at assessing the experience and expectations of participants in the Last Aid course launched in Slovenia in 2019 to train hospice volunteers and promote dialogue on death and dying. The course implementation was supported by materials prepared, translated, and/or adapted from German under the PO-LAST project, which linked Slovenian medical and healthcare professionals, hospice representatives, and university students. The Last Aid course follows an international four-module curriculum that has been successfully applied in 18 countries so far. In Slovenia, the course was delivered 30 times with 21 in-person deliveries and 9 online events attended by 450 participants of different sexes, ages, and professions. The surveyed population included 250 people who returned the evaluation questionnaires by October 2020. The aim of the analysis was to gain insight that can be applied broadly in future work and research on adult education on palliative care and the erasure of death-related taboos. Full article

(This article belongs to the Special Issue Public Health Palliative Care and Public Palliative Care Education)

19 pages, 1310 KiB

Open AccessEditor’s ChoiceArticle

Last Aid Training Online: Participants’ and Facilitators’ Perceptions from a Mixed-Methods Study in Rural Scotland

by Leah Macaden, Kirsten Broadfoot, Clare Carolan, Kevin Muirhead, Siobhan Neylon and Jeremy Keen

Healthcare 2022, 10(5), 918; https://doi.org/10.3390/healthcare10050918 - 16 May 2022

Cited by 5 | Viewed by 2755

Abstract

(1) Background: Palliative and end-of-life care services are increasingly gaining centre stage in health and social care contexts in the UK and globally. Death and dying need are relational processes. Building personal and community capacity along with resilience is vital to support families and communities to normalise death and dying. Last Aid Training (LAT) is one such innovative educational initiative which teaches the general public about the fundamentals of palliative care and promotes public discussion about death and dying. The Highland Hospice [HH] in Scotland has pioneered delivery of LAT in face-to-face settings since March 2019 and online since March 2020 to accommodate pandemic restrictions. (2) Methods: This study used a mixed-methods approach, combining an online survey with LAT participants followed by individual semi-structured qualitative interviews with both LAT participants and facilitators. The primary aim of this study was to investigate the impacts of LAT for participants at the individual, family, and community levels, as well as explore participant and facilitator experiences and perspectives of LAT in an online environment. (3) Results: Overall, this evaluation demonstrates that provision of foundational death literacy education in social contexts enhances the personal knowledge, skills, and confidence of individual community members and supports the notion that this personal growth could lead to strengthened community action. (4) Conclusions: Findings from this study concluded that there is potential to include LAT as the foundational core training to promote death literacy in communities with further exploration to integrate/align LAT with other national/global end-of-life care frameworks. Full article

(This article belongs to the Special Issue Public Health Palliative Care and Public Palliative Care Education)

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16 pages, 764 KiB

Open AccessArticle

Is There a Need for Cultural Adaptation of the Last Aid Course?—A Mixed-Methods Study across the Danish-German Border

by Georg Bollig, Mariam Safi, Marina Schmidt and Hermann Ewald

Healthcare 2022, 10(4), 658; https://doi.org/10.3390/healthcare10040658 - 31 Mar 2022

Cited by 2 | Viewed by 1756

Abstract

Last Aid courses (LAC) have been established in 20 countries in Europe, Australia, and America to improve the public discourse about death and dying and to empower people to contribute to end-of-life care in the community. A mixed-methods approach was used to investigate the views of LAC participants about the course and cultural differences in relation to care and nursing at the end of life in the border region of Germany and Denmark. One-day workshops were held, including Last Aid courses in German and Danish, focus group interviews, and open discussions by the participants. The results show that almost all participants appreciate the LAC as an option to talk and learn about death and end-of-life care. The informants find individual differences more important than cultural differences in end-of-life care but describe differences connected to regulations and organization of services across the border. Suggestions for adaptation and improvement of the LAC include the topics of organization and support across the border, religions, and cultures, and supporting people in grief. The findings of the study will inform a revision of the Last Aid curriculum and future projects across the border and will help to include the views of minorities. Full article

(This article belongs to the Special Issue Public Health Palliative Care and Public Palliative Care Education)

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8 pages, 1974 KiB

Open AccessArticle

The First Step to Initiate Pediatric Palliative Care: Identify Patient Needs and Cooperation of Medical Staff

by Su Hyun Bae and Yeo Hyang Kim

Healthcare 2022, 10(1), 127; https://doi.org/10.3390/healthcare10010127 - 09 Jan 2022

Cited by 4 | Viewed by 1745

Abstract

Few Korean hospitals had experience in pediatric palliative care. Since the beginning of the national palliative care project, interest in pediatric palliative care has gradually increased, but the establishment of professional palliative care is still inadequate due to a lack of indicators. This study aimed to find considerations in the process of initiating palliative care services. The general and clinical characteristics of 181 patients aged less than 24 years who were registered at the pediatric palliative care center from January 2019 to August 2021 were evaluated. Life-limiting condition group 1 had the largest number of patients. The primary need for palliative care was psychological and emotional support, followed by information sharing and help in communication with the medical staff in decision-making processes. Seventy-two patients were technologically dependent, with one to four technical supports for each patient. The registration of patients with cancer increased with time, and the time from disease diagnosis to consultation for pediatric palliative care service was significantly reduced. In conclusion, before starting pediatric palliative care, it is necessary to understand the needs of patients and their families and to cooperate with medical staff. Full article

(This article belongs to the Special Issue Public Health Palliative Care and Public Palliative Care Education)

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13 pages, 1181 KiB

Open AccessArticle

Winners and Losers in Palliative Care Service Delivery: Time for a Public Health Approach to Palliative and End of Life Care

by Samar M. Aoun, Robyn Richmond, Leanne Jiang and Bruce Rumbold

Healthcare 2021, 9(12), 1615; https://doi.org/10.3390/healthcare9121615 - 23 Nov 2021

Cited by 10 | Viewed by 2932

Abstract

Background: Consumer experience of palliative care has been inconsistently and selectively investigated. Methods: People in Western Australia who had experienced a life limiting illness in the past five years were recruited via social media and care organisations (2020) and invited to complete a cross sectional consumer survey on their experiences of the care they received. Results: 353 bereaved carers, current carers and patients responded. The winners, those who received the best quality end-of-life care, were those who were aware of palliative care as an end-of-life care (EOLC) option, qualified for admission to and were able to access a specialist palliative care program, and with mainly a cancer diagnosis. The losers, those who received end-of-life care that was adequate rather than best practice, were those who were unaware of palliative care as an EOLC option or did not qualify for or were unable to access specialist palliative care and had mainly a non-cancer diagnosis. Both groups were well supported throughout their illness by family and a wider social network. However, their family carers were not adequately supported by health services during caregiving and bereavement. Conclusions: A public health approach to palliative and end of life care is proposed to integrate tertiary, primary, and community services through active consumer engagement in the design and delivery of care. Therefore, suggested strategies may also have relevance in many other international settings. Full article

(This article belongs to the Special Issue Public Health Palliative Care and Public Palliative Care Education)

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14 pages, 1145 KiB

Open AccessArticle

A Survey of Attitudes and Beliefs about Care, Compassion and Communities Networks in Palliative Care. A Preliminary Study for the Development of a Compassionate University

by Silvia Librada Flores, Sonia Herminia Roa Trujillo, Nurlian Torrejano Gonzálex, María del Pilar García Buitrago and Miguel Ángel Lucas Díaz

Healthcare 2021, 9(8), 946; https://doi.org/10.3390/healthcare9080946 - 27 Jul 2021

Cited by 2 | Viewed by 2344

Abstract

The aim of this study was to know the level of knowledge, sensitivities and training needs regarding care of people at the end of life in medicine, nursing and psychology students/academic and administration university personnel; and to identify skills to perceive and expressed values related to compassion it in their living environment. Method: a descriptive observational study was conducted among undergraduate medical, nursing and psychologist students, academic and administration personnel of the University of Bogotá in Colombia the survey was based on a web-based questionnaire (November 2019–April 2020). Levels of knowledge and sensitivities about care of people at the end of life, educational needs and compassion were assessed. Descriptive and comparative measures and statistical significance tests used, Student’s t and ANOVA (α = 0.05). Results: 465 people answered the survey; students (82.4%), academic (13.1%) and administration personnel (4.5%). 81.6% knew about palliative care concepts. 64.7% had not cared for other people with advanced or terminal illness. 44.7% talked about death without problems. The most evaluated training competences were humanity, dignity and compassion. Mean levels for compassion by Gilbert’s scale were 70.55 for self-compassion, 72.61 for compassion for others and 60.47 for compassion from others. Significant differences were found by age and gender in self-compassion values. Conclusions: the level of knowledge, sensitivities and training needs regarding care of people at the end of life in the University and the values related to compassion enables the development of Compassionate Universities. Full article

(This article belongs to the Special Issue Public Health Palliative Care and Public Palliative Care Education)

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10 pages, 673 KiB

Open AccessFeature PaperArticle

Lessons Learned from Introducing Last Aid Courses at a University Hospital in Germany

by Evelyn Mueller, Georg Bollig, Gerhild Becker and Christopher Boehlke

Healthcare 2021, 9(7), 906; https://doi.org/10.3390/healthcare9070906 - 16 Jul 2021

Cited by 3 | Viewed by 1825

Abstract

In recent years, so called “Last Aid courses”, concerning end-of-life care for people dying, have successfully been established in community settings in several European countries, Australia, and South-America. To date, they have not been evaluated in hospital settings, where educational needs (concerning care of the dying) are especially high, and may differ from the general population. To evaluate if Last Aid courses are feasible in hospital settings, and if informational needs of hospital staff are met by the curriculum, we introduced Last Aid courses at a university hospital. Five courses were offered; participants of courses 1 and 2 completed surveys with open-ended questions; the answers were used to develop the evaluation questionnaire employed in courses 3–5. In these three courses, 55 of the 56 participants completed an evaluation survey to explore their learning goals and obtain feedback. Courses were fully booked; participants were heterogeneous with regard to their professional background. The most prevalent learning goals were “preparation for emotional aspects in care of dying” (65.5% ratings “very important”), “preparation for medical/care aspects in care of dying” (60.0%), and “knowledge of supportive services and facilities” (54.5%). Overall, the evaluation showed that Last Aid courses were more suitable to educate non-medical hospital staff about care of the dying. Medical staff, in contrast to non-medical staff, more often requested courses with an extended curriculum in order to meet their learning goals. Last Aid courses were well accepted and helped to reduce information deficits on care of the dying in a heterogeneous population of hospital staff. Full article

(This article belongs to the Special Issue Public Health Palliative Care and Public Palliative Care Education)

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15 pages, 966 KiB

Open AccessArticle

A Salutogenic Perspective on End-of-Life Care among the Indigenous Sámi of Northern Fennoscandia

by Lena Kroik, Carol Tishelman, Krister Stoor and Anette Edin-Liljegren

Healthcare 2021, 9(6), 766; https://doi.org/10.3390/healthcare9060766 - 19 Jun 2021

Cited by 2 | Viewed by 2257

Abstract

There is limited empirical data about both health and end-of-life (EoL) issues among the Indigenous Sámi of Fennoscandia. We therefore aimed to investigate experiences of EoL care and support among the Sámi, both from the Sámi community itself as well as from more formalized health and social care services in Sweden. Our primary data source is from focus group discussions (FGDs) held at a Sámi event in 2017 with 24 people, complemented with analysis of previously collected data from 15 individual interviews with both Sámi and non-Sámi informants familiar with dying, death and bereavement among Sámi; “go-along” discussions with 12 Sámi, and individual interviews with 31 Sámi about advance care planning. After initial framework analysis, we applied a salutogenic model for interpretation, focusing on a sense of community coherence. We found a range of generalized resistance resources in relation to the Sámi community, which appeared to support EoL care situations, i.e., Social Organization; Familiarity with EoL Care, Collective Cultural Heritage; Expressions of Spirituality; Support from Majority Care Systems; and Brokerage. These positive features appear to support key components of a sense of community coherence, i.e., comprehensibility, meaningfulness and manageability. We also found relatively few, but notable deficits that may diminish the sense of community coherence, i.e., lack of communication in one’s own language; orientation, familiarity and/or agreement in contacts with formal health and social care systems; and/or support from extended family. The results suggest that there is a robust basis among Sámi for well-functioning EoL care; a challenge is in developing supportive interactions with the majority health and social care systems that support and complement these structures, for partnership in developing care that is meaningful, comprehensible and manageable even in potentially difficult EoL situations. Full article

(This article belongs to the Special Issue Public Health Palliative Care and Public Palliative Care Education)

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16 pages, 1508 KiB

Open AccessFeature PaperArticle

Play Elements as Mechanisms in Intergenerational Arts Activities to Support Community Engagement with End-of-Life Issues

by Max Kleijberg, Rebecca Hilton, Beth Maina Ahlberg and Carol Tishelman

Healthcare 2021, 9(6), 764; https://doi.org/10.3390/healthcare9060764 - 19 Jun 2021

Cited by 5 | Viewed by 2187

Abstract

Talking about dying, death, and loss may be difficult. Arts offer alternative ways of engaging with end-of-life (EoL) issues, but little is known about the means through which this occurs. In this article, we aim to explore mechanisms in arts activities that support community engagement with EoL issues, based on the community-based participatory action research project Studio DöBra. Studio DöBra was developed to support community engagement with EoL issues through intergenerational arts workshops involving community partners, children, and older adults. Initial analysis with community partners indicated the importance of play elements in arts activities. Continued analysis was therefore abductive, using play theory and qualitative data from Studio DöBra arts activities. Through iterative examination of theory and data, we modified play theory as we identified mechanisms supporting community engagement with EoL issues in arts activities. Findings can contribute to theory-building that can inform arts activities supporting community engagement with EoL issues. Full article

(This article belongs to the Special Issue Public Health Palliative Care and Public Palliative Care Education)

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Review

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21 pages, 335 KiB

Open AccessReview

Palliative and End-of-Life Care Service Models: To What Extent Are Consumer Perspectives Considered?

by Bruce Rumbold and Samar M. Aoun

Healthcare 2021, 9(10), 1286; https://doi.org/10.3390/healthcare9101286 - 28 Sep 2021

Cited by 13 | Viewed by 4877

Abstract

This article presents evidence found in a search of national and international literature for patient preferences concerning settings in which to receive palliative care and the appropriateness of different models of palliative care. The purpose was to inform end-of-life care policy and service development of the Western Australian Department of Health through a rapid review of the literature. It was found that consumer experience of palliative care is investigated poorly, and consumer contribution to service and policy design is limited and selective. Most patients experience a mix of settings during their illness, and evidence found by the review has more to do with qualities and values that will contribute to good end-of-life care in any location. Models of care do not make systematic use of the consumer data that are available to them, although an increasingly common theme is the need for integration of the various sources of care supporting dying people. It is equally clear that most integration models limit their attention to end-of-life care provided by health services. Transitions between settings merit further attention. We argue that models of care should take account of consumer experience not by incorporating generalised evidence but by co-creating services with local communities using a public health approach. Full article

(This article belongs to the Special Issue Public Health Palliative Care and Public Palliative Care Education)

Other

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10 pages, 957 KiB

Open AccessEditor’s ChoiceConcept Paper

Implementation of Compassionate Communities: The Taipei Experience

by Chia-Jen Liu, Sheng-Jean Huang and Samuel Shih-Chih Wang

Healthcare 2022, 10(1), 177; https://doi.org/10.3390/healthcare10010177 - 17 Jan 2022

Cited by 5 | Viewed by 3154

Abstract

A worldwide movement to empower communities to support their members to care for each other at the end of life (EoL) has emerged since Kellehear published the Compassionate City Charter. This current report discusses the implementation experiences and preliminary outcomes of Compassionate Communities (CC) in Taipei City. Using the guidance of the Charter and international experiences, we have developed and multiplied a culturally sensitive, sustainable, and holistic CC program that composes municipal hospital, social, and other services, partnering with community leaders, non-governmental organizations, university students, and volunteers. Innovative campaigns, such as workshops, conferences, and the Life Issue Café, have been delivered to facilitate engagement, public education, and leadership with reverence to folk beliefs and the use of existing social networks. We have identified a model with strong collaborative leadership, high participation rates, and ongoing commitment. The gaps between asking/accepting and providing help were bridged when social connectedness was strengthened. We also integrated home-based medical care, home-based palliative care, and advance care planning to help the vulnerable who live alone, with poor status, or with limited resource access, and continue to support the community throughout the COVID-19 pandemic. Full article

(This article belongs to the Special Issue Public Health Palliative Care and Public Palliative Care Education)

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