Who makes it out alive?—Predicting survival to discharge of hospital patients referred to residential aged care

BackgroundClinicians in acute hospitals make important discharge decisions that require them to estimate patients’ life expectancies. This is a particularly challenging task when it comes to older palliative care patients, even for experienced clinicians.AimTo identify factors that predict palliative care patients’ survival to discharge from hospital to residential aged care and examine the accuracy of survival predictions of two prognostic tools (Palliative Prognostic Score and Palliative Prognostic Index).MethodsRetrospective file audit of palliative care inpatients referred for residential aged care placement over a 2-year period in an acute hospital in Melbourne, Australia. Files were excluded when patients had died or been discharged home before being reviewed by the hospital's assessment team.FindingsOverall, 44% of the 71 palliative care patients referred for residential aged care placement died before being discharged from hospital. Significant predictors of survival to discharge were nonmalignant diagnoses, higher performance status, and favourable prognoses according to the Palliative Prognostic Index. The least favourable survival category of the modified Palliative Prognostic Score predicted inpatient death with low sensitivity but high specificity.DiscussionMany palliative care patients are commencing upon the taxing residential aged care placement pathway with questionable benefits to them, their families, and the healthcare system. The low rate of patients surviving to discharge may reflect gaps in the recognition of dying, amongst other system-specific challenges.ConclusionPrognostic tools can feasibly be completed with routinely collected hospital data and their use is indicated to support clinical decision-making and inform transfer decisions in acute settings. Such decisions can rely on the high specificity of the least favourable survival category of the modified Palliative Prognostic Score, which yields fewer false-negatives that would unnecessarily stretch patients’ length of stay. Equally, a favourable prognosis according to the Palliative Prognostic Index can reassure assessment teams, patients and families that a transfer is likely to be appropriate. For those patients who fall between these two categories, decisions can be supplemented by other factors shown to predict survival to discharge, including malignancy, reduced oral intake, anorexia, and a poor Karnofsky Performance Index. The need for subacute palliative care options with timely transfer processes warrants further investigation.     

Residential aged care: the last frontier for palliative care

AIM: This paper is a report of an explorative study describing the perceptions and beliefs about palliative care among nurses and care assistants working in residential aged care facilities in Australia. BACKGROUND: Internationally, the number of people dying in residential aged care facilities is growing. In Australia, aged care providers are being encouraged and supported by a positive policy platform to deliver a palliative approach to care, which has generated significant interest from clinicians, academics and researchers. However, a little is known about the ability and capacity of residential aged care services to adopt and provide a palliative approach to care. METHODS: Focus groups were used to investigate the collective perceptions and beliefs about palliative care in a convenience sample of nurses and care assistants working in residential aged care facilities in Australia. Thematic content analysis was used to analyse the data, which were collected during 2004. RESULTS: Four major themes emerged: (1) being like family; (2) advocacy as a key role; (3) challenges in communicating with other healthcare providers; (4) battling and striving to succeed against the odds. Although participants described involvement and commitment to quality palliative care, they also expressed a need for additional education and support about symptom control, language and access to specialist services and resources. CONCLUSION: The residential aged care sector is in need of support for providing palliative care, yet there are significant professional and system barriers to care delivery. The provision of enhanced palliative care educational and networking opportunities for nurses and care assistants in residential aged care, augmented by a supportive organizational culture, would assist in the adoption of a palliative approach to service delivery and requires systematic investigation.     

A study of nurses' knowledge of a palliative approach in residential aged care facilities

Aim. To identify residential aged care nurses’ current knowledge of palliative care for older residents in need of end‐of‐life care. Background. Recently, there has been a growing interest in the delivery of palliative care in residential aged care facilities. While it is recognized that aged care nurses do possess palliative care knowledge the actual level of their knowledge has not been well documented. Design/method. An analytical study using a validated questionnaire tool – Palliative Care Quiz for Nursing, developed by Ross et al. [Journal of Advanced Nursing 23 (1996) 126–137] , combined with a demographic survey of Registered Nurses and assistants in nursing working in five high care residential aged care facilities in inner city region of Sydney, Australia. Results. The total Palliative Care Quiz for Nursing score possible was 20. The mean score for Registered Nurses was 11.7 (SD 3.1) and for AINs 5.8 (SD 3.3), the difference between scores being significant (t = 8.7, df 95, P = 0.000). Misconceptions in palliative care were identified for both the groups of carers. Conclusion. This research has highlighted the need for ongoing palliative care education for both the groups of primary carers. Relevance to clinical practice. The findings of this research highlight the existing palliative care knowledge of residential aged care nurses and provides evidence for education programmes.     

Palliative care as a framework for older people's long-term care

This article draws on the findings from several years of research on the health problems, quality of life and care of older people, especially during the later years of life, and argues that there is a need to develop and provide care according to the principles of palliative care. The findings indicate that palliative care, including a focus on symptom management, psychosocial and existential issues, may be appropriate for the long-term care of older or very old people - not just those at the very end of life. However, the way that palliative care is provided to older people at the very end of life needs to be adjusted. It should be adapted to the situation that accompanies advanced age and having lived a long life. It should recognize that symptom management ought to address clusters of health complaints rather than isolated symptoms, bodily changes and how they are perceived. Palliative care for older people should also take into consideration the importance of the social network as well as common fears of dying and the very essence of death, and fear of being separated from one's loved ones and the activities valued in life.     

The evolution of palliative care and the relevance to residential aged care: Understanding the past to inform the future

Improving the experience of dying in residential aged care units became a significant project of the Australian Government’s National Palliative Care Program in 2004. This initiative resulted in an expectation that residential aged care facilities would adopt the recommended palliative approach to underpin service delivery. Recognising palliative care as a specialist area of health care practice is a recent development which has influenced the expectations of community and government. This paper traces the global history of palliative care and how historical factors influenced its development in Australia. This discussion presents an overview of the positioning of dying and death within society, explaining how with the shifting emphasis on care of the dying accordingly has been the focus on palliative care specialists. Care of the dying in residential aged care units has largely been overlooked in the context of specialist involvement. This paper acknowledges dying and death as occurring in residential aged care facilities, illuminating the advantages of adopting a palliative approach and offers recommendations.     

Death in homes: bereavement needs of residents, relatives and staff

This article reports findings from a study in the UK, which investigated the case for applying the principles and practices of palliative care to caring for older people dying in residential and nursing homes. It focuses on the emotional and practical consequences of a death occurring in these settings. It outlines the bereavement needs of residents, relatives and staff as well as obstacles to providing adequate support. Homes differed in policies and practices in relation to providing bereavement support for relatives. Most managers felt some responsibility for relatives of deceased residents, but rarely felt capable of providing what they perceived as appropriate bereavement support. They recognized the need for practical as well as emotional support for staff and other residents after a death but felt that they lacked the skills and time to provide this. Certain types of home prioritized bereavement support, but many homes operated under considerable resource and staffing constraints. Even where support needs were recognized it was often difficult to put the requisite help into operation. This study identified a lack of training in communication skills and in particular little access to training in bereavement care. This area needs to be addressed if residents, relatives and home staff in these settings are to have their bereavement needs met.     

Telehealth Palliative Care Needs Rounds During a Pandemic

Older people living in care homes deserve access to specialist palliative care in their last months of life, and this has never been more important than during a global pandemic. Palliative Care Needs Rounds facilitated by nurse practitioners are cost-effective, reduce avoidable hospital transfers, improve quality of death and dying, and increase the capacity of staff to recognize and plan for care for dying residents in care homes. Conducting Palliative Care Needs Rounds via telehealth increases access to specialist palliative care while reducing the risk of coronavirus disease 2019 transmission.     

Relatives' participation at the time of death: Standardisation in pre and post-mortem care in a palliative medical unit

PurposeThe aim of this study was to illuminate the development of standardisation of relatives' participation at the time of death in the Palliative Medical Unit and to explore if the implementation of standardisation brought palliative care more in line with its ideology.MethodsA registration form was developed and utilized by the Palliative Medical Unit nurse in charge of the patient and family to register to what extent relatives participated at the time of death. The study consists of two data sets named evaluation 1 and 2. Evaluation 1 includes data collected during the period 01.11.1995–31.12.1999, representing 73% of all deaths (N = 244). Evaluation 2 includes data collected during the period 01.01.2003–31.12.2009, representing 71% of all deaths (N = 400). The data was analysed in SPSS, covering primarily the frequency of participation and correlation between evaluation 1 and evaluation 2.ResultsRelatives are more often present at the moment of death, while nurses are less present at this moment. Additionally, Palliative Medical Unit nurses use more time to inform and discuss relatives' participation in pre and post-mortem care, as well as making agreements with relatives after death occurs.ConclusionImportant premises for successful standardisation are fostering Palliative Medical Unit nurses' knowledge about various aspects of pre and post-mortem care through regular evaluation and an educational programme providing staff with necessary time, awareness and skills. In addition nurses also require sufficient amount of time in the clinic.     

Improving delirium recognition and assessment for people receiving inpatient palliative care: a mixed methods meta-synthesis

BackgroundDelirium is a serious acute neurocognitive condition frequently occurring for hospitalized patients, including those receiving care in specialist palliative care units. There are many delirium evidence-practice gaps in palliative care, including that the condition is under-recognized and challenging to assess.ObjectivesTo report the meta-synthesis of a research project investigating delirium epidemiology, systems and nursing practice in palliative care units.MethodsThe Delirium in Palliative Care (DePAC) project was a two-phase sequential transformative mixed methods design with knowledge translation as the theoretical framework. The project answered five different research questions about delirium epidemiology, systems of care and nursing practice in palliative care units. Data integration and metasynthesis occurred at project conclusion.ResultsThere was a moderate to high rate of delirium occurrence in palliative care unit populations; and palliative care nurses had unmet delirium knowledge needs and worked within systems and team processes that were inadequate for delirium recognition and assessment. The meta-inference of the DePAC project was that a widely-held but paradoxical view that palliative care and dying patients are different from the wider hospital population has separated them from the overall generation of delirium evidence, and contributed to the extent of practice deficiencies in palliative care units.ConclusionImproving palliative care nurses' capabilities to recognize and assess delirium will require action at the patient and family, nurse, team and system levels. A broader, hospital-wide perspective would accelerate implementation of evidence-based delirium care for people receiving palliative care, both in specialist units, and the wider hospital setting.     

Introducing reflective narratives into palliative care home care education

The purpose of the research project was to determine the impact of palliative care education and the writing of a reflective narrative on nurses' self-awareness of their attitudes toward death and care of the dying. Findings support integration of narrative reflection into palliative care education as an effective teaching strategy.Only qualitative findings of a larger study are presented; quantitative results have been published in the Journal of Hospice & Palliative Nursing (Home care and hospice nurses' attitudes toward death and caring for the dying: effects of palliative care education. 2005;7[4], 212-218).     

Palliative care for frail older people: A cross-sectional survey of patients at two hospitals in England

Abstract

Background

The majority of deaths in the UK occur in acute hospitals, and older people have the highest hospital death rates. Improved palliative care for older people has been identified as an international priority, yet little is known about the profile of older patients with palliative care needs in hospitals.

Objective

To describe the profile of older hospital inpatients (≥85 years), and to explore the prevalence and nature of palliative care needs among this group.

Methods

A cross-sectional survey of palliative care need in older people was undertaken in two UK acute hospitals. Hospital case notes were examined for evidence of palliative care need according to Gold Standards Framework (GSF) prognostic indicator criteria. Patients (or consultees) completed assessments of palliative care need.

Subjects

Data were collected for 654 consenting patients/consultees. This paper describes data from 110 patients aged ≥85 years.

Results

Forty per cent of the older patients were identified as having palliative care needs according to GSF criteria. Frailty was the most common indicator of palliative care need (16.7%). The most common reason for admission to hospital was general frailty (25.5%).

Conclusions

While this study is limited by its small sample size, the results suggest that older people with frailty conditions constitute a substantial proportion of hospital inpatients with palliative care needs. However, it is unclear whether a specialist palliative care framework is the most appropriate model for this group. The care provided to older people at the end of life may best be provided by generalists such as geriatricians, as part of a comprehensive generalist-led palliative care framework.     

Palliative care nurses' perceptions of good and bad deaths and care expectations: a qualitative analysis

Individuals who are involved with the death of a person with a terminal illness will often classify the death as either 'good' or 'bad'. Families and healthcare practitioners assess many factors when determining their 'success' or 'failure' in assisting someone in the terminal phase. Palliative care nurses are particularly vulnerable to self-assessments about care of the dying, because death is a daily occurrence. Feelings of failure, unmet expectations and feeling of regret about not being able to prevent a traumatic death may be a source of stress for palliative care nurse and may affect their abilities to function effectively. This article reports the findings of a study involving interviews with 20 palliative care nurses to determine their perceptions of a good and bad death. The study also examined the expectations they hold of themselves and that they believe others hold of them in helping patients to attain a good death. Clinical implications are discussed based on these findings.     

Palliative care education for care workers in aged care: A scoping review

BackgroundGlobally, residential aged care is a common place to receive palliative care. Yet 70% of the workforce is made up of unregulated health care workers, many of whom have no formal palliative care education and report a lack of knowledge and ability to provide best practice palliative care.QuestionDoes the provision of palliative care education to unregulated health care workers in residential aged care, improve knowledge, confidence, and ability to provide best practice care to residents with palliative care needs?MethodsA literature search utilising health care databases CINAHL, MEDLINE, and AgeLine was conducted. Citations were screened against the inclusion criteria and the methodology from the Joanna Briggs Institute (JBI) Manual for Evidence Synthesis, assisted in selecting articles that informed the research question.FindingsNine articles met the inclusion criteria. Four areas of interest were derived: (i) Palliative Care knowledge and confidence; (ii) Communication skills; (iii) Roles and responsibilities; (iv) Barriers to implementation and sustainability.DiscussionEvidence suggests the provision of palliative care education to unregulated health care workers may be beneficial in imparting knowledge and confidence, ultimately resulting in an improved ability to provide best practice care. However, barriers within the aged care system may interfere with the implementation and sustainability of newly acquired knowledge. Limitations of the review include the unknown quality of the educational content provided.ConclusionPalliative care education is part of the solution to enhanced outcomes for aged care residents but is not the complete answer. Systemic industry change is required to achieve sustainable outcomes.     

Palliative care in nursing homes: exploring care assistants' knowledge

Aim.  To explore the level of palliative care knowledge and to identify educational needs of care assistants (CAs) working within a nursing home context.
Background.  In the United Kingdom (UK) many patients at the end-of-life are admitted to (or reside in) nursing homes, where they receive care from unqualified CAs who have little formal training. Mandatory training in specific skills to meet palliative care needs are absent.
Method.  Questionnaire to CAs in 48 of 91 private nursing homes in one UK region.
Findings.  A population of 1135 CAs were targeted with a response rate of 45% ( n  = 508). A high proportion of CAs in this sample required information about the philosophy and principles of palliative care. Results support the need for an educational initiative to improve palliative care in nursing homes.
Conclusion.  Although recognized as a common place of death for older people, CAs are often unprepared to provide end-of-life care to nursing home residents. It is recommended that attention be given towards developing the skills and knowledge of this staff group.     

Usefulness,feasibility and face validity of the interRAI Palliative Care instrument according to care professionals in nursing homes: A qualitative study

BackgroundNursing homes are important locations for palliative care. High quality palliative care requires an evaluation of the different care needs of the nursing home residents. The interRAI Palliative Care instrument is a comprehensive assessment that evaluates the needs and preferences of adults receiving palliative care.ObjectivesThis study aims to evaluate the usefulness, feasibility and face validity of the interRAI Palliative Care instrument.DesignA qualitative study was conducted, based on the abductive reasoning approach.SettingFifteen nursing homes in Flanders (Belgium).ParticipantsCalls for participation were sent out by four umbrella organizations of Flemish nursing homes (Belgium) and at a national conference for nursing home staff. Nineteen care professionals (nurses, certified nursing assistants, psychologists, physiotherapists, quality coordinators and directors) of 15 nursing homes voluntarily agreed to participate in the study.MethodsDuring one year, care professionals evaluated the needs and preferences of all nursing home residents receiving palliative care by means of the interRAI Palliative Care instrument. Data on the usefulness, feasibility and face validity of the interRAI Palliative Care instrument were derived from notes, semi-structured interviews and focus groups with participating care professionals and were thematically analyzed and synthesized. Data were gathered between December 2013 and March 2015.ResultsIn general, the interRAI Palliative Care (interRAI PC instrument) is a useful instrument according to care professionals in nursing homes. However, care professionals made a series of recommendations in order to optimize the usefulness of the instrument. The interRAI PC instrument is not always feasible to complete because of organizational reasons. Furthermore, the face validity of the instrument could be improved since certain items are incomplete, lacking, redundant or too complex.ConclusionsFindings highlight the importance of adapting the content of the interRAI Palliative Care instrument for use in nursing homes. Furthermore, the use of the instrument should be integrated in the organization of daily care routines in the nursing homes. Tackling the critical remarks of care professionals will help to optimize the interRAI Palliative Care instrument and hence support palliative care of high quality in nursing homes.     

Perceptions of the role of the hospital palliative care team

AIM: The aim of this study was to understand staff perceptions of the role of the hospital palliative care team and to identify knowledge and confidence levels of general staff caring for patients with palliative care needs. METHOD: A survey questionnaire tool was used with a response rate of 51 per cent. Participants included nurses, health care assistants and doctors. RESULTS: The study highlighted several misconceptions about the role of the palliative care team, but demonstrated that the clinical staff surveyed were confident in their palliative care skills, with the exception of discharge planning, despite the fact that only 26 per cent of nurses reported having undergone training in palliative care. It identified that HCAs felt confident in caring for dying patients yet had little confidence in dealing with distressed relatives or speaking to patients and families about death. It was also interesting to note that trained nurses felt confident in their symptom control skills, and they rated training in this area as one of the top priorities. CONCLUSION: The findings have considerable implications for palliative care services. Professional education should continue to focus primarily on symptom control and communication skills training, but stress management training should be considered. Staff need to be clear about how to obtain advice and what support is available for cancer patients. Further research is required to understand the needs of HCAs and potential models for education and support.