Stephen Barclay

Improving generalist end of life care: national consultation with practitioners, commissioners, academics, and service user groups

Objective To identify major concerns of national and local importance in the provision, commissioning, research, and use of generalist end of life care. Design A national consultation and prioritising exercise using a modified form of the nominal group technique. Participants Healthcare practitioners, commissioners, academics, and representatives of user and voluntary groups. Setting Primary and secondary care, specialist palliative care, and academic and voluntary sectors in England and Scotland. Results 74% of those invited (210/285) participated. The stage of life to which “end of life care” referred was not understood in a uniform way. Perceptions ranged from a period of more than a year to the last few days of life. Prominent concerns included difficulties in prognosis and the availability of adequate support for patients with advanced non-malignant disease. Generalists in both primary and secondary care were usually caring for only a few patients approaching the end of life at any one time at a point in time. It was therefore challenging to maintain skills and expertise particularly as educational opportunities were often limited. End of life care took place among many other competing and incentivised activities for general practitioners in the community. More needs to be known about models of end of life care and how these can be integrated in a generalist’s workload. A greater evidence base is needed about the effectiveness and application of current tools such as the gold standards framework and Liverpool care pathway and about models of palliation in patients with diseases other than cancer. Conclusions Definitions of end of life care need clarification and standardisation. A greater evidence base is needed to define models of good practice together with a commitment to provide education and training and adequate resources for service provision. More needs to be known about the context of provision and the influence of competing priorities and incentives.

Development of Prognosis in Palliative care Study (PiPS) predictor models to improve prognostication in advanced cancer: prospective cohort study

Objective To develop a novel prognostic indicator for use in patients with advanced cancer that is significantly better than clinicians’ estimates of survival. Design Prospective multicentre observational cohort study. Setting 18 palliative care services in the UK (including hospices, hospital support teams, and community teams). Participants 1018 patients with locally advanced or metastatic cancer, no longer being treated for cancer, and recently referred to palliative care services. Main outcome measures Performance of a composite model to predict whether patients were likely to survive for “days” (0-13 days), “weeks” (14-55 days), or “months+” (>55 days), compared with actual survival and clinicians’ predictions. Results On multivariate analysis, 11 core variables (pulse rate, general health status, mental test score, performance status, presence of anorexia, presence of any site of metastatic disease, presence of liver metastases, C reactive protein, white blood count, platelet count, and urea) independently predicted both two week and two month survival. Four variables had prognostic significance only for two week survival (dyspnoea, dysphagia, bone metastases, and alanine transaminase), and eight variables had prognostic significance only for two month survival (primary breast cancer, male genital cancer, tiredness, loss of weight, lymphocyte count, neutrophil count, alkaline phosphatase, and albumin). Separate prognostic models were created for patients without (PiPS-A) or with (PiPS-B) blood results. The area under the curve for all models varied between 0.79 and 0.86. Absolute agreement between actual survival and PiPS predictions was 57.3% (after correction for over-optimism). The median survival across the PiPS-A categories was 5, 33, and 92 days and survival across PiPS-B categories was 7, 32, and 100.5 days. All models performed as well as, or better than, clinicians’ estimates of survival. Conclusions In patients with advanced cancer no longer being treated, a combination of clinical and laboratory variables can reliably predict two week and two month survival.

Does hospital at home for palliative care facilitate death at home? Randomised controlled trial

Abstract Objective: To evaluate the impact on place of death of a hospital at home service for palliative care. Design: Pragmatic randomised controlled trial. Setting: Former Cambridge health district. Participants: 229 patients referred to the hospital at home service; 43 randomised to control group (standard care), 186 randomised to hospital at home. Intervention: Hospital at home versus standard care. Main outcome measures: Place of death. Results: Twenty five (58%) control patients died at home compared with 124 (67%) patients allocated to hospital at home. This difference was not significant; intention to treat analysis did not show that hospital at home increased the number of deathsat home. Seventy three patients randomised to hospital at home were not admitted to the service. Patients admitted to hospital at home were significantly more likely to die at home (88/113; 78%) than control patients. It is not possible to determine whether this was due to hospital at home itself or other characteristics of the patients admitted to the service. The study attained less statistical power than initially planned. Conclusion: In a locality with good provision of standard community carewe could not show that hospital at home allowed more patients to die at home, although neither does the study refute this. Problems relating to recruitment, attrition, and the vulnerability of the patient group make randomised controlled trials in palliative care difficult. Whilethese difficulties have to be recognised they are not insurmountable with the appropriateresourcing and setting. Key messages Terminally ill patients allocated to hospital at home were no more likely to die at home than patients receiving standard care Although the subsample of patients actually admitted to hospital at home did show a significant increase in likelihood of dying at home, whether this was due to theservice itself or the characteristics of patients admitted to hospital at home could not be determined The need to balance ideal research design against the realities of evaluation of palliative care had the effect that the trial achieved less statistical power than originally planned Particular problems were that many patients failed to receive the allocatedintervention because of the unpredictable nature of terminal illness, inclusion of other service input alongside hospital at home, and the wide range of standard care available The trial illustrated problems associated with randomised controlled trialsin palliative care, none of which are insurmountable but which require careful consideration and resourcing before future trials are planned

Do the elderly have a voice? Advance care planning discussions with frail and older individuals: a systematic literature review and narrative synthesis

Background Recent years have seen marked improvements in end-of-life care, however concerns have been expressed that services are focused on the needs of patients with cancer. This review focuses on conversations about end-of-life care with frail and older people who have no main overriding diagnosis who are estimated to account for around 40% of deaths. Aim To investigate the attitudes of the public and healthcare professionals to advance care planning discussions with frail and older people. Design and setting Systematic literature review and narrative synthesis. Method Articles that related to frail or older individuals and either advance care plans or discussions on end-of-life care were included. Studies of specific conditions or that focused on prognosis, capacity, or resuscitation decisions were excluded. Results While a significant minority of frail older individuals would find them unwelcome, the majority would appreciate the chance to discuss end-of-life care, yet most do not have this opportunity. Attitudes to the timing of these discussions were variable, but most perceived the risk of leaving them too late. Most doctors believed it was their professional responsibility to initiate discussions, but felt limited by time pressures and the absence of a precipitating event. A wide range of barriers were identified including the reluctance of family members to discuss end-of-life care, the passive expectation that someone else would decide on an individual’s behalf, and significant uncertainty concerning future illness and decline. Conclusion The marked disparity between the majority of older individuals who would like the opportunity to discuss their end-of-life care and the minority that currently have this opportunity raises important questions if the wishes of this large group in society are to be respected. The challenge is to find effective ways of encouraging dialogue and choice within the constraints of the current healthcare systems and personal circumstances.

Educational opportunities in palliative care: what do general practitioners want?

It is important to support general practitioners (GPs) in maintaining and developing their palliative care skills as most of the final year of a patients life is spent at home under the care of the primary health care team. The training needs and uptake of GPs have been explored, but little is known about how GP educational preferences vary. The aim of this study was to explore the current educational preferences of GPs in different geographical locations as part of an evaluation of an educational intervention. The methods used included postal questionnaires sent to 1061 GPs. Results from 640 (60%) of GPs revealed that half (51%) wanted education in symptom control for non-cancer patients. More inner-city GPs wanted education in opiate prescribing (43%), controlling nausea and vomiting (45%), and using a syringe driver (38%) than their urban and rural colleagues (26%, 29% and 21%, respectively). Increased educational preference and increased difficulty in accessing information was associated with reduced confidence in symptom control. To maximize educational uptake it will be important for educational strategies to be developed and targeted according to variations in demand, and in particular to respond to the need for palliative care education in symptom control for patients suffering from advanced non-malignant disease.

Medical professionalism: conflicting values for tomorrow's doctors.

BackgroundNew values and practices associated with medical professionalism have created an increased interest in the concept. In the United Kingdom, it is a current concern in medical education and in the development of doctor appraisal and revalidation.ObjectiveTo investigate how final year medical students experience and interpret new values of professionalism as they emerge in relation to confronting dying patients and as they potentially conflict with older values that emerge through hidden dimensions of the curriculum.MethodsQualitative study using interpretative discourse analysis of anonymized student reflective portfolios. One hundred twenty-three final year undergraduate medical students (64 male and 59 female) from the University of Cambridge School of Clinical Medicine supplied 116 portfolios from general practice and 118 from hospital settings about patients receiving palliative or end of life care.ResultsProfessional values were prevalent in all the portfolios. Students emphasised patient-centered, holistic care, synonymous with a more contemporary idea of professionalism, in conjunction with values associated with the ‘old’ model of professionalism that had not be directly taught to them. Integrating ‘new’ professional values was at times problematic. Three main areas of potential conflict were identified: ethical considerations, doctor-patient interaction and subjective boundaries. Students explicitly and implicitly discussed several tensions and described strategies to resolve them.ConclusionsThe conflicts outlined arise from the mix of values associated with different models of professionalism. Analysis indicates that ‘new’ models are not simply replacing existing elements. Whilst this analysis is of accounts from students within one UK medical school, the experience of conflict between different notions of professionalism and the three broad domains in which this conflict arises are relevant in other areas of medicine and in different national contexts.

Having the difficult conversations about the end of life.

Clinicians need to create repeated opportunities for patients to talk about their future and end of life care, guided by the patient as to timing, pace, and content of such talks, and respecting the wishes of those who do not want to discuss such matters

The oldest old in the last year of life: population-based findings from Cambridge city over-75s cohort study participants aged 85 and older at death.

OBJECTIVES: To characterize people of advanced old age in their last year of life and compare those dying in their late 80s with those dying aged 90 and older to inform policy and planning.

An uncertain future: The unchanging views of care home residents about living and dying

Background: Older people living in a care home have a limited life expectancy, and care homes are an important setting for end-of-life care provision. Aim: This research aimed to explore the views, experiences and expectations of end-of-life care among care home residents to understand if key events or living in a residential environment influenced their views. Design: The research used a prospective design. The paper draws on the qualitative interviews of 63 care home residents who were interviewed up to three times over a year. This was a sub-sample of the larger data set of 121 care home residents. Setting/Participants: The residents were recruited from six care homes (providing personal care with no on-site nursing) in the UK. Results: Four main themes were identified; Living in the Past, Living in the Present, Thinking about the Future and Actively Engaged with planning the future. Many residents said they had not spoken to the care staff about end-of-life care; many assumed their family or General Practitioner would take responsibility. Conclusions: Core to the older person’s ability to discuss end-of-life care is their acceptance of being in a care home, the involvement of family members in making decisions and the extent to which they believed they could influence decision making within their everyday lives. Advance care plans should document ongoing dialogue. These findings can inform how primary health and palliative care services introduce, discuss and tailor existing frameworks and programmes of end-of-life care.

Place of death and end-of-life transitions experienced by very old people with differing cognitive status: Retrospective analysis of a prospective population-based cohort aged 85 and over

Background: Despite fast-growing ‘older old’ populations, ‘place of care’ trajectories for very old people approaching death with or without dementia are poorly described and understood. Aim: To explore end-of-life transitions of ‘older old’ people across the cognitive spectrum. Design: Population-based prospective cohort (United Kingdom) followed to death. Setting/participants: Mortality records linked to 283 Cambridge City over-75s Cohort participants’ cognitive assessments <1 year before dying aged ≥85 years. Results: Overall, 69% were community dwelling in the year before death; of those with severe cognitive impairment 39% were community dwelling. Only 6% subsequently changed their usual address. However, for 55% their usual address on death registration was not their place of death. Dying away from the ‘usual address’ was associated with cognition, overall fewer moving with increasing cognitive impairment – cognition intact 66%, mildly/moderately impaired 55% and severely impaired 42%, trend p = 0.003. This finding reflects transitions being far more common from the community than from institutions: 73% from the community and 28% from institutions did not die where last interviewed (p < 0.001). However, severely cognitively impaired people living in the community were the most likely group of all to move: 80% (68%−93%). Hospitals were the most common place of death except for the most cognitively impaired, who mostly died in care homes. Conclusion: Most very old community-dwelling individuals, especially the severely cognitively impaired, died away from home. Findings also suggest that long-term care may play a role in avoidance of end-of-life hospital admissions. These results provide important information for planning end-of-life services for older people across the cognitive spectrum, with implications for policies aimed at supporting home deaths. MeSH Terms: Cognitive impairment, Dementia, Aged, 80 and over, Aged, frail elderly, Patient Transfer, Residential characteristics, Homes for the aged, Nursing Homes, Delivery of Health Care, Terminal care Other key phrases: Older old, Oldest old, Place of death, Place of care, End-of-life care.