Coordination of end-of-life care for patients with lung cancer and those with advanced COPD: are there transferable lessons? A longitudinal qualitative study.

BACKGROUND: Care coordination is defined as good communication between professionals to enable access to services based on need. AIMS: To explore patients' experience of care coordination in order to inform current debates on how best to coordinate care and deliver services in end-of-life for patients with lung cancer and those with chronic obstructive pulmonary disease (COPD). METHODS: A qualitative study involving serial interviews was performed in 18 patients recruited from three hospital outpatient clinics situated in a hospital. Interviews were transcribed verbatim and data were analysed thematically. RESULTS: Data comprised 38 interviews. Patients experiencing services related to lung cancer reported good access enabled by the involvement of a keyworker. This contrasted with COPD patients' experiences of services. The keyworker coordinated care between and within clinical settings, referred patients to community palliative care services, helped them with financial issues, and provided support. CONCLUSIONS: For patients with lung cancer, the keyworker's role augmented access to various services and enabled care based on their needs. The experiences of patients with COPD highlight the importance of providing a keyworker for this group of patients in both secondary and primary care.

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.

BACKGROUND: There 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. METHODS: Our 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. RESULTS: PACE 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. CONCLUSIONS: PACE is a feasible interventional tool that has the potential to improve communication, information consistency, and family perceptions of symptom control.

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 Pearson's 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.

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.

"I will do it if it will help others:" motivations among patients taking part in qualitative studies in palliative care.

The aim of this study was to explore patients' and carers' preferences and expectations regarding their contribution to research in palliative care through the use of qualitative interviews. Data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. Both studies recorded the recruitment process, numbers of patients or carers accepting and declining, and the circumstances of interviews. Participants were asked about their motivation to participate in research. The data were analyzed by labeling patients' reflections on their motivations for participating in these studies and identifying themes. Analysis of the recruitment process revealed differential patterns in decline and acceptance of interviews by patients with different conditions and across settings. Among cancer patients, 21/51 declined; the proportion with other conditions that declined was small, and was 0/10 for patients with motor neuron disease. Motivation to participate in the studies was related to (1) altruism, (2) gratitude and concerns about care, (3) the need to have somebody to talk to, and (4) the need for information or access to services. Palliative care patients and carers were capable of deciding whether to participate in interviews and negotiating how they wanted this to happen. This strengthens the argument for patients' autonomy in deciding whether to participate in research. Patients and carers have different motivations for participation, reflecting the heterogeneity of the palliative care population. This suggests a need for ethics committees to reconsider their views and widen their perspectives on the involvement of palliative care patients and carers in research.

Is the qualitative research interview an acceptable medium for research with palliative care patients and carers?

BACKGROUND: Contradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview. METHODS: A descriptive qualitative study. The data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study. RESULTS: The interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible. CONCLUSION: The open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview.

Improving district nurses' confidence and knowledge in the principles and practice of palliative care.

AIM: This paper is a report of part of an evaluation of the impact of a national palliative care education and support programme on the knowledge and confidence of members of district nursing teams. BACKGROUND: District nursing teams are the mainstay of 'hands on' provision of care at home. In recognition of their central role, the English Department of Health commissioned a national palliative care education programme as postregistration education had been limited. METHODS: The evaluation, conducted between 2002 and 2004, had a mixed methods design. In the summative component, 1280 nurses were randomly selected from eight cancer networks to receive postal questionnaires 1 year apart, before and after the educational intervention. Changes in scores were calculated and a multiple regression analysis undertaken to identify predictors of improvement in confidence in competence and knowledge. The formative component involved qualitative interviews with a sub-sample of 39 district nurses participating in the programme. FINDINGS: Nurses who responded in both years (374/32%) were included in the analysis. There was a small statistically significant increase in confidence in palliative care competency and knowledge after participation in the educational programmes. Nurses without district nursing qualifications and who had never worked in specialist palliative care had the largest improvements in scores. Qualitative data supported these findings. CONCLUSION: The findings suggest that the education programme led to improvements in self-reported district nursing confidence in palliative care competencies and knowledge; it is likely that the baseline level of palliative care confidence in competency and knowledge has as a result been raised nationally.

Nursing the dying within a generalist caseload: a focus group study of district nurses.

BACKGROUND: Community nurses (members of UK District Nursing teams) have a key role in the provision of palliative care in the community in the UK. However, their views about delivering palliative care within their generalist workload have not been assessed. OBJECTIVES: To explore community nurses' perceptions of their palliative care role, and their provision of such care within the context of their wider generalist workload. DESIGN: Focus group study. SETTING: Four Primary Care Trusts in London, UK. PARTICIPANTS: A purposive sample of 51 community nurses. METHODS: Nine focus groups (four to seven participants in each) were conducted between 2003 and 2004. Data were analysed using the framework approach. RESULTS: We identified five broad themes. Community nurses felt they had a central role in the provision of palliative care to patients at home. Many felt this role was not recognised by other health care professionals and managers. Palliative care was identified as unpredictable and time-consuming within a pressurized context characterised by staff shortages and consequent lack of time. Whilst rewarding, palliative care took its toll on nurses' emotions, compounded by a perceived lack of formal support. Finally, undertaking palliative within a generalist workload created additional pressures for community nurses. CONCLUSIONS: The integration of palliative care into routine generalist caseloads generated workload stresses in time and emotion. Community nurses felt their palliative care role and its impact on workload was not adequately acknowledged. Palliative care specific support mechanisms and ways of working may be necessary to meet patients' and professionals' expectations of effective, compassionate care at the end of life.

'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.

Palliative care services in England: a survey of district nurses' views.

Good access to health and social services is essential to enable palliative care patients to remain and die at home. This article reports on a survey of perceptions of availability of such services by district nursing teams (651 respondents) across eight cancer networks in England. Only just over half of respondents thought GP home visits and specialist palliative care assessment were always available. Many district nurses reported, at best, only sometimes being able to access inpatient palliative care beds, respite care, Marie Curie/night sitting services or social work assessment. Wide variation in access to all services was reported between cancer networks. Equitable provision of services is essential if more patients are to be cared for and die at home, but our results indicate considerable room for improvement. Primary care trusts, cancer networks and strategic health authorities must work together to ensure minimum standards of access nationally if the recommendations of the NICE guidance on supportive and palliative care are to be achieved.

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.

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.

Palliative care or end-of-life care in advanced chronic obstructive pulmonary disease: a prospective community survey.

BACKGROUND: Calls for better end-of-life care for advanced chronic obstructive pulmonary disease (COPD) reflect the large number who die from the disease and their considerable unmet needs. AIM: To determine palliative care needs in advanced COPD. DESIGN: Cross-sectional interview study in patients' homes using structured questionnaires generated from 44 south London general practices. METHOD: One hundred and sixty-three (61% response) patients were interviewed, mean age 72 years, 50% female, with diagnosis of COPD and at least two of: forced expiratory volume in the first second (FEV(1)) <40% predicted, hospital admissions or acute severe exacerbations with COPD, long-term oxygen therapy, cor pulmonale, use of oral steroids, and being housebound. Patients with advanced cancer, severe alcohol-related or mental health problems, or learning difficulties, were excluded; 145 patients were included in the analysis. RESULTS: One hundred and twenty-eight (88%) participants reported shortness of breath most days/every day, 45% were housebound, 75% had a carer. Medical records indicated that participants were at least as severe as non-participants. Eighty-two (57%) had severe breathlessness; 134 (92%) said breathlessness was their most important problem; 31 (21%) were on suboptimal treatment; 42 (30%) who were severely affected had not been admitted to hospital in the previous 2 years; 86 of 102 who had been admitted would want admission again if unwell to the same extent. None expressed existential concerns and few discussed need in terms of end-of-life care, despite severe breathlessness and impairment. CONCLUSION: Needs in advanced COPD were considerable, with many reporting severe intractable breathlessness. Palliation of breathlessness was a priority, but discussion of need was seldom in terms of 'end-of-life care'.

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.

Roles, service knowledge and priorities in the provision of palliative care: a postal survey of London GPs.

OBJECTIVES: To explore general practitioners' (GPs) current involvement in and attitudes towards the provision of palliative care in primary care. METHODS: Postal survey of 356 London-based GPs, assessing attitudes towards palliative care provision, district nursing and specialist palliative care services, and priorities for future service development. RESULTS: Currently, 65% of GPs were providing palliative care to patients on their list; 72% agreed or strongly agreed palliative care was a central part of their role; and 27% wanted to hand care over to specialists. Most GPs (66%) disagreed with the statement that 'palliative care is mainly district nursing (DN) work'. Many were unaware of out-of-hours DN and specialist palliative care services. Multi-variable analysis found four GP characteristics--larger practice size, more years experience as a GP, receipt of palliative care education, and current provision of palliative care--were associated with agreement that palliative care was central to a GP's role. CONCLUSION: A minority of NHS GPs in London would rather have no involvement in palliative care in primary care. Knowledge of current services for palliative care is generally poor among GPs. These findings highlight potential gaps in services, particularly in small practices. Specialists will need to consider these factors in working with GPs to develop primary palliative care and to enable greater access to specialist palliative care.

Using and providing out-of-hours services: can patients and GPs agree?

Increasing demand for primary care outside the normal working week has come into conflict with the reluctance of doctors to continue to bear 'intolerable' workloads and carry 24-h responsibility for their patients. These developments have led to widespread changes in the organization of out-of-hours primary care. This paper provides new findings on differing perceptions of use of out-of-hours primary care (general medical) services in Great Britain. By drawing on comparative data from an audit and research study on out-of-hours demand involving 25 south-east London practices, the longitudinal perspective of patients and cross sectional perspective of GPs have been identified which can lead to miscommunication during a short out-of-hours consultation. In order to achieve more effective and efficient use and provision of out-of-hours general medical services, a consensus must be developed over what emergency primary care constitutes, and the provider perspective become more accommodating in defining 'appropriate' use. Greater emphasis must also be placed on multidisciplinary working out-of-hours, to enable a more 'appropriate' response to the wide-ranging nature of demand for general medical services.

Continuity within primary palliative care: an audit of general practice out-of-hours co-operatives.

BACKGROUND: The transfer of information between general practitioners (GPs) and their out-of-hours providers on vulnerable patient groups is essential to ensure continuity of care. This will be critical when, in 2006, NHS Direct will triage and route all out-of-hours calls. This study investigates the current use of information handover systems for palliative care patients within four out-of-hours co-operatives. METHODS: Paper records of all 13,460 contacts during August 2002 were scrutinized. Using a standardized data extraction form we recorded details on all palliative or terminal contacts, and the existence of information handover. RESULTS: Across the four co-operatives, 2.1 per cent of all calls were from palliative care patients; co-operatives held handover information for between one (1.2 per cent) and 13 (32.5 per cent) of these patients. CONCLUSION: The systems in place to alert these co-operatives to the needs of palliative care patients are currently under-utilized. As services move towards an integrated approach, scrutiny of information transfer systems and encouragement of GPs and district nurses to update information, may help to ensure better continuity of care

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.