Dying at home the Midhurst way.

Ensuring high quality of care for dying patients and their families is a challenge for both primary and specialist palliative care services throughout the UK. A model of a consultant-led palliative care community team was set up following the closure of a specialist palliative care inpatient unit in Midhurst, with the aim of providing that same level of care to patients in their own homes, care homes and community hospitals. It works closely with primary care to enhance community services and with secondary care to enable rapid discharge from hospital to the community. Anticipatory prescribing, advanced care planning and education of social care and nursing home staff are also key aspects of the service. The Macmillan Midhurst Service costs an average of less than £3,000 per patient and enables 85% of referred patients to die in their preferred place. Evaluations of the service have highlighted benefits to patients and families as well as cost reductions to the NHS of around 20% when patients are referred early.

Implementation of a metastatic malignancy of unknown primary origin service led by a palliative physician.

BACKGROUND: Cancer of unknown primary is the fourth most common cause of cancer death in the United Kingdom. National guidance in 2010 recommended the establishment of a dedicated unknown primary team to facilitate targeted investigation and symptom control. A service development project was undertaken to identify those affected by malignancy of unknown origin and institute a pathway for coordinating their care led by a palliative physician. METHOD: In order to describe the patient population and illness trajectory and to assess the effect of the new pathway on the clinical outcomes we used a retrospective and prospective comparative case notes survey to identify the pre- and post-pathway population. This took place in secondary care. Inclusion criteria were patients with metastatic disease with no known primary; exclusion criteria were where the site of metastasis was so suggestive of a primary that it would be managed as per that disease process. 88 patients were included. RESULTS: Mean age was 72.5 years. The mean survival time from presentation was 81.8 days. There was no difference pre or during pathway implementation in age, performance status or survival time. There was no reduction in the numbers referred for tumour directed therapy. There was a non-statistically significant reduction in the number who died in hospital during the pathway implementation. CONCLUSIONS: This study suggests having a metastatic malignancy of unknown primary origin service led by a palliative physician does not reduce the number referred for tumour directed therapy. It also adds evidence of the poor prognosis and thus the need for early palliative care input.

A Pilot Randomized Controlled Trial of a Holistic Needs Assessment Questionnaire in a Supportive and Palliative Care Service.

CONTEXT: At present, there is no widely used systematic evidence-based holistic approach to assessment of patients' supportive and palliative care needs. OBJECTIVES: To determine whether the use of a holistic needs assessment questionnaire, Sheffield Profile for Assessment and Referral for Care (SPARC), will lead to improved health care outcomes for patients referred to a palliative care service. METHODS: This was an open, pragmatic, randomized controlled trial. Patients (n = 182) referred to the palliative care service were randomized to receive SPARC at baseline (n = 87) or after a period of two weeks (waiting-list control n = 95). Primary outcome measure is the difference in score between Measure Yourself Concerns and Wellbeing (MYCAW) patient-nominated Concern 1 on the patient self-scoring visual analogue scale at baseline and the two-week follow-up. Secondary outcomes include difference in scores in the MYCAW, EuroQoL (EQ-5D), and Patient Enablement Instrument (PEI) scores at Weeks 2, 4, and 6. RESULTS: There was a significant association between change in MYCAW score and whether the patients were in the intervention or control group (χ(2)trend = 5.51; degrees of freedom = 1; P = 0.019). A higher proportion of patients in the control group had an improvement in MYCAW score from baseline to Week 2: control (34 of 70 [48.6%]) vs. intervention (19 of 66 [28.8%]). There were no significant differences (no detectable effect) between the control and intervention groups in the scores for EQ-5D and Patient Enablement Instrument at 2-, 4-, or 6-week follow-up. CONCLUSION: This trial result identifies a potential negative effect of SPARC in specialist palliative care services, raising questions that standardized holistic needs assessment questionnaires may be counterproductive if not integrated with a clinical assessment that informs the care plan.

The provision of emotional labour by health care assistants caring for dying cancer patients in the community: a qualitative study into the experiences of health care assistants and bereaved family carers.

BACKGROUND: While previous research has suggested that health care assistants supporting palliative care work in the community regard the provision of emotional labour as a key aspect of their role, little research has explored the experiences of family carers who are the recipients of such support. OBJECTIVE: To explore the emotional labour undertaken by health care assistants working in community palliative care from the perspectives of both health care assistants and bereaved family carers. DESIGN: We conducted a qualitative interview study in 2011-2012 with bereaved family carers of cancer patients who had received the services of health care assistants in the community, and health care assistants who provided community palliative care services. Transcripts were coded and analysed for emergent themes using a constant comparative technique. SETTINGS: Three different research sites in the United Kingdom, all providing community palliative care. PARTICIPANTS AND METHODS: Semi-structured interviews were conducted with 33 bereaved family carers and eight health care assistants. RESULTS: Health care assistants view one of their key roles as providing emotional support to patients and their family carers, and family carers recognise and value this emotional support. Emotional support by health care assistants was demonstrated in three main ways: the relationships which health care assistants developed and maintained on the professional-personal boundary; the ability of health care assistants to negotiate clinical/domestic boundaries in the home; the ways in which health care assistants and family carers worked together to enable the patient to die at home. CONCLUSION: Through their emotional labour, health care assistants perform an important role in community palliative care which is greatly valued by family carers. While recent reports have highlighted potential dangers in the ambiguity of their role, any attempts to clarify the 'boundaries' of the health care assistant role should acknowledge the advantages health care assistants can bring in bridging potential gaps between healthcare professionals and family carers.

Consumer views on a new holistic screening tool for supportive and palliative-care needs: Sheffield Profile for Assessment and Referral for Care (SPARC): a survey of self-help support groups in health care.

BACKGROUND: Sheffield Profile for Assessment and Referral for Care (SPARC) was developed in response to concerns that palliative care may not be reaching all people who could benefit from it. Acceptability of the tool is an important step in developing its future use. AIMS: To elicit the views of a wide variety of members of consumer and self-help support groups concerned with health care on the relevance, acceptability and the overall perception of using SPARC as an early holistic needs assessment tool in supportive and palliative care. METHODS: This study was conducted in South Yorkshire and North Derbyshire (UK). Ninety-nine consumer and self-help groups were identified from information in the public domain. Thirty-eight groups participated. Packs containing study information and self-complete postal questionnaires were distributed to groups, and they were asked to circulate these to their members. Completed questionnaires were returned in pre-paid envelopes to the research team. RESULTS: 135 questionnaires and feedback forms were returned. The majority of respondents found SPARC easy to understand (93% (120/129; 95% Confidence Interval 87% to 96%) and complete (94% (125/133; 95% CI: 88% to 97%). A minority, 12.2% (16/131), of respondents found questions on SPARC 'too sensitive'. CONCLUSIONS: Overall, respondents considered SPARC an acceptable and relevant tool for clinical assessment of supportive and palliative-care needs. Whilst a small minority of people found SPARC difficult to understand (i.e. patients with cognitive impairments), most categories of service user found it relevant. Clinical studies are necessary to establish the clinical utility of SPARC.

A clinical method for physicians in palliative care: the four points of agreement vital to a consultation; context, issues, story, plan.

In palliative care, where interactions cross clinical, pathological, psychological, social and spiritual considerations, it may be useful to take a minimal approach and avoid an overcomplicated or formulaic structure for the consultation. We will concern ourselves with points in the encounter where doctor and patient with or without family or carers need to be in agreement. Whether a consultation is based on a structured interview, a cue-based assessment or a narrative approach, the points of agreement or concordance need to cover four key areas; missing any of these has grave consequences for the clinical relationship. Without concordance, patients may be right to conclude that you don't know why you're all there (context), you don't know what's the matter (issues), you don't know what's going on (story) or you don't know what you're doing (plan). These four elements may serve also as a guide to the quality and effectiveness of an encounter among a doctor, patient and carers. We consider how this clinical method might integrate the nosological practices of doctors in palliative care services better, and we argue that finding concordance is likely to establish a better doctor-patient relationship at a human and professional level through empathy and trust rather than just a technical exchange.

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.

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

BACKGROUND: The 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. METHODS: Two 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. RESULTS: The 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). CONCLUSION: The 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.

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

BACKGROUND: There 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. METHODS: A 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. RESULTS: A 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. CONCLUSION: Our 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.

Prevalence and predictors of transition to a palliative care approach among hospital inpatients in England.

AIM: The aim of this research was to quantify the extent of palliative care transitions among patients in two acute hospitals and to identify factors predicting the initiation of a transition to palliative care. METHODS: We conducted a prospective survey of hospital inpatients in two hospitals in the United Kingdom in which we examined hospital case notes for evidence of palliative care need. Further data were collected from medical staff, nursing staff, patients, and proxy consultees. RESULTS: Of 514 participating patients, 183 (36.2 percent) fulfilled criteria for palliative care need. In 61 cases (33 percent), there was evidence of transition to a palliative care approach. There was an increased likelihood of palliative care transition among patients with cancer, dementia, or stroke. CONCLUSIONS: There is a need for discussion of the meaning, and operationalization, of palliative care transitions if UK policy to increase the extent of transitions is to be enacted. This study has implications internationally, given the increased global focus on the role of the acute hospital in palliative care.

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.