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

Deadline for manuscript submissions: closed (31 December 2021) | Viewed by 40388

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Special Issue Editors

Dr. Gianluca Catania

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Guest Editor

1. Department of Health Sciences, University of Genoa, Via Pastore, 16132 Genoa, Italy
2. Center for Health Outcomes and Policy Research, School of Nursing, University of Pennsylvania, Philadelphia, PA 19104, USA
Interests: palliative and hospice care; quality of life; outcome measurement; complex intervention; quality and safety

Prof. Dr. George Demiris

E-Mail Website
Assistant Guest Editor

School of Nursing, University of Pennsylvania, Philadelphia, PA 19104, USA
Interests: palliative and hospice care; information technology; family caregiving

Special Issue Information

Dear Colleagues,

Globally, as many as 100 million people are in need of, and may benefit from, palliative and hospice care across their disease trajectory and at the end of life. The landscape of healthcare keeps changing, chronic illnesses and disabilities are significantly increasing, and healthcare workforce shortage, costs, as well as quality and safety issues are driving forces that impact patient outcomes, their families and nursing care. Nurses’ responsibilities and duties to provide high-quality palliative care are internationally grounded in nurses’ codes of ethics. This contributes to their recognized role in delivering holistic patient- and family-centered care. Besides this, technological innovations are now rapidly spreading and may promote advancements in nursing care and address palliative and hospice care research priorities identified by nursing associations and research agencies. In recent years, nurses have made significant contributions to palliative and hospice care for patients and their families. They are in pivotal positions that enable them to lead change towards implementing nursing interventions aimed at improving the assessment, diagnosis, and treatment of palliative care needs across diagnoses, disease trajectories, contexts of care, and models of nursing care.

However, relevant palliative and hospice nursing research approaches and interventions need to be shared to stimulate a better high-quality, evidence-based palliative care practice.

This Special Issue addresses the current state of knowledge on palliative and hospice nursing care. Papers dealing with nursing strategies with a view toward nursing aspects of quality and safety, assessment, nursing diagnosis, and interventions are welcome.

Original research papers, reviews, case reports, methodological papers, position papers, brief reports, and commentaries are accepted.

Overcoming barriers in underserved, hard-to-reach populations;
Implementing culturally congruent, patient- and caregiver-centered palliative care strategies;
Interventions to address patient and caregiver goals;
Symptom burden impact on individual and family goals;
Models for community-based palliative care;
Strategies for assessing caregiver preparedness and self-care;
Symptom management at end of life;
Electronic data collection methods used by health care providers to monitor, evaluate, and improve palliative and end-of-life care;
Best ways to measure patient-reported outcomes;
Effective ways to motivate and engage individuals, caregivers, and families in conversations about end-of-life goals and values that inform decision making;
Operationalizing and individualizing palliative care and which models best meet the supportive and end-of-life care needs of patients and families;
Factors in palliative care that impact the bereavement process.

Dr. Gianluca Catania
Prof. George Demiris
Guest Editors

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Keywords

palliative care
hospice care
end-of-life care
decision making
symptom management
patient- and family-centered care
patient-reported outcomes
end-of-life conversations
patients’ needs
nursing care
quality and safety

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Published Papers (11 papers)

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Research

11 pages, 461 KiB

Open AccessArticle

Palliative Professionals’ Views on the Importance of Religion, Belief, and Spiritual Identities toward the End of Life

by Panagiotis Pentaris and Khyati Tripathi

Int. J. Environ. Res. Public Health 2022, 19(10), 6031; https://doi.org/10.3390/ijerph19106031 - 16 May 2022

Cited by 9 | Viewed by 4008

Abstract

Abundant literature has argued the significance of religion, belief, and spirituality at the end of life. This study aims to add to this literature by exploring palliative professionals’ views in this area. By means of an in-depth interviewing method, this paper reports data from 15 hospice and palliative care professionals. Participants were recruited from five hospice and palliative care organisations, and the data were managed and analysed with thematic analysis and NVivo (version 11). This study found three main reasons that make religion, belief, and spirituality important for patients and their loved ones when facing imminent death: the sense of comfort and security, meaning making, and closure. These reasons are not independent from one another, but complementary. This paper offers some implications for practice and concludes with a call for further research. Full article

(This article belongs to the Special Issue Nursing and Palliative Care)

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10 pages, 512 KiB

Open AccessArticle

Communication about Prognosis and End-of-Life in Heart Failure Care and Experiences Using a Heart Failure Question Prompt List

by Lisa Hjelmfors, Jan Mårtensson, Anna Strömberg, Anna Sandgren, Maria Friedrichsen and Tiny Jaarsma

Int. J. Environ. Res. Public Health 2022, 19(8), 4841; https://doi.org/10.3390/ijerph19084841 - 15 Apr 2022

Cited by 7 | Viewed by 2752

Abstract

Background: To further advance the use of a heart-failure-specific question prompt list (HF-QPL) for communication about prognosis and end-of-life care, knowledge about such communication and the perceptions and experiences of professionals is needed. Objectives: 1. to describe health care professionals’ perceptions of communication about prognosis and end-of-life in heart failure (HF) care, and 2. to describe their experiences of using a HF-QPL. Design: A qualitative design that analyzed material from written assignments of nurses and physicians who were using a HF-QPL while participating in a communication course. Methods: Fifteen health care professionals from different regions in the south of Sweden were included. The data were collected from course assignments on 1. their reflection on the suitable timepoint for talking about prognosis for the first time, 2. their reflection on the HF-QPL, and 3. their experiences of using the HF-QPL in clinical practice. Data were analyzed using thematic analysis. Results: Five overarching themes were identified. The first theme was awareness of professional role responsibilities that described the recognition of different responsibilities in these conversations within the HF team. The second theme described the importance of being optimally prepared, and the third that confidence and skills are required to use the HF-QPL. The fourth theme described the HF-QPL as a bridge in the communication between professionals, patients, and family members. The fifth theme identified challenges using the HF-QPL in HF care. Conclusions: Using a HF-QPL in HF care has the potential to start conversation and facilitate discussion about the HF trajectory. Full article

(This article belongs to the Special Issue Nursing and Palliative Care)

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16 pages, 1176 KiB

Open AccessArticle

Planning for Implementation Success of an Electronic Cross-Facility Health Record for Pediatric Palliative Care Using the Consolidated Framework for Implementation Research (CFIR)

by Theresa Sophie Busse, Sven Kernebeck, Larissa Alice Dreier, Dorothee Meyer, Daniel Zenz, Peter Haas, Boris Zernikow and Jan Peter Ehlers

Int. J. Environ. Res. Public Health 2022, 19(1), 453; https://doi.org/10.3390/ijerph19010453 - 1 Jan 2022

Cited by 2 | Viewed by 2814

Abstract

Pediatric palliative care (PPC) patients require years of care across professions and sectors. Sharing treatment-related information and communicating among different PPC professionals is critical to ensure good quality of care. In Germany, this communication is mostly paper-based and prone to errors. Therefore, an electronic cross-facility health record (ECHR) was participatorily designed with users, wherein information can be shared and PPC professionals can communicate with each other. As this form of electronic health record differs from existing models in Germany, there is a need for successful implementation to ensure a positive impact. Therefore, the facilitators and barriers to the implementation of ECHR in PPC were examined. Using the consolidated framework for implementation research (CFIR), transcripts of 32 interviews, 3 focus groups, and 20 think-aloud studies with PPC professionals were analyzed. CFIR indicated that the ECHR-design was viewed positively by users and can be a facilitator for implementation. Barriers exist, mainly due to the fact that the implementation is not planned, the use of the ECHR involves effort, costs are not covered, and all users must be motivated to use the ECHR for functionality. CFIR helps uncover the crux of the issues that need to be considered when planning ECHR implementation to improve care in PPC. Full article

(This article belongs to the Special Issue Nursing and Palliative Care)

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11 pages, 605 KiB

Open AccessArticle

Community Nurses’ Preparations for and Challenges in Providing Palliative Home Care: A Qualitative Study

by Chien-Yi Wu, Yu-Hsuan Wu, Yi-Hui Chang, Min-Shiow Tsay, Hung-Cheng Chen and Hui-Ya Hsieh

Int. J. Environ. Res. Public Health 2021, 18(22), 11838; https://doi.org/10.3390/ijerph182211838 - 11 Nov 2021

Cited by 9 | Viewed by 4475

Abstract

Hospitals have played a leading role in providing palliative care in Taiwan as its care model has developed over the past few decades. However, earlier local studies in Taiwan showed that terminal patients prefer to die at home, highlighting the need to promote community-based palliative care instead of hospital-based care. Along with this shift, how community nurses provide palliative home care merits further exploration. This qualitative descriptive study aims to understand (1) how community nurses implement community-based palliative care, (2) what preparations are needed, and (3) what challenges they may face. Purposive sampling was used for recruiting nurses. We conducted one-on-one, in-depth, semi-structured interviews. Interview recordings were transcribed verbatim and analyzed using thematic analysis. Eight community nurses with a range of experience in palliative home care were interviewed. Four major themes emerged: (1) Opportunities, (2) Qualifications, (3) Support, and (4) Commitments. Psychological preparedness, well-developed professional capabilities, external assistance, and peer support motivate community nurses to offer community-based palliative care. As the requests for palliative home care services increase, community nurses play a critical role in palliative home care. Although the sample size is small and the findings retrieved from a small number of experiences might not be generalized to every region, the study results could inform future experience-sharing and workshop sessions to train more nurses for community-based care, expanding service coverage, and providing optimal palliative care. Full article

(This article belongs to the Special Issue Nursing and Palliative Care)

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13 pages, 392 KiB

Open AccessArticle

Spanish Nurses’ Knowledge about Palliative Care. A National Online Survey

by Antonio Martínez-Sabater, Pilar Chover-Sierra and Elena Chover-Sierra

Int. J. Environ. Res. Public Health 2021, 18(21), 11227; https://doi.org/10.3390/ijerph182111227 - 26 Oct 2021

Cited by 14 | Viewed by 4021

Abstract

(1) Background: Nurses can find people with advanced diseases or in their last days of life during their professional careers and in many different care settings. For this reason, they need to have at least a basic level of palliative care education since they are the professional cohort treating these patients in a very close way. This research aims to determine the level of knowledge in palliative care of Spanish nurses and establish any possible difference based on their experience and training in palliative care. (2) Methods: A cross-sectional design using survey methods (distributed an online questionnaire) aimed at Spanish registered nurses. A validated questionnaire (PCQN-SV) was used to determine the level of knowledge in palliative care; information on some variables to characterize the population was also collected (experience and education in palliative care, years of professional experience, academic level, and others). Uni and bivariate descriptive analyses were performed. A binary logistic regression model was also developed to identify those variables that influenced obtaining results higher than the population’s average. (3) Results: Spanish nurses have a medium–low level of knowledge in palliative care, higher in those who have previous experience or education in this area. Statistically significant differences were also found according to the area in which their caring activity was developed. (4) Conclusions: It is necessary to implement strategies for the basic training of nursing professionals in palliative care to offer quality care to people in advanced stages of illnesses or at the end of their lives. Full article

(This article belongs to the Special Issue Nursing and Palliative Care)

15 pages, 1108 KiB

Open AccessArticle

The Relationship between Practitioners and Caregivers during a Treatment of Palliative Care: A Grounded Theory of a Challenging Collaborative Process

by Paolo Rossi, Matteo Crippa and Gianlorenzo Scaccabarozzi

Int. J. Environ. Res. Public Health 2021, 18(15), 8081; https://doi.org/10.3390/ijerph18158081 - 30 Jul 2021

Cited by 3 | Viewed by 3332

Abstract

The possibility of coming to a “good death” is a challenging issue that crosses ethical and religious beliefs, cultural assumptions, as well as medical expertise. The provision of palliative care for relieving patients’ pain is a practice that reshapes the path to the event of death and gives form to a particular context of awareness, recalling the notion proposed by Glaser and Strauss. This decision redesigns the relationships between patients, practitioners and caregivers and introduces a new pattern of collaboration between them. Our study focuses on the implications of the collaboration between practitioners and caregivers, starting from the assumption that the latter may provide support to their loved ones and to the practitioners, but need to be supported too. We provide a qualitative analysis of this collaboration based on an empirical research that took place in four different settings of provision of palliative care, reporting the contrast between the affective engagement of caregivers and the professional approach of practitioners. We claim that this ambivalent collaboration, while embedded in contingent and incommensurable experiences, brings to the fore the broader understanding of the path to a “good death,” outlining its societal representation as a collective challenge. Full article

(This article belongs to the Special Issue Nursing and Palliative Care)

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11 pages, 325 KiB

Open AccessArticle

We Want More Than Life-Sustaining Treatment during End-of-Life Care: Focus-Group Interviews

by Mirinae Kim and Minju Kim

Int. J. Environ. Res. Public Health 2021, 18(9), 4415; https://doi.org/10.3390/ijerph18094415 - 21 Apr 2021

Cited by 7 | Viewed by 3115

Abstract

We qualitatively investigated end-of-life care needs. Data were collected via focus-group interviews with three groups: young adults, middle-aged adults, and older adults. The key question was, “What kind of care would you like to receive at the end of life?” Interview data were transcribed and analyzed using content analysis. End-of-life care needs were classified into six categories: life-sustaining treatment needs, physical care needs, emotional care needs, environmental needs, needs for respect, and needs for preparation for death. Because the Korean culture is family-oriented and talking about death is taboo, Korean patients at the end of their life do not make decisions about life-sustaining treatment or actively prepare for death. Therefore, to provide proper end-of-life care, conversations and shared decision-making among patients and their families are crucial. Further, we must respect patients’ dignity and help them achieve a good death by understanding patients’ basic care preferences. Future research should continue examining end-of-life care needs that reflect the social and cultural context of Korea to inform instrument development. Full article

(This article belongs to the Special Issue Nursing and Palliative Care)

11 pages, 455 KiB

Open AccessFeature PaperArticle

Impact of Palliative Care in Evaluating and Relieving Symptoms in Patients with Advanced Cancer. Results from the DEMETRA Study

by Oscar Corli, Giacomo Pellegrini, Cristina Bosetti, Luca Riva, Matteo Crippa, Emanuele Amodio and Gianlorenzo Scaccabarozzi

Int. J. Environ. Res. Public Health 2020, 17(22), 8429; https://doi.org/10.3390/ijerph17228429 - 14 Nov 2020

Cited by 12 | Viewed by 2739

Abstract

Background: Cancer patients experience multiple symptoms throughout the course of the disease. We aimed to provide a comprehensive analysis of the symptom burden in patients with advanced cancer at admission to specialist palliative care (PC) services and seven days later to estimate the immediate impact of PC intervention. Patient and methods: The analysis was based on an observational, prospective, multicenter study (named DEMETRA) conducted in Italy on new patients accessing network specialist PC centers during the period May 2017–November 2017. The prevalence and intensity of symptoms were assessed at baseline and after seven days using three tools including the Edmonton Symptom Assessment System (ESAS). Results: Five PC centers recruited 865 cancer patients. Thirty-three different symptoms were observed at the baseline, the most frequent being asthenia (84.9%) and poor well-being (71%). The intensity of the most frequent symptoms according to ESAS ranged from 5.5 for asthenia to 3.9 for nausea. The presence and intensity of physical symptoms increased with increasing levels of anxiety and depression. After seven days, prevalence of nausea and breathlessness as well as intensity of almost all symptoms significantly decreased. Conclusions: The study confirmed the considerable symptom burden of patients with advanced cancer. PC intervention has significantly reduced the severity of symptoms, despite the patients’ advanced disease and short survival. Full article

(This article belongs to the Special Issue Nursing and Palliative Care)

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12 pages, 298 KiB

Open AccessArticle

The Effect of Practice toward Do-Not-Resuscitate among Taiwanese Nursing Staff Using Path Modeling

by Li-Fen Wu, Li-Fang Chang, Yu-Chun Hung, Chin Lin, Shiow-Jyu Tzou, Lin-Ju Chou and Hsueh-Hsing Pan

Int. J. Environ. Res. Public Health 2020, 17(17), 6350; https://doi.org/10.3390/ijerph17176350 - 31 Aug 2020

Cited by 4 | Viewed by 2922

Abstract

This study aimed to elucidate the predictors and the effects of path modeling on the knowledge, attitude, and practice toward do-not-resuscitate (DNR) among the Taiwanese nursing staff. This study was a cross-sectional, descriptive design using stratified cluster sampling. We collected data on demographics, knowledge, attitude, and practice as measured by the DNR inventory (KAP-DNR), Mindful Attention Awareness Scale, General Self-Efficacy Scale, and Dispositional Resilience Scale. Participants were 194 nursing staff from a medical center in northern Taiwan in 2019. The results showed that participation in DNR signature and education related to palliative care were significant positive predictors of knowledge toward DNR. The DNR predictors toward attitude included DNR knowledge, mindfulness, self-efficacy, dispositional resilience, and religious belief of nurses. Generally, the critical predictors of DNR practice were DNR attitude, dispositional resilience, and male nurses. In path modeling, we identified that self-efficacy, dispositional resilience, master’s degree, and religious belief directly influenced practice constituting DNR. Based on the findings of this study, we propose that nurses should improve their self-efficacy and dispositional resilience through training programs. Encouraging staff to undertake further education and have religious beliefs can enhance the practice of DNR and provide better end-of-life care. Full article

(This article belongs to the Special Issue Nursing and Palliative Care)

11 pages, 306 KiB

Open AccessArticle

Exploring Advance Directive Perspectives and Associations with Preferences for End-of-Life Life-Sustaining Treatments among Patients with Implantable Cardioverter-Defibrillators

by JinShil Kim, Hyung Wook Park, Minjeong An and Jae Lan Shim

Int. J. Environ. Res. Public Health 2020, 17(12), 4257; https://doi.org/10.3390/ijerph17124257 - 15 Jun 2020

Cited by 2 | Viewed by 2402

Abstract

Deactivation of an implantable cardioverter-defibrillator (ICD) is a critical issue in the advance care planning (ACP) of ICD recipients; however, related perspectives have rarely been explored. Thus, this study aimed to provide an initial investigation of ICD recipients’ perceived susceptibility and barriers/benefits regarding ACP and/or advance directives (ADs), and associations of these modifiable factors with preferences for end-of-life life-sustaining treatments (LSTs) (cardiopulmonary resuscitation (CPR), ventilator support, hemodialysis, and hospice care). Using a descriptive correlational design, 48 ICD recipients (age, 50.1 years; male, 85.4%) completed survey questionnaires. “No burden on family” was the most highly valued (59.1%), followed by “comfortable death” (20.4%), and both (11.4%). LST preference was 43.8% for ventilator support, 45.8% for both hemodialysis and hospice care, and 54.2% for CPR. Perceived susceptibility to having unexpected end-of-life experiences increased the likelihood of preference for aggressive LSTs, with preferences increasing by 15% for CPR, 17% for ventilator support, and 23% for hemodialysis. A non-modifiable factor, older age, was the only predictor of increased preference for hospice care (odds ratio = 1.09, p = 0.016). Among the modifiable factors, a higher perceived susceptibility increased the likelihood of aggressive LST preferences. The findings imply that to facilitate informed decisions for LSTs, early ACP discussion could be helpful and enhance these modifiable factors. Full article

(This article belongs to the Special Issue Nursing and Palliative Care)

13 pages, 363 KiB

Open AccessArticle

Nursing Students’ Knowledge and Attitudes Regarding Medical Marijuana: A Descriptive Cross-Sectional Study

by Laura Pereira, María Jesús Núñez-Iglesias, Eva María Domínguez-Martís, David López-Ares, Mercedes González-Peteiro and Silvia Novío

Int. J. Environ. Res. Public Health 2020, 17(7), 2492; https://doi.org/10.3390/ijerph17072492 - 6 Apr 2020

Cited by 18 | Viewed by 5588

Abstract

Marijuana use for medical purposes dates back to ancient times. Despite its high therapeutic potential, its adverse effects have raised important legal restrictions. However, this situation in Spain may soon undergo significant changes, without anyone so far having studied the knowledge and/or the level of acceptance of medical marijuana by future healthcare professionals. The aim of the present study was to determine nursing students’ knowledge of and attitudes towards medical marijuana. A cross-sectional design was used. A total of 578 nursing students from the University of Santiago de Compostela (Spain), ≥18 years old and of both sexes, were invited to complete the Spanish version of the questionnaire “Medical Marijuana” between January and May 2019. A total of 364 students decided to participate in the study. More than 75% of the students agreed with the legalization of medical marijuana, although their knowledge and confidence levels regarding efficacy, safety and drug interactions of medical marijuana were low. Nursing students showed a clear lack of knowledge about medical marijuana and thus, in light of possible regulatory changes, it would be necessary to strengthen the training of nurses with respect to medical marijuana in order to make responsible use of it. Full article

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