Accuracy of clinical predictions of prognosis at the end-of-life: evidence from routinely collected data in urgent care records.

BACKGROUND: The accuracy of prognostication has important implications for patients, families, and health services since it may be linked to clinical decision-making, patient experience and outcomes and resource allocation. Study aim is to evaluate the accuracy of temporal predictions of survival in patients with cancer, dementia, heart, or respiratory disease. METHODS: Accuracy of clinical prediction was evaluated using retrospective, observational cohort study of 98,187 individuals with a Coordinate My Care record, the Electronic Palliative Care Coordination System serving London, 2010-2020. The survival times of patients were summarised using median and interquartile ranges. Kaplan Meier survival curves were created to describe and compare survival across prognostic categories and disease trajectories. The extent of agreement between estimated and actual prognosis was quantified using linear weighted Kappa statistic. RESULTS: Overall, 3% were predicted to live "days"; 13% "weeks"; 28% "months"; and 56% "year/years". The agreement between estimated and actual prognosis using linear weighted Kappa statistic was highest for patients with dementia/frailty (0.75) and cancer (0.73). Clinicians' estimates were able to discriminate (log-rank p < 0.001) between groups of patients with differing survival prospects. Across all disease groups, the accuracy of survival estimates was high for patients who were likely to live for fewer than 14 days (74% accuracy) or for more than one year (83% accuracy), but less accurate at predicting survival of "weeks" or "months" (32% accuracy). CONCLUSION: Clinicians are good at identifying individuals who will die imminently and those who will live for much longer. The accuracy of prognostication for these time frames differs across major disease categories, but remains acceptable even in non-cancer patients, including patients with dementia. Advance Care Planning and timely access to palliative care based on individual patient needs may be beneficial for those where there is significant prognostic uncertainty; those who are neither imminently dying nor expected to live for "years".

Processes of consent in research for adults with impaired mental capacity nearing the end of life: systematic review and transparent expert consultation (MORECare_Capacity statement).

BACKGROUND: Involving adults lacking capacity (ALC) in research on end of life care (EoLC) or serious illness is important, but often omitted. We aimed to develop evidence-based guidance on how best to include individuals with impaired capacity nearing the end of life in research, by identifying the challenges and solutions for processes of consent across the capacity spectrum. METHODS: Methods Of Researching End of Life Care_Capacity (MORECare_C) furthers the MORECare statement on research evaluating EoLC. We used simultaneous methods of systematic review and transparent expert consultation (TEC). The systematic review involved four electronic databases searches. The eligibility criteria identified studies involving adults with serious illness and impaired capacity, and methods for recruitment in research, implementing the research methods, and exploring public attitudes. The TEC involved stakeholder consultation to discuss and generate recommendations, and a Delphi survey and an expert 'think-tank' to explore consensus. We narratively synthesised the literature mapping processes of consent with recruitment outcomes, solutions, and challenges. We explored recommendation consensus using descriptive statistics. Synthesis of all the findings informed the guidance statement. RESULTS: Of the 5539 articles identified, 91 met eligibility. The studies encompassed people with dementia (27%) and in palliative care (18%). Seventy-five percent used observational designs. Studies on research methods (37 studies) focused on processes of proxy decision-making, advance consent, and deferred consent. Studies implementing research methods (30 studies) demonstrated the role of family members as both proxy decision-makers and supporting decision-making for the person with impaired capacity. The TEC involved 43 participants who generated 29 recommendations, with consensus that indicated. Key areas were the timeliness of the consent process and maximising an individual's decisional capacity. The think-tank (n = 19) refined equivocal recommendations including supporting proxy decision-makers, training practitioners, and incorporating legislative frameworks. CONCLUSIONS: The MORECare_C statement details 20 solutions to recruit ALC nearing the EoL in research. The statement provides much needed guidance to enrol individuals with serious illness in research. Key is involving family members early and designing study procedures to accommodate variable and changeable levels of capacity. The statement demonstrates the ethical imperative and processes of recruiting adults across the capacity spectrum in varying populations and settings.

The value of uncertainty in critical illness? An ethnographic study of patterns and conflicts in care and decision-making trajectories.

BACKGROUND: With increasingly intensive treatments and population ageing, more people face complex treatment and care decisions. We explored patterns of the decision-making processes during critical care, and sources of conflict and resolution. METHODS: Ethnographic study in two Intensive Care Units (ICUs) in an inner city hospital comprising: non-participant observation of general care and decisions, followed by case studies where treatment limitation decisions, comfort care and/or end of life discussions were occurring. These involved: semi-structured interviews with consenting families, where possible, patients; direct observations of care; and review of medical records. RESULTS: Initial non-participant observation included daytime, evenings, nights and weekends. The cases were 16 patients with varied diagnoses, aged 19-87 years; 19 family members were interviewed, aged 30-73 years. Cases were observed for <1 to 156 days (median 22), depending on length of ICU admission. Decisions were made serially over the whole trajectory, usually several days or weeks. We identified four trajectories with distinct patterns: curative care from admission; oscillating curative and comfort care; shift to comfort care; comfort care from admission. Some families considered decision-making a negative concept and preferred uncertainty. Conflict occurred most commonly in the trajectories with oscillating curative and comfort care. Conflict also occurred inside clinical teams. Families were most often involved in decision-making regarding care outcomes and seemed to find it easier when patients switched definitively from curative to comfort care. We found eight categories of decision-making; three related to the care outcomes (aim, place, response to needs) and five to the care processes (resuscitation, decision support, medications/fluids, monitoring/interventions, other specialty involvement). CONCLUSIONS: Decision-making in critical illness involves a web of discussions regarding the potential outcomes and processes of care, across the whole disease trajectory. When measures oscillate between curative and comfort there is greatest conflict. This suggests a need to support early communication, especially around values and preferred care outcomes, from which other decisions follow, including DNAR. Offering further support, possibly with expert palliative care, communication, and discussion of 'trial of treatment' may be beneficial at this time, rather than waiting until the 'end of life'.

Approaches to managing uncertainty in people with life-limiting conditions: role of communication and palliative care.

Patients with any major illness can expect to experience uncertainty about the nature of their illness, its treatment and their prognosis. Prognostic uncertainty is a particular source of patient distress among those living with life-limiting disease. Uncertainty also affects professionals and it has been argued that the level of professional tolerance of uncertainty can affect levels of investigation as well as healthcare resource use. We know that the way in which uncertainty is recognised, managed and communicated can have important impacts on patients' treatment and quality of life. Current approaches to uncertainty in life-limiting illness include the use of care bundles and approaches that focus on communication and education. The experience in communicating in difficult situations that specialist palliative care professionals can provide may also be of benefit for patients with life-limiting illness in the context of uncertainty. While there are a number of promising approaches to uncertainty, as yet few interventions targeted at recognising and addressing uncertainty have been fully evaluated and further research is needed in this area.

Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain.

BACKGROUND: Cancer end-of-life care (EoLC) policies assume people want to die at home. We aimed to examine variations in preferences for place of death cross-nationally. METHODS: A telephone survey of a random sample of individuals aged ≥16 in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We determined where people would prefer to die if they had a serious illness such as advanced cancer, facilitating circumstances, personal values and experiences of illness, death and dying. RESULTS: Of 9344 participants, between 51% (95% CI: 48% to 54%) in Portugal and 84% (95% CI: 82% to 86%) in the Netherlands would prefer to die at home. Cross-national analysis found there to be an influence of circumstances and values but not of experiences of illness, death and dying. Four factors were associated with a preference for home death in more than one country: younger age up to 70+ (Germany, the Netherlands, Portugal, Spain), increased importance of dying in the preferred place (England, Germany, Portugal, Spain), prioritizing keeping a positive attitude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal). CONCLUSIONS: At least two-thirds of people prefer a home death in all but one country studied. The strong association with personal values suggests keeping home care at the heart of cancer EoLC.

Vulnerability in palliative care research: findings from a qualitative study of black Caribbean and white British patients with advanced cancer.

INTRODUCTION: Vulnerability is a poorly understood concept in research ethics, often aligned to autonomy and consent. A recent addition to the literature represents a taxonomy of vulnerability developed by Kipnis, but this refers to the conduct of clinical trials rather than qualitative research, which may raise different issues. AIM: To examine issues of vulnerability in cancer and palliative care research obtained through qualitative interviews. METHOD: Secondary analysis of qualitative data from 26 black Caribbean and 19 white British patients with advanced cancer. RESULTS: Four domains of vulnerability derived from Kipnis's taxonomy were identified and included: (i) communicative vulnerability, represented by participants impaired in their ability to communicate because of distressing symptoms; (ii) institutional vulnerability, which referred to participants who existed under the authority of others--for example, in hospital; (iii) deferential vulnerability, which included participants who were subject to the informal authority or the independent interests of others; (iv) medical vulnerability, which referred to participants with distressing medical conditions; and (v) social vulnerability, which included participants considered to belong to an undervalued social group. Participants from both ethnic groups populated all these domains, but those who were black Caribbean were more present among the socially vulnerable. CONCLUSIONS: Current classifications of vulnerability require reinterpretation when applied to qualitative research at the end of life. We recommend that researchers and research ethics committees reconceptualize vulnerability using the domains identified in this study and consider the research context and interviewers' skills.

Managing uncertain recovery for patients nearing the end of life in hospital: a mixed-methods feasibility cluster randomised controlled trial of the AMBER care bundle.

BACKGROUND: The AMBER (Assessment, Management, Best Practice, Engagement, Recovery Uncertain) care bundle is a complex intervention used in UK hospitals to support patients with uncertain recovery. However, it has yet to be evaluated in a randomised controlled trial (RCT) to identify potential benefits or harms. The aim of this trial was to investigate the feasibility of a cluster RCT of the AMBER care bundle. METHODS: This is a prospective mixed-methods feasibility cluster RCT. Quantitative data collected from patients (or proxies if patients lack capacity) were used (i) to examine recruitment, retention and follow-up rates; (ii) to test data collection tools for the trial and determine their optimum timing; (iii) to test methods to identify the use of financial resources; and (iv) to explore the acceptability of study procedures for health professionals and patients. Descriptive statistical analyses and thematic analysis used the framework approach. RESULTS: In total, 894 patients were screened, of whom 220 were eligible and 19 of those eligible (8.6%) declined to participate. Recruitment to the control arm was challenging. Of the 728 patients screened for that arm, 647 (88.9%) were excluded. Overall, 65 patients were recruited (81.3% of the recruitment target of 80). Overall, many were elderly (≥80 years, 46.2%, n = 30, mean = 77.8 years, standard deviation [SD] = 12.3 years). Over half (53.8%) had a non-cancer diagnosis, with a mean of 2.3 co-morbidities; 24.6% patients (n = 16) died during their hospital stay and 35.4% (n = 23) within 100 days of discharge. In both trial arms, baseline IPOS subscale scores identified moderate patient anxiety (control: mean 13.3, SD 4.8; intervention: mean 13.3, SD 5.1), and howRwe identified a good care experience (control: mean 13.1, SD 2.5; intervention: mean 11.5, SD 2.1). Collecting quantitative service use and quality of life data was feasible. No patient participants regarded study involvement negatively. Focus groups with health professionals identified concerns regarding (i) the subjectivity of the intervention's eligibility criteria, (ii) the need to prognosticate to identify potential patients and (iii) consent procedures and the length of the questionnaire. CONCLUSIONS: A full trial of the AMBER care bundle is technically feasible but impractical due to fundamental issues in operationalising the intervention's eligibility criteria, which prevents optimal recruitment. Since this complex intervention continues to be used in clinical care and advocated in policy, alternative research approaches must be considered and tested. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Number (ISRCTN) Register, ISRCTN36040085 .

The views of patients with advanced cancer regarding participation in serial questionnaire studies.

Longitudinal research helps to clarify changing needs and the timing of treatments and referral but is hampered by poor recruitment and retention of participants. We explored, using semi-structured interviews in a cross-sectional design, the views and preferences of patients with advanced cancer on taking part in planned longitudinal questionnaire-based research studies. Patients with advanced lung and colorectal cancer were recruited from outpatient clinics in a London hospital. Semi-structured interviews were undertaken to explore their views about taking part in a specific future questionnaire study and their preferences regarding format. In all, 20 of 47 patients initially identified were recruited. Their preferences for the planned questionnaire study were for face-to-face interviews undertaken at home from late morning onwards with recontact at a mean of 6 weeks. Fluctuating symptom control needs could result in unexpected admission to or discharge from hospital. Developing flexible and responsive recruitment procedures is vital to retain patient participation as more than one contact might be required to successfully conclude an interview.

Hospice at home--a new service for patients with advanced HIV/AIDS: a pilot evaluation of referrals and outcomes.

Between 50 and 70% of patients with a terminal illness indicate a preference to remain at home for as long as possible until their death. Nevertheless, a much smaller percentage actually die at home in England and Wales. A new hospice-at-home service in North London for patients with HIV/AIDS is described in this report. Terminal care for HIV/AIDS patients can be provided at home by a multidisciplinary team which offers 24-hour care.

Multiprofessional palliative care education: past challenges, future issues.

Historically, health and social care professionals have described their lack of competence and confidence in many aspects of palliative care, and have recognized the need for increased educational opportunities, where new skills can be acquired and existing knowledge consolidated. Redressing these omissions has led to the development and growth of educational programs. Many of these courses have been unidisciplinary, with concomitant limitations. The adoption of a generalist approach to education has been suggested, to facilitate greater collaboration among professions and to ensure better use of resources. Course participants have greeted multiprofessional programs with enthusiasm. However, evidence of their effectiveness and impact on the delivery of palliative care to patients and their carers, although positive, remains scant. As the phenomenon of demographic aging continues, the growth of multiprofessional educational opportunities will amplify the need to scrutinize their content more closely.

Assessing the impact of delayed discharge on acute care.

This study examined the incidence of delayed discharge in three acute treatment wards. Of 118 admissions during the eight-week study period, 13.5 per cent (n = 16) were categorised as 'inappropriately located' by the study tool. The staff cited lack of rehabilitative facilities or care of the elderly facilities as reasons for patients' inappropriate stay in the acute ward. The authors recommend that healthcare professionals and social services departments liaise more closely to reduce the incidence of delayed discharge and allow these patients to return to the community whenever feasible.

Cultural meanings of pain: a qualitative study of Black Caribbean and White British patients with advanced cancer.

Pain is a common cancer-related symptom, but little research has been conducted that explores the meanings of this symptom across different ethnic groups. This study involved qualitative interviews to explore and compare the meanings of pain among 26 Black Caribbean and 19 White patients with advanced cancer. Patients were recruited from oncology outpatient clinics, a lung clinic and palliative care teams. Interview transcripts were analysed using the framework approach. A total of 23/26 Black Caribbean and 15/19 White patients reported cancer-related pain. Accounts of Black Caribbean and White patients identified pain as a 'challenge' that needed to be mastered by the individual, not necessarily by drugs and identified pain as an 'enemy' that represented an unfair attack. Two further meanings of pain emerged from Black Caribbean patients' accounts: pain as a 'test of faith' that referred to confirmation and strengthening of religious belief, and pain as a 'punishment' that was associated with wrongdoing. These meanings influenced the extent patients were able to accommodate their distress. Pain assessment needs to consider the patients' narratives that include the meanings they attribute to this symptom, and which may be governed by culture.

The needs of caregivers.

Caring for elderly mentally ill people impacts on many aspects of informal caregivers' lives. Respite care is one of the few strategies aimed directly at caregivers and its benefits have been well documented. As part of a wider strategy review of continuing care and respite care for the growing elderly population in an inner London health authority we focused specifically on the needs of caregivers and their elderly dependants with a diagnosis of dementia. A focus group was organised in order to elicit caregivers' perspectives on caring and their views on local services. This component of our overall review highlights the importance of investing further in informal caregivers who, to date, have successfully prevented a large number of admissions to continuing care facilities.

Accounts of carers' satisfaction with health care at the end of life: a comparison of first generation black Caribbeans and white patients with advanced disease.

While much research has described experiences at the end of life, no studies have explored the black Caribbean perspective. This paper compares the final year of life of first generation black Caribbeans and white patients with advanced disease in an inner London health authority, focusing on their satisfaction with service provision in both primary care and acute settings using face-to face interviews with carers of deceased patients. Of the 106 black Caribbean patients and 110 white deceased patients identified as dying during the study period 50 interviews per ethnic group were conducted with family members or close friends, a response rate of 47% and 45%. Even though examples of excellent and good care were cited, a larger proportion of negative satisfaction ratings of health care was recorded among respondents representing black Caribbean patients. This was true for all health care settings, particularly primary care, but less so for specialist palliative care nurses. However, few black Caribbean patients accessed specialist palliative care nurses or hospices. Qualitative data provided a deeper insight into the black Caribbean experience care at the end of life. We recommend that where examples of best practice in palliative care and culturally sensitive provision are evident they be extended to more health care professionals through education and training. Access to specialist palliative care services needs to be improved.

No way out: the delayed discharge of elderly mentally ill acute and assessment patients in north and south Thames regions.

We examined the characteristics of patients occupying elderly-mentally-ill acute and assessment beds in all mental health units within North and South Thames Regions; the proportion of patients defined as no longer requiring acute care (inappropriately located); and the unmet need for alternative service provision these patients required. Of the 1510 patients surveyed, 24.4% (n = 368) were defined as inappropriately located. For inappropriately located patients unable to be discharged home most (52.8%, n = 154) required residential care or nursing-home provision. A large proportion of these patients were very elderly (aged 85+ years), had dementia, and required high levels of supervision. This study indicates that purchasers, mental health service managers and social services departments should devise a more appropriate mix of inpatient and community provision. Particular emphasis needs to be placed on the greater provision of residential care and nursing homes with an appropriate skill-mix to care for this complex care group.

Ethnicity and use of acute psychiatric beds: one-day survey in north and south Thames regions.

BACKGROUND: Previous studies have shown higher rates of psychiatric admissions, compulsory admissions, and diagnosed schizophrenia in Black ethnic groups compared with other population groups. METHOD: In a point-prevalence study, demographic and clinical data were collected for adult acute and low-level secure psychiatric in-patients in all National Health Service and seven private psychiatric units in North and South Thames regions on 15 June 1994. RESULTS: A total of 3710 adult acute and 268 low-level secure psychiatric patients were surveyed; 75% of the patients were White, 16% were Black, and 4% were Asian. Analysis reveals that a high proportion of the Black population were admitted to a psychiatric unit; that Black patients are more likely to be admitted under Section; to be located in locked wards; have an inpatient diagnosis of schizophrenia; and not be registered with a general practitioner. CONCLUSIONS: These findings demonstrate the over-representation of Black ethnic groups within current psychiatric provision. The complement of services to all minority ethnic groups should be examined in terms of access, appropriateness and quality of care. Racism awareness and staff training need to be incorporated into mental health service provision as a matter of priority.