The First Step to Initiate Pediatric Palliative Care: Identify Patient Needs and Cooperation of Medical Staff

Few Korean hospitals had experience in pediatric palliative care. Since the beginning of the national palliative care project, interest in pediatric palliative care has gradually increased, but the establishment of professional palliative care is still inadequate due to a lack of indicators. This study aimed to find considerations in the process of initiating palliative care services. The general and clinical characteristics of 181 patients aged less than 24 years who were registered at the pediatric palliative care center from January 2019 to August 2021 were evaluated. Life-limiting condition group 1 had the largest number of patients. The primary need for palliative care was psychological and emotional support, followed by information sharing and help in communication with the medical staff in decision-making processes. Seventy-two patients were technologically dependent, with one to four technical supports for each patient. The registration of patients with cancer increased with time, and the time from disease diagnosis to consultation for pediatric palliative care service was significantly reduced. In conclusion, before starting pediatric palliative care, it is necessary to understand the needs of patients and their families and to cooperate with medical staff.

Protocol for an exploratory, longitudinal single case study of a novel palliative care rehabilitative service

Background: Early access to rehabilitation can improve quality of life for those with life-limiting illnesses and is highlighted as a core component of the Adult Palliative Care Services Model of Care for Ireland. Despite this, palliative rehabilitation remains under-utilised and under-developed. In 2020, the Sláintecare Integration Fund provided opportunity to pilot a novel rehabilitative palliative care service, “Palliat Rehab”. This protocol proposes a case study, which aims to advance understanding of the form, content, and delivery of the pilot service. Methods: A prospective, longitudinal, mixed-methods, case study design will be used to describe the service and to explore the experiences of patients, informal carers and clinicians. Additionally, data collection instruments will be tested and the utility of outcome measures will be examined. Data will be collected from documentary, survey, and interview sources. Quantitative data will be analysed using descriptive statistics, including chi-square tests for categorical variables, Mann-Whitney U tests for ordinal data, and t-tests/ ANOVA for continuous data. Qualitative data will be analysed using thematic analysis. Conclusions: New pathways are required to advance service provision to ensure that patients receive the ‘right care, in the right place, at the right time’. The development of ‘‘Palliat Rehab’’ offers opportunity to study an innovative service and consider its potential contribution to the achievement of Sláintecare goals. Investigating the service within its environmental context will lead to a better understanding of ‘how’ and ‘why’ things happen. Findings will be of value in assessing whether there is evidence that supports the service, and will be used to inform efforts to further develop and tailor the intervention.

Hospital-Based Palliative and End-of-Life Care in the COVID-19 Pandemic: A Scoping Review

Aim: To identify the nature of the evidence reporting hospital-based palliative and end-of-life care during the COVID-19 pandemic. Background: The COVID-19 pandemic has seen an increase in the numbers of seriously ill people being cared for across all health services worldwide. Due to the rapid progression of severe symptoms, the majority of staff working in hospitals and other healthcare centres were providing end-of-life care. Little is known about the level of hospital-based palliative care service provided during the COVID-19 pandemic, particularly during surges in admission rates with an increased number of deaths accruing. Methods: A scoping review was conducted to search and select potential studies. The scoping review was guided by the framework of Arskey and O’Malley and advanced by the use of the methodology of the Joanna Briggs Institute. Results: Eighteen studies published between March 2020 and July 2021 were identified. Three broad categories included overall management strategy and logistics, symptom prevalence and management of patients with COVID-19 and end-of-life care needs within the current pandemic. Conclusions: This review highlights increased awareness and knowledge of palliative and end-of-life care provided in hospitals. The review also highlights the response of hospital-based palliative care teams to an evolving crisis, within the context of developed health systems under sustained and overwhelming pressure. Implications: Newly established clinical links and referral pathways developed during the initial COVID-19 surge between hospital-based palliative care and other healthcare teams, be continued and further enhanced. Understanding of the role of specialist palliative care providers in supporting palliative and end-of-life care within the hospital setting needs further investigation.

Effect of Music on Pain in Cancer Patients in Palliative Care Service: A Randomized Controlled Study

This study aimed to investigate the effect of music on pain, anxiety, comfort, and functional capacity of cancer patients who received care in a palliative care unit. The population of this randomized controlled trial consisted of cancer patients hospitalized in the palliative care service between July 2018 and July 2019. The study included 60 patients (30 interventions/30 controls). The patients in the intervention group were given a total of six music sessions, 10 minutes each with the Turkish classical music in maqams of their choice (Hejaz or Rast accompanied by an expert tambour (drum) player). There was a significant difference between the mean total pain scores, anxiety, comfort, and functional capacity scores of the patients in the intervention and control groups before and after music therapy. Music therapy decreased the level of pain. It is demonstrated that Turkish classical music therapy improved the pain, anxiety, comfort, and functional capacity in the palliative care unit.

Co-Design of an Evidenced Informed Service Model of Integrated Palliative Care for Persons Living with Severe Mental Illness: A Qualitative Exploratory Study

Background: Globally, close to one billion people are living with a mental health disorder, and it is one of the most neglected areas in Public Health. People with severe mental illness have greater mortality risk than the general population, experience health care inequalities throughout life and represent a vulnerable, under-served and under-treated population, who have been overlooked in health inequality research to date. There is currently a dearth of evidence in relation to understanding the palliative care needs of people with severe mental illness and how future care delivery can be designed to both recognise and respond to those needs. This study aims to co-design an evidenced informed service model of integrated palliative care for persons living with a severe mental illness. Methods: This qualitative sequential study underpinned by interpretivism will have six phases. An expert reference group will be established in Phase 1, to inform all stages of this study. Phase 2 will include a systematic literature review to synthesise current evidence in relation to palliative care service provision for people with severe mental illness. In Phase 3, qualitative interviews will be undertaken with both, patients who have a severe mental illness and in receipt of palliative care (n = 13), and bereaved caregivers of people who have died 6–18 months previously with a diagnosis of severe mental illness (n = 13), across two recruitment sties in the United Kingdom. Focus groups (n = 4) with both mental health and palliative care multidisciplinary staff will be undertaken across the two recruitment sites in Phase 4. Phase 5 will involve the co-design of a service model of integrated palliative care for persons living with severe mental illness. Phase 6 will develop practice recommendations for this client cohort. Discussion: Palliative care needs to be available at all levels of care systems; it is estimated that, globally, only 14% of patients who need palliative care receive it. Reducing inequalities experienced by people with severe mental illness is embedded in the National Health Service Long Term Plan. Internationally, the gap between those with a mental illness needing care and those with access to care remains considerable. Future policy and practice will benefit from a better understanding of the needs of this client cohort and the development of a co-designed integrated care pathway to facilitate timely access to palliative care for people with a severe mental illness.

Winners and Losers in Palliative Care Service Delivery: Time for a Public Health Approach to Palliative and End of Life Care

Background: Consumer experience of palliative care has been inconsistently and selectively investigated. Methods: People in Western Australia who had experienced a life limiting illness in the past five years were recruited via social media and care organisations (2020) and invited to complete a cross sectional consumer survey on their experiences of the care they received. Results: 353 bereaved carers, current carers and patients responded. The winners, those who received the best quality end-of-life care, were those who were aware of palliative care as an end-of-life care (EOLC) option, qualified for admission to and were able to access a specialist palliative care program, and with mainly a cancer diagnosis. The losers, those who received end-of-life care that was adequate rather than best practice, were those who were unaware of palliative care as an EOLC option or did not qualify for or were unable to access specialist palliative care and had mainly a non-cancer diagnosis. Both groups were well supported throughout their illness by family and a wider social network. However, their family carers were not adequately supported by health services during caregiving and bereavement. Conclusions: A public health approach to palliative and end of life care is proposed to integrate tertiary, primary, and community services through active consumer engagement in the design and delivery of care. Therefore, suggested strategies may also have relevance in many other international settings.

End of Life Care in the Home: Supporting and Sustaining Family Carers

<p>Palliative care services within New Zealand aim to support care for terminally ill people and their family/ whānau, regardless of their disease or place of care. Increasingly consumers prefer that this care and support, including end of life care, is provided in their own home as opposed to hospital or care institutions and current health policies support this trend. The availability of family carers is widely acknowledged as pivotal to home palliation by ensuring physical care and emotional support for the patient is available outside that provided by formal (paid) carers and palliative care professionals entering the home. Literature searched found that family carers feel under prepared for their role and desire more support and information from health care professionals. How to achieve this is less clear. When considered against the backdrop of an ageing population and geographically dispersed families, it is forecast there will be increased incidence of dying patients with complex palliative care needs and a reduced carer population that may make the preference for home death increasingly problematic. Using purposive sampling techniques, six bereaved family carers, who were enrolled with a hospice palliative care service (HPCS) and had supported end of life care of a relative at home, were recruited. Utilising qualitative descriptive methodology this study sought to identify the key conditions under which their caring contribution was sustained. Data collection was by way of semi-structured interviews that were audiotaped and transcribed. Following coding, transcripts underwent qualitative content analysis and revealed three key themes and associated subthemes relating to: perception and acquisition of caring role; sustaining the role; now and looking back. Conclusions drawn from this research offer increased understanding of the enabling factors family carers experienced as supporting them in their role and achieving a home death for their relative.</p>

End of Life Care in the Home: Supporting and Sustaining Family Carers

<p>Palliative care services within New Zealand aim to support care for terminally ill people and their family/ whānau, regardless of their disease or place of care. Increasingly consumers prefer that this care and support, including end of life care, is provided in their own home as opposed to hospital or care institutions and current health policies support this trend. The availability of family carers is widely acknowledged as pivotal to home palliation by ensuring physical care and emotional support for the patient is available outside that provided by formal (paid) carers and palliative care professionals entering the home. Literature searched found that family carers feel under prepared for their role and desire more support and information from health care professionals. How to achieve this is less clear. When considered against the backdrop of an ageing population and geographically dispersed families, it is forecast there will be increased incidence of dying patients with complex palliative care needs and a reduced carer population that may make the preference for home death increasingly problematic. Using purposive sampling techniques, six bereaved family carers, who were enrolled with a hospice palliative care service (HPCS) and had supported end of life care of a relative at home, were recruited. Utilising qualitative descriptive methodology this study sought to identify the key conditions under which their caring contribution was sustained. Data collection was by way of semi-structured interviews that were audiotaped and transcribed. Following coding, transcripts underwent qualitative content analysis and revealed three key themes and associated subthemes relating to: perception and acquisition of caring role; sustaining the role; now and looking back. Conclusions drawn from this research offer increased understanding of the enabling factors family carers experienced as supporting them in their role and achieving a home death for their relative.</p>

Documentation of Assessment of Spiritual Concerns of Adult Advanced Cancer Patients: An Audit in a Hospital-based Specialist Palliative Care Service

Objectives: Spirituality is a significant dimension of quality palliative care service provision. The purpose of our audit was to assess current practice and improve documentation of spiritual concerns of adult advanced cancer patients in a specialist palliative care (SPC) service in a tertiary care cancer centre. Materials and Methods: In a standard-based audit, we measured the percentage of patient assessment forms with documentation of assessed spiritual concerns at a baseline and reaudit after practice change measures. We set the optimum standard that at least 60% of the case forms would have patients’ spiritual concerns recorded. We implemented the following measures – (1) engaging our palliative care staff in team discussions on existing practice and identifying problems and (2) conducting a structured 2 h training module for assessment and documentation of patients’ spiritual concerns. Results: About 70.8% and 93.4% of the patient assessment forms included had documentation of assessed spiritual concerns which is higher than the standard we set at 60% and 90% at baseline and after implementing practice change, respectively. In the reaudit, we found that documentation specific to spirituality and overall psychological assessment improved. We identified that a persisting problem was the lack of recording of spiritual assessment in the patients’ follow-up notes. Conclusion: We achieved the benchmark of a standard-based audit on documentation of assessed spiritual concerns of advanced cancer patients in our SPC service. Regular audits in clinical service delivery and documentation should be integrated into quality improvement measures in palliative care.