Intercountry and intracountry variations in opinions of palliative care specialist physicians in Germany, Italy, Japan and UK about continuous use of sedatives: an international cross-sectional survey.

OBJECTIVES: To explore intercountry and intracountry differences in physician opinions about continuous use of sedatives (CUS), and factors associated with their approval of CUS. SETTINGS: Secondary analysis of a questionnaire study. PARTICIPANTS: Palliative care physicians in Germany (N=273), Italy (N=198), Japan (N=334) and the UK (N=111). PRIMARY AND SECONDARY OUTCOME MEASURES: Physician approval for CUS in four situations, intention and treatment goal, how to use sedatives and beliefs about CUS. RESULTS: There were no significant intercountry or intracountry differences in the degree of agreement with statements that (1) CUS is not necessary as suffering can always be relieved with other measures (mostly disagree); (2) intention of CUS is to alleviate suffering and (3) shortening the dying process is not intended. However, there were significant intercountry differences in agreement with statements that (1) CUS is acceptable for patients with longer survival or psychoexistential suffering; (2) decrease in consciousness is intended and (3) choice of neuroleptics or opioids. Acceptability of CUS for patients with longer survival or psychoexistential suffering and whether decrease in consciousness is intended also showed wide intracountry differences. Also, the proportion of physicians who agreed versus disagreed with the statement that CUS may not alleviate suffering adequately even in unresponsive patients, was approximately equal. Regression analyses revealed that both physician-related and country-related factors were independently associated with physicians' approval of CUS. CONCLUSION: Variations in use of sedatives is due to both physician- and country-related factors, but palliative care physicians consistently agree on the value of sedatives to aid symptom control. Future research should focus on (1) whether sedatives should be used in patients with longer survival or with primarily psychoexistential suffering, (2) understanding physicians' intentions and treatment goals, (3) efficacy of different drugs and (4) understanding the actual experiences of patients receiving CUS.

Physicians' Opinion and Practice With the Continuous Use of Sedatives in the Last Days of Life.

CONTEXT: There are few international studies about the continuous use of sedatives (CUS) in the last days of life. OBJECTIVES: We aim to describe the experiences and opinions regarding CUS of physicians caring for terminally ill patients in seven countries. METHODS: Questionnaire study about practices and experiences with CUS in the last days of life among physicians caring for terminally ill patients in Belgium (n = 175), Germany (n = 546), Italy (n = 214), Japan (n = 513), the Netherlands (n = 829), United Kingdom (n = 114) and Singapore (n = 21). RESULTS: The overall response rate was 22%. Of the respondents, 88-99% reported that they had clinical experience of CUS in the last 12 months. More than 90% of respondents indicated that they mostly used midazolam for sedation. The use of sedatives to relieve suffering in the last days of life was considered acceptable in cases of physical suffering (87%-99%). This percentage was lower but still substantial in cases of psycho-existential suffering in the absence of physical symptoms (45%-88%). These percentages were lower when the prognosis was at least several weeks (22%-66% for physical suffering and 5%-42% for psycho-existential suffering). Of the respondents, 10% or less agreed with the statement that CUS is unnecessary because suffering can be alleviated with other measures. A substantial proportion (41%-95%) agreed with the statement that a competent patient with severe suffering has the right to demand the use of sedatives in the last days of life. CONCLUSION: Many respondents in our study considered CUS acceptable for the relief of physical and psycho-existential suffering in the last days of life. The acceptability was lower regarding CUS for psycho-existential suffering and regarding CUS for patients with a longer life expectancy.

Phase of Illness in palliative care: Cross-sectional analysis of clinical data from community, hospital and hospice patients.

BACKGROUND: Phase of Illness describes stages of advanced illness according to care needs of the individual, family and suitability of care plan. There is limited evidence on its association with other measures of symptoms, and health-related needs, in palliative care. AIMS: The aims of the study are as follows. (1) Describe function, pain, other physical problems, psycho-spiritual problems and family and carer support needs by Phase of Illness. (2) Consider strength of associations between these measures and Phase of Illness. DESIGN AND SETTING: Secondary analysis of patient-level data; a total of 1317 patients in three settings. Function measured using Australia-modified Karnofsky Performance Scale. Pain, other physical problems, psycho-spiritual problems and family and carer support needs measured using items on Palliative Care Problem Severity Scale. RESULTS: Australia-modified Karnofsky Performance Scale and Palliative Care Problem Severity Scale items varied significantly by Phase of Illness. Mean function was highest in stable phase (65.9, 95% confidence interval = 63.4-68.3) and lowest in dying phase (16.6, 95% confidence interval = 15.3-17.8). Mean pain was highest in unstable phase (1.43, 95% confidence interval = 1.36-1.51). Multinomial regression: psycho-spiritual problems were not associated with Phase of Illness ( χ2 = 2.940, df = 3, p = 0.401). Family and carer support needs were greater in deteriorating phase than unstable phase (odds ratio (deteriorating vs unstable) = 1.23, 95% confidence interval = 1.01-1.49). Forty-nine percent of the variance in Phase of Illness is explained by Australia-modified Karnofsky Performance Scale and Palliative Care Problem Severity Scale. CONCLUSION: Phase of Illness has value as a clinical measure of overall palliative need, capturing additional information beyond Australia-modified Karnofsky Performance Scale and Palliative Care Problem Severity Scale. Lack of significant association between psycho-spiritual problems and Phase of Illness warrants further investigation.

A review of specialist palliative care provision and access across London - mapping the capital.

Palliative care provision varies by diagnosis, geography, and setting. The Minimum Data-set provides high-level data on provision, but comprehensive comparative information about specialist palliative care (SPC) provision is lacking. The London Cancer Alliance - now RM Partners' Accountable Cancer Network - palliative care group (West/South London) and PallE8 (North/East London), with Marie Curie, sought to address this gap. The aim was to provide comparative data on SPC provision across London to support commissioners and providers to assess provision, identify gaps, and reduce inequity. A data-collection template was developed through expert consensus. Demographic, diagnostic, and service data was collected, plus models of care, staffing levels, and use of clinical outcome/experience measures. Results were collated by organisation and CCG. Cleaned data was provided back to each organisation for verification before final analyses. RESULTS: All 50 adult SPC providers in London participated, representing hospitals, hospices and community services. •Patients in all 32 CCGs have access to hospice beds, with 322 beds from 15 providers (4 NHS) for a population of 9,323,570 (with 47,583 deaths annually).•SPC in London sees more non-cancer patients than is reported nationally; 79% of hospital advisory, 74% of community, and 88% of hospice in-patient services have higher proportions of non-cancer patients.•Considerable variation in out-of-hours availability of both hospital SPC and community SPC services across London; only 9 of 30 hospital and 17 of 26 community services provide seven-day visiting.•Wide variation in the models of community-based SPC; proportions of community patients attending day services vary from 1 in 4, to 1 in 17, just 13 CCGs have H@H-type provision, with few Rapid Response or Care Coordination services. CONCLUSIONS: This detailed survey demonstrates important gaps in availability and provision of SPC services. Recommendations are made for commissioners and providers to join together to address these. It also gives a comprehensive view of rapidly changing models of community-based care, to inform innovation and service development.

To explore the relationship between the use of midazolam and cessation of oral intake in the terminal phase of hospice inpatients: A retrospective case note review: Does midazolam affect oral intake in the dying?

BACKGROUND: Sedative drugs are used to improve comfort in dying patients but have been accused of shortening survival by reducing patients' ability to maintain nutrition and hydration. However, as part of the dying process, patients in the last days of life often have impaired conscious levels and an inability to maintain oral intake. AIM: To establish whether the decline in oral intake is related to the use of midazolam in the last week of life. DESIGN: This is a retrospective case note review. SETTING/PARTICIPANTS: The data were obtained from nursing records and medication charts of 125 consecutive hospice inpatients who died at a hospice in South London. RESULTS: A total of 72 patients received midazolam on one or more days within the last 7 days of life (midazolam group) and 49 patients received no midazolam (control group). CONCLUSION: Mean oral intake was reduced 7 days prior to death and declined sequentially over subsequent days in both patient groups. More patients required midazolam as death approached and most patients received midazolam for less than 3 days. Mean doses of midazolam used were low. Patients in the midazolam group had lower oral intake than those in the control group, but this association does not indicate causation.

One Chance to Get it Right: understanding the new guidance for care of the dying person.

BACKGROUND: Following criticism of the Liverpool Care of the Dying Pathway (LCP), widely used to guide care of dying people in British health-care settings, the UK Government set up an independent review which in 2013 recommended that use of the LCP be discontinued. In response, the Leadership Alliance for the Care of Dying People, a coalition of a wide range of stakeholders, recently published guidance entitled One Chance to Get it Right. This guidance contains five Priorities of Care for the dying person that are intended to guide clinical staff and will inform Care Quality Commission inspections of health-care providers. This article summarizes the background to One Chance to Get it Right and the guidance it contains. SOURCES OF DATA: One Chance to Get it Right, More Care, Less Pathway and related guidance documents. AREAS OF AGREEMENT: The need to improve the standard of end-of-life care in every clinical setting. AREAS OF CONTROVERSY: The value of a pathway-based approach to end-of-life care in a context where well-implemented programmes of staff education in the subject are lacking. GROWING POINTS: Public concern with, and scrutiny of, the quality of dying in the UK health-care system, particularly in hospitals but also the ability of patients to die well at home where that is their place of choice. AREAS TIMELY FOR DEVELOPING RESEARCH: Effective methods of teaching end of life care to all clinical staff; the effect upon families of caring for a dying relative at home; the optimum type, quantity and source of external support to informal carers that is perceived by them as adequate and enables the ill person to die well in in their own home; fuller understanding of the physiology of dying.

The effect of using high facilitation when implementing the Gold Standards Framework in Care Homes programme: a cluster randomised controlled trial.

BACKGROUND: The provision of quality end-of-life care is increasingly on the national agenda in many countries. In the United Kingdom, the Gold Standards Framework for Care Homes programme has been promoted as a national framework for improving end-of-life care. While its implementation is recommended, there are no national guidelines for facilitators to follow to undertake this role. AIM: It was hypothesised that action learning alongside high facilitation when implementing the Gold Standards Framework for Care Homes programme will result in a reduced proportion of hospital deaths for residents and improvement in the care home staff ability to facilitate good end-of-life care. DESIGN: A cluster randomised controlled trial where 24 nursing homes received high facilitation to enable them to implement the Gold Standards Framework for Care Homes programme. The managers of 12 nursing homes additionally took part in action learning sets. A third group (14 nursing homes) received the 'standard' Gold Standards Framework for Care Homes facilitation available in their locality. SETTING/PARTICIPANTS: In total, 38 nursing homes providing care for frail older people, their deceased residents and their nurse managers. RESULTS: A greater proportion of residents died in those nursing homes receiving high facilitation and action learning but not significantly so. There was a significant association between the level of facilitation and nursing homes completing the Gold Standards Framework for Care Homes programme through to accreditation. Year-on-year change occurred across all outcome measures. CONCLUSION: There is a danger that without national guidelines, facilitation of the Gold Standards Framework for Care Homes programme will vary and consequently so will its implementation. The nurse manager of a care home must be actively engaged when implementing the Gold Standards Framework for Care Homes programme.

Development and initial validation of a new outcome measure for hospice and palliative care: the St Christopher's Index of Patient Priorities (SKIPP).

OBJECTIVE: To develop and conduct a preliminary psychometric analysis of a hospice and palliative care patient-reported outcome measure to detect patients' perceptions of change in quality of life (QoL) and issues of concern, and views of service benefit. METHODS: Following pilot testing and cognitive interviewing, St Christopher's Index of Patient Priorities (SKIPP) was administered twice to hospice inpatients and homecare patients. QoL was rated 'now', and retrospectively 'before starting hospice care' or 'at the time of the first interview'. Patients nominated and rated progress with main concerns, rated the difference the service was making, and completed palliative care outcome scale. Patients completed SKIPP again within 24 h to measure test-retest reliability. RESULTS: QoL scores 'now' differed significantly from retrospective scores made at same time: QoL increased with hospice care when patients 'looked back' on previous QoL. Four-fifths reported that their first concern had got 'a little'/ 'much' better since initial service contact: this declined subsequently. Four-fifths at both time points said the hospice had made 'a lot of difference' to them. No significant differences were noted between time points on palliative care outcome scale items. Test-retest analyses were prevented by low numbers. CONCLUSIONS: SKIPP can detect patients' perception of change in QoL and main concerns, and the difference patients think the service has made to them. Its design with current and retrospective components addresses response shift and means it can be used for quality improvement or clinical purposes with only one administration, an advantage in frail populations. It is therefore a useful addition to hospice and palliative care patient-reported outcome measures.

I've had a good life, what's left is a bonus: factor analysis of the Mental Adjustment to Cancer Scale in a palliative care population.

BACKGROUND: The Mental Adjustment to Cancer Scale is an assessment tool commonly used to measure coping in cancer patients, which characterises adaptive coping under the label of 'fighting spirit'. AIM: This study explores adaptation in patients with advanced cancer, by examining the factor structure of the Mental Adjustment to Cancer Scale. Further aims were to examine associations between types of coping and psychological outcomes measured at the same time (time 1) and 4 weeks after referral to palliative care services (time 2). DESIGN: A cross-sectional study with a follow-up assessment 4 weeks later. Factor analysis examined the structure of the Mental Adjustment to Cancer Scale at time 1. SETTING/PARTICIPANTS: A total of 275 patients with advanced cancer receiving palliative care, of whom 193 took part at follow-up. RESULTS: This study provided evidence for the internal consistency and validity of a new scale of 'acceptance and positivity' for use in advanced cancer patients. Patients with a desire for hastened death had lower acceptance and positivity, and patients with higher global quality of life reported a higher level. Social support was positively associated with acceptance and positivity. Higher scores on the acceptance and positivity scale were associated with reduced odds of a desire for hastened death at time 2. CONCLUSION: Adaptation to advanced cancer differs from adaptation to early stage cancer, comprising a general acceptance of the illness and trying to make the most of the time that is left. Individuals with low social support were less likely to evidence appropriate adaptation to their illness.

The provision of care for residents dying in U.K. nursing care homes.

OBJECTIVES: to identify the care currently provided to residents dying in U.K. nursing care homes. METHOD: study participants were residents who had died within 38 nursing care homes in southeast England over a 3-year period. The nursing care homes had been recruited to take part in a cluster randomised controlled trial looking at different models of facilitation while implementing the Gold Standards Framework in Care Homes (GSFCH) programme. Two researchers examined the notes and daily records of all residents who died in each of these homes between the 1 June 2008 and the 31 May 2011. RESULTS: a total of 2,444 residents died during the 3-year period. Fifty-six percent of these residents died within a year of admission. The support from specialist healthcare services to residents during their last 6 months of life was variable. CONCLUSIONS: nursing care homes have established links with some external healthcare providers. These links included the GP, palliative care nurses and physiotherapy. As dependency of resident increase with 56% residents dying within a year of admission these links need to be expanded. The provision of health care that meets the needs of future nursing care home residents needs to be 'proactively' obtained rather than left to chance.

The factor structure of the PHQ-9 in palliative care.

OBJECTIVES: The Primary Care Evaluation of Mental Disorders Patient Health Questionnaire (PRIME-MD PHQ-9) is a common screening tool designed to facilitate detection of depression according to DSM-IV criteria. However, the factor structure of the PHQ-9 within the palliative care population has not been evaluated. METHODS: 300 participants completed the PHQ-9 within one week of referral to a palliative care service. Participants completed the PHQ-9 again four weeks later (n=213). Confirmatory factor analysis (CFA) and multiple-group CFA were undertaken to test the factor structure of the PHQ-9 and evaluate model invariance over time. RESULTS: A two-factor model comprising somatic and cognitive-affective latent factors provided the best fit to the data. Multiple-group CFA suggested model invariance over time. Structural equation modelling revealed that follow-up (time 2) cognitive-affective and somatic symptoms were predicted by their baseline (time 1) factors. CONCLUSIONS: The PHQ-9 measures two stable depression factors (cognitive-affective and somatic) within the palliative care population. Studies are now required to examine the trajectories of these symptoms over time in relation to clinical intervention and events.

Illness perceptions, adjustment to illness, and depression in a palliative care population.

CONTEXT: Representations of illness have been studied in several populations, but research is limited in palliative care. OBJECTIVES: To describe illness representations in a population with advanced disease receiving palliative care and to examine the relationship between illness perceptions, adaptive coping, and depression. METHODS: A cross-sectional survey of 301 consecutive eligible patients recruited from a palliative care service in south London, U.K. Measures used included the Brief Illness Perception Questionnaire (Brief IPQ), the Mental Adjustment to Cancer (MAC) Scale, and the Primary Care Evaluation of Mental Disorders Patient Health Questionnaire-9. RESULTS: Scores were not normally distributed for most questions on the Brief IPQ. The correlations found between items on the Brief IPQ were understandable in the context of advanced disease. MAC helplessness-hopelessness and fighting spirit were highly correlated with items on the Brief IPQ in opposite directions. The Brief IPQ domains of consequences, identity, concern, personal control, and emotion were associated with depression, a relationship that was not explained by adaptive coping. Seven causal attribution themes were identified: don't know, personal responsibility, exposure, pathological process, intrinsic personal factors, chance, fate or luck, and other. Both lung cancer diagnosis and gender were found to be independently associated with personal responsibility attribution. None of the attribution themes were associated with the presence of depression. CONCLUSION: Assessment of illness perceptions in palliative care is likely to yield important information about risk of depression and will help clinicians to personalize management of advanced disease.

Stimulant laxatives and opioid-induced constipation.

Therapeutic Reviews aim to provide essential independent information for health professionals about drugs used in palliative and hospice care. Additional content is available on www.palliativedrugs.com. Country-specific books (Hospice and Palliative Care Formulary USA, and Palliative Care Formulary, British and Canadian editions) are also available and can be ordered from www.palliativedrugs.com. The series editors welcome feedback on the articles (hq@palliativedrugs.com).

Predictors of non-remission of depression in a palliative care population.

BACKGROUND: Prospective studies of depression in palliative care are rare. Two studies that examine depression prospectively in patients with advanced disease have not looked at predictors of remission. AIMS: to explore prospective predictors of non-remission of depression in palliative care. DESIGN AND PARTICIPANTS: The study design comprised two data collections: initial assessment on referral to a palliative care service in South London, UK, and a four-week follow-up. Seventy six participants met the criteria for 'any depressive syndrome' at the time 1 assessment, using the PRIME-MD, who also participated at time 2. The outcome measure was remission (N = 39) or non-remission (N = 37) of depression by time 2. RESULTS: The findings showed that reporting low social support from family and friends at time of referral was the most powerful risk factor for non-remission. There was also a strong association between improved physical symptoms, from time 1 to 2, and remission of depression. CONCLUSIONS: This study in palliative care is the first of which we are aware to explore factors associated with non-remission of depression. Depressed patients identified with low social support on referral to palliative care services might particularly benefit from additional psychosocial care in the treatment of their depression. This study provides evidence that effective physical symptom management in palliative care may be a valuable intervention for depressive symptoms.

Gender differences in prevalence of depression among patients receiving palliative care: the role of dependency.

BACKGROUND: in community studies the prevalence of depression is higher in women than men; however, in palliative care settings this relationship is usually less strong, absent or reversed. AIM: to identify reasons for excess depression among men receiving palliative care. DESIGN: cross-sectional study. SETTING/PARTICIPANTS: we interviewed 300 patients recruited from a large hospice in South East London. Depression was measured using the Primary Care Evaluation of Mental Disorder. RESULTS: the higher prevalence of depression among men was not explained by a higher prevalence of particular types of cancer nor confounding by other covariates. Possible effect modifiers were examined. Depending on others for help with basic tasks (eating, dressing, washing or using the toilet) was a risk factor for depression in men only, with 37.8% of dependent men being depressed compared to 2.4% of similarly affected women (OR = 24.3, 3.1-193.2, p = 0.003). We observed a dose-response effect between the level of dependency and depression in men (p for trend = 0.01). CONCLUSION: depending on others for help with basic tasks appears to contribute to the burden of depression among men with terminal illness. This gender-specific association may explain why the usual gender differences in depression prevalence are not observed in palliative care.

Decision-making for gastrostomy and ventilatory support for people with motor neurone disease: variations across UK hospices.

Interventions, such as the use of percutaneous endoscopic gastrostomy (PEG) and non-invasive ventilation (NIV), are used in the management of people with motor neurone disease with the aim of improving quality of life and relieving symptoms. However, the number of people receiving these interventions varies across the UK. This study has looked at the involvement and knowledge of consultants, within specialist palliative care services, with these procedures, to ascertain if there were differences in attitudes to their use. Twenty-two consultants took part in a telephone audit. There appeared to be great variation in their involvement in and knowledge of the use of these interventions. The majority of services were involved in the care of people with MND, but often only in the terminal stages. There appears to be a need for the wider application of guidelines on the use of PEG and NIV, as well as the development of a collaborative approach with other services, including neurology and rehabilitation services.