OBJECTIVES: To explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences.
DESIGN: Qualitative study using interviews and focus groups.
SETTING: Health and Social Care Services in the North of England.
PARTICIPANTS: 71 participants, 62 health and social care professionals, 9 patients and family members.
RESULTS: Four key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well-paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system.
CONCLUSIONS: EPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.
BACKGROUND: Patient access to medicines at home during the last year of life is critical for symptom control, but is thought to be problematic. Little is known about healthcare professionals' practices in supporting timely medicines access and what influences their effectiveness. The purpose of the study was to evaluate health professionals' medicines access practices, perceived effectiveness and influencing factors.
METHODS: On-line questionnaire survey of health care professionals (General Practitioners, Community Pharmacists, community-based Clinical Nurse Specialists and Community Nurses) delivering end-of-life care in primary and community care settings in England. Quantitative data were analysed using descriptive statistics.
RESULTS: One thousand three hundred twenty-seven responses were received. All health professional groups are engaged in supporting access to prescriptions, using a number of different methods. GPs remain a predominant route for patients to access new prescriptions in working hours. However, nurses and, increasingly, primary care-based pharmacists are also actively contributing. However, only 42% (160) of Clinical Nurse Specialists and 27% (27) of Community Nurses were trained as prescribers. The majority (58% 142) of prescribing nurses and pharmacists did not have access to an electronic prescribing system. Satisfaction with access to shared patient records to facilitate medicines access was low: 39% (507) were either Not At All or only Slightly satisfied. Out-of-hours specialist cover was reported by less than half (49%; 656) and many General Practitioners and pharmacists lacked confidence advising about out-of-hours services. Respondents perceived there would be a significant improvement in pain control if access to medicines was greater. Those with shared records access reported significantly lower pain estimates for their caseload patients.
CONCLUSIONS: Action is required to support a greater number of nurses and pharmacists to prescribe end-of-life medicines. Solutions are also required to enable shared access to patient records across health professional groups. Coverage and awareness of out-of-hours services to access medicines needs to be improved.
Objectives: National guidance recommends equality in access to bereavement services; despite this, awareness and availability appears inconsistent. The aim of this study was to explore availability and accessibility of bereavement services across the North-East of England and to highlight issues potentially applicable across the UK, at a time of unprecedented need due to the impact of COVID-19.
Methods: Phase 1: an eight item, web-based survey was produced. A survey link was cascaded to all GP practices (General Practitioners) in the region. Phase 2: an email was sent to all services identified in phase 1, requesting details such as referral criteria and waiting times.
Results: All 392 GP practices in the region were invited to participate. The response rate was 22% (85/392). Twenty-one per cent (18/85) of respondents reported that they do not refer patients, comments included ‘not aware of any services locally’. A total of 36 services were contacted with 72% responding with further information. Most bereavement specific support was reliant on charity-funded services including hospices, this sometimes required a pre-existing link with the hospice. Waiting times were up to 4 months.
Conclusions: Although multiple different, usually charity-funded services were identified, awareness and accessibility were variable. This survey was conducted prior to the COVID-19 pandemic, where complex situations surrounding death is likely to impact on the usual grieving process and increase the need for bereavement support. Meanwhile, charities providing this support are under severe financial strain. There is an urgent need to bridge the gap between need and access to bereavement services.
Objectives: To develop a staff training intervention for agitation in people with severe dementia, reaching end-of-life, residing in nursing homes (NHs), test feasibility, acceptability, and whether a trial is warranted.
Design: Feasibility study with pre- and post-intervention data collection, qualitative interviews, and focus groups.
Setting: Three NHs in South East England with dementia units, diverse in terms of size, ownership status, and location.
Participants: Residents with a dementia diagnosis or scoring =2 on the Noticeable Problems Checklist, rated as “severe” on Clinical Dementia Rating Scale, family carers, and staff (healthcare assistants and nurses).
Intervention: Manualized training, delivered by nonclinical psychology graduates focusing on agitation in severe dementia, underpinned by a palliative care framework.
Measurements: Main outcomes were feasibility of recruitment, data collection, follow-up, and intervention acceptability. We collected resident, family carer, and staff demographics. Staff provided data on resident’s agitation, pain, quality of life, and service receipt. Staff reported their sense of competence in dementia care. Family carers reported on satisfaction with end-of-life care. In qualitative interviews, we explored staff and family carers’ views on the intervention.
Results: The target three NHs participated: 28 (49%) residents, 53 (74%) staff, and 11 (85%) family carers who were eligible to participate consented. Eight-four percent of staff attended =3 sessions, and we achieved 93% follow-up. We were able to complete quantitative interviews. Staff and family carers reported the intervention and delivery were acceptable and helpful.
Conclusions: The intervention was feasible and acceptable indicating a larger trial for effectiveness may be warranted.
OBJECTIVES: To report on direct experiences from advanced head and neck cancer patients, family carers and healthcare professionals, and the barriers to integrating specialist palliative care.
METHODS: Using a naturalistic, interpretative approach, within Northwest England, a purposive sample of adult head and neck cancer patients was selected. Their family carers were invited to participate. Healthcare professionals (representing head and neck surgery and specialist nursing; oncology; specialist palliative care; general practice and community nursing) were recruited. All participants underwent face-to-face or telephone interviews. A thematic approach, using a modified version of Colazzi's framework, was used to analyze the data.
RESULTS: Seventeen interviews were conducted (9 patients, 4 joint with family carers and 8 healthcare professionals). Two main barriers were identified by healthcare professionals: "lack of consensus about timing of Specialist Palliative Care engagement" and "high stake decisions with uncertainty about treatment outcome." The main barrier identified by patients and family carers was "lack of preparedness when transitioning from curable to incurable disease." There were 2 overlapping themes from both groups: "uncertainty about meeting psychological needs" and "misconceptions of palliative care."
CONCLUSIONS: Head and neck cancer has a less predictable disease trajectory, where complex decisions are made and treatment outcomes are less certain. Specific focus is needed to define the optimal way to initiate Specialist Palliative Care referrals which may differ from those used for the wider cancer population. Clearer ways to effectively communicate goals of care are required potentially involving collaboration between Specialist Palliative Care and the wider head and neck cancer team.
CONTEXT: Certain treatments are potentially inappropriate when administered to nursing homes residents at the end of life and should be carefully considered. An international comparison of potentially inappropriate treatments allows insight into common issues and country-specific challenges of end-of-life care in nursing homes and helps direct health care policy in this area.
OBJECTIVES: To estimate the prevalence of potentially inappropriate treatments in the last week of life in nursing home residents, and analyze the differences in prevalence between countries.
METHODS: A cross-sectional study of deceased residents in nursing homes (2015) in six European countries: Belgium (Flanders), England, Finland, Italy, the Netherlands and Poland. Potentially inappropriate treatments included: enteral administration of nutrition, parental administration of nutrition, artificial fluids, resuscitation, artificial ventilation, blood transfusion, chemotherapy/radiotherapy, dialysis, surgery, antibiotics, statins, antidiabetics, new oral anticoagulants. Nurses were questioned about whether these treatments were administered in the last week of life.
RESULTS: We included 1,384 deceased residents from 322 nursing homes. In most countries, potentially inappropriate treatments were rarely used, with a maximum of 18.3% of residents receiving at least one treatment in Poland. Exceptions were antibiotics in all countries (between 11.3% in Belgium and 45% in Poland), artificial nutrition and hydration in Poland (54.3%) and Italy (41%) and antidiabetics in Poland (19.7%).
CONCLUSION: Although the prevalence of potentially inappropriate treatments in the last week of life was generally low, antibiotics were frequently prescribed in all countries. In Poland and Italy, the prevalence of artificial administration of food/fluids in the last week of life was high, possibly reflecting country differences in legislation, care organization and culture, and the palliative care competences of staff.
BACKGROUND: GPs have a central role in decisions about prescribing anticipatory medications to help control symptoms at the end of life. Little is known about GPs' decision-making processes in prescribing anticipatory medications, how they discuss this with patients and families, or the subsequent use of prescribed drugs.
AIM: To explore GPs' decision-making processes in the prescribing and use of anticipatory medications for patients at the end of life.
DESIGN AND SETTING: A qualitative interview study with GPs working in one English county.
METHOD: Semi-structured interviews were conducted with a purposive sample of 13 GPs. Interview transcripts were analysed inductively using thematic analysis.
RESULTS: Three themes were constructed from the data: something we can do, getting the timing right, and delegating care while retaining responsibility. Anticipatory medications were a tangible intervention GPs felt they could offer patients approaching death (something we can do). The prescribing of anticipatory medications was recognised as a harbinger of death for patients and their families. Nevertheless, GPs preferred to discuss and prescribe anticipatory medications weeks before death was expected whenever possible (getting the timing right). After prescribing medications, GPs relied on nurses to assess when to administer drugs and keep them updated about their use (delegating care while retaining responsibility).
CONCLUSION: GPs view anticipatory medications as key to symptom management for patients at the end of life. The drugs are often presented as a clinical recommendation to ensure patients and families accept the prescription. GPs need regular access to nurses and rely on their skills to administer drugs appropriately. Patients' and families' experiences of anticipatory medications, and their preferences for involvement in decision making, warrant urgent investigation.
Aim: This study aims to explore the experiences of bereavement after stillbirth of Pakistani, Bangladeshi and White British mothers in a town with multi-ethnic populations in England.
Participants: A purposive sample of Pakistani, Bangladeshi and White British mothers aged over 16 (at time of infant birth), who suffered a stillbirth in the preceding 6–24 months and residing in a specified postcode area were invited to take part in the study, by an identified gatekeeper (audit midwife) from the local National Health Service Trust, in addition to local bereavement charities.
Design: Qualitative methods using face-to-face semi-structured interviews were undertaken, recorded and transcribed verbatim. Using framework analysis, several themes were identified.
Findings: There were three main themes identified from the data; 1. knowledge and information of pregnancy and perinatal mortality; 2. attitudes and perceptions to pregnancy and perinatal mortality and 3. experiences with maternity care. The findings revealed mostly similarities in the bereavement experiences of the Pakistani, Bangladeshi and White British mothers. A few cultural and religious differences were identified.
Conclusions: This study found important similarities in bereavement experiences of Pakistani, Bangladeshi and White British mothers and highlights considerations for policy makers and maternity services in how the timing of bereavement after care is provided, including advice surrounding the infant post-mortem. 209
Background: COVID-19 has directly and indirectly caused high mortality worldwide.
Aim: To explore patterns of mortality during the COVID-19 pandemic and implications for palliative care, service planning and research.
Design: Descriptive analysis and population-based modelling of routine data.
Participants and setting: All deaths registered in England and Wales between 7 March and 15 May 2020. We described the following mortality categories by age, gender and place of death: (1) baseline deaths (deaths that would typically occur in a given period); (2) COVID-19 deaths and (3) additional deaths not directly attributed to COVID-19. We estimated the proportion of people who died from COVID-19 who might have been in their last year of life in the absence of the pandemic using simple modelling with explicit assumptions.
Results: During the first 10 weeks of the pandemic, there were 101,614 baseline deaths, 41,105 COVID-19 deaths and 14,520 additional deaths. Deaths in care homes increased by 220%, while home and hospital deaths increased by 77% and 90%, respectively. Hospice deaths fell by 20%. Additional deaths were among older people (86% aged >= 75 years), and most occurred in care homes (56%) and at home (43%). We estimate that 22% (13%–31%) of COVID-19 deaths occurred among people who might have been in their last year of life in the absence of the pandemic.
Conclusion: The COVID-19 pandemic has led to a surge in palliative care needs. Health and social care systems must ensure availability of palliative care to support people with severe COVID-19, particularly in care homes.
Background: Palliative Care Day Services (PCDS) offer supportive care to people with advanced, progressive illness who may be approaching the end of life. Despite the growth of PCDS in recent years, evidence of their costs and effects is scarce. It is important to establish the value of such services so that health and care decision-makers can make evidence-based resource allocation decisions. This study examines and estimates the costs and effects of PCDS with different service configurations in three centres across the UK in England, Scotland and Northern Ireland.
Methods: People who had been referred to PCDS were recruited between June 2017 and September 2018. A pragmatic before-and-after descriptive cohort study design analysed data on costs and outcomes. Data on costs were collected on health and care use in the 4 weeks preceding PCDS attendance using adapted versions of the Client Service Receipt Inventory (CSRI). Outcomes, cost per attendee/day and volunteer contribution to PCDS were also estimated. Outcomes included quality of life (MQOL-E), health status (EQ-5D-5L) and capability wellbeing (ICECAP-SCM).
Results: Thirty-eight attendees were recruited and provided data at baseline and 4 weeks (centre 1: n = 8; centre 2: n = 8, centre 3: n = 22). The cost per attendee/day ranged from £121–£190 (excluding volunteer contribution) to £172–£264 (including volunteer contribution) across the three sites. Volunteering constituted between 28 and 38% of the total cost of PCDS provision. There was no significant mean change at 4 week follow-up from baseline for health and care costs (centre 1: £570, centre 2: -£1127, centre 3: £65), or outcomes: MQOL-E (centre 1: - 0.48, centre 2: 0.01, centre 3: 0.24); EQ-5D-5L (centre 1: 0.05, centre 2: 0.03, centre 3: - 0.03) and ICECAP-SCM (centre 1:0.00, centre 2: - 0.01, centre 3: 0.03). Centre costs variation is almost double per attendee when attendance rates are held constant in scenario analysis.
Conclusions: This study highlights the contribution made by volunteers to PCDS provision. There is insufficient evidence on whether outcomes improved, or costs were reduced, in the three different service configurations for PCDS. We suggest how future research may overcome some of the challenges we encountered, to better address questions of cost-effectiveness in PCDS.
OBJECTIVES: The issue of polypharmacy and medication use in people with life limiting illness raises important questions from a clinical and ethical viewpoint. The objectives of our study were to (1) explore medication use among people with life limiting illness receiving hospice care; (2) apply consensus criteria to assess medication appropriateness; and (3) determine the overall pill burden in this patient population.
METHODS: Six hospices in the North East of England were included. All deceased adult patients who received hospice care in 2018 were eligible for study inclusion. Descriptive statistics were used to report medication details; while medication appropriateness was assessed according to consensus criteria developed by Morin and colleagues.
RESULTS: Six hundred and ninety patients were included in the study. Patients were using a mean number of 8.8 medications per day, while polypharmacy was evident in 80% of patients. In terms of potentially questionable medication, patients were prescribed a mean number of 1.3 per day. Common potentially questionable medications included vitamin and mineral supplements, antihypertensives, antiplatelets, lipid regulating agents and anticoagulants. The pill burden in this population was also high with, on average, people using 13.7 oral doses per day.
CONCLUSIONS: Polypharmacy is common in patients accessing hospice care, as is the use of potentially questionable medication. The pill burden in this patient population is also high, which may be an additional treatment burden to patients. Holistic deprescribing approaches for this population should be developed and implemented.
Background: Since a national lockdown was introduced across the UK in March, 2020, in response to the COVID-19 pandemic, cancer screening has been suspended, routine diagnostic work deferred, and only urgent symptomatic cases prioritised for diagnostic intervention. In this study, we estimated the impact of delays in diagnosis on cancer survival outcomes in four major tumour types.
Methods: In this national population-based modelling study, we used linked English National Health Service (NHS) cancer registration and hospital administrative datasets for patients aged 15–84 years, diagnosed with breast, colorectal, and oesophageal cancer between Jan 1, 2010, and Dec 31, 2010, with follow-up data until Dec 31, 2014, and diagnosed with lung cancer between Jan 1, 2012, and Dec 31, 2012, with follow-up data until Dec 31, 2015. We use a routes-to-diagnosis framework to estimate the impact of diagnostic delays over a 12-month period from the commencement of physical distancing measures, on March 16, 2020, up to 1, 3, and 5 years after diagnosis. To model the subsequent impact of diagnostic delays on survival, we reallocated patients who were on screening and routine referral pathways to urgent and emergency pathways that are associated with more advanced stage of disease at diagnosis. We considered three reallocation scenarios representing the best to worst case scenarios and reflect actual changes in the diagnostic pathway being seen in the NHS, as of March 16, 2020, and estimated the impact on net survival at 1, 3, and 5 years after diagnosis to calculate the additional deaths that can be attributed to cancer, and the total years of life lost (YLLs) compared with pre-pandemic data.
Findings: We collected data for 32 583 patients with breast cancer, 24 975 with colorectal cancer, 6744 with oesophageal cancer, and 29 305 with lung cancer. Across the three different scenarios, compared with pre-pandemic figures, we estimate a 7·9–9·6% increase in the number of deaths due to breast cancer up to year 5 after diagnosis, corresponding to between 281 (95% CI 266–295) and 344 (329–358) additional deaths. For colorectal cancer, we estimate 1445 (1392–1591) to 1563 (1534–1592) additional deaths, a 15·3–16·6% increase; for lung cancer, 1235 (1220–1254) to 1372 (1343–1401) additional deaths, a 4·8–5·3% increase; and for oesophageal cancer, 330 (324–335) to 342 (336–348) additional deaths, 5·8–6·0% increase up to 5 years after diagnosis. For these four tumour types, these data correspond with 3291–3621 additional deaths across the scenarios within 5 years. The total additional YLLs across these cancers is estimated to be 59 204–63 229 years.
Interpretation: Substantial increases in the number of avoidable cancer deaths in England are to be expected as a result of diagnostic delays due to the COVID-19 pandemic in the UK. Urgent policy interventions are necessary, particularly the need to manage the backlog within routine diagnostic services to mitigate the expected impact of the COVID-19 pandemic on patients with cancer.
OBJECTIVES: A vital component of the coronavirus response is care of the dying COVID-19 patient. We document the demographics, symptoms experienced, medications required, effectiveness observed, and challenges to high-quality holistic palliative care in 31 patients. This will aid colleagues in primary and secondary care settings anticipate common symptoms and formulate management plans.
METHODS: A retrospective survey was conducted of patients referred to the hospital palliative care service in a tertiary hospital, south east of England between March 21 and April 26, 2020. Patients included had a confirmed laboratory diagnosis of COVID-19 via reverse transcription polymerase chain reaction nasopharyngeal swab for SARS-Cov-2 or radiological evidence of COVID-19.
RESULTS: The thirty-one patients included were predominantly male (77%), elderly (median [interquartile range]: 84 [76-89]), and had multiple (4 [3-5]) comorbidities. Referral was made in the last 2 [1-3] days of life. Common symptoms were breathlessness (84%) and delirium (77%). Fifty-eight percent of patients received at least 1 "as required" dose of an opioid or midazolam in the 24 hours before death. Sixty percent of patients needed a continuous subcutaneous infusion and the median morphine dose was 10 mg S/C per 24 hours and midazolam 10 mg S/C per 24 hours. Nineteen percent of our cohort had a loved one or relative present when dying.
CONCLUSION: We provide additional data to the internationally reported pool examining death arising from infection with SARS-CoV-19. The majority of patients had symptoms controlled with low doses of morphine and midazolam, and death was rapid. The impact of low visitation during dying needs exploring.
Objectives: This study aims to identify factors among British community-based adults associated with advance care planning engagement. Factors are then compared among six domains of wishes: medical care, spiritual and religious needs, privacy and peace, dignified care, place of death and pain relief.
Methods: Cross-sectional data were analysed from a stratified random sample of adults across Great Britain (England, Scotland and Wales) who were interviewed on their attitudes towards death and dying. Weighted multivariable logistic regression tested for associations with expressing any end-of-life wishes and then for each separate domain.
Results: Analysis of 2042 respondents (response rate: 53.5%) revealed those less likely to have discussed their wishes were: male, younger, born in the UK, owned their residence, had no experience working in health or social care, had no chronic conditions or disabilities, had not experienced the death of a close person in the last 5 years and feel neither comfortable nor uncomfortable or uncomfortable talking about death. Additional factors among the six domains associated with having not discussed wishes include: having less and more formal education, no religious beliefs, lower household income and living with at least one other person.
Conclusions: This study is the first to be conducted among a sample of community-dwelling British adults and the first of its kind to compare domains of end-of-life wishes. Our findings provide an understanding of social determinants which can inform a public health approach to end-of-life care that promotes advance care planning among compassionate communities.
District nurses are core providers of palliative care, yet little is known about the way that they provide care to people at home. This study aimed to investigate the role and practice of the district nurse in palliative care provision. This was an ethnographic study, with non-participant observation of district nurse-palliative care patient encounters, and post-observation interviews. District nurse teams from three geographical areas in northwest England participated. Data were analysed iteratively, facilitated by the use of NVivo, using techniques of constant comparison. Some 17 encounters were observed, with 23 post-observation interviews (11 with district nurses, 12 with patients/carers). Core themes were ‘planning for the future’ and ‘caring in the moment’. District nurses described how they provided and planned future care, but observations showed that this care focused on physical symptom management. District nurses engaged in friendly relationship building, which allows detailed management of symptomatology, but with little evidence of advance care planning.
Background: Informal carers are essential in enabling discharge home from hospital at end of life and supporting palliative patients at home, but are often ill-prepared for the role. Carers’ support needs are rarely considered at discharge. If carers are less able to cope with home care, patient care may suffer and readmission may become more likely.
Aim: To investigate the implementation of an evidence-based Carer Support Needs Assessment Tool (CSNAT) intervention to support carers during hospital discharge at end of life.
Design: Longitudinal qualitative study with thematic analysis.
Setting/participants: One National Health Service Trust in England: 12 hospital practitioners, one hospital administrator and four community practitioners. We provided training in CSNAT intervention use and implementation. Practitioners delivered the intervention for 6 months. Data collection was conducted in three phases: (1) pre-implementation interviews exploring understandings, anticipated benefits and challenges of the intervention; (2) observations of team meetings and review of intervention procedures and (3) follow-up interviews exploring experiences of working with the intervention.
Results: Despite efforts from practitioners, implementation was challenging. Three main themes captured facilitators and barriers to implementation: (1) structure and focus within carer support; (2) the ‘right’ people to implement the intervention and (3) practical implementation challenges.
Conclusions: Structure and focus may facilitate implementation, but the dominance of outcomes measurement and performance metrics in health systems may powerfully frame perceptions of the intervention and implementation decisions. There is uncertainty over who is best-placed or responsible for supporting carers around hospital discharge, and challenges in connecting with carers prior to discharge.
In 2017 and 2018, the English courts were asked to decide whether continued life-sustaining treatment was in the best interests of three infants: Charlie Gard, Alfie Evans and Isaiah Haastrup. Each infant had sustained catastrophic, irrecoverable brain damage. Dignity played an important role in the best interests assessments reached by the Family division of the High Court in each case. Multiple conceptions of dignity circulate, with potentially conflicting implications for infants such as Charlie, Alfie and Isaiah. The judgements do not explicate the conceptions of dignity upon which they rely. This article reconstructs the conceptions of dignity invoked in these judgements, finding that a broadly Kantian, agential conception dominates, under which human dignity requires the prospect of agency. This conception is situated within the broader body of thought on dignity, and the potentially adverse implications of applying the reconstructed conception in best interests assessments for infants with severely restricted consciousness are discussed.
Introduction: The End of Life Care in Advanced Kidney Disease Framework suggests that renal units should create a renal supportive care register (RSCR) to promote consistent communication with patients and to encourage advance care planning. The aim of the RSCR at Birmingham Heartlands Hospital is to identify patients who are requiring dialysis with a prognosis of less than 12 months. This work aims to explore whether patients were identified appropriately on the RSCR, and if conversations around withdrawal of dialysis and end of life took place.
Methods: We reviewed the inpatient and outpatient consultations of patients who died while listed on the RSCR between 1 January 2016 and 31 December 2018. We recorded the dates when patients were added to the RSCR and when they died. We reviewed conversations around dialysis withdrawal and events at the end of life.
Results and discussion: Data from Proton, the renal team’s coding system, showed that there were 80 deaths of patients listed on the RSCR: 59% were male, 41% were female. The median age at death was 77.5 years (interquartile range (IQR) 12.25 years). Thirty-eight per cent of these patients had an alert on Concerto, the hospital’s main electronic system, informing users that the patient was on the RSCR.
Eighty-eight per cent of patients were listed on the RSCR within 12 months of death; 69% of these were listed on the day they died. For the remaining patients who were listed on the register, Fig 1 illustrates that the median time to death from being placed on the register was 1.75 months (IQR 7.54 months).
Thirty-eight per cent of patients were offered a conversation on withdrawal of dialysis; 70% of these then opted to withdraw. Cited reasons for continuing dialysis after these conversations were families’ refusal to accept palliation and denial. Of those who did not have dialysis formally withdrawn prior to death, there were reports of dialysis being withheld due to low blood pressure and patients being too unwell to come in from home for dialysis.
Eighty-seven per cent had valid ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) forms. Two patients who did not have DNACPR forms received CPR (without return of spontaneous circulation) on the day of their death in hospital. Preferred place of death (PPD) was established in 20% of patients (Fig 2). While the majority of patients asked chose their PPD as home, 65% of patients on the RSCR died in hospital.
We recommend that all patients on the RSCR should have alerts placed on Concerto. This would ensure that the wider hospital, who may not know the patient as well as the renal team, are prompted to think about advance care planning. The literature reinforces that alerts can improve healthcare professionals’ engagement with conversations around resuscitation.2
Conclusion: Our data suggests that the deterioration of these patients may have been unrecognised. While some deaths are likely to be unexpected, we are missing opportunities to engage patients with end-stage renal disease in advance care planning.
Opponents of physician-assisted dying (PAD) view it as modern eugenics and a significant risk to people with disabilities. The involuntary surgical sterilisation (ISS) of girls and young women with intellectual disabilities is an example of eugenics in practice. This article reviews the social and political attitudes toward ISS and PAD in New Zealand, England, and the United States. The attitudes were compared to determine if they demonstrated any indicators of potential PAD-related harm for people with intellectual disabilities. The research identified several issues, which need to be considered to ensure the safety of people with intellectual disabilities if New Zealand was to legalise PAD.
BACKGROUND: The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell. The study aimed to explore how healthcare professionals describe the support they provide for patients to manage medications at home at end of life.
METHODS: Qualitative interview study with thematic analysis. Participants were a purposive sample of 40 community healthcare professionals (including GPs, pharmacists, and specialist palliative care and community nurses) from across two English counties.
RESULTS: Healthcare professionals reported a variety of ways in which they tried to support patients to take medications as prescribed. While the paper presents some solutions and strategies reported by professional respondents it was clear from both professional and patient/family caregiver accounts in the wider study that rather few professionals provided this kind of support. Standard solutions offered included: rationalising the number of medications; providing different formulations; explaining what medications were for and how best to take them. Dose administration aids were also regularly provided, and while useful for some, they posed a number of practical difficulties for palliative care. More challenging circumstances such as substance misuse and memory loss required more innovative strategies such as supporting ways to record medication taking; balancing restricted access to controlled drugs and appropriate pain management and supporting patient choice in medication use.
CONCLUSIONS: The burdens and responsibilities of managing medicines at home for patients approaching the end of life has not been widely recognised or understood. This paper considers some of the strategies reported by professionals in the study, and points to the great potential for a more widely proactive stance in supporting patients and family carers to understand and take their medicines effectively. By adopting tailored, and sometimes, 'outside the box' thinking professionals can identify immediate, simple solutions to the problems patients and families experience with managing medicines.