Children with trisomy 18 that survive beyond the neonatal period have multiple congenital anomalies, neurodevelopmental disability, and high mortality rates. The experience of children with trisomy 18 who receive pediatric palliative care services is largely unknown. We conducted a retrospective review of children with trisomy 18 receiving pediatric palliative care services at both Boston Children's Hospital, USA and Great Ormond Street Hospital, UK from January 1, 2004 to January 1, 2015. Fifty-eight children with trisomy 18 were referred to pediatric palliative care, 38 in the United Kingdom, 20 in the United States. Median age at referral was 19 days (2-89) in the United Kingdom, and 25 days (1-463) in the United States. Median length of time being followed by pediatric palliative care was 32 days (1-1,637) in the United Kingdom and 67 days (3-2,442) in the United States. The only significant difference in the two cohorts (p = .001) was in likelihood of receiving cardiac surgical intervention-37% in the United States, 0% the United Kingdom. Children with trisomy 18 receive pediatric palliative care services, with variable age at referral and for a variable length of time. Further research is needed to understand the experience of children with trisomy 18 and their families receiving pediatric palliative care services.
BACKGROUND: There is little consensus on how best to manage head and neck cancer with palliative intent. Predicting outcome is difficult and reported survival varies. The present study sought to delineate local practice and outcomes in patients treated with palliative intent.
METHODS: The clinical records of all head and neck cancer patients treated with palliative intent presenting between 2015 and 2016 to our multidisciplinary team were reviewed.
RESULTS: Eighty-four patients (21.5 per cent) were treated with palliative intent. All had squamous cell carcinoma. Mean survival time was 151 days (standard deviation = 121.1; range, 8-536 days). Of the patients, 83.3 per cent had a palliative care referral; 74.1 per cent had a hospice referral. Patients received a variety of interventions, and there was an associated complication in 8.2 per cent. The mean number of days spent in hospital for interventions was 11.9 days (standard deviation = 12.5; range, 0-41 days).
CONCLUSION: Different interventions are used to manage head and neck cancer patients with palliative intent, and these may be associated with significant morbidity. Survival time is variable, often several months; thus, any treatment must take into account morbidity in conjunction with the patient's wishes.
BACKGROUND: Dementia is a progressive neurodegenerative life-limiting disease. The international literature indicates that patients with advanced dementia can benefit from palliative care (PC) provided during the end-of-life phase. However, evidence indicates that currently many fail to access such provision despite the increased recognition of their palliative needs.
AIM: To investigate the factors influencing provision of PC services for people with advanced dementia.
METHODS: A systematic review of mixed method studies written in English was undertaken. 11 electronic databases including Embase, Medline, PubMed, CINAHL and Scopus from 2008 to 2018 were searched. Narrative synthesis and content analysis were used to analyse and synthesise the data.
KEY FINDINGS: In total, 34 studies were included. 25 studies providing qualitative data, 6 providing quantitative data and 3 mixed methods studies. The findings identified organisational, healthcare professionals and patients-related barriers and facilitators in provision of PC for people with advanced dementia from perspective of stakeholders across different care settings. The most commonly reported barriers are lack of skills and training opportunities of the staff specific to PC in dementia, lack of awareness that dementia is a terminal illness and a palliative condition, pain and symptoms assessment/management difficulties, discontinuity of care for patients with dementia and lack of coordination across care settings, difficulty communicating with the patient and the lack of advance care planning.
CONCLUSIONS: Even though the provision of PC was empirically recognised as a care step in the management of dementia, there are barriers that hinder access of patients with dementia to appropriate facilities. With dementia prevalence rising and no cure on the horizon, it is crucial that health and social care regulatory bodies integrate a palliative approach into their care using the identified facilitators to achieve optimal and effective PC in this population.
OBJECTIVES: Mechanical ventilation (MV) has been shown to improve survival and quality of life in motor neuron disease (MND). However, during the progression of MND, there may come a point when MV is no longer felt appropriate. Association of Palliative Medicine Guidelines have been recently published to help clinicians withdraw MV at the request of patients with MND in a safe and compassionate manner to ensure that symptoms of distress and dyspnoea are minimised.
METHODS: In this report, we discuss the palliative and ventilatory management of six ventilator-dependent patients with MND who had requested the withdrawal of MV as part of their end-of-life care.
RESULTS: We have withdrawn MV from six patients with MND at their request and our practice has been influenced by the Association of Palliative Medicine Guidelines.
CONCLUSION: Withdrawal of MV in MND at a patient's request is challenging but is also a fundamental responsibility of healthcare teams. We discuss the lessons we have learnt which will influence our practice and help other teams in the future.
Dysphagia in people with advanced oesophageal cancer can be treated by oesophageal stents, external beam radiotherapy (EBRT) and intraluminal brachytherapy. Despite guidelines recommending brachytherapy for patients with a predicted life expectancy exceeding 3 months, its uptake in the UK has been limited. Here we examine the strength of the evidence supporting the use of brachytherapy compared with oesophageal stents and EBRT and possible reasons for its limited uptake. Trials and observational studies suggest brachytherapy alone confers a benefit to patients, but its impact is less immediate than oesophageal stents; the evidence on effectiveness and value-for-money is limited. Moreover, stronger evidence will probably be insufficient to increase uptake, due to the extra complexity of delivery compared with stents and EBRT and a lack of experience among specialists.
PURPOSE OF REVIEW: People with cancer commonly experience persistent pain and psychological distress. Interventions are needed which address the multifactorial nature of pain and depression, yet few studies have examined the impact of mindfulness-based interventions (MBIs) for cancer-related pain and depression.
RECENT FINDINGS: MBIs for cancer-related pain and depression can be effectively delivered across a range of modalities and show promise for alleviating mood and some physical health symptoms, although not always pain. There is some evidence for the cost-effectiveness of MBIs.
SUMMARY: The field of MBIs would benefit from greater methodological rigour and investigation into a broader range of cancer populations to increase the knowledge base and in turn the evidence base on which interventions can be developed to the benefit to patients with cancer-related pain and depression.
Little literature examines the cognitive journey taken by parents considering/receiving hospice care for their child. A constructivist grounded theory study explored 38 parents' views of considering/using a children's hospice. Data analysed from focus groups and interviews identified three main concepts. The focus of this paper is identified as Coming ‘Home’. This concept depicts the desire and the sense of searching that parents experienced in trying to find a place, other than their actual home, where their child could access a caring environment and their parents received some respite from caregiving. Despite there being a paradox associated with hospice-based respite, once they had crossed the threshold the parents bonded with the place and experienced rootedness and familiarity. The hospice became a place of living and belonging; a place where they could ‘come home’.
BACKGROUND: Following organ donation, bodies of children are generally cared for in hospital mortuaries or by funeral directors, and their families are offered little routine bereavement support. A partnership between an organ donation nursing team and regional children's hospice trialled an initiative where families were offered bereavement support from the hospice, and their child's body was cared for in a 'cool room' after death. Hospice services are usually restricted to children with life-limiting conditions, and their families.
OBJECTIVE: To explore the perceptions and experience of nursing staff who are involved in supporting families of children and young people who have been cared for in children's hospice cool rooms after death, following organ donation.
DESIGN: A qualitative exploratory study consisting of a focus group interview with registered nurses from the children's hospice and organ donation teams.
METHOD: A purposeful sample of nurses was recruited. Data were collected in a digitally-recorded focus group interview during March 2018. The interview was transcribed and analysed using a qualitative content approach.
RESULTS: Six nurses participated in the focus group. Analysis revealed five themes that characterised the perceptions of nurses: (i) barriers to care, (ii) bereavement care for families, (iii) impact on families and staff, (iv) influencers and enablers of change, and (v) sustainability of new practices.
CONCLUSION: Nurses perceived the long-term, responsive and family-centred approach to bereavement support as a strength of the hospice model, reducing the experience of moral distress in organ donation nurses.
The Royal College of Physicians is to remove its opposition to assisted dying and adopt a neutral stance on the issue after announcing the results of a poll of its members.
Of the 6885 doctors who responded to the poll (20% of the RCP’s members and fellows), 43% thought that the college should be opposed to changing the law on assisted dying. This was similar to the 44% when RCP members were last polled in 2014.
But the proportion of respondents wanting the RCP to support a change in the law increased to 32% in 2019, from 25% in 2014. A quarter of respondents (25%) in the latest poll thought that the RCP should be neutral, down from 31% in 2014.
BACKGROUND: Palliative care in the UK has become more medicalised over the last 50 years, and it was recognised as a medical speciality in 2004. However, out of financial expediency, an inpatient hospice in North Wales has become nurse-led.
AIMS: This article considers the history of care of the dying and discusses how nurses are best placed to be masters of care of the dying.
METHODS: The model of nurse-led care is described in terms of how this innovation in practice has developed, allowing the advanced nurse practitioner role to be extended to an autonomous level of hospice care not practised anywhere else in the UK.
CONCLUSION: The innovation of nurse-led hospice care has secured the future of the hospice, making it fiscally robust and ensuring a sustainable service for the community that it serves.
BACKGROUND: Existing quantitative evidence suggests that at a population level, socioeconomic factors affect access to preferred place of death. However, the influence of individual and contextual socioeconomic factors on preferred place of death are less well understood.
AIM: To systematically synthesise the existing qualitative evidence for socioeconomic factors affecting access to preferred place of death in the United Kingdom.
DESIGN: A thematic synthesis of qualitative research.
DATA SOURCES:: Cochrane Library, MEDLINE, Embase, CINAHL, ASSIA, Scopus and PsycINFO databases were searched from inception to May 2018.
RESULTS: A total of 13 articles, reporting on 12 studies, were included in the synthesis. Two overarching themes were identified: 'Human factors' representing support networks, interactions between people and decision-making and 'Environmental factors', which included issues around locations and resources. Few studies directly referenced socioeconomic deprivation. The main factor affecting access to preferred place of death was social support; people with fewer informal carers were less likely to die in their preferred location. Other key findings included fluidity around the concept of home and variability in preferred place of death itself, particularly in response to crises.
CONCLUSION: There is limited UK-based qualitative research on socioeconomic factors affecting preferred place of death. Further qualitative research is needed to explore the barriers and facilitators of access to preferred place of death in socioeconomically deprived UK communities. In practice, there needs to be more widespread discussion and documentation of preferred place of death while also recognising these preferences may change as death nears or in times of crisis.
OBJECTIVES: Delirium is common in palliative care settings. Management includes detection, treatment of cause(s), non-pharmacological interventions and family support; strategies which are supported with varying levels of evidence. Emerging evidence suggests that antipsychotic use should be minimised in managing mild to moderate severity delirium, but the integration of this evidence into clinical practice is unknown.
METHODS: A 21-question online anonymous survey was emailed to Association for Palliative Medicine members in current clinical practice (n=859), asking about delirium assessment, management and research priorities.
RESULTS: Response rate was 39%: 70% of respondents were palliative medicine consultants. Delirium guidelines were used by some: 42% used local guidelines but 38% used none. On inpatient admission, 59% never use a delirium screening tool. Respondents would use non-pharmacological interventions to manage delirium, either alone (39%) or with an antipsychotic (58%). Most respondents (91%) would prescribe an antipsychotic and 6% a benzodiazepine, for distressing hallucinations unresponsive to non-pharmacological measures. Inpatient (57%) and community teams (60%) do not formally support family carers. Research priorities were delirium prevention, management and prediction of reversibility.
CONCLUSION: This survey of UK and Irish Palliative Medicine specialists shows that delirium screening at inpatient admission is suboptimal. Most specialists continue to use antipsychotics in combination with non-pharmacological interventions to manage delirium. More support for family carers should be routinely provided by clinical teams. Further rigorously designed clinical trials are urgently needed in view of management variability, emerging evidence and perceived priorities for research.
Purpose: Patients with haematological malignancies are more likely to die in hospital, and less likely to access palliative care than people with other cancers, though the reasons for this are not well understood. The purpose of our study was to explore haematology nurses' perspectives of their patients’ places of care and death.
Method: Qualitative description, based on thematic content analysis. Eight haematology nurses working in secondary and tertiary hospital settings were purposively selected and interviewed. Transcriptions were coded and analysed for themes using a mainly inductive, cross-comparative approach.
Results: Five inter-related factors were identified as contributing to the likelihood of patients’ receiving end of life care/dying in hospital: the complex nature of haematological diseases and their treatment; close clinician-patient bonds; delays to end of life discussions; lack of integration between haematology and palliative care services; and barriers to death at home.
Conclusions: Hospital death is often determined by the characteristics of the cancer and type of treatment. Prognostication is complex across subtypes and hospital death perceived as unavoidable, and sometimes the preferred option. Earlier, frank conversations that focus on realistic outcomes, closer integration of palliative care and haematology services, better communication across the secondary/primary care interface, and an increase in out-of-hours nursing support could improve end of life care and facilitate death at home or in hospice, when preferred.
Being able to communicate effectively is an essential skill for all nurses. Communication in paediatric end of life care can be challenging for both the student and lecturer as it is a rare experience and challenging to teach. Innovative approaches to teaching communication skills such as role play, simulation and drama have been used; however there is a dearth of literature examining the use of drama in this specialist context. The aim of this study was to explore the effectiveness of a novel workshop in teaching transferable knowledge and skills in palliative, end of life and bereavement care communication to a convenience sample of first year pre-registration nursing students undertaking clinical skills training at a UK university. Qualitative and quantitative data were obtained from pre and post intervention questionnaires exploring student's perception of communication skills. Qualitative data were analysed thematically and quantitative data presented as standard descriptive statistics. The novel communication workshop facilitated students' exploration of how good and poor communication looks and feels and introduced aids to inform communication in clinical practice. Exposure to different learning approaches provided opportunities to both gain confidence in engaging in new learning activities and develop knowledge and skills through purposeful engagement.
The BMA has never asked its entire membership of 158 000 UK doctors for their views on physician assisted dying. Although this might sound counterintuitive, such nuanced, complex, and potentially divisive ethical issues do not lend themselves to decision making through direct polling or surveys. Instead, we have clearly defined and longstanding deliberative and democratic processes through which we typically make policy.
[Début de l'article]
OBJECTIVE: Engaging bereaved parents in the review process that examines their care before and after a perinatal death might help parents deal with their grief more effectively and drive improvements in patient safety. The objective of this study is to explore whether healthcare professionals would accept or support parent engagement in the perinatal mortality review process.
DESIGN: Qualitative focus group interviews. Transcripts were analysed with an inductive thematic approach.
SETTING: Two geographically distinct tertiary maternity hospitals in the UK.
PARTICIPANTS: Five focus groups were conducted with clinical staff including midwives, obstetricians, neonatologists, nursing staff and chaplaincy services.
RESULTS: Twenty-seven healthcare professionals unanimously agreed that parents' involvement in the perinatal mortality review process is useful and necessary. Six key themes emerged including: parental engagement; need for formal follow-up; critical structure of perinatal mortality review meeting; coordination and streamlining of care; advocacy for parents including role of the bereavement care lead; and requirement for training and support for staff to enable parental engagement.
CONCLUSIONS: Healthcare professionals strongly advocated engaging bereaved parents in the perinatal mortality review: empowering parents to ask questions, providing feedback on care, helping generate lessons and providing them with the opportunity to discuss a summary of the review conclusions with their primary healthcare professional contact. The participants agreed it is time to move on from 'a group of doctors reviewing notes' to active learning and improvement together with parents, to enable better care and prevention of perinatal death.
The debate around assisted dying in the UK shows that patients are not offered enough choice in how illness at the end of life is managed. Yes, for many patients, end of life care is good, but for some it is not how they would choose to end their days.
Assisted dying would let terminally ill people access drugs to end their own lives, under strict conditions. The Suicide Act, which prohibits assisted dying, has been in place since 1961—there is a need now for fresh, informed debate. This is why I welcome the decision by the Royal College of Physicians of London (RCP) to survey its members on assisted dying.4
At present, it is the perceived rigid opposition of doctors that blocks any serious review of the law. Parliamentarians have used the opposition of the BMA and medical royal colleges to justify rejecting legislative change.
[Début de l'article]
BACKGROUND: It is not known which attributes of care are valued the most by those who experience hospice services. Such knowledge is integral to service development as it facilitates opportunities for continuous improvement of hospice care provision. The objectives of this mixed-studies systematic review were to explore patients' and their family carer views and experiences, to determine what they valued about adult hospice care in the UK.
METHODS: ASSIA, PubMed, CINAHL and PsycINFO were searched from inception, up until March 2017 to identify qualitative, quantitative, and mixed-methods studies. Four additional searching techniques supplemented the main search and grey literature was included. A three-stage mixed-method systematic review was conducted with a sequential exploratory design. Thematic synthesis was used with qualitative data, followed by a narrative summary of the quantitative data. The qualitative and quantitative syntheses were then juxtaposed within a matrix to produce an overarching synthesis.
RESULTS: Thirty-four studies highlighted that what patients and carers valued was generally context specific and stemmed from an amalgamation of hospice service components, which both individually and collectively contributed to improvements in quality of life. When the syntheses of qualitative and quantitative studies were viewed in isolation, the value placed on services remained relatively consistent, with some discrepancies evident in service availability. These were commonly associated with geographical variations, as well as differences in service models and timeframes. Through an overarching synthesis of the qualitative and quantitative evidence, however, notable variations and a more nuanced account of what people valued and why were more prominent, specifically in relation to a lack of social support for carers, disparate access to essential services, the underrepresentation of patients with a non-cancer diagnosis, and the dissatisfaction with the range of services provided.
CONCLUSION: Review findings strengthen the existing evidence base and illuminates the underpinning elements of hospice care most valued by patients and their families. With large disparities in the availability of services, however, the underrepresentation of patients with non-malignant diseases and the limited evidence base demonstrating the adequate addressment of the social needs of carers, there continues to be considerable gaps that warrants further research.
A terminally ill man with motor neurone disease has urged MPs to change the law to allow assisted dying in the UK in an open letter sent on the day of his assisted death in Switzerland, in which he recounted the distress caused to him and his family during a police investigation.
Geoffrey Whaley, 80, was given a diagnosis of motor neurone disease in 2016. With no legal option of assisted dying in the UK, he decided to travel to Dignitas in Switzerland to end his life.
[Début de l'article]
BACKGROUND: Almost 50,000 children and young people are affected by life-limiting conditions in the United Kingdom, around a third of which use children's hospices. Anecdotal evidence suggests that cannabinoid-based medicines (CBMs), specifically cannabis oil (CO), are being used by families with increasing frequency to manage distressing symptoms. The use of most nonprescription CBMs in the United Kingdom remains illegal.
OBJECTIVE: The objective of the study was to identify the prevalence of CO use by families who use children's hospices in the United Kingdom, and the approaches taken by those services to manage it.
DESIGN: An electronic survey was sent to each of the 54 children's hospices in the United Kingdom between May and July 2018, comprising 10 questions.
RESULTS: Forty children's hospices from across the four countries of the United Kingdom responded to the survey, representing 74% of British children's hospices. About 87.5% of hospices knew of children who use CO therapeutically. Sixty-nine percent of those hospices have received requests to administer CO during an episode of care. Approaches by organizations around CO management varied across the sectors, including arrangements for storage, administration, and recording of its use. Hospices highlighted how the lack of available guidance made decision making more challenging. Only a third of responding organizations routinely questioned families about the use of cannabis when prescribing medicines.
CONCLUSION: CO is used extensively by children who use children's hospices. Despite recognizing the use of CO, many hospices are unable to support it. There is a need for clear guidelines on how hospices should approach the care needs of children, allowing hospices to meet the needs of children who use CO, and families in a safe, consistent, and relevant way, safeguarding all children, families, and professionals within the organization.