Lived experiences of end-of-life care at home in the UK: a scoping review of qualitative research.

Background Home is the preferred place of care and death for most people with advanced illness. Aim To examine and describe the published qualitative literature on the lived experiences of dying at home, to characterise the participants and their contexts and to identify key gaps, with a view to informing future research. Design and Setting A scoping literature review in accordance with the PRISMA-ScR guideline. Method The online databases CINAHL and MEDLINE were searched with relevant MeSH terms and keywords to identify primary qualitative research published between 2010 and 2022, exploring the lived experience of patients, families and/or unpaid carers in the United Kingdom. Results In total, 462 papers were screened, 58 underwent full text review and 13 studies were retained in the final set. All studies explored the experience of bereaved family and/or unpaid carers and only one study interviewed a dying person. Where specified, the majority of experiences related to deaths from cancer, many with specialist palliative care team involvement. Included papers yielded a breadth of diverse findings, with the most common subject themes relating to the availability and quality of care and support for families and carers. Conclusion There is limited published evidence exploring lived experiences of end-of-life care at home and this constrains the extent to which community services can be evidence-informed in their design and delivery. More research is needed to examine the first-hand experiences of people who are dying at home, particularly for those with non-cancer conditions and where specialist services are not involved.

Death from COVID-19: management of breathlessness: a retrospective multicentre study.

OBJECTIVES: Breathlessness is the most significant symptom in those dying of COVID-19. Historically, though, it has often been palliated poorly at end of life. The aim of this work was to assess whether breathlessness in patients dying from COVID-19 was being managed appropriately. METHODS: A multicentre, retrospective analysis of clinical data was undertaken. Patients who had died of COVID-19 across three acute hospitals over a 2-month period were included. Those already prescribed background opioids and those who died in intensive care were excluded. Data were collected from clinical notes, where available. RESULTS: 71 patients from 18 wards (3 hospitals) were included. The median total dose of opioid and midazolam given in the last 24 hours of life (continuous subcutaneous infusion ± 'as required' medication) was 33 mg (14-55) and 15 mg (6-26), respectively. 37 patients (52%) were prescribed continuous subcutaneous infusions. There were 426 recorded respiratory rates of at least 25 breaths per minute, for which an opioid or benzodiazepine was given in 113 (27%) of instances. CONCLUSIONS: Less than a third of episodes of breathlessness, as measured by respiratory rate, were palliated with anticipatory medicines. Specific palliative care guidelines for COVID-19 are necessary but may not always be followed.

Palliative care research promotion in policy and practice: a knowledge exchange process.

In palliative care, as in many areas of medicine, there is a considerable amount of research conducted that makes sound recommendations but does not result consistently in improved care. For instance, though palliative care has been shown to benefit all people with a life-threatening illness, its main reach continues to be for those with cancer. Drawing on relational models of research use, we set out to engage policy-makers, educators, clinicians, commissioners and service providers in a knowledge exchange process to identify implications of research for Scottish palliative care priorities. First, we mapped the existing palliative care research evidence in Scotland. We then organised evidence review meetings and a wider stakeholder event where research producers and users came together to coproduce implications of the evidence for policy, education and practice. We used questionnaires and key stakeholder feedback meetings to explore impacts of this process on research uptake and use immediately after the events and over time. In this paper, we reflect on this knowledge exchange process and the broader context in which it was set. We found that participation fostered relationships and led to a rich and enthusiastic exploration of research evidence from multiple perspectives. Potential impacts relating to earlier identification for palliative care, education and need-based commissioning ensued. We make suggestions to guide replication.

Antibiotic use towards the end of life: development of good practice recommendations.

OBJECTIVES: Development of evidence-based good practice recommendations for clinicians considering the use of antibiotics in patients towards the end of life. DESIGN: A multiprofessional group of experts in end-of-life care and antimicrobial stewardship was convened. Findings from a scoping review of the literature and a consultation of clinicians were triangulated. Expert discussion was used to generate consensus on how to approach decision-making. SETTING: Representatives from hospital and a range of community health and care settings. PARTICIPANTS: Medical, pharmacy and nursing professionals. MAIN OUTCOME MEASURES: Good practice recommendations based on published evidence and the experience of prescribers in Scotland. RESULTS: The findings of 88 uncontrolled, observational studies of variable quality were considered alongside a survey of over 200 prescribers. No national or international guidelines were identified. Antibiotic use towards the end of life was common but practice was highly variable. The potential harms associated with giving antibiotics tended to be less well considered than the potential benefits. Antibiotics often extended the length of time to death but this was sometimes at the cost of higher symptom burden. There was strong consensus around the importance of effective communication with patients and their families and making treatment decisions aligned to a patient's goals and priorities. CONCLUSIONS: Good practice recommendations were agreed with focus on three areas: making shared decisions about future care; agreeing clear goals and limits of therapy; reviewing all antibiotic prescribing decisions regularly. These will be disseminated widely to support optimal care for patients towards the end of life. A patient version of the recommendations has also been produced to support implementation.

Realistic Medicine: Changing culture and practice in the delivery of health and social care.

OBJECTIVE: Current models of health and social care services are stretched and do not always suit patients, their carers or the aspirations of the workforce. Realistic Medicine aims to improve patient care by ensuring that people receive appropriate, beneficial, evidence-based care aligned with their personal preferences. This paper builds on a keynote address delivered at ICCH 2018. METHODS: We explore the six core principles of Realistic Medicine: (i) building a personalised approach to patient care; (ii) changing style to shared decision-making; (iii) reducing harm and waste; (iv) tackling unwarranted variation in practice and outcomes; (v) managing risk better; (vi) becoming improvers and innovators in healthcare. RESULTS: Realistic Medicine is being embedded across Scotland, championed by local and national clinical leaders. There is particular focus on engaging patients around shared-decision making and improving value in healthcare. CONCLUSION: Realistic Medicine is the first example of these principles being articulated clearly and collectively as the essential components of a health and care system's national improvement strategy. It reflects the care that most professional staff wish to provide. PRACTICE IMPLICATIONS: To deliver Realistic Medicine, all health and social care professionals must be empowered to work together in teams, networks and in partnership with people.

Palliative and end-of-life care research in Scotland 2006-2015: a systematic scoping review.

BACKGROUND: The Scottish Government set out its 5-year vision to improve palliative care in its Strategic Framework for Action 2016-2021. This includes a commitment to strengthening research and evidence based knowledge exchange across Scotland. A comprehensive scoping review of Scottish palliative care research was considered an important first step. The aim of the review was to quantify and map palliative care research in Scotland over the ten-year period preceding the new strategy (2006-15). METHODS: A systematic scoping review was undertaken. Palliative care research involving at least one co-author from a Scottish institution was eligible for inclusion. Five databases were searched with relevant MeSH terms and keywords; additional papers authored by members of the Scottish Palliative and End of Life Care Research Forum were added. RESULTS: In total, 1919 papers were screened, 496 underwent full text review and 308 were retained in the final set. 73% were descriptive studies and 10% were interventions or feasibility studies. The top three areas of research focus were services and settings; experiences and/or needs; and physical symptoms. 58 papers were concerned with palliative care for people with conditions other than cancer - nearly one fifth of all papers published. Few studies focused on ehealth, health economics, out-of-hours and public health. Nearly half of all papers described unfunded research or did not acknowledge a funder (46%). CONCLUSIONS: There was a steady increase in Scottish palliative care research during the decade under review. Research output was strong compared with that reported in an earlier Scottish review (1990-2005) and a similar review of Irish palliative care research (2002-2012). A large amount of descriptive evidence exists on living and dying with chronic progressive illness in Scotland; intervention studies now need to be prioritised. Areas highlighted for future research include palliative interventions for people with non-malignant illness and multi-morbidity; physical and psychological symptom assessment and management; interventions to support carers; and bereavement support. Knowledge exchange activities are required to disseminate research findings to research users and a follow-up review to examine future research progress is recommended.

Subcutaneous magnesium in the advanced cancer setting.

Hypomagnesaemia can arise from a variety of causes but is particularly prevalent in cancer populations. This case report describes a patient with recurrent symptomatic hypomagnesaemia, on the background of advanced ovarian cancer and a high-output ileostomy, who was successfully managed on a daily continuous subcutaneous infusion of magnesium via a syringe pump. There is limited published information on the subcutaneous administration of magnesium and, to our knowledge, this is the first case to report its routine delivery over 24 hours in a syringe pump. This novel but effective approach for administering magnesium can be delivered in the community and can, therefore, prevent repeated hospital admissions for patients with recurrent symptomatic hypomagnesaemia who would otherwise need intravenous replacement.

Prospective assessment of a palliative care tool to predict one-year mortality in patients with acute coronary syndrome.

BACKGROUND: Identifying patients with acute coronary syndrome (ACS) who are approaching the end of life and who may not benefit from an aggressive interventional approach is important but clinically challenging. The Gold Standards Framework (GSF) prognostic guide was developed using multidimensional criteria to identify cancer patients who could benefit from end-of-life care. We assessed the utility of the GSF to predict one-year mortality in ACS patients. METHODS: ACS patients admitted between May 2012 and July 2013 at the three participating cardiac centres in Europe were enrolled. Patients were assessed during admission using the GSF, the Global Registry of Acute Coronary Events (GRACE) score, the age, creatinine, ejection fraction (ACEF) score and the New York Percutaneous Coronary Intervention (NY-PCI) risk score. The pre-specified primary outcome was all-cause mortality at one year; secondary outcomes were cardiovascular death, non-cardiovascular mortality, re-hospitalisation for ACS and re-hospitalisation for non-ACS causes. RESULTS: Six hundred and twenty-nine ACS patients were enrolled and one-year follow-up data was available for 626 patients. Fifty-two patients (8.3%) met GSF criteria for end-of-life care. These patients were older, predominantly female, had lower body mass index (BMI), and were less likely to receive angiography (75% vs 95%, p<0.001) and angioplasty (60% vs 77%, p=0.005) compared with patients who did not meet GSF criteria. Patients meeting GSF criteria had higher one-year all-cause mortality (42.3% vs 4.5%, p<0.001), cardiovascular mortality (15.4% vs 2.8%, p<0.001) and non-cardiovascular mortality (26.9% vs 1.7%; p<0.001). Multivariate analysis confirmed that meeting GSF criteria independently predicted all-cause mortality. CONCLUSION: GSF is a multidimensional tool which may be used to identify ACS patients that are at high risk of death and may benefit from end-of-life care.

Identifying acute coronary syndrome patients approaching end-of-life.

BACKGROUND: Acute coronary syndrome (ACS) is common in patients approaching the end-of-life (EoL), but these patients rarely receive palliative care. We compared the utility of a palliative care prognostic tool (Gold Standards Framework (GSF)) and the Global Registry of Acute Coronary Events (GRACE) score, to help identify patients approaching EoL. METHODS AND FINDINGS: 172 unselected consecutive patients with confirmed ACS admitted over an eight-week period were assessed using prognostic tools and followed up for 12 months. GSF criteria identified 40 (23%) patients suitable for EoL care while GRACE identified 32 (19%) patients with ≥ 10% risk of death within 6 months. Patients meeting GSF criteria were older (p = 0.006), had more comorbidities (1.6 ± 0.7 vs. 1.2 ± 0.9, p = 0.007), more frequent hospitalisations before (p = 0.001) and after (0.0001) their index admission, and were more likely to die during follow-up (GSF+ 20% vs GSF- 7%, p = 0.03). GRACE score was predictive of 12-month mortality (C-statistic 0.75) and this was improved by the addition of previous hospital admissions and previous history of stroke (C-statistic 0.88). CONCLUSIONS: This study has highlighted a potentially large number of ACS patients eligible for EoL care. GSF or GRACE could be used in the hospital setting to help identify these patients. GSF identifies ACS patients with more comorbidity and at increased risk of hospital readmission.