Non-cancer palliative care: Experience and challenges faced in a palliative program from Singapore

Abstract

Palliative care espouses a holistic and multidisciplinary approach applicable to stages of disease in response to needs together with disease-modifying treatments, regardless of diagnosis. While cancer is the single most common killer disease, responsible for 28% of deaths in Singapore in 2007, non-cancer diseases accounted for more than twice that at 66%. Integrating palliative care for patients suffering from end-organ failure would balance curative measures with quality of life for our frailest patients, and support these patients during their final journey. This is only possible with close cooperation between palliative care teams and organ specialists. We report our experience and insights in managing non-cancer cases in an integrative model of care over the past 4 years. We find that most families and patients suffering from end stage non-cancer conditions are able to accept palliative care after honest communication and are able to talk about end-of-life plans. The majority of patients can achieve satisfactory symptom control, be cared for, and die in a place of their choice with the support of a palliative home care program without the need for frequent hospitalizations. Sustaining this model of care requires diligence, collaboration, and upgrading of skills based on coordinated resource allocation.     

The epidemiology of carbapenemases in Latin America and the Caribbean

Introduction: Enterobacteriaceae, Pseudomonas spp., and Acinetobacter spp. infections are major causes of morbidity and mortality, especially due to the emergence and spread of β-lactamases. Carbapenemases, which are β-lactamases with the capacity to hydrolyze or inactivate carbapenems, have become a serious concern as they have the largest hydrolytic spectrum and therefore limit the utility of most β-lactam antibiotics.

Areas covered: Here, we present an update of the current status of carbapenemases in Latin America and the Caribbean.

Expert commentary: The increased frequency of reports on carbapenemases in Latin America and the Caribbean shows that they have successfully spread and have even become endemic in some countries. Countries such as Brazil, Colombia, Argentina, and Mexico account for the majority of these reports. Early suspicion and detection along with implementation of antimicrobial stewardship programs in all healthcare settings are crucial for the control and prevention of carbapenemase-producing bacteria.     

Palliative sedation in a specialized unit for acute palliative care in a cancer hospital: comparing patients dying with and without palliative sedation

Palliative sedation is undergoing extensive debate. The aims of this study were to describe the practice of palliative sedation at a specialized acute palliative care unit and to study whether patients who received palliative sedation differed from patients who did not. We performed a systematic retrospective analysis of the medical and nursing records of all 157 cancer patients who died at the acute palliative care unit between 2001 and 2005. Palliative sedation, defined as continuous deep sedation prior to death, was used for 43% of all deceased patients. In 87% of the sedated patients, it was started in the last two days before death. Sedated and nonsedated patients did not differ in survival after admission (eight days vs. seven days, P = 0.12). Sedated patients were younger (55 years vs. 59 years, P = 0.04) and more often had malignancies of the digestive tract (P < 0.01). In both groups, common symptoms at admission were pain (79% vs. 87%, P = 0.23), constipation, (40% vs. 48%, P = 0.46), and dyspnea (32% vs. 29%, P = 0.77). On the day that palliative sedation was started, sedated patients more often suffered from dyspnea and delirium than nonsedated patients at a comparable day before death. The most important indications for palliative sedation were terminal restlessness (60%) and dyspnea (46%). We conclude that at the studied acute palliative care unit, patients who ultimately received palliative sedation did not have symptoms different than nonsedated patients at admission, but on the day at which the sedation was started, they suffered more often from delirium and dyspnea.     

Emotional support and the role of Clinical Nurse Specialists in palliative care

BACKGROUND: Clinical Nurse Specialists (CNS) play a major role in the delivery of specialist palliative care services to patients with advanced cancer, in hospital, hospice and community settings across the United Kingdom. A major component of their work focuses on the delivery of emotional care and support to patients and their families. AIM: This paper critically examines the literature on emotional care and support for patients with advanced cancer requiring palliative care. The aim is to increase understanding of how CNSs and patients interact and work together to produce emotionally supportive relationships. METHODS: A literature search was performed using the CINAHL, MEDLINE and ASSIA CD-ROM databases and combinations of the key words: 'emotional support', 'emotional care', 'end of life', 'palliative', 'terminal illness', 'advanced cancer', 'Clinical Nurse Specialist', 'emotional labour'. Additional relevant articles were identified from the reference lists of papers identified by the literature search. FINDINGS: The literature revealed a lack of clarity about the terms used to describe emotional care and support. However, at the same time, there is a taken for granted assumption that a shared understanding of these terms exists. Developing supportive nurse-patient relationships involves a complex process, one that consists of getting to 'know the patient' through the effective use of communication skills, in a variety of health care contexts. The costs of engaging in 'emotion work' are highlighted. CONCLUSIONS: Existing research fails to recognize that emotional care and support as a concept is not a fixed, stable entity learnt through experience and socialization, but is moulded by the process of social interaction and by specific contexts and theoretical perspectives. Further methodologically sound research is needed to explore what happens when emotional care and support are delivered in different care settings, obtaining the views of both parties involved. Implications for the practice of CNSs are discussed.     

国内外姑息照护的需求与发展现状

针对国内外姑息照护的需求,阐述了需求增长的原因,并对姑息照护发展中的焦点问题进行了综述.     

上海市晚期癌症患者姑息照护质量及其影响因素的分析

目的 调查上海市晚期癌症患者的姑息照护质量及其影响因素.方法 采用一般资料调查表和姑息照护结局量表对300例晚期癌症患者进行调查.结果 晚期癌症患者姑息照护质量得分为（16.55±6.47）分;家庭人均月收入、经济压力、遵守医嘱程度、病程、患者是否知晓病情、心理护理、被照护医院等级是影响晚期癌症患者姑息照护质量的主要因素.结论 鉴别晚期癌症患者姑息照护质量的主要影响因素可帮助临床医护人员及相关政策部门制订针对性强的于预对策,以提高晚期癌症患者的照护质量水平,进而提升其生存质量.     

Strengthening global midwifery education to improve quality maternity care: Co-designing the World Health Organization Midwifery Assessment Tool for Education (MATE)

AimsTo describe a three-phase co-designed project to develop a culturally appropriate and relevant education assessment tool, and report on pilot and field-testing phases.BackgroundHigh-quality midwifery education is essential for high-quality maternity care (WHO 2019); however midwifery education and maternity care vary in quality throughout Europe. To support countries in strengthening their midwifery education, World Health Organization (WHO) European Region commissioned development of the Midwifery Assessment Tool for Education (MATE). The tool was developed over three years, using an iterative, collaborative process with regional experts. Published by WHO in May 2020, MATE provides focused questions and evidence-informed resources to stimulate and inform discussions within country.DesignThree-phase co-design approach to develop, pilot and field-test an education assessment tool.MethodsPhase 1: initial development of MATE with expert midwifery support; Phase 2: MATE piloting workshops in Czech Republic and Lithuania focusing on clarity, usability and relevance; Phase 3: MATE field-testing workshop in Bulgaria exploring the process of using MATE and its effectiveness for generating discussion. Purposive selection of workshop participants ensured a broad range of perspectives: clinicians, educators, students, policy makers and service users. All participants were invited to give narrative feedback during workshops and via completion of a post-workshop online survey. The XX University Research Ethics Committee advised that formal ethical review was unnecessary.ResultsFeedback from collaborators in all phases indicated that engaging with MATE co-design and testing was a positive experience. A ‘bottoms up’ approach ensured that MATE content was relevant to regional needs, culturally acceptable and appropriate.Seventy-nine individuals participated in Phases 2 and 3 and all were sent a post-workshop online survey, with 31 responses (39 %). Qualitative and quantitative data indicated that the aim of MATE was well understood, and its usability and relevance were evaluated positively. In Phase 2, improvements to wording and format were suggested. MATE was subsequently amended prior to field testing. Phase 3 feedback indicated that MATE was highly effective for generating in-country dialogue and frank discussions about the future of midwifery education and practice.ConclusionsUsing a co-design approach has ensured that MATE is culturally relevant, accessible and appropriate. This initial evaluation indicates that MATE can facilitate in-country dialogue and support the strengthening of midwifery education in accordance with WHO aims.Next steps are a fully evaluated trial of MATE in a selected partner country, where we will continue to work collaboratively to optimise engagement and ensure cultural appropriateness.     

Health care assistants' role,function and development: results of a national survey

Intensive care has developed as a speciality since the 1950s; during this time there have been major technological advances in health care provision leading to a rapid expansion of all areas of critical care. The ongoing problem of recruiting appropriately qualified nurses has affected staffing levels in many units and continues to be a national problem. For many, the answer lies in employing health care assistants to support the work of registered nurses. A key aim of the British Association of Critical Care Nurses is to promote the art and science of critical care nursing by providing representation for its members, by responding to political and professional change and by producing and publishing position statements. A primary component of the work surrounding the development of this second position statement was the gathering of contemporary information in relation to the role of health care assistants within critical care units throughout the UK, through a survey of 645 critical care units within the UK. At present the impact upon the role of the critical care nurse is not fully understood, with research in this area suggesting that although there is a role for the health care assistant in the critical care environment, this should only be undertaken with a full analysis of this impact upon the work of the registered nurse.     

The development and implementation of a clinical skills matrix to plan and monitor palliative care nurses' skills

AimTo develop and implement a region wide skills matrix for palliative care and district nurses in rural Victoria in order to identify and address individual learning needs and appropriate professional development strategies based on the Australian National Palliative Care Standards. This study is the first in a series of papers discussing and evaluating the development and implementation of a skills matrix. Future papers will report on participants’ data reporting.MethodsThe development and implementation of a skills matrix for palliative care nurses was based on using several evidence-based strategies involving four main stages. There were: stakeholder consultation, collaboration, consolidation and implementation. The initial stage of development of the matrix involved consultation with regional stakeholders to establish and refine the project objectives. The second stage involved collection of information from regional stakeholders; brainstorming and discussion of the technical skills required for palliative care and the cross over with district nursing. The third stage involved a facilitated process whereby action plans were devised and the final stage involved a plan for the survey dissemination and evaluation of the training needs.Other evidence-based strategies used were Benner’s theoretical model of clinical competence, the Australian National Palliative Care Standards and the triple C model of project implementation.ResultsThis study reported on the development and implementation of a self-assessment of competencies skills matrix for nurses working in palliative care based on the Australian National Standards of palliative care used by services.The matrix included all the aspects covered by the Australian National Palliative Care Standards and mapped them to various competencies using Benner’s model ranging from novice to expert. The availability of a skills matrix tool to self-assess is important to keep track of the clinical competencies gained by palliative care nurses. Targeted educational interventions identified by the skills matrix have the potential to improve quality of care provided in the palliative care setting.ConclusionThe successful development and implementation of the palliative skills matrix across the Gippsland region relied on using several evidence-based strategies to standardise the competencies across the palliative care setting in rural Victoria, Australia. Examples of these strategies included using Benner’s theoretical competency model, the Australian National Palliative Standards and the triple C model, which included stakeholders’ consultation, collaboration and consolidation.     

The use of cognitive interviewing methodology in the design and testing of a screening tool for supportive and palliative care needs

Goals of work  The authors describe the use of cognitive interviewing methodology in the development of a new supportive and palliative care screening measure to identify the specialist supportive and palliative care needs of patients with an advanced illness. Materials and methods  A draft screening measure was developed by literature reviewing and consultation with patients, carers and health and social care professionals. Using this draft, cognitive interviews were conducted with six professionals and one consumer using the ‘thinking aloud technique’ to assess the perception, usefulness and interpretation of each question on the measure. The focus of these interviews was to identify unclear words or phrases and to explore how the questions worked in eliciting a response. A content analysis of the interviews was used to identify problems with the text, phrasing and format of the questions and accompanying responses. Main results  The authors found the technique to be useful in identifying jargon or confusing questions. A number of perspectives were taken into account by speaking to health and social care professionals in primary care and secondary care who would be offering the measure to future patients. Conclusions  The most sensitive questions were highlighted, and this enabled the researchers to consider how these should be asked and responded to in subsequent versions of the measure. The measure was re-drafted in light of these comments.     

Developing palliative care practice in nursing and residential care homes: the role of the clinical nurse specialist

The development of practice is but one aspect of Clinical Nurse Specialists' (CNSs) work, and a number of factors act to shape the extent to which CNSs are able to work with and develop practice with nursing and residential care homes. A postal survey of 730 community CNSs in palliative care working in the UK was undertaken to explore the involvement of these nurses with nursing and residential care homes. Much of the focus of the involvement was reactive work meeting the direct clinical needs of residents, primarily with cancer. Although the CNSs perceived that there were some educational and care deficits in these care settings, the amount of proactive work undertaken to improve practice was limited. The development work undertaken was focused on educational initiatives and establishing link nurse systems. There is potential to develop palliative care practice in nursing and residential care homes through practice development initiatives.     

The validity and reliability of the World Health Organization Mental Disorders Checklist for use in a telehealth clinic in Hong Kong

This research aimed to test the validity and reliability of the 'World Health Organization Mental Disorders Checklist' for use in a telehealth clinic in Hong Kong. The Checklist adopted four subscales: (i) depression; (ii) anxiety; (iii) alcohol use disorders; and (vi) functioning and disablement, and was translated from English into Chinese. It was validated by a panel of five experts to confirm its content validity (content validity index = 0.98) and cultural appropriateness in Hong Kong. The reliability of the checklist was supported by the findings of a test-retest procedure (Pearson correlation = 0.66-0.88, P < 0.01), internal consistency reliability (Cronbach's alpha = 0.54-0.83), and interrater reliability (Kendall's coefficient of concordance = 0.58-1.00, P < 0.01) involving a sample of 197 subjects from one telehealth clinic in Hong Kong.     

The correlation of standard heart failure assessment and palliative care questionnaires in a multidisciplinary heart failure clinic

Context

Heart failure (HF) is a leading cause of death and disability, and despite optimal care, patients may eventually require palliative care. Little is known about how palliative care questionnaires (the Edmonton Symptom Assessment Scale [ESAS] and the Palliative Performance Scale [PPS]) perform compared with HF assessment using the New York Heart Association (NYHA) functional class and the Kansas City Cardiomyopathy Questionnaire (KCCQ).

Objectives

To assess the utility of a palliative care questionnaire in patients with HF.

Methods

One hundred and five patients (mean age = 65 years, 76% male, mean ejection fraction = 28%) followed in an HF clinic were surveyed with the NYHA, PPS, ESAS, and KCCQ.

Results

The PPS and ESAS were each correlated to the NYHA class (P < 0.0001 for both) and the KCCQ score (PPS: R² = 0.57; ESAS: R² = −0.72; both P < 0.0001). There were 33 patients who either died (10 deaths) or were hospitalized (26 patients) for more than one year. In addition to age and gender, a higher (worse) ESAS score trended toward significance (P = 0.07) and a lower (worse) PPS was a significant (P = 0.04) predictor of all-cause hospitalization or death.

Conclusion

In a cohort of HF patients, we found a modest correlation with NYHA class and KCCQ assessment with the PPS and ESAS, two standard palliative care questionnaires. Given the difficulty in identifying patients with HF eligible for palliative or hospice care, these tools may be of use in clinical practice.     

Health promotion in palliative care: the patients' perception of therapeutic interaction with the palliative nurse in the primary care setting

AIMS: To identify and describe palliative patients' perception of factors within the interaction with the community palliative care nurse that enhance feelings of health and well-being, and to begin to define health promotion in relation to palliative nursing in the primary care setting. BACKGROUND: Health promotion may seem to be of little relevance in palliative care and for patients within its remit, and there is no definition of health promotion in relation to palliative care, yet therapeutic 'new' nursing, and its core elements of holism, egalitarianism and a humanistic approach accord with the philosophy of palliative care and are recognised as health promoting nursing practice. DESIGN/METHODS: A qualitative methodology was used. Information was obtained from 12 patients by a qualitative semi-structured interview. Data were organised and analysed using recognised guidelines for phenomenological analysis. FINDINGS: The patients identified two types of therapeutic interaction with the nurse, which enhanced feelings of health and well-being in different ways. Psychological well-being was enhanced by the humanistic and egalitarian personal interaction with the nurse, and the professional interaction focused on the disease and addressed physical problems. Although recognizing the nurses' role in the relief of physical symptoms, the patients' perception of 'feeling better' generally focussed on enhancement of psychological health and well-being. CONCLUSION: For the patients, a combination of 'new' (therapeutic) nursing and a more traditional expert-led approach resulted in the promotion of an enhanced sense of physical and psychological health and well-being, and was an integral part of community palliative care nursing. Based on the study findings, the researcher offers a definition of health promotion relevant to palliative nursing in the primary care setting, which identifies that for the patients (but with caveats related to generalizability), the practice of holistically therapeutic palliative nursing is the ideal.