Development and Impact of Palliative and End-of-Life Care Services

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

Deadline for manuscript submissions: closed (31 August 2024) | Viewed by 9074

Special Issue Editor


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Guest Editor
School of Nursing, Faculty of Health and Social Sciences, The Hong Kong Polytechnic University, 11 Yuk Choi Road, Hung Hom, Kowloon 852, Hong Kong
Interests: burn care; critical care; geriatrics; palliative/end-of-life care; medico-legal issues

Special Issue Information

Dear Colleagues,

Palliative care (PC) is an active care process that seeks to optimize the quality-of-life experience of patients and their families by anticipating, managing, and preventing pain and other biopsychosocial needs. Although PC is distinct and conceptually different from end-of-life care, some studies use both terms concurrently. PC/end-of-life care has evolved to focus on relieving health-related suffering based on need, rather than diagnosis, and existing studies have underscored the need for high-quality PC for adults, children, and their families with serious illness across all care settings. PC/end-of-life care has subsequently become a key component of healthcare services even in traditionally non-PC settings, such as the emergency departments and intensive care units.

The ongoing pandemic has highlighted the urgent need to integrate PC services across the existing health systems. Despite the critical role of PC/end-of-life care in relieving health-related suffering, its integration is faced with varied challenges, such as the lack of policies/guidelines and negative attitudes/perceptions of healthcare staff. Globally, PC/end-of-life care services have evolved over the years, which may offer vital information across both developed and developing settings. Thus, there is a need to take a step back to revisit how these services have developed, evolved, and impacted PC and traditionally non-PC settings. Accordingly, this Special Issue provides a unique avenue for empirical and quality improvement studies on the following topics:

  • Development and integration of PC/end-of-life care services;
  • Impact/effects of PC/end-of-life care services on patients, their families, healthcare practitioners, and health systems;
  • PC/end-of-life care quality improvement projects or strategies to improve the uptake of PC/end-of-life care services;
  • PC/end-of-life care services in traditionally non-PC settings, such the emergency departments and intensive care units.

Dr. Jonathan Bayuo
Guest Editor

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Keywords

  • end-of-life care
  • palliative care
  • health-related suffering
  • quality improvement

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Published Papers (6 papers)

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Research

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15 pages, 1617 KiB  
Article
Destigmatizing Palliative Care among Young Adults—A Theoretical Intervention Mapping Approach
by Yann-Nicolas Batzler, Manuela Schallenburger, Jacqueline Schwartz, Chantal Marazia and Martin Neukirchen
Healthcare 2024, 12(18), 1863; https://doi.org/10.3390/healthcare12181863 - 16 Sep 2024
Viewed by 758
Abstract
Background: In medicine, stigmatization pertains to both afflicted individuals and diseases themselves but can also encompass entire medical fields. In regard to demographic change and the rising prevalence of oncological diseases, palliative care will become increasingly important. However, palliative care faces multiple stigmas. [...] Read more.
Background: In medicine, stigmatization pertains to both afflicted individuals and diseases themselves but can also encompass entire medical fields. In regard to demographic change and the rising prevalence of oncological diseases, palliative care will become increasingly important. However, palliative care faces multiple stigmas. These include equating of palliative care with death and dying. A timely integration of palliative care would have the potential to alleviate symptom burden, diminish the risk of overtreatment, and thus save healthcare-related costs. Several interventions have been developed to destigmatize palliative care. However, they have mainly focused on the general public. Aim: The aim of this work is to develop a theoretical framework for an interventional campaign targeted at young adults to systematically destigmatize palliative care. Methods: The basis for the development of the campaign is a systematic review conducted by our working group that assessed the perception and knowledge of palliative care of young adults aged 18 to 24 years. To design a possible intervention, the Intervention Mapping approach was used. Results: The target group of young adults can be effectively reached in secondary schools, vocational schools, and universities. The target population should be able to discuss the content of palliative care and openly talk about death and dying. At the environmental level, palliative care should be more present in public spaces, and death and dying should be freed from taboos. Within an intervention with palliative care experts and patients serving as interventionists, these changes can be achieved by incorporating evidence-based methods of behavioral change. Conclusions: An early engagement with palliative care could contribute to the long-term reduction of stigmas and address the demographic shift effectively. A multimodal intervention approach comprising knowledge dissemination, exchange, and media presence provides an appropriate framework to counter the existing stigmatization of palliative care within the peer group of young adults. Full article
(This article belongs to the Special Issue Development and Impact of Palliative and End-of-Life Care Services)
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15 pages, 1693 KiB  
Article
Perceptions of Quality of Interprofessional Collaboration, Staff Well-Being and Nonbeneficial Treatment: A Comparison between Nurses and Physicians in Intensive and Palliative Care
by Daniel Schwarzkopf, Frank Bloos, Winfried Meißner, Hendrik Rüddel, Daniel O. Thomas-Rüddel and Ulrich Wedding
Healthcare 2024, 12(6), 602; https://doi.org/10.3390/healthcare12060602 - 7 Mar 2024
Cited by 1 | Viewed by 1686
Abstract
This study assessed differences in interprofessional collaboration, perception of nonbeneficial care, and staff well-being between critical care and palliative care teams. In six German hospitals, a staff survey was conducted between December 2013 and March 2015 among nurses and physicians in intensive and [...] Read more.
This study assessed differences in interprofessional collaboration, perception of nonbeneficial care, and staff well-being between critical care and palliative care teams. In six German hospitals, a staff survey was conducted between December 2013 and March 2015 among nurses and physicians in intensive and palliative care units. To allow comparability between unit types, a matching was performed for demographic characteristics of staff. N = 313 critical care and 79 palliative care staff participated, of which 72 each were successfully matched. Critical care nurses perceived the poorest overall quality of collaboration compared with critical care physicians and palliative care physicians and nurses. They also reported less inclusive leadership from attendings and head nurses, and the least collaboration on care decisions with physicians. They were most likely to perceive nonbeneficial care, and they reported the lowest levels of job satisfaction and the highest intention to leave the job. In partial correlations, aspects of high-quality collaboration were associated with less perceived nonbeneficial care and higher staff well-being for both critical care and palliative care staff. Our findings indicate that critical care teams could improve collaboration and enhance well-being, particularly among nurses, by adopting principles of collaborative work culture as established in palliative care. Full article
(This article belongs to the Special Issue Development and Impact of Palliative and End-of-Life Care Services)
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16 pages, 282 KiB  
Article
Enhancing the Adult and Paediatric Palliative Care System: Spanish Professionals’ and Family Caregivers’ Suggestions for Comprehensive Improvement
by Laura Llop-Medina, Paula García-Muñoz, Francisco Ródenas-Rigla and Jorge Garcés-Ferrer
Healthcare 2024, 12(1), 65; https://doi.org/10.3390/healthcare12010065 - 27 Dec 2023
Viewed by 1245
Abstract
This research critically explores deficiencies in the palliative care system, focusing on evaluation and treatment aspects for both adult and paediatric patients. Using a qualitative methodology, the study engages healthcare professionals and family caregivers to uncover perspectives on the existing state of palliative [...] Read more.
This research critically explores deficiencies in the palliative care system, focusing on evaluation and treatment aspects for both adult and paediatric patients. Using a qualitative methodology, the study engages healthcare professionals and family caregivers to uncover perspectives on the existing state of palliative care. Conducted through three focus groups and a semi-structured in-depth interview with participants recruited from Virgen de la Arrixaca University Clinical Hospital, this research illustrates critical issues, highlighting the insufficient healthcare workforce and resources to meet the comprehensive needs of patients and their families. Recommendations include holistic care addressing social, emotional, psychological, socio-familiar, and economic dimensions, supported by embedded support groups and the enforcement of relationships with palliative associations. This study also advocates for improved health institutional coordination, social worker support, and ongoing health professional satisfaction monitoring. In paediatric care, specific demands involve specialised units, medical team continuity, 24 h paediatrician care, and a more professional paediatric approach. Beyond problem identification, this study offers valuable insights for shaping health policies and tools, incorporating new indicators and introducing grief bereavement support in clinical reports, contributing to the advancement of patient evaluation in palliative care. Full article
(This article belongs to the Special Issue Development and Impact of Palliative and End-of-Life Care Services)
13 pages, 280 KiB  
Article
An Agentic Familiarity: The Context of HIV/AIDS and Sexual Orientation for Older Canadians during the COVID-19 Pandemic
by Brian de Vries, Gloria Gutman, Robert Beringer, Paneet Gill and Mojgan Karbakhsh
Healthcare 2023, 11(21), 2869; https://doi.org/10.3390/healthcare11212869 - 31 Oct 2023
Viewed by 1038
Abstract
This paper examines how experiences with a previous pandemic, particularly HIV/AIDS, may have informed approaches to COVID-19, with a focus on sexual orientation. Method: The sample was drawn from an online survey of Canadians 55+ conducted in 2020, comprising 1143 persons (mean age [...] Read more.
This paper examines how experiences with a previous pandemic, particularly HIV/AIDS, may have informed approaches to COVID-19, with a focus on sexual orientation. Method: The sample was drawn from an online survey of Canadians 55+ conducted in 2020, comprising 1143 persons (mean age = 67; 88 gay or bisexual (GB) men, 65 lesbian or bisexual (LB) women, 818 heterosexual women, and 172 heterosexual men). Respondents reported if they, or someone close to them, “had been affected by” one or more pandemics and whether COVID-19 led them to “think more about their prior epidemic/pandemic experiences” and/or feel they “couldn’t handle it again”. Correlated items reflecting feeling “they have been here before”; “prepared for what is happening”; and “like they needed to act or do something” formed a scale named “agentic familiarity”. Results: About half of respondents reported thinking about their previous pandemic experience; about 5% reporting feeling like “they couldn’t handle it again” with no gender or sexual orientation differences. Higher agentic familiarity scores were found for GB men and for those with experience with HIV/AIDS vs. other pandemics. Discussion: These outcomes speak to resilience and growth experienced by LGBT (and especially GB) persons through shared stigma and trauma—with implications for current pandemic experiences and future actions, like advance care planning. Full article
(This article belongs to the Special Issue Development and Impact of Palliative and End-of-Life Care Services)
11 pages, 250 KiB  
Article
Towards the Provision of Palliative Care Services in the Intensive Coronary Care Units: Nurses’ Knowledge, Training Needs, and Related-Barriers
by Baraa Abu-Aziz, Areefa S. M. Alkasseh, Jonathan Bayuo and Hammoda Abu-Odah
Healthcare 2023, 11(12), 1781; https://doi.org/10.3390/healthcare11121781 - 16 Jun 2023
Cited by 1 | Viewed by 1923
Abstract
Despite the notable benefits of palliative care (PC) for patients with chronic diseases, its delivery to people with cardiac problems, particularly in the Middle East region (EMR), remains a critical issue. There is a scarcity of research assessing nursing staff’s needs and knowledge [...] Read more.
Despite the notable benefits of palliative care (PC) for patients with chronic diseases, its delivery to people with cardiac problems, particularly in the Middle East region (EMR), remains a critical issue. There is a scarcity of research assessing nursing staff’s needs and knowledge in providing PC to cardiac patients in the EMR. This study aimed to assess the level of knowledge and needs of PC among nurses towards the provision of PC in intensive coronary care units (ICCUs) in the Gaza Strip, Palestine. It also identified the barriers to the provision of PC services in ICCUs in the Gaza Strip. A hospital-based descriptive quantitative cross-sectional design was adopted to collect data from 85 nurses working in ICCUs at four main hospitals in the Gaza Strip. Knowledge about PC was collected using a developed questionnaire based on the Palliative Care Quiz Nursing Scale (PCQN) and Palliative Care Knowledge Test (PCKT). PC training needs and barriers were assessed using the PC Needs Assessment instrument. Approximately two-thirds of nurses did not receive any PC educational or training programs, which contributed to their lack of PC knowledge. Most nurses would like to enroll in PC training programs, such as family support and communications skills courses. Nurses reported that there was a high demand for PC guidelines and discharge planning for patients with chronic illnesses. Insufficient healthcare professionals’ knowledge about PC and a staff shortage were the main barriers to integrating PC into the Gaza healthcare system. This study suggests incorporating PC into nursing curricula and in-service training, and it covers both basic and advanced PC principles. Intensive coronary care unit nurses need knowledge and training about PC, guidance, and support to provide appropriate care to patients with cardiovascular issues. Full article
(This article belongs to the Special Issue Development and Impact of Palliative and End-of-Life Care Services)

Review

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12 pages, 893 KiB  
Review
Fostering Pre-Professionals and Learning Experiences in End-of-Life Care Contexts: Music Therapy Internship Supervision
by Amy Clements-Cortés and Sara Klinck
Healthcare 2024, 12(4), 459; https://doi.org/10.3390/healthcare12040459 - 11 Feb 2024
Cited by 1 | Viewed by 1759
Abstract
Certified music therapists use music within therapeutic relationships to address human needs, health, and well-being with a variety of populations. Palliative care and music therapy are holistic and diverse fields, adapting to unique issues within end-of-life contexts. Palliative care music therapy has been [...] Read more.
Certified music therapists use music within therapeutic relationships to address human needs, health, and well-being with a variety of populations. Palliative care and music therapy are holistic and diverse fields, adapting to unique issues within end-of-life contexts. Palliative care music therapy has been formally practiced since the late 1970s and affords a variety of benefits, including pain and anxiety reduction, enhancement of quality of life, emotional expression, and relationship completion. The training of music therapists varies around the globe, but clinical supervisors play a key role in skill acquisition. Clinical supervisors support pre-professionals as they realize the application of their training, foundational competencies, and authentic therapeutic approaches in end-of-life care, while navigating the challenges and rewards of this work. This article is a narrative review which offers background information on palliative care music therapy, and reports the authors’ viewpoints and reflections on supervision strategies and models employed with music therapy interns in palliative care settings based on their experiences. Approaches are shared on supporting pre-professionals as they begin working in palliative care contexts, as well as implications for supervision practices. Full article
(This article belongs to the Special Issue Development and Impact of Palliative and End-of-Life Care Services)
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