Cathy Shipman

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.

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.

The experiences of older adults in the community dying from cancer and non-cancer causes: a national survey of bereaved relatives

BACKGROUND there is limited understanding of symptoms and care in the last few months of life for adults dying from causes other than cancer. OBJECTIVE the aim of the study is to compare the experiences in the community in the last 3 months of life of older adults dying from cancer and non-cancer causes. DESIGN the study employed a retrospective cross-sectional survey of bereaved relatives. SETTING the survey took place across eight cancer networks in England. SUBJECTS a random sample of 1,266 adults who registered a death occurring in someone aged 65 and over between August 2002 and February 2004 was drawn. METHODS VOICES (Views of Informal Carers-Evaluation of Services) questionnaires were sent to sampled informants by the Office for National Statistics 3-9 months after the registration of the death. Differences in the reported experiences of cancer and non-cancer decedents in symptoms, treatment and care were assessed using Pearsons chi square test. RESULTS cancer decedents were significantly more likely than non-cancer decedents to have had pain (93 vs 79%, P < 0.001), nausea and vomiting (62 vs 40%, P < 0.001) and constipation (74 vs 66%, P = 0.03), whilst a greater proportion of non-cancer decedents experienced breathlessness (74 vs 65%, P = 0.006). Across both groups, less than half of the decedents were reported to have received treatment which completely relieved their symptoms some or all of the time. There were significant variations in the receipt of district nursing, general practitioner care and other health and social care and the reported quality of this care, for decedents dying of cancer and non-cancer causes. Further, informants for cancer deaths reported greater satisfaction with support received. CONCLUSIONS there are important differences in the reported experiences of older adults dying from cancer and non-cancer causes in the last months of life, independent of age.

Coordination of care for individuals with advanced progressive conditions: a multi-site ethnographic and serial interview study

BACKGROUND Coordination of care for individuals with advanced progressive conditions is frequently poor. AIM To identify how care is coordinated in generalist settings for individuals with advanced progressive conditions in the last year of life. DESIGN AND SETTING A mixed methods study of three UK generalist clinical settings producing three parallel case studies: an acute admissions unit in a regional hospital, a large general practice, and a respiratory outpatient service. METHOD Ethnographic observations in each setting, followed by serial interviews of patients with advanced progressive conditions and their family carers in the community. A spectrum of clinicians and healthcare workers were also interviewed. RESULTS Ethnographic observations were conducted for 22 weeks. A total of 56 patients, 25 family carers and 17 clinicians yielded 198 interviews. Very few participants had been identified for a palliative approach. Rapid throughput of hospital patients and time pressures in primary care hindered identification of palliative care needs. Lack of care coordination was evident during emergency admissions and discharges. Patient, families, and professionals identified multiple problems relating to lack of information, communication, and collaboration at care transitions. Family carers or specialist nurses, where present, usually acted as the main care coordinators. CONCLUSION Care is poorly coordinated in generalist settings for patients in the last year of life, although those with cancer have better coordinated care than other patients. A model to improve coordination of care for all individuals approaching the end of life must ensure that patients are identified in a timely way, so that they can be assessed and their care planned accordingly.

‘My body's falling apart.’ Understanding the experiences of patients with advanced multimorbidity to improve care: serial interviews with patients and carers

Objective Multimorbidity is increasingly common in the last year of life, and associated with frequent hospital admissions. The epidemiology is well described, but patient perspectives are less understood. We report the experiences and perceptions of people with advanced multimorbidity to inform improvements in palliative and end-of-life care. Design Multicentre study including serial, multiperspective interviews with patients and their family carers; an interpretive analysis of experiences and understanding of living with advanced multimorbidity. Participants We recruited patients and their family carers using established UK clinical guidance for the identification of people anticipated to be in their last year of life. Settings An acute admissions unit in a Scottish regional hospital; a large English general practice; a London respiratory outpatient clinic. Results We analysed 87 interviews with 37 patients and 17 carers. They struggled with multiple changing medications, multiple services better aligned with single conditions such as cancer, and a lack of coordination and continuity of care. Family carers spoke of physical, mental and emotional exhaustion and feeling undervalued by professionals. Patients and carers frequently saw deteriorating health as part of ‘growing old’. Many used a ‘day-to-day’ approach to self-management that hindered engagement with advance care planning and open discussions about future care. ‘Palliative care’ and ‘dying soon’ were closely related concepts for many patients, carers and professionals, so rarely discussed. Conclusions Patients with advanced multimorbidity received less care than their illness burden would appear to merit. Some people did restrict their interactions with care providers to preserve autonomy, but many had a limited understanding of their multiple conditions, medications and available services, and found accessing support impersonal and challenging. Greater awareness of the needs associated with advanced multimorbidity and the coping strategies adopted by these patients and carers is necessary, together with more straightforward access to appropriate care.

Access to care in advanced COPD: factors that influence contact with general practice services.

AIMS To explore factors that influence the use of general practice services by people with advanced COPD. METHOD An exploratory qualitative study using in-depth interviews at home with 16 patients who had advanced COPD, recruited through general practices in south-east London. The Framework Approach was used to analyse interview transcripts. RESULTS Interviewees had a mean age of 70 and a mean FEV1 of 24% predicted. All reported severe breathlessness. They contacted general practices for routine, urgent and emergency care. Contact was influenced by perceptions of ease of access, quality of relationship with their general practitioner (GP), and perceived disease severity and threat. Some patients wanted to avoid bothering the doctor or found travelling to the surgery too difficult. CONCLUSION Factors other than need influenced patterns of health service use. Expectations of difficulty in access, and poor relationships with their GP, may have delayed help-seeking in severe acute exacerbations.

Building bridges in palliative care: evaluating a GP Facilitator programme

The objective of this study was to evaluate the impact of the Macmillan GP Facilitator Programme in Palliative Care on the knowledge, attitudes and confidence in symptom control of general practitioners (GPs), communication with patients and out-of-hours practice. GP Facilitators work on average for two sessions a week with practices in their locality. The design included a before and after study, with geographical controls matched on type of area (inner city, urban and rural) and broadly on Jarman scores using postal questionnaires sent to GPs. Scores measured change in GP awareness, attitudes and practice over two years of the intervention, derived from Likert scale responses to the postal questionnaires. Although overall few significant results were found, we did identify an increase in the use of palliative care guidelines in Facilitator districts, together with an increase in awareness of day care. The programme was associated with increased positive attitudes towards specialist palliative care services and results suggested increased satisfaction with out-of-hours services for patients. No change was found for confidence in symptom control and communication over diagnosis with cancer patients was less than in control districts. The design also incorporated a qualitative component, and from this we found the Facilitator programme to be popular with local GPs who valued the support of a colleague who knew the demands and constraints of general practice. In conclusion, we have demonstrated an impact of the GP Facilitator programme on GP awareness of, use and increased positive attitudes towards specialist palliative care services. By improving communication between primary and specialist palliative care, the programme should contribute substantially to improved care of the dying at home.

Development and evaluation of the feasibility and effects on staff, patients, and families of a new tool, the Psychosocial Assessment and Communication Evaluation (PACE), to improve communication and palliative care in intensive care and during clinical uncertainty

BackgroundThere are widespread concerns about communication and support for patients and families, especially when they face clinical uncertainty, a situation most marked in intensive care units (ICUs). Therefore, we aimed to develop and evaluate an interventional tool to improve communication and palliative care, using the ICU as an example of where this is difficult.MethodsOur design was a phase I-II study following the Medical Research Council Guidance for the Development and Evaluation of Complex Interventions and the (Methods of Researching End-of-life Care (MORECare) statement. In two ICUs, with over 1900 admissions annually, phase I modeled a new intervention comprising implementation training and an assessment tool. We conducted a literature review, qualitative interviews, and focus groups with 40 staff and 13 family members. This resulted in the new tool, the Psychosocial Assessment and Communication Evaluation (PACE). Phase II evaluated the feasibility and effects of PACE, using observation, record audit, and surveys of staff and family members. Qualitative data were analyzed using the framework approach. The statistical tests used on quantitative data were t-tests (for normally distributed characteristics), the χ2 or Fisher’s exact test (for non-normally distributed characteristics) and the Mann–Whitney U-test (for experience assessments) to compare the characteristics and experience for cases with and without PACE recorded.ResultsPACE provides individualized assessments of all patients entering the ICU. It is completed within 24 to 48 hours of admission, and covers five aspects (key relationships, social details and needs, patient preferences, communication and information status, and other concerns), followed by recording of an ongoing communication evaluation. Implementation is supported by a training program with specialist palliative care. A post-implementation survey of 95 ICU staff found that 89% rated PACE assessment as very or generally useful. Of 213 family members, 165 (78%) responded to their survey, and two-thirds had PACE completed. Those for whom PACE was completed reported significantly higher satisfaction with symptom control, and the honesty and consistency of information from staff (Mann–Whitney U-test ranged from 616 to 1247, P-values ranged from 0.041 to 0.010) compared with those who did not.ConclusionsPACE is a feasible interventional tool that has the potential to improve communication, information consistency, and family perceptions of symptom control.

The real-world problem of care coordination: a longitudinal qualitative study with patients living with advanced progressive illness and their unpaid caregivers

Objectives To develop a model of care coordination for patients living with advanced progressive illness and their unpaid caregivers, and to understand their perspective regarding care coordination. Design A prospective longitudinal, multi-perspective qualitative study involving a case-study approach. Methods Serial in-depth interviews were conducted, transcribed verbatim and then analyzed through open and axial coding in order to construct categories for three cases (sites). This was followed by continued thematic analysis to identify underlying conceptual coherence across all cases in order to produce one coherent care coordination model. Participants Fifty-six purposively sampled patients and 27 case-linked unpaid caregivers. Settings Three cases from contrasting primary, secondary and tertiary settings within Britain. Results Coordination is a deliberate cross-cutting action that involves high-quality, caring and well-informed staff, patients and unpaid caregivers who must work in partnership together across health and social care settings. For coordination to occur, it must be adequately resourced with efficient systems and services that communicate. Patients and unpaid caregivers contribute substantially to the coordination of their care, which is sometimes volunteered at a personal cost to them. Coordination is facilitated through flexible and patient-centered care, characterized by accurate and timely information communicated in a way that considers patients’ and caregivers’ needs, preferences, circumstances and abilities. Conclusions Within the midst of advanced progressive illness, coordination is a shared and complex intervention involving relational, structural and information components. Our study is one of the first to extensively examine patients’ and caregivers’ views about coordination, thus aiding conceptual fidelity. These findings can be used to help avoid oversimplifying a real-world problem, such as care coordination. Avoiding oversimplification can help with the development, evaluation and implementation of real-world coordination interventions for patients and their unpaid caregivers in the future.

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.