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.

Integration of palliative and supportive care in the management of advanced liver disease: development and evaluation of a prognostic screening tool and supportive care intervention.

BACKGROUND AND OBJECTIVES: Patients with decompensated cirrhosis rarely receive palliative and supportive care interventions, which are routine in other life-limiting diseases. We aimed to design and evaluate a prognostic screening tool to routinely identify inpatients with decompensated cirrhosis at high risk of dying over the coming year, alongside the development of a supportive care intervention. DESIGN: Clinical notes from consecutive patients admitted as an emergency to University Hospitals Bristol with a diagnosis of cirrhosis over two distinct 90-day periods were scrutinised retrospectively for the presence or absence of five evidence-based factors associated with poor prognosis. These were analysed against their ability to predict mortality at 1 year. 'Plan-Do-Study-Act' (PDSA) methodology was used to incorporate poor-prognosis screening into the routine assessment of patients admitted with cirrhosis, and develop a supportive care intervention. RESULTS: 73 admissions were scrutinised (79.5% male, 63% alcohol-related liver disease, median age 54). The presence of three or more poor-prognosis criteria at admission predicted 1-year mortality with sensitivity, specificity and positive predictive value of 72.2%, 83.8% and 81.3%, respectively, and was used as a trigger for implementing the supportive care intervention. Following modification from six PDSA cycles, prognostic screening was integrated into the assessment of all patients admitted with decompensated cirrhosis, with the supportive care intervention (developed simultaneously) instigated for appropriate patients. CONCLUSIONS: We describe a model of care which identifies inpatients with cirrhosis at significant risk of dying over the coming year, and describe development of a supportive care intervention, which can be offered to suitable patients in parallel to ongoing active management.

Contemporary accuracy of death certificates for coding prostate cancer as a cause of death: Is reliance on death certification good enough? A comparison with blinded review by an independent cause of death evaluation committee.

BACKGROUND: Accurate cause of death assignment is crucial for prostate cancer epidemiology and trials reporting prostate cancer-specific mortality outcomes. METHODS: We compared death certificate information with independent cause of death evaluation by an expert committee within a prostate cancer trial (2002-2015). RESULTS: Of 1236 deaths assessed, expert committee evaluation attributed 523 (42%) to prostate cancer, agreeing with death certificate cause of death in 1134 cases (92%, 95% CI: 90%, 93%). The sensitivity of death certificates in identifying prostate cancer deaths as classified by the committee was 91% (95% CI: 89%, 94%); specificity was 92% (95% CI: 90%, 94%). Sensitivity and specificity were lower where death occurred within 1 year of diagnosis, and where there was another primary cancer diagnosis. CONCLUSIONS: UK death certificates accurately identify cause of death in men with prostate cancer, supporting their use in routine statistics. Possible differential misattribution by trial arm supports independent evaluation in randomised trials.

Research participation registers can increase opportunities for patients and the public to participate in health services research.

Members of the public and patients repeatedly indicate their willingness to take part in research, but current United Kingdom research governance involves complex rules about gaining consent. Research participation registers that seek consent from participants to be approached about future studies have several potential benefits, including: increased research participation across clinical and healthy populations; simplified recruitment to health care research; support for people's autonomy in decision making; and improved efficiency and generalizability of research. These potential benefits have to be balanced against ethical and governance considerations. With appropriate processes in place, seeking prospective consent from patients and members of the public to be approached about future studies could potentially increase public participation in health research without compromising informed consent and other ethical principles.

Healthcare professionals' perspectives on delivering end-of-life care within acute hospital trusts: a qualitative study.

OBJECTIVE: The quality of end-of-life (EOL) care in acute hospitals is variable and interventions to improve this care, such as EOL care pathways, are not always used. The underlying reasons for this variability are not fully understood. We explored healthcare professionals' views on delivering EOL care within an acute hospital trust in the South West of England. METHODS: We employed qualitative methods (focus groups, in-depth interviews and questerviews) within a study investigating the impact of a simple EOL tool on the care of dying patients. We invited a range of staff of all grades with experience in caring for dying patients from medicine, surgery and care of the elderly teams to participate. RESULTS: Six focus groups, seven interviews and five questerviews were conducted. Two main themes emerged: (a) delays (difficulties and avoidance) in diagnosing dying and (b) the EOL tool supporting staff in caring for the dying. Staff acknowledged that the diagnosis of dying was often made late; this was partly due to prognostic uncertainty but compounded by a culture that did not acknowledge death as a possible outcome until death was imminent. Both the medical and nursing staff found the EOL tool useful as a means of communicating ceilings of care, ensuring appropriate prescribing for EOL symptoms, and giving nurses permission to approach the bedside of a dying patient. CONCLUSIONS: The culture of avoiding death and dying in acute hospitals remains a significant barrier to providing EOL care, even when EOL tools are available and accepted by staff.

"We all talk about it as though we're thinking about the same thing." Healthcare professionals' goals in the management of pain due to advanced cancer: a qualitative study.

PURPOSE: Unfortunately, several barriers impede successful management of cancer pain including those relating to the assessment and measurement of pain. There is currently no consensus as to what constitutes good pain control or what healthcare professionals are aiming to achieve in the management of pain for patients with advanced cancer. This study aimed to explore healthcare professionals' views and experiences to elicit what they are aiming to achieve in managing pain for patients with advanced cancer. METHODS: Healthcare professionals involved in the management of cancer pain were sampled purposively and interviewed using a semi-structured interview technique until saturation of data. Data were analysed using the constant comparison approach. RESULTS: Sixteen interviews took place and four main themes emerged: aims of pain management, assessing response to pain management, managing expectations, and building relationships. Healthcare professionals found assessing patients' pain challenging and reported that patients had difficulty using numerical rating scales. Healthcare professionals used different terms when talking about managing pain, such as 'pain control' but found it difficult to define these terms. Maintaining patients' function and managing their expectations were described as important. However, it was not always clear whether the patient goals mentioned were voiced explicitly by the patient or assumed by the healthcare professional. CONCLUSION: Healthcare professionals described what they deemed important in the management of pain. The goals they mentioned almost exclusively related to function as opposed to pain scores, but patients' goals and expectations were often not elicited specifically.

What do patients with advanced incurable cancer want from the management of their pain? A qualitative study.

BACKGROUND: Pain is one of the most frequent symptoms among patients with metastatic cancer, yet little is known about what patients with advanced cancer want from the management of their pain. Measuring the effectiveness of the management of pain is challenging as it is a subjective phenomenon and a multifaceted process. Determining how we currently define whether a patient with pain due to advanced cancer has controlled pain (or not) is important, particularly from the patient's perspective. AIM: To explore how patients with advanced cancer describe the control of pain and what they want from management of this pain. DESIGN: Qualitative study using face-to-face interviews. Data were analysed using a constant comparison approach. SETTING/PARTICIPANTS: Purposive sample of patients with advanced cancer known to palliative care services. RESULTS: Twelve interviews took place until saturation of data was achieved. Four themes emerged: maintaining role, self and independence; compromising/modifying expectations; role of healthcare professionals; and meaning of pain in context of advanced cancer. CONCLUSION: Patients determined whether their pain was 'controlled' by whether or not they were able to perform activities or tasks and maintain relationships with family or friends, which determined themselves as individuals. Numerical rating scales did not appear to be useful for patients in measuring whether they are able to perform these activities or maintain a sense of control and independence. Individualised goal/task/role/activity setting for patients with advanced cancer pain may be useful to allow patients themselves to determine what they want from the 'management' of their pain.

Vitamin D deficiency as a cause of chronic pain in the palliative medicine clinic: two case reports.

BACKGROUND: Vitamin D deficiency is common in the general population and has been implicated as a cause of chronic pain. The palliative care population has a number of risk factors for vitamin D deficiency. We present two cases of unexplained pain in patients attending the palliative medicine outpatient clinic that improved after vitamin D replacement. CASES: Case 1 is a 46-year-old man with thalassaemia intermedia and back and leg pain without a clear cause. Case 2 is a 28-year-old woman undergoing treatment for cervical cancer whose initial disease and treatment-related abdominal pain resolved but subsequently reported ongoing non-specific aches and pains. Case management: Both patients were found to have vitamin D levels <50 nmol/L and were treated with vitamin D replacement therapy. Case outcome: Following vitamin D replacement therapy, pain resolved in both patients allowing a reduction in analgesic therapy. CONCLUSIONS: The prevalence of vitamin D deficiency in the palliative care population merits further investigation, since these patients are at high risk of deficiency. Having an index of suspicion, particularly in those patients with known risk factors and pain that is not fully explained, may result in better pain control and functional outcomes.

Overcoming barriers to recruitment in care of the dying research in hospitals.

CONTEXT: Approximately 40% of the U.S. and 60% of the U.K. population die in hospital. Many reports have highlighted variability in the care received by these patients and national initiatives have proposed strategies to improve this care. No studies have demonstrated whether any improvements in end-of-life care have been achieved, as research in this area is challenging. OBJECTIVES: We designed a study to assess the feasibility of a novel method of identifying patients likely to die during an acute hospital admission and a model of prior consent from patients and/or assent from their relatives. METHODS: A study for collecting data on patients' symptoms before and after the introduction of an end-of-life tool (comprising medical and nursing checklists, prescribing guidance, and a symptom observation chart) within five wards in a major U.K. teaching hospital was conducted. We asked the screening question to a senior member of staff, "Is this patient so unwell that you feel they could die on this admission?" to identify appropriate patients, and recruited using the consent procedure. Patients were enrolled in the study if they became more unwell and data were then collected until they died. RESULTS: In total, 6642 patients were screened. The ward staff answered "yes" to the screening question for 327 of 6642 (4.9%) patients. Patient's prior consent or relative's assent to enroll in the study was obtained for 117 of 327 (35.8%) patients, of whom 70 of 117 (59.8%) enrolled for the study and died within the study period. The staff found that the methods used were appropriate. CONCLUSION: We have shown that identifying and involving dying patients in research is possible and acceptable to patients and carers.

Can the impact of an acute hospital end-of-life care tool on care and symptom burden be measured contemporaneously?

OBJECTIVE: To determine the utility of a screening question to identify patients who might die during hospital admission and feasibility of scoring symptoms in dying patients within a study assessing the impact of a brief end-of-life (EOL) tool. METHODS: Between March 2008 and July 2010 patients admitted to five wards of an acute hospital were screened using the question 'Is this patient so unwell you feel they could die during this admission?' Once 40 patients were recruited, the brief EOL tool was introduced to the wards and a further 30 patients were recruited. Symptom scoring using the Edmonton Symptom Assessment System (ESAS) began when the patient was recognised as dying. Relatives were asked to complete the Views of Informal Carers-Evaluation of Services questionnaire to validate the results of the contemporaneous symptom assessments and assess the impact of the tool. RESULTS: The sensitivity of the screening question was 57%, specificity 98% and positive predictive value 67%, so the question was useful in enrolling study patients. There were limitations with the ESAS but core EOL symptoms were scored more frequently after the tool was introduced. Questionnaire responses suggested relatives perceived aspects of care improved with the EOL tool in place. CONCLUSIONS: It is possible to identify dying patients and study care given to them in hospital in real time. Outcome measures need to be refined, but contemporaneous symptom monitoring was possible. We argue interventions to improve EOL care should be unequivocally evidence-based, and research to provide evidence of impact on the patient experience is possible.

The role of multi-disciplinary teams in decision-making for patients with recurrent malignant disease.

BACKGROUND: It is mandatory in many countries for decisions for all new patients with cancer to be made within multi-disciplinary teams (MDTs). Whether patients with disease recurrence should also routinely be discussed by the MDT is unknown. AIM: This study investigated the role of an upper gastro intestinal (UGI) MDT in decision-making for patients with disease recurrence. DESIGN: A retrospective review of prospectively kept MDT records (2010 to 2011) was performed identifying patients discussed with recurrence of oesophagogastric cancer. Information was recorded about: i) why an MDT referral was made, ii) who made the referral and iii) the final MDT recommendation. Implementation of the MDT recommendation was also examined. PARTICIPANTS: All patients discussed with recurrence of cancer at a central UGI cancer MDT were included. RESULTS: During the study 54 MDT meetings included discussions regarding 304 new patients and 29 with disease recurrence. Referrals to the MDT for patients with recurrence came from outpatient clinics (n=19, 65.5%) or following emergency admission (n=10). Most referrals were made by the surgical team (n=25, 86.2%). MDT recommendations were best supportive care (n=11, 37.9%), palliative chemotherapy (n=9, 31.0%), stent (n=5, 17.2%), palliative radiotherapy (n=3, 10.3%) and further surgery (n=1, 3.4%), with 25 (86.2%) of these implemented. CONCLUSION: UGI MDTs focus on new referrals and only a small proportion of patients with recurrent disease are re-discussed. Many patients go on to receive further treatments. Whether such patients are optimally managed within the standard MDT is uncertain, however, and warrants further consideration.

Use of opioid analgesics in the treatment of cancer pain: evidence-based recommendations from the EAPC.

Here we provide the updated version of the guidelines of the European Association for Palliative Care (EAPC) on the use of opioids for the treatment of cancer pain. The update was undertaken by the European Palliative Care Research Collaborative. Previous EAPC guidelines were reviewed and compared with other currently available guidelines, and consensus recommendations were created by formal international expert panel. The content of the guidelines was defined according to several topics, each of which was assigned to collaborators who developed systematic literature reviews with a common methodology. The recommendations were developed by a writing committee that combined the evidence derived from the systematic reviews with the panellists' evaluations in a co-authored process, and were endorsed by the EAPC Board of Directors. The guidelines are presented as a list of 16 evidence-based recommendations developed according to the Grading of Recommendations Assessment, Development and Evaluation system.

A systematic review of oxycodone in the management of cancer pain.

BACKGROUND: Oxycodone is often used as an opioid analgesic for moderate to severe cancer-related pain, but its use varies across Europe. This systematic literature review forms the basis of guidelines for oxycodone use within the European Palliative Care Research Collaborative opioid guidelines project conducted on behalf of the European Association for Palliative Care. OBJECTIVES: The objective of this study was to identify and assess the quality of evidence for the use of oxycodone for cancer pain in adults. METHODS: The Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials, MedLine, EMBASE and CINAHL were systematically searched in addition to hand searching of relevant journals. Studies were included if they reported a clinical outcome relevant to the use of oxycodone in adult patients with moderate to severe cancer pain. Any form and route of oxycodone was included except intrathecal. No direct comparator was required for inclusion and studies were excluded if patients had previously switched from another strong opioid because of intolerable adverse effects or poor efficacy. This is a narrative systematic review, using the GRADE approach to assess the quality of studies and to formulate guidelines. RESULTS: Twenty-nine original studies were identified including a meta-analysis and 14 randomized controlled trials. The identified meta-analysis included three trials comparing oxycodone to morphine and one comparing oxycodone to hydromorphone. Four other randomized trials compared oxycodone with other opioids. The remaining randomized controlled trials compared different routes of administration or formulations of oxycodone. No additional studies that would have been suitable for addition to the meta-analysis were identified. CONCLUSIONS: There is no evidence from the included trials of a significant difference in analgesia or adverse effects between oxycodone and morphine or hydromorphone. The evidence was graded as high quality on the basis of a well-conducted meta-analysis, with no limitations likely to affect the outcome, in addition to consistency in the results of the other studies. The research was conducted using participants relevant to cancer and palliative care populations. Oxycodone can be recommended as an alternative to morphine or hydromorphone for cancer-related pain.

Professional experience guides opioid prescribing for chronic joint pain in primary care.

BACKGROUND: Chronic joint pain is common and is a leading cause of disability. Most chronic joint pain is managed in primary care. Opioid pain medication is one option for pain management, but research suggests that its use by general practitioners (GPs) may be suboptimal. There is a widespread perception that doctors' concerns about misuse and addiction limit use of opioids. OBJECTIVES: To explore GPs' opinions about opioids and decision-making processes when prescribing 'strong' opioids for chronic joint pain. METHODS: Qualitative semi-structured interviews were conducted with 27 GPs. Using thematic analysis methods, the data were coded and grouped into themes. RESULTS: GPs described a variety of prescribing habits for chronic joint pain. Opioids engendered strong opinions. GPs said that decisions about prescribing were based on careful assessment of patients' needs and their personal views about the management of adverse effects. Although addiction and misuse were discussed, there was limited concern about these issues. The overarching influence on prescribing decisions was GPs' previous experience, including previous outcomes and exposure to palliative care settings. CONCLUSIONS: GPs' prescribing decisions are primarily influenced by previous professional experience of opioids. Much existing literature stresses that opioids are not prescribed due to concerns about addiction or misuse, but our study indicates otherwise. Augmenting GPs' exposure to and experience of opioids may be key to providing better pain management for patients.

The management of cancer-related breakthrough pain: recommendations of a task group of the Science Committee of the Association for Palliative Medicine of Great Britain and Ireland.

A task group of the Science Committee of the Association for Palliative Medicine of Great Britain and Ireland (APM) was convened to produce some up-to-date, evidence-based, practical, clinical guidelines on the management of cancer-related breakthrough pain in adults. On the basis of a review of the literature, the task group was unable to make recommendations about any individual interventions, but was able to make a series of 12 recommendations about certain generic strategies. However, most of the aforementioned recommendations are based on limited evidence (i.e., case series, expert opinion). The task group also proposed a definition of breakthrough pain, and some diagnostic criteria for breakthrough pain.