Patient and professional experiences of palliative care referral discussions from cancer services: A qualitative interview study.

OBJECTIVES: The aim of this paper was to identify current barriers, facilitators and experiences of raising and discussing palliative care with people with advanced cancer. METHODS: Semi-structured interviews were conducted with patients with advanced cancer and healthcare professionals (HCPs). Patients were included who had and had not been referred to palliative care. Transcripts were analysed using framework analysis. RESULTS: Twenty-four patients and eight HCPs participated. Two overarching themes and five sub-themes emerged: Theme one-referral process: timing and triggers, responsibility. Theme two-engagement: perception of treatment, prognosis and palliative care, psychological and emotional preparedness for discussion, and understanding how palliative care could benefit present and future care. CONCLUSION: There is a need to identify suitable patients earlier in their cancer trajectory, address misconceptions about palliative care, treatment and prognosis, and better prepare patients and HCPs to have meaningful conversations about palliative care. Patients and HCPs need to establish and communicate the relevance of palliative care to the patient's current and future care, and be clear about the referral process.

Developing a complex intervention to support timely engagement with palliative care for patients with advanced cancer in primary and secondary care in the UK: a study protocol.

INTRODUCTION: For patients with advanced cancer, timely access to palliative care can improve quality of life and enable patients to participate in decisions about their end-of-life care. However, in a UK population of 2500 patients who died from cancer, one-third did not receive specialist palliative care, and of those who did, the duration of involvement was too short to maximise the benefits. Initiating a conversation about palliative care is challenging for some health professionals and patients often have unmet information needs and misconceptions about palliative care. We will work closely with patients and health professionals to develop a patient decision aid and health professional training module designed to facilitate a timely and informed conversation about palliative care. METHODS AND ANALYSIS: This study is being conducted over 24 months from November 2017 to October 2019 and follows the UK Medical Research Council framework for developing complex interventions and the International Patient Decision Aids Guideline. The Ottawa Decision Support Framework underpins the study. The Supporting Timely Engagement with Palliative care (STEP) intervention will be developed though an iterative process informed by interviews and focus groups with patients with advanced cancer, oncologists, general practitioners and palliative care doctors. An expert panel will also review each iteration. The expert panel will consist of a patient representative with experience of palliative care, health professionals who are involved in advanced cancer care decision-making, a medical education expert and the National Council for Palliative Care director of transformation. The feasibility and acceptability of the decision aid and doctor training will be tested in oncology and general practice settings. ETHICS AND DISSEMINATION: Ethical approval for the study has been granted by the Office for Research Ethics Committees Northern Ireland (ORECNI), approval reference 17/NI/0249. Dissemination and knowledge transfer will be conducted via publications, national bodies and networks, and patient and family groups.

Electronic palliative care coordination systems: Devising and testing a methodology for evaluating documentation.

BACKGROUND: The need to improve coordination of care at end of life has driven electronic palliative care coordination systems implementation across the United Kingdom and internationally. No approaches for evaluating electronic palliative care coordination systems use in practice have been developed. AIM: This study outlines and applies an evaluation framework for examining how and when electronic documentation of advance care planning is occurring in end of life care services. DESIGN: A pragmatic, formative process evaluation approach was adopted. The evaluation drew on the Project Review and Objective Evaluation methodology to guide the evaluation framework design, focusing on clinical processes. SETTING/PARTICIPANTS: Data were extracted from electronic palliative care coordination systems for 82 of 108 general practices across a large UK city. All deaths ( n = 1229) recorded on electronic palliative care coordination systems between April 2014 and March 2015 were included to determine the proportion of all deaths recorded, median number of days prior to death that key information was recorded and observations about routine data use. RESULTS: The evaluation identified 26.8% of all deaths recorded on electronic palliative care coordination systems. The median number of days to death was calculated for initiation of an electronic palliative care coordination systems record (31 days), recording a patient's preferred place of death (8 days) and entry of Do Not Attempt Cardiopulmonary Resuscitation decisions (34 days). Where preferred and actual place of death was documented, these were matching for 75% of patients. Anomalies were identified in coding used during data entry on electronic palliative care coordination systems. CONCLUSION: This study reports the first methodology for evaluating how and when electronic palliative care coordination systems documentation is occurring. It raises questions about what can be drawn from routine data collected through electronic palliative care coordination systems and outlines considerations for future evaluation. Future evaluations should consider work processes of health professionals using electronic palliative care coordination systems.

Delirium in palliative care: Detection, documentation and management in three settings.

OBJECTIVES: Delirium is characterized by disturbances of consciousness and changes in cognition that develop rapidly and fluctuate. It is common in palliative care, affecting up to 88% of patients with advanced cancer, yet often remains insufficiently diagnosed and managed. This study sought to compare rates of screening, documentation, and management of delirium across three palliative care settings - two hospices and one hospital team - and to determine whether definitive documentation of delirium as a diagnosis is associated with improved management of the disorder. METHODS: A retrospective review of patient case notes was performed in three U.K. palliative care settings for the presence of: cognitive screening tools on first assessment; the term "delirium" as a stated documented diagnosis; documented terms, descriptions, and synonyms suggestive of delirium; and management plans aimed at addressing delirium. RESULTS: We reviewed 319 notes. The prevalence of delirium as a documented diagnosis ranged from 0 to 8.4%, rising to 35.7-39.2% when both documented delirium and descriptions suggestive of delirium were taken into account. An abbreviated mental test score (AMTS) was determined for 19.6 (H1) and 26.8% (H2) of hospice admissions and for 0% of hospital assessments. Symptoms suggestive of delirium were managed in 56.3% of cases in hospital, compared with 66.7 (H1) and 72.2% (H2) in hospices. SIGNIFICANCE OF RESULTS: Use of the term "delirium" was infrequent in both hospital and hospice palliative care settings, as was the use of routine screening. Many identified cases did not receive targeted management. The definitive use of the term as a diagnosis was associated with clearer management plans in hospital patients. The authors suggest that better screening and identification remains the first step in improving delirium management.

The recognition and documentation of delirium in hospital palliative care inpatients.

OBJECTIVE: Delirium is a clinical syndrome that is known to be under recognized by palliative care teams. A wide variation in reported prevalence may reflect differences in definitions and assessment methods, patient characteristics, and study design. The aim of this study was to test an intervention to improve recognition of delirium in the inpatient palliative care setting. METHOD: We conducted a retrospective palliative care notes review of documented prevalence of delirium among 61 patients referred to the Specialist Palliative Care Advisory Team (SPCT). Subsequently, training in the use of the Confusion Assessment Method (CAM) was provided to the SPCT and a prospective survey of the prevalence of delirium measured by the CAM was undertaken with the next 59 patients referred. RESULTS: In the retrospective chart review, the term "delirium" was not used, and synonyms were identified and used to establish a delirium prevalence of 11.5%. In the intervention utilizing the CAM in a prospective sample of 59 referred patients, a prevalence rate of 8.5-15.2% for delirium was found. Use of the CAM was received favorably by the SPCT. SIGNIFICANCE OF RESULTS: The institution of the use of the CAM as a screening and assessment tool in the inpatient palliative care setting did not significantly increase the recognition of delirium. Reasons for the low prevalence of delirium are discussed.

How should we measure emesis in palliative care?

There are many assessment tools available to measure emesis. This Association for Palliative Medicine Science Committee Task Group undertook a review of the validity and suitability of the assessment tools available to measure nausea, vomiting and retching within a palliative care population. Electronic databases were searched from 1970 to 2004. Both specific and global tools were identified and reviewed for their validity, reliability and suitability for our patient population where coexisting cognitive impairment and significant co-morbidities may make accurate assessment of symptoms difficult. Within specific palliative care scenarios namely daily clinical assessment, prevalence surveys and randomized controlled trial settings, the team reached a consensus on which tools had the greatest evidence to recommend them, either for immediate use or for further validation studies. An ideal measurement tool for the assessment of nausea, vomiting and retching has not yet been developed.

What determines referral of UK patients with haematological malignancies to palliative care services? An exploratory study using hospital records.

We investigated the frequency and characteristics of patients with haematological malignancies (HMs) who were, or were not, referred for specialist palliative care (SPC). Data were abstracted from hospital records of 108 patients who died - 27 with leukaemia, 11 with myelodysplastic syndromes, 48 with lymphoma and 22 with myeloma. Ninety-three patients (86.1%) were >60 years of age at diagnosis, with 33 (30.6%) being >or=80 years and 31 (28.7%) having existing comorbidities. Thirty-three patients (30.6%) were referred to SPC services. There was little difference by age or HM diagnosis in referred patients. Seventeen of 67 patients (25.4%) dying on a hospital ward received SPC compared with 6/7 (85.7%) dying at home. Time between diagnosis and death influenced the referral - 24/52 patients (46.2%) dying >or=30 days after diagnosis received SPC compared with 8/42 (19.1%) dying within 30 days. In 14 patients, HM diagnosis was confirmed after death. Identification of these 14 patients is likely to be a unique feature of our study, as patients were selected from a regional, population-based register with centralized diagnostic services, enabling the identification of all patients with HM. The interface between curative and palliative treatment in HM is more complex than the National Institute for Clinical Excellence recommendations suggest.

Continuing Professional Development (CPD) in palliative medicine: a survey.

All doctors are required to undertake Continuing Professional development (CPD)--for good practice and for the purposes of annual appraisal and re-validation. The medical workforce in palliative medicine is diverse. Many doctors work on a part time basis, with the same CPD requirements as those working fulltime. This survey was undertaken: to establish whether doctors had fulfilled their CPD requirements in the year 2001-2002 and to identify problems or difficulties experienced by doctors in undertaking CPD. A questionnaire was sent to all doctors known to be working in non-training posts within palliative medicine in October 2002, requesting information on CPD undertaken between 1 April 2001 and 31 March 2002. Questions were also asked regarding knowledge and understanding of appraisal and revalidation. The response rate was 53% (381/721). Palliative medicine was the main post for 276 (72%) respondents and 169 were on the specialist register (44%). The subgroup most likely to have fulfilled CPD requirements were those on the Specialist Register (64%), and those least likely were those holding a contract with a charitable organisation (33%). Less than half of those not on the specialist register understood CPD and revalidation requirements. Overall, only 43% of respondents were meeting CPD requirements (median 25 credits; range 5-375 hours). This study has highlighted widespread barriers to the successful planning, participation in, and recording of, CPD for palliative medicine doctors, with those who are not on the specialist register appearing to be particularly disadvantaged. Individual doctors' information needs need to be addressed, but organisational support for CPD is also required. We believe many of these issues also apply in other specialities.

The use of oxygen in the palliation of breathlessness. A report of the expert working group of the Scientific Committee of the Association of Palliative Medicine.

Dyspnoea is a common, distressing symptom and difficult to control with medical treatment. The role of oxygen in reducing the severity of the symptoms and improving quality of life is still unclear. A working party of the Association of Palliative Medicine Science Committee set out to examine the evidence concerning the use of oxygen for the palliation of breathlessness in COPD, advanced cancer and chronic heart failure and to make recommendations for clinicians working in palliative care. There were very few randomised controlled trials available for any of these conditions. There was no evidence available for heart failure, very little for advanced cancer and although there were a number of trials on the use of oxygen in COPD very few, until recently, used reduction of breathlessness as an outcome measure. Recommendations are made on the basis of the evidence available and expert opinion such as the Royal College of Physicians report on the use of domiciliary oxygen. Oxygen use has to be tailored to the individual and a formal assessment made of its efficacy for reducing breathlessness and improving quality of life for that person [corrected].

Beyond futility: to what extent is the concept of futility useful in clinical decision-making about CPR?

The concept of futility has often been invoked to justify abstention from treatment and decisions such as 'do not attempt resuscitation' (DNAR). In this capacity, futility has played an important part in the development of several sets of official clinical guidelines. In this paper, we examine the nature of futility and question whether it is a sufficiently robust concept to meet the ethical and clinical demands placed upon it. Although the concept of futility promises simplicity, it cannot stand alone as a satisfactory framework for clinical decision-making. Practitioners and policy makers should be cautious about their use of the concept.