Bill Noble

Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals.

Objectives: To determine the problems and issues of accessing specialist palliative care by patients, informal carers and health and social care professionals involved in their care in primary and secondary care settings. Data sources: Eleven electronic databases (medical, health-related and social science) were searched from the beginning of 1997 to October 2003. Palliative Medicine (January 1997–October 2003) was also hand-searched. Study selection: Systematic search for studies, reports and policy papers written in English. Data extraction: Included papers were data-extracted and the quality of each included study was assessed using 10 questions on a 40-point scale. Results: The search resulted in 9921 hits. Two hundred and seven papers were directly concerned with symptoms or issues of access, referral or barriers and obstacles to receiving palliative care. Only 40 (19%) papers met the inclusion criteria. Several barriers to access and referral to palliative care were identified including lack of knowledge and education amongst health and social care professionals, and a lack of standardized referral criteria. Some groups of people failed to receive timely referrals e.g., those from minority ethnic communities, older people and patients with nonmalignant conditions as well as people that are socially excluded e.g., homeless people. Conclusions: There is a need to improve education and knowledge about specialist palliative care and hospice care amongst health and social care professionals, patients and carers. Standardized referral criteria need to be developed. Further work is also needed to assess the needs of those not currently accessing palliative care services.

Extent of palliative care need in the acute hospital setting: A survey of two acute hospitals in the UK:

Background: In common with international health policy, The End of Life Care Strategy for England has highlighted the delivery of high quality palliative care in the acute hospital setting as an area of priority. Aim: The aim of this study was to explore the extent of palliative care need in the acute hospital setting, and to explore agreement between different sources in the identification of patients with palliative care need. Design: A cross-sectional survey of palliative care need was undertaken in two UK acute hospitals. Hospital case notes were examined for evidence of palliative care need according to Gold Standards Framework (GSF) prognostic indicator criteria. Medical and nursing staff were asked to identify patients with palliative care needs. Patients (or consultees) completed assessments of palliative care need. Participants: Of a total in-patient population of 1359, complete datasets were collected for 514 patients/consultees. Results: 36.0% of patients were identified as having palliative care needs according to GSF criteria. Medical staff identified 15.5% of patients as having palliative care needs, and nursing staff 17.4% of patients. Patient self-report data indicated that 83.2% of patients meeting GSF criteria had palliative care needs. Conclusion: The results reveal that according to the GSF prognostic guide, over a third of hospital in-patients meet the criteria for palliative care need. Consensus between medical staff, nursing staff and the GSF was poor regarding the identification of patients with palliative care needs. This has significant implications for patient care, and draws into question the utility of the GSF in the hospital setting.

The use of cognitive interviewing methodology in the design and testing of a screening tool for supportive and palliative care needs

Goals of workThe authors describe the use of cognitive interviewing methodology in the development of a new supportive and palliative care screening measure to identify the specialist supportive and palliative care needs of patients with an advanced illness.Materials and methodsA draft screening measure was developed by literature reviewing and consultation with patients, carers and health and social care professionals. Using this draft, cognitive interviews were conducted with six professionals and one consumer using the ‘thinking aloud technique’ to assess the perception, usefulness and interpretation of each question on the measure. The focus of these interviews was to identify unclear words or phrases and to explore how the questions worked in eliciting a response. A content analysis of the interviews was used to identify problems with the text, phrasing and format of the questions and accompanying responses.Main resultsThe authors found the technique to be useful in identifying jargon or confusing questions. A number of perspectives were taken into account by speaking to health and social care professionals in primary care and secondary care who would be offering the measure to future patients.ConclusionsThe most sensitive questions were highlighted, and this enabled the researchers to consider how these should be asked and responded to in subsequent versions of the measure. The measure was re-drafted in light of these comments.

What progress has been made towards implementing national guidance on end of life care? A national survey of UK general practices:

The objectives of this study were to establish the extent to which UK primary care has adopted recommended practices on supportive and palliative care of adults with cancer, and to relate this to participation in national initiatives. We conducted a cross-sectional postal questionnaire survey of a random sample of UK general practices. In total, 60.0% of practices (2096 of 3495) responded to the survey: 61.5% reported involvement with the Gold Standards Framework (GSF); 24.4% with the Liverpool or other End of Life Care Pathway; 12.3%, with the Preferred Place of Care (PPC) initiative; and 8.4% with Advance Care Planning (ACP). Participation in GSF contributed most to the variance in practice organization scores; and practice organization scores contributed most to the variance in clinical care scores. Participation in ACP or PPC, and higher clinical care scores were associated with an increased likelihood of reported high rates of death at home for cancer patients. Our findings appear to support the role of national initiatives in improving the quality of end-of-life care delivery in general practice. A population-based study would be required to assess the effect of end of life care on clinical outcomes and patient or carer experience.

Improving the delivery of palliative care in general practice: an evaluation of the first phase of the Gold Standards Framework.

Background: The Gold Standards Framework (GSF) was developed to improve the delivery of palliative care in general practice. Aim: The aim of the study was to evaluate the first phase of GSF in terms of its acceptability to primary care teams, effectiveness in changing practice and professionals’ views on the consequences for patient care. Methods: A prospective longitudinal comparative survey of 12 participating, 12 matched and 18 other practices included focus groups and questionnaires. Results: Participating practices reported that the GSF was acceptable. They also reported more standards successfully achieved than matched practices. Registers, team meetings and co-ordinated care were thought to have improved communication, teamwork, patient identification, assessment and care planning. Conclusions: This small study suggests that the GSF appears to be acceptable and its early introduction to a few teams appears to have changed practice. Participants were positive about the effect on care. An evaluation of national uptake and further research into clinical outcomes is required.

What is the extent of potentially avoidable admissions amongst hospital inpatients with palliative care needs

BackgroundThere is clear evidence that the full range of services required to support people dying at home are far from being implemented, either in England or elsewhere. No studies to date have attempted to identify the proportion of hospital admissions that could have been avoided amongst patients with palliative care needs, given existing and current local services. This study aimed to examine the extent of potentially avoidable admissions amongst hospital patients with palliative care needs.MethodsA cross sectional survey of palliative care needs was undertaken in two acute hospitals in England. Appropriateness of admission was assessed by two Palliative Medicine Consultants using the following data collected from case notes: reasons for admission; diagnosis and co-morbidities; age and living arrangements; time and route of admission; medical and nursing plan on admission; specialist palliative care involvement; and evidence of cognitive impairment.ResultsA total of 1359 inpatients were present in the two hospitals at the time of the census. Of the 654 consenting patients/consultees, complete case note data were collected for 580 patients; the analysis in this paper relates to these 580 patients. Amongst 208 patients meeting diagnostic and prognostic criteria for palliative care need in two acute settings in England, only 6.7% were identified as ‘potentially avoidable’ hospitalisations. These patients had a median age of 84. Half of the patients lived in residential or nursing homes and it was concluded that most could have received care in this setting in place of hospital.ConclusionOur findings challenge assumptions that, within the existing configuration of palliative and end of life health and social care services, patients with palliative care needs experience a high level of potentially avoidable hospitalisations.

Symptom burden, palliative care need and predictors of physical and psychological discomfort in two UK hospitals.

BackgroundThe requirement to meet the palliative needs of acute hospital populations has grown in recent years. With increasing numbers of frail older people needing hospital care as a result of both malignant and non-malignant conditions, emphasis is being placed upon understanding the physical, psychological and social burdens experienced by patients. This study explores the extent of burden in two large UK hospitals, focusing upon those patients who meet palliative care criteria. Furthermore, the paper explores the use of palliative services and identifies the most significant clinical diagnostic and demographic factors which determine physical and psychological burden.MethodsTwo hospital surveys were undertaken to identify burden using the Sheffield Profile for Assessment and Referral to Care (SPARC). The Gold Standards Framework (GSF) is used to identify those patients meeting palliative care criteria. Participants were identified as being in-patients during a two-week data collection phase for each site. Data was gathered using face-to-face interviews or self-completion by patients or a proxy. Descriptive analyses highlight prevalence and use of palliative care provision. Binary logistic regression assesses clinical diagnostic predictor variables of physical and psychological burden.ResultsThe sample consisted of 514 patients and elevated physical, psychological and social burden is identified amongst those meeting palliative care criteria (n = 185). Tiredness (34.6%), pain (31.1%), weakness (28.8%) and psychological discomfort (low mood 19.9%; anxiety 16.1%) are noted as being prevalent. A small number of these participants accessed Specialist Palliative Care (8.2%). Dementia was identified as a predictor of physical (OR 3.94; p < .05) and psychological burden (OR 2.88; p < .05), being female was a predictor of psychological burden (OR 2.00; p < .05).ConclusionThe paper highlights elevated levels of burden experienced by patients with palliative care requirements. Moreover, the paper also indicates that a large proportion of such patients are not in receipt of palliative approaches to their care. Furthermore, the paper identifies that those with non-malignant illnesses, especially dementia, may experience high levels of physical and psychological burden.

Holistic assessment of supportive and palliative care needs: the evidence for routine systematic questioning

There is evidence to suggest that patients with cancer and other non-malignant chronic progressive illnesses can experience distressing symptoms, or concerns, which can often remain unrecognised. There is little disagreement that routine systematic questioning is useful in identifying supportive or palliative care needs that would otherwise not be identified. The purpose of this article is to provide an overview of holistic needs assessment in the fields of supportive and palliative care and to present evidence of the value of routine systematic questioning. Systematic questioning allows needs to be identified and addressed. There is at present no standardised systematic, evidence-based holistic approach to screening patients for supportive and palliative care needs.

Can comprehensive specialised end-of-life care be provided at home? Lessons from a study of an innovative consultant-led community service in the UK

The Midhurst Macmillan Specialist Palliative Care Service (MMSPCS) is a UK, medical consultant-led, multidisciplinary team aiming to provide round-the-clock advice and care, including specialist interventions, in the home, community hospitals and care homes. Of 389 referrals in 2010/11, about 85% were for cancer, from a population of about 155 000. Using a mixed method approach, the evaluation comprised: a retrospective analysis of secondary-care use in the last year of life; financial evaluation of the MMSPCS using an Activity Based Costing approach; qualitative interviews with patients, carers, health and social care staff and MMSPCS staff and volunteers; a postal survey of General Practices; and a postal survey of bereaved caregivers using the MMSPCS. The mean cost is about 3000 GBP (3461 EUR) per patient with mean cost of interventions for cancer patients in the last year of life 1900 GBP (2192 EUR). Post-referral, overall costs to the system are similar for MMSPCS and hospice-led models; however, earlier referral avoided around 20% of total costs in the last year of life. Patients and carers reported positive experiences of support, linked to the flexible way the service worked. Seventy-one per cent of patients died at home. This model may have application elsewhere.

Legalising assisted dying puts vulnerable patients at risk and doctors must speak up

If proposed legislation on assisted dying involves doctors, then we must make our reservations known, says Bill Noble