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Recent Advances in Palliative and End-of-Life Care

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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 August 2022) | Viewed by 31798

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Special Issue Editor

Prof. Dr. Eliza Lai-yi Wong

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Guest Editor

The Jockey Club School of Public Health and Primary Care, The Chinese University of Hong Kong, Hong Kong, China
Interests: patient-reported health outcomes (patient experience, health-related quality of life); healthcare service delivery and quality; cervical cancer screening

Special Issue Information

Dear Colleagues,

With advanced medical knowledge and technology, life expectancy has been increasing rapidly in the past decades. However, this dramatic increase in life expectancy did not come with a proportionate increase in the quality of life, particularly during the end stage of life. This leads to increasing challenges in the care journey, including patient engagement, caregiver support, hospital readmission, advocacy of advance directive, palliative and hospice care development, and policy in the fragmented medical and social care. This puts increasing pressure on the health system and social system in most countries. I suggest that the research on patient-centered care urgently needs to be refocused to include the end of life in life-limiting conditions and life-threatening diseases, thereby increasing both patients’ quality of life, caregivers’ well-being, as well as the burden on the health system. Measuring the quality of care in the end of life is done through a ranking system with international measures to facilitate comparison between countries and over time. However, there are hot debates about the value of these rankings conceptually, culturally, politically and morally which may not be applicable in different contextual settings and health systems. Thus, the value should support the analysis of factors behind the performance in both quantitative and qualitative ways so as to provide the input for action towards the improvement of end of life care.

This Special Issue of International Journal of Environmental Research and Public Health (IJERPH) focuses on the current state of knowledge to improve the quality of care in end of life and strengthen the development of palliative and hospice care. New research papers, reviews, case reports, commentaries, and expanded conference papers are welcome to this Issue. Papers dealing with new approaches to palliative and end-of-life care are also welcome.

Prof. Dr. Eliza Lai-yi Wong
Guest Editor

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Keywords

palliative care
end of life
hospice
life-limiting condition
life-threatening disease
patient-centered care
patient experience and satisfaction
health-related quality of life
caregiver’s experience
stakeholder views
care journey
advance directive
healthcare service delivery
health system and policy

Published Papers (12 papers)

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Research

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12 pages, 320 KiB

Open AccessArticle

Exploring Risk Factors of Unexpected Death, Using Palliative Care Outcomes Collaboration (PCOC) Measures, among Terminal Patients Receiving Palliative Care in Taiwan

by Wen-Hsuan Hsiao, Chun-Li Wang, Lung-Chun Lee, Szu-Pei Chien, Chin-Chu Hsu and Wei-Min Chu

Int. J. Environ. Res. Public Health 2022, 19(20), 13294; https://doi.org/10.3390/ijerph192013294 - 15 Oct 2022

Cited by 1 | Viewed by 1804

Abstract

Palliative care has the ability to relieve both physical discomfort and psychological distress in terminally ill patients. However, unexpected death may still occur in palliative care settings. This study aimed to utilize Palliative Care Outcomes Collaboration (PCOC) data to better determine any associated factors which may surround unexpected death in palliative care settings. Data were extracted from the PCOC database by the palliative care team within Taichung Veterans General Hospital (TCVGH). Data of deceased patients were extracted during the period from January 2021 to December 2021 from multiple palliative care settings. The deaths of patients whose last recorded palliative phase was 1–3 were defined as unexpected. A total of 280 deceased patients were included, with mean age at death being 67.73, 61% being male, and 83.2% cancer patients. We discovered that shortness of breath, as assessed by the Symptom Assessment Scale (SAS), decreased risk of unexpected death (OR: 0.91, 95% CI: 0.84–0.98), while impending death discharge (OR: 3.93, 95% CI: 1.20–12.94) and a higher Australia-modified Karnofsky performance status (AKPS) score (OR: 1.15, 95% CI: 1.10–1.21) were associated with unexpected death. Thus, medical staff must inform the family of patients early on regarding any risk factors surrounding unexpected death to help everyone involved be prepared in advance. Full article

(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)

17 pages, 1192 KiB

Open AccessArticle

Feasibility of Patient Reported Outcome Measures in Psychosocial Palliative Care: Observational Cohort Study of Hospice Day Care and Social Support Groups

by Natasha Bradley, Christopher Dowrick and Mari Lloyd-Williams

Int. J. Environ. Res. Public Health 2022, 19(20), 13258; https://doi.org/10.3390/ijerph192013258 - 14 Oct 2022

Cited by 1 | Viewed by 2312

Abstract

Palliative care patients can be at risk of social isolation or loneliness. Interventions that can provide effective social support, and particularly emotional support, could facilitate healthy coping that bolsters quality of life and reduces depression in palliative care patients. This is an observational cohort study which recruited thirty patients (n = 30) from the day services of four independent hospices in England. Participants completed patient reported outcome measures in perceived social support, loneliness, and depression, at up to three time points. Age range was 56–91 years, males and females were equally represented, and the sample was 93% white British. In participants that provided two or more timepoints, perceived social support increased, and loneliness and depression decreased. Largest changes with the least variation between participants was in emotional support (p = 0.165) and loneliness (p = 0.104). These results suggest that the psychosocial patient reported outcome measures used (MOS-SS, UCLA, BEDS) could be sensitive to change aligned with the goals of this intervention in palliative care. Participants in this study were observed to derive psychosocial benefit from attending the hospice day service. Full article

(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)

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16 pages, 809 KiB

Open AccessArticle

Meanings and Experiences of End-of-Life Patients and Their Family Caregivers in Hospital-to-Home Transitions: A Constructivist Grounded Theory Study

by Eleandro Prado, Sonia Marcon, Luciana Kalinke, Marcelle da Silva, Mayckel Barreto, Angelica Takemoto, Marcela Birolim and Carlos Laranjeira

Int. J. Environ. Res. Public Health 2022, 19(20), 12987; https://doi.org/10.3390/ijerph192012987 - 11 Oct 2022

Cited by 4 | Viewed by 4332

Abstract

This study explored the meanings and experiences of patients with terminal chronic diseases and their caregivers, who face the imminence of death in the home environment after hospital discharge. The qualitative study used constructivist grounded theory. The participants were individuals with a terminal chronic illness, discharged to home, and their family caregivers. Data were gathered from in-depth interviews and field notes, and a comparative analysis was conducted to identify categories and codes, according to Charmaz’s theory. The sample consisted of 21 participants. Three inter-related data categories emerged: “Floating between acceptance and resistance: Perceiving the proximity of death”, “Analysing the end from other perspectives: it is in the encounter with death that life is understood” and “Accepting the path: between the love of letting go and the love of wanting to stay”. The categories translate the reconstruction of those facing end-of-life occurring in the home environment. It is amid the imminence of death that life gains intensity and talking about the finitude of life configures an opportunity to see life from other perspectives. Giving voice to individuals facing the mishaps of a terminal illness fosters the path to a comfortable death. For health professionals, it is an opportunity to provide structured and humanized care with an ethical attitude, in defence of human dignity. Full article

(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)

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10 pages, 324 KiB

Open AccessFeature PaperArticle

Anticancer Treatment Goals and Prognostic Misperceptions among Advanced Cancer Outpatients

by Carlos Eduardo Paiva, Ana Clara Teixeira, Bruna Minto Lourenço, Daniel D’Almeida Preto, Talita Caroline de Oliveira Valentino, Mirella Mingardi and Bianca Sakamoto Ribeiro Paiva

Int. J. Environ. Res. Public Health 2022, 19(10), 6272; https://doi.org/10.3390/ijerph19106272 - 21 May 2022

Cited by 3 | Viewed by 1678

Abstract

(1) Background: In the context of cancer incurability, the communication processes involving clinicians and patients with cancer are frequently complex. (2) Methods: A cross-sectional study that investigated outpatients with advanced cancers and their oncologists. Both were interviewed immediately after a medical appointment in which there was disease progression and/or clinical deterioration, and were asked about the patient’s chance of curability and the goals of the prescribed cancer treatment. The patients were asked whether they would like to receive information about prognosis and how they would like to receive it. The analyses of agreement on perceptions were performed using the Kappa’s test. (3) Results: the sample consisted of 90 patients and 28 oncologists. Seventy-eight (87.6%) patients answered that they wanted their oncologist to inform them about their prognosis; only 35.2% (n = 31) of them said they received such information at their present appointment. Regarding how they would prefer prognostic disclosure, 61.8% (n = 55) mentioned that the oncologist should consider ways to keep the patient’s hope up; 73% (n = 65) of the patients reported odds >50% of cure. The agreement between oncologists’ and their patients’ perceptions regarding the treatment goals and curability was slight (k = 0.024 and k = 0.017, respectively). (4) Conclusions: The perceptions of patients and their oncologists regarding the goals of treatment and their chances of cure were in disagreement. New approaches are needed to improve the communication process between oncologists and patients with advanced cancer. Full article

(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)

13 pages, 342 KiB

Open AccessArticle

Experiences of Older Adults with Frailty Not Completing an Advance Directive: A Qualitative Study of ACP Conversations

by Zoe Wan, Helen Y. L. Chan, Patrick K. C. Chiu, Raymond S. K. Lo, Hui-Lin Cheng and Doris Y. P. Leung

Int. J. Environ. Res. Public Health 2022, 19(9), 5358; https://doi.org/10.3390/ijerph19095358 - 28 Apr 2022

Cited by 3 | Viewed by 2348

Abstract

Advance care planning (ACP) facilitates individuals to proactively make decisions on their end-of-life care when they are mentally competent. It is highly relevant to older adults with frailty because they are more vulnerable to cognitive impairment, disabilities, and death. Despite devoting effort to promoting ACP among them, ACP and advance directive completion rates remain low. This study aims to explore the experiences among frail older adults who did not complete an advance directive after an ACP conversation. We conducted a thematic analysis of audiotaped nurse-facilitated ACP conversations with frail older adults and their family members. We purposively selected ACP conversations from 22 frail older adults in the intervention group from a randomized controlled trial in Hong Kong who had ACP conversation with a nurse, but did not complete an advance directive upon completing the intervention. Three themes were identified: “Refraining from discussing end-of-life care”, “Remaining in the here and now”, and “Relinquishing responsibility over end-of-life care decision-making”. Participation in ACP conversations among frail older adults and their family members might improve if current care plans are integrated so as to increase patients’ motivation and support are provided to family members in their role as surrogate decision-makers. Full article

(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)

11 pages, 317 KiB

Open AccessArticle

Translation, Cultural Adaptation, and Content Validation of the Palliative Care Self-Efficacy Scale for Use in the Swedish Context

by Sofia Andersson, Lisa Granat, Margareta Brännström and Anna Sandgren

Int. J. Environ. Res. Public Health 2022, 19(3), 1143; https://doi.org/10.3390/ijerph19031143 - 20 Jan 2022

Cited by 5 | Viewed by 2793

Abstract

The Palliative Care Self-Efficacy Scale (PCSE) is a valid instrument in English for assessing healthcare professionals’ self-efficacy in providing palliative care; it has not been translated into Swedish. The aim of this study was to describe the translation, cultural adaptation, and content-validation process of the PCSE scale. In this study, forward and backward translations, pretesting including an expert panel (n = 7), and cognitive interviewing with possible healthcare professionals (physicians, nurses, and assistant nurses) (n = 10) were performed. Experts in palliative care rated items on a Likert scale based on their understandability, clarity, sensitivity, and relevance. The item-level content validity index (I-CVI) and modified kappa statistics were calculated. Healthcare professionals were interviewed using the think-aloud method. The translation and validation process resulted in the final version of the PCSE scale. The average I-CVI for sensitivity was evaluated and approved. Most of the items were approved for clarity, some items lacked understandability, but a majority of the items were considered relevant. The healthcare professionals agreed that the items in the questionnaire evoked emotions, but were relevant for healthcare professionals. Thus, the Palliative Care Self-Efficacy scale is relevant for assessing healthcare professionals’ self-efficacy in palliative care in a Swedish care context. Further research using psychometric tests is required. Full article

(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)

9 pages, 553 KiB

Open AccessArticle

Key Components for the Delivery of Palliative and End-of-Life Care in Care Homes in Hong Kong: A Modified Delphi Study

by Helen Yue-Lai Chan, Cecilia Nim-Chee Chan, Chui-Wah Man, Alice Dik-Wah Chiu, Faith Chun-Fong Liu and Edward Man-Fuk Leung

Int. J. Environ. Res. Public Health 2022, 19(2), 667; https://doi.org/10.3390/ijerph19020667 - 7 Jan 2022

Cited by 4 | Viewed by 2209

Abstract

Integrating the palliative care approach into care home service to address the complex care needs of older adults with frailty or advanced diseases has been increasingly recognized. However, such a service is underdeveloped in Hong Kong owing to socio-cultural and legal concerns. We adopted a modified Delphi study design to identify the key components for the delivery of palliative and end-of-life care in care home settings for the local context. It was an iterative staged method to assimilate views of experts in aged care, palliative care, and care home management. A multidisciplinary expert panel of 18 members consented to participate in the study. They rated their level of agreement with 61 candidate statements identified through a scoping review in two rounds of anonymous surveys. The steering group revised the statements in light of the survey findings. Eventually, the finalized list included 28 key statements concerning structure and process of care in seven domains, namely policy and infrastructure, education, assessment, symptom management, communication, care for dying patients, and family support. The findings of this study underscored concerns regarding the feasibility of statements devised at different levels of palliative care development. This list would be instrumental for regions where the development of palliative and end-of-life care services in care home setting is at an initial stage. Full article

(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)

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11 pages, 330 KiB

Open AccessArticle

What Does Economic Evaluation Mean in the Context of Children at the End of Their Life?

by Sebastian Hinde, Helen Weatherly, Gabriella Walker and Lorna K. Fraser

Int. J. Environ. Res. Public Health 2021, 18(21), 11562; https://doi.org/10.3390/ijerph182111562 - 3 Nov 2021

Cited by 1 | Viewed by 2352

Abstract

The ‘conventional framework’ of economic evaluation, the comparative public sector healthcare costs and quality adjusted life year (QALY) of two or more interventions, has become synonymous with commissioning decisions in many countries. However, while useful as a framework in guiding value-based decisions, it has limited relevance in areas such as end of life care in children and young people, where the costs fall across multiple stakeholders and QALY gains are not the primary outcome. This paper makes the case that the restricted relevance of the ‘conventional framework’ has contributed to the inconsistent and varied provision of care in this setting, and to the knock-on detrimental impact on children nearing the end of their lives as well as their families. We explore the challenges faced by those seeking to conduct economic evaluations in this setting alongside some potential solutions. We conclude that there is no magic bullet approach that will amalgamate the ‘conventional framework’ with the requirements of a meaningful economic evaluation in this setting. However, this does not imply a lack of need for the summation of the costs and outcomes of care able to inform decision makers, and that methods such as impact inventory analysis may facilitate increased flexibility in economic evaluations. Full article

(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)

13 pages, 881 KiB

Open AccessArticle

Exploring the Impact of Different Types of Do-Not-Resuscitate Consent on End-of-Life Treatments among Patients with Advanced Kidney Disease: An Observational Study

by Chiu-Hsien Yang, Chien-Yi Wu, Joseph T. S. Low, Yun-Shiuan Chuang, Yu-Wen Huang, Shang-Jyh Hwang and Ping-Jen Chen

Int. J. Environ. Res. Public Health 2021, 18(15), 8194; https://doi.org/10.3390/ijerph18158194 - 2 Aug 2021

Cited by 1 | Viewed by 2103

Abstract

Background: Patients with advanced kidney disease have a symptomatic and psychological burden which warrant renal supportive care or palliative care. However, the impact of do-not-resuscitate consent type (signed by patients or surrogates) on end-of-life treatments in these patients remains unclear. Objective: We aim to identify influential factors correlated with different do-not-resuscitate consent types in patients with advanced kidney disease and the impact of do-not-resuscitate consent types on various life-prolonging treatments. Methods: This was a retrospective observational study. We included patients aged 20 years and over, diagnosed with advanced kidney disease and receiving palliative and hospice care consultation services between January 2014 and December 2018 in a tertiary teaching hospital in Taiwan. We reviewed medical records and used logistic regression to identify factors associated with do-not-resuscitate consent types and end-of-life treatments. Results: A total of 275 patients were included, in which 21% signed their do-not-resuscitate consents. A total of 233 patients were followed until death, and 32% of the decedents continued hemodialysis, 75% underwent nasogastric (NG) tube placement, and 70% took antibiotics in their final seven days of life. Do-not-resuscitate consents signed by patients were associated with reduced life-prolonging treatments including feeding tube placement and antibiotic use in the last seven days (odd ratio and 95% confidence interval were 0.16, 0.07–0.34 and 0.33, 0.16–0.69, respectively) compared to do-not-resuscitate consents signed by surrogates. Conclusions: Do-not-resuscitate consent signed by patients and not by surrogates may reflect better patients’ autonomy and reduced life-prolonging treatments in the final seven days of patients with advanced kidney disease. Full article

(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)

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11 pages, 343 KiB

Open AccessArticle

Assessing Medical Students’ Confidence towards Provision of Palliative Care: A Cross-Sectional Study

by Shih-Ya Leung and Eliza Lai-Yi Wong

Int. J. Environ. Res. Public Health 2021, 18(15), 8071; https://doi.org/10.3390/ijerph18158071 - 30 Jul 2021

Cited by 3 | Viewed by 2529

Abstract

Under a surging demand for palliative care, medical students generally still show a lack of confidence in the provision in abroad studies. This cross-sectional study aims to investigate the confidence and its association with knowledge, attitude and exposure on providing palliative care among medical undergraduates with a self-administered questionnaire to improve the international phenomenon. Full-time local medical undergraduates were recruited to obtain information regarding the demographics, confidence, knowledge, attitude and exposure on palliative care; the information was collected from July 2020 to October 2020. Questions on confidence (10-items), knowledge (20-items), attitude (10-items) and exposure were referenced from validated indexes and designed from literature review. Confidence level was categorized into “Confident” and “Non-confident” as suggested by studies to facilitate data analysis and comparison. Of the 303 participants, 59.4% were “Non-confident” (95% C.I.: 53.8% to 65.0%) in providing palliative care on average. Among medical students, knowledge (p = 0.010) and attitude (p = 0.003) are significantly positively associated with the confidence to provide palliative care, while exposure to death of family/friends (p = 0.024) is negatively associated. This study begins an investigation on the research area in Hong Kong primarily. The confidence of local medical students should be enhanced to provide palliative care in their future. It thus highlights the importance of the medical curriculum and provides insights to remove barriers responsively to improve the overall confidence and the quality of palliative care. Full article

(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)

13 pages, 343 KiB

Open AccessArticle

The Role Complexities in Advance Care Planning for End-of-Life Care—Nursing Students’ Perception of the Nursing Profession

by Suet Ying Ng and Eliza Lai-Yi Wong

Int. J. Environ. Res. Public Health 2021, 18(12), 6574; https://doi.org/10.3390/ijerph18126574 - 18 Jun 2021

Cited by 3 | Viewed by 2931

Abstract

Nurses’ perceptions of being responsible for advance care planning (ACP) vary greatly across different studies. It could, however, affect their involvement in advance care planning and patients’ quality of death. Recent studies on this topic have mostly focused on advance directives but not ACP and nurses in the ward setting. This study aimed to assess the perception of Hong Kong nursing undergraduates of the nurse’s role in advance care planning and examine its associations with knowledge, attitude, and experience. A cross-sectional 57-item survey was delivered to nursing undergraduates between June and August 2020. The chi-squared test or Fisher’s exact test were used for univariate analysis. The multiple logistic regression model was used for multivariate analysis. A total of 469 participants were assessed for eligibility; 242 of them were included in the data analysis, with a response rate of 97.6%. The majority of respondents—77.3% (95% CI: 72.0–82.6%)—perceived having a role in ACP, but large discrepancies were found between their perception of their role regarding different aspects of ACP. Participants who had a better knowledge status (p = 0.029) or supported the use of ACP (p < 0.001) were more likely to have a positive perception of their role in ACP. A negative correlation was found between the experience of life threat and positive role perception (p < 0.001). Through strengthening training, the role clarity of nursing undergraduates could be achieved, maximizing their cooperation with and implementation of ACP in their future nursing career. The enhancement of end-of-life education could also be undertaken to fill nursing undergraduates’ knowledge gap in this area and change their attitudes. Full article

(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)

Review

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16 pages, 3863 KiB

Open AccessReview

A Systematic Review and Bayesian Network Meta-Analysis Investigating the Effectiveness of Psychological Short-Term Interventions in Inpatient Palliative Care Settings

by Reka Schweighoffer, Andrea M. Schumacher, Richard Blaese, Silke Walter and Sandra Eckstein

Int. J. Environ. Res. Public Health 2022, 19(13), 7711; https://doi.org/10.3390/ijerph19137711 - 23 Jun 2022

Cited by 3 | Viewed by 2434

Abstract

This paper reviews and summarises the evidence of short-term psychosocial interventions (up to 12 sessions delivered within less than eight weeks) on anxiety, depression, and emotional distress in palliative patients in inpatient settings. We screened publications from the following five databases, Embase, PubMed, PsycINFO, Web of Science, and CINAHL, from their inception to 10 September 2021. The eligible studies included controls receiving standard palliative care, actively treated controls, and wait-list controls. Nine studies met the eligibility criteria and reported the effects of five psychosocial interventions in a total of N = 543 patients. We followed PRISMA-guidelines for outcome reporting and the Cochrane Risk of Bias Assessment Tool for assessing study quality. This paper used the network meta-analysis to compare multiple treatments by providing greater statistical power and the cross-validation of observed treatment effects, using the R package BUGSnet. Compared to control groups, the following psychosocial interventions in inpatient settings showed to be superior: life review interventions were the best ranked treatment for improving anxiety and distress, while the top ranked treatment for reducing depression was outlook intervention. The short-term psychosocial interventions investigated in this meta-analysis, especially life review intervention, are feasible and can potentially improve anxiety, depression, and distress in palliative inpatients and should therefore be offered in inpatient settings. Full article

(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)

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