Suzanne Kite

The level of need for palliative care : a systematic review of the literature

Palliative care services have developed rapidly over the past 30 years, with little evaluation as to how needs have been met by these new services. As part of a systematic review of palliative care, evidence of the needs of patients and carers has been evaluated from the current literature. Of the total of 673 articles related to the 10 areas within the main review, 64 provided evidence on the need for palliative care services over the period from 1978 to 1997. A further nine articles were added in November 1998 after the end of the study to update the review with more recent research. Need can be assessed in one of two ways: either by adopting an epidemiological approach or by examining health service usage. In the former, evidence is provided on disease-specific mortality, and related to the duration of symptoms prior to the patients death. As an example of this, it is suggested that services may need to provide pain control for 2800 patients per million (p/M) population dying from cancer each year and 3400 p/M with noncancer terminal illness. Using health service usage as an indicator of need, 700–1800 p/M with cancer and 350–1400 p/M with noncancer terminal illness would require a support team or specialist palliative home care nurse, with 400–700 cancer p/M and 200–700 noncancer p/M requiring inpatient terminal care. Studies indicate that at present usage, palliative care is being provided by 40–50 hospice beds/M. Despite this provision, there remains evidence that in certain areas of care such as pain control, there still remains a high degree of unmet need.

The impact of different models of specialist palliative care on patients' quality of life: a systematic literature review

This study set out to systematically review the research evidence about the impact of alternative models of specialist palliative care on the quality of life of patients. Eighty-six relevant papers were identified and reviewed, including 22 descriptive and 27 comparative studies. We found few comparative trials of reasonable quality. There was some evidence that in-patient palliative care provided better pain control than home care or conventional hospital care, but this research was dated and open to criticism. Research on palliative home care teams and co-ordinating nurses has demonstrated limited impact on quality of life over conventional care for patients dying at home. These negative findings may be due to the limitations of the assessment tools used. There is a need for larger studies to provide clear evidence as to whether specialist palliative care services provide improvements in patients quality of life. This review does not exclude the possibility that models of care might be justifiable on other grounds such as patient preference or cost-effectiveness.

Patient and carer preference for, and satisfaction with, specialist models of palliative care : a systematic literature review

This systematic literature review examined the impact of specialist models of palliative care on consumer satisfaction, opinion and preference over the past 20 years. From the literature search, 83 relevant papers were identified. Research findings from North America did not reveal any reliable or consistent trends, and this was due primarily to methodological flaws in the research. In the UK, consumers are more satisfied with all types of palliative care, whether provided by inpatient units or in the community, than with palliative care provided by general hospitals. Even though research findings consistently indicate that consumers appreciate the psychosocial climate in hospices, this research was based on small-scale local studies which were mainly focused on a single hospice. The dearth of high quality, comprehensive research was notable on the impact on consumer preference, opinion or satisfaction of hospice home care services, and other forms of palliative care in the community. It was concluded that further research is needed into consumer priorities for patients dying of noncancer diseases, and into the possible impact of patient characteristics on consumer satisfaction, opinion and preference for specialist models of palliative care.

Specialist palliative care and patients with noncancer diagnoses: the experience of a service

This retrospective review was undertaken to identify the pattern of noncancer referrals to a specialist palliative care service, comprising a teaching hospital support team, home care, outpatients and inpatient hospice, over a 1-year period. Of 287 hospital ward referrals, 83 patients had a noncancer diagnosis (29%); they were referred predominantly for symptom control (92%), particularly of pain (84%). Of 130 outpatient referrals, 30 had a noncancer diagnosis (23%) and were also referred mainly for the management of pain (85%). Of 196 home care referrals, 18 had a noncancer diagnosis (9%); they tended to be referred for multiprofessional care of endstage disease. Of 421 hospice inpatient admissions, 17 were for patients with a noncancer diagnosis (4%) and were predominantly for respite care. These admissions accounted for 2% of occupied bed days. It is concluded that specialist palliative care skills are perceived to be transferable to patients with noncancer diagnoses. Resource implications focus on hospital and outpatient services, where shared care with medical teams is usual practice. Defining management goals at the outset is particularly important.

The recognition and documentation of delirium in hospital palliative care inpatients.

OBJECTIVEnDelirium is a clinical syndrome that is known to be under recognized by palliative care teams. A wide variation in reported prevalence may reflect differences in definitions and assessment methods, patient characteristics, and study design. The aim of this study was to test an intervention to improve recognition of delirium in the inpatient palliative care setting.nnnMETHODnWe conducted a retrospective palliative care notes review of documented prevalence of delirium among 61 patients referred to the Specialist Palliative Care Advisory Team (SPCT). Subsequently, training in the use of the Confusion Assessment Method (CAM) was provided to the SPCT and a prospective survey of the prevalence of delirium measured by the CAM was undertaken with the next 59 patients referred.nnnRESULTSnIn the retrospective chart review, the term delirium was not used, and synonyms were identified and used to establish a delirium prevalence of 11.5%. In the intervention utilizing the CAM in a prospective sample of 59 referred patients, a prevalence rate of 8.5-15.2% for delirium was found. Use of the CAM was received favorably by the SPCT.nnnSIGNIFICANCE OF RESULTSnThe institution of the use of the CAM as a screening and assessment tool in the inpatient palliative care setting did not significantly increase the recognition of delirium. Reasons for the low prevalence of delirium are discussed.

What determines referral of UK patients with haematological malignancies to palliative care services? An exploratory study using hospital records

We investigated the frequency and characteristics of patients with haematological malignancies (HMs) who were, or were not, referred for specialist palliative care (SPC). Data were abstracted from hospital records of 108 patients who died — 27 with leukaemia, 11 with myelodysplastic syndromes, 48 with lymphoma and 22 with myeloma. Ninety-three patients (86.1%) were >60 years of age at diagnosis, with 33 (30.6%) being ≥80 years and 31 (28.7%) having existing comorbidities. Thirty-three patients (30.6%) were referred to SPC services. There was little difference by age or HM diagnosis in referred patients. Seventeen of 67 patients (25.4%) dying on a hospital ward received SPC compared with 6/7 (85.7%) dying at home. Time between diagnosis and death influenced the referral — 24/52 patients (46.2%) dying ≥30 days after diagnosis received SPC compared with 8/42 (19.1%) dying within 30 days. In 14 patients, HM diagnosis was confirmed after death. Identification of these 14 patients is likely to be a unique feature of our study, as patients were selected from a regional, population-based register with centralized diagnostic services, enabling the identification of all patients with HM. The interface between curative and palliative treatment in HM is more complex than the National Institute for Clinical Excellence recommendations suggest. Palliative Medicine 2007; 21 : 487—492

How should we measure emesis in palliative care

There are many assessment tools available to measure emesis. This Association for Palliative Medicine Science Committee Task Group undertook a review of the validity and suitability of the assessment tools available to measure nausea, vomiting and retching within a palliative care population. Electronic databases were searched from 1970 to 2004. Both specific and global tools were identified and reviewed for their validity, reliability and suitability for our patient population where coexisting cognitive impairment and significant co-morbidities may make accurate assessment of symptoms difficult. Within specific palliative care scenarios namely daily clinical assessment, prevalence surveys and randomized controlled trial settings, the team reached a consensus on which tools had the greatest evidence to recommend them, either for immediate use or for further validation studies. An ideal measurement tool for the assessment of nausea, vomiting and retching has not yet been developed. Palliative Medicine 2007; 21 : 369—383

Patient choice regarding place of death.

clinical course during the acute stage and one-year followup. Acta Psychiatr Scand 1989; 79: 579-85. 6 Meagher DJ, OHanlon D, OMahony E, Casey PR. The use of environmental strategies and psychotropic medication in the management of delirium. Br J Psychiatry 1996; 168: 512-15. 7 Levin HL. Organic and psychogenic delirium; differential diagnosis; analysis of psychogenic delirium. New York Medical Journal 1914; 99: 631-33. 8 Wimmer A. In Schioldann J ed. (and translated). Psychogenic psychoses. Adelaide: Adelaide Academic Press, 2003. 9 Collomb H. Bouffees delirante en psychiatrie africaine. Psychopathol Afric 1965; 1: 167-239.

Delirium in palliative care: Detection, documentation and management in three settings

OBJECTIVESnDelirium is characterized by disturbances of consciousness and changes in cognition that develop rapidly and fluctuate. It is common in palliative care, affecting up to 88% of patients with advanced cancer, yet often remains insufficiently diagnosed and managed. This study sought to compare rates of screening, documentation, and management of delirium across three palliative care settings - two hospices and one hospital team - and to determine whether definitive documentation of delirium as a diagnosis is associated with improved management of the disorder.nnnMETHODSnA retrospective review of patient case notes was performed in three U.K. palliative care settings for the presence of: cognitive screening tools on first assessment; the term delirium as a stated documented diagnosis; documented terms, descriptions, and synonyms suggestive of delirium; and management plans aimed at addressing delirium.nnnRESULTSnWe reviewed 319 notes. The prevalence of delirium as a documented diagnosis ranged from 0 to 8.4%, rising to 35.7-39.2% when both documented delirium and descriptions suggestive of delirium were taken into account. An abbreviated mental test score (AMTS) was determined for 19.6 (H1) and 26.8% (H2) of hospice admissions and for 0% of hospital assessments. Symptoms suggestive of delirium were managed in 56.3% of cases in hospital, compared with 66.7 (H1) and 72.2% (H2) in hospices.nnnSIGNIFICANCE OF RESULTSnUse of the term delirium was infrequent in both hospital and hospice palliative care settings, as was the use of routine screening. Many identified cases did not receive targeted management. The definitive use of the term as a diagnosis was associated with clearer management plans in hospital patients. The authors suggest that better screening and identification remains the first step in improving delirium management.

Electronic palliative care coordination systems: Devising and testing a methodology for evaluating documentation:

Background: The need to improve coordination of care at end of life has driven electronic palliative care coordination systems implementation across the United Kingdom and internationally. No approaches for evaluating electronic palliative care coordination systems use in practice have been developed. Aim: This study outlines and applies an evaluation framework for examining how and when electronic documentation of advance care planning is occurring in end of life care services. Design: A pragmatic, formative process evaluation approach was adopted. The evaluation drew on the Project Review and Objective Evaluation methodology to guide the evaluation framework design, focusing on clinical processes. Setting/participants: Data were extracted from electronic palliative care coordination systems for 82 of 108 general practices across a large UK city. All deaths (nu2009=u20091229) recorded on electronic palliative care coordination systems between April 2014 and March 2015 were included to determine the proportion of all deaths recorded, median number of days prior to death that key information was recorded and observations about routine data use. Results: The evaluation identified 26.8% of all deaths recorded on electronic palliative care coordination systems. The median number of days to death was calculated for initiation of an electronic palliative care coordination systems record (31u2009days), recording a patient’s preferred place of death (8u2009days) and entry of Do Not Attempt Cardiopulmonary Resuscitation decisions (34u2009days). Where preferred and actual place of death was documented, these were matching for 75% of patients. Anomalies were identified in coding used during data entry on electronic palliative care coordination systems. Conclusion: This study reports the first methodology for evaluating how and when electronic palliative care coordination systems documentation is occurring. It raises questions about what can be drawn from routine data collected through electronic palliative care coordination systems and outlines considerations for future evaluation. Future evaluations should consider work processes of health professionals using electronic palliative care coordination systems.