Using continuous sedation until death for cancer patients: a qualitative interview study of physicians' and nurses' practice in three European countries.

BACKGROUND: Extensive debate surrounds the practice of continuous sedation until death to control refractory symptoms in terminal cancer care. We examined reported practice of United Kingdom, Belgian and Dutch physicians and nurses. METHODS: Qualitative case studies using interviews. SETTING: Hospitals, the domestic home and hospices or palliative care units. PARTICIPANTS: In all, 57 Physicians and 73 nurses involved in the care of 84 cancer patients. RESULTS: UK respondents reported a continuum of practice from the provision of low doses of sedatives to control terminal restlessness to rarely encountered deep sedation. In contrast, Belgian respondents predominantly described the use of deep sedation, emphasizing the importance of responding to the patient's request. Dutch respondents emphasized making an official medical decision informed by the patient's wish and establishing that a refractory symptom was present. Respondents employed rationales that showed different stances towards four key issues: the preservation of consciousness, concerns about the potential hastening of death, whether they perceived continuous sedation until death as an 'alternative' to euthanasia and whether they sought to follow guidelines or frameworks for practice. CONCLUSION: This qualitative analysis suggests that there is systematic variation in end-of-life care sedation practice and its conceptualization in the United Kingdom, Belgium and the Netherlands.

The language of sedation in end-of-life care: The ethical reasoning of care providers in three countries.

The application of ethically controversial medical procedures may differ from one place to another. Drawing on a keyword and text-mining analysis of 156 interviews with doctors and nurses involved in end-of-life care ('care providers'), differences between countries in care providers' ethical rationales for the use of sedation are reported. In the United Kingdom, an emphasis on titrating doses proportionately against symptoms is more likely, maintaining consciousness where possible. The potential harms of sedation are perceived to be the potential hastening of social as well as biological death. In Belgium and the Netherlands, although there is concern to distinguish the practice from euthanasia, rapid inducement of deep unconsciousness is more acceptable to care providers. This is often perceived to be a proportionate response to unbearable suffering in a context where there is also greater pressure to hasten dying from relatives and others. This means that sedation is more likely to be organised like euthanasia, as the end 'moment' is reached, and family farewells are organised before the patient is made unconscious for ever. Medical and nursing practices are partly responses to factors outside the place of care, such as legislation and public sentiment. Dutch guidelines for sedation largely tally with the practices prevalent in the Netherlands and Belgium, in contrast with those produced by the more international European Association for Palliative Care whose authors describe an ethical framework closer to that reportedly used by UK care providers.

Descriptions by general practitioners and nurses of their collaboration in continuous sedation until death at home: in-depth qualitative interviews in three European countries.

CONTEXT: One palliative care approach that is increasingly being used at home for relieving intolerable suffering in terminally ill patients is continuous sedation until death. Its provision requires a multidisciplinary team approach, with adequate collaboration and communication. However, it is unknown how general practitioners (GPs) and home care nurses experience being involved in the use of sedation at home. OBJECTIVES: To present case-based GP and nurse descriptions of their collaboration, roles, and responsibilities during the process of continuous sedation until death at home in Belgium, The Netherlands, and the U.K. METHODS: We held in-depth qualitative interviews with 25 GPs and 26 nurses closely involved in the care of 29 adult cancer patients who received continuous sedation until death at home. RESULTS: We found that, in Belgium and The Netherlands, it was the GP who typically made the final decision to use sedation, whereas in the U.K., it was predominantly the nurse who both encouraged the GP to prescribe anticipatory medication and decided when to use the prescription. Nurses in the three countries reported that they commonly perform and monitor sedation in the absence of the GP, which they reported to experience as "emotionally burdensome." CONCLUSION: We found variety among the countries studied regarding the decision making and provision of continuous sedation until death at home. These differences, among others, may be the result of different organizational contexts in the three countries such as the use of anticipatory medication in the U.K.

Preparing breast cancer patients for survivorship (PREP) - a pilot study of a patient-centred supportive group visit intervention.

PURPOSE: The process of breast cancer follow-up has psychosocial benefits for patients, notably reassurance, although attending hospital appointments can increase anxiety. Discharge from hospital follow-up can also invoke anxiety as many patients seek reassurance from continued specialist follow-up. Inevitably, due to increased survival and associated resource issues, opportunities for follow-up and support will be reduced. We delivered and evaluated an intervention which supported the transition from cancer patient to cancer survivor, for breast cancer patients being discharged to primary care. METHODS: We delivered and evaluated a pilot of a patient-centred group intervention 'Preparing Patients for Discharge', aimed at reducing distress. Between January and September 2008, 172 participants were recruited and 74 (43%) expressed an interest in participating in the intervention; 32 of 74 took part, and participated in its evaluation using a semi-structured evaluation questionnaire, standardized measures [Hospital Anxiety and Depression Scale (HADS) and Clinical Outcomes for Routine Evaluation (CORE)] and independent qualitative interviews. RESULTS: The qualitative analysis of questionnaire data indicated key factors were 1) shared experience, 2) support and reassurance, and 3) positive views about cancer and being discharged. The interview data revealed that the intervention enabled participants to: share experiences, focus on emotional needs, and have open discussions about recurrence, while increasing confidence in being discharged and using alternative support services. However, no significant differences were found in pre-post-interventions scores of HADS and CORE. CONCLUSIONS: Providing a structured group intervention approach for breast cancer patients offers an early opportunity to support cancer survivors and facilitate and encourage self-management.

Predicting biopsychosocial outcomes for heroin users in primary care treatment: a prospective longitudinal cohort study.

BACKGROUND: Opiate substitution treatment for heroin users reduces mortality, illicit drug use, crime, and risk-taking behaviour, and improves physical, mental and social functioning. Few extended studies have been carried out in UK primary care to study factors predicting recovery. AIM: To establish whether primary care opiate substitution treatment is associated with improvements in outcomes over 11 years, in delivering recovery, and to identify predictive factors. DESIGN AND SETTING: A prospective longitudinal cohort study, with repeated measures in the Primary Care Addiction Service, Sheffield, 1999-2011. METHOD: A total of 123 eligible patients were assessed using the Opiate Treatment Index at entry to treatment and at 1, 5, and 11 years. Clinical records were used to assess factors including employment and discharge status. RESULTS: At 11 years, there was a high rate of drug-free discharge (22.0%) and medically-assisted recovery (30.9%), and low mortality (6.5%). Continuous treatment was associated with being discharged drug free (P = 0.005). For those still in treatment, there were highly significant reductions in heroin use and injecting, and significantly improved psychosocial functioning. There were strong positive correlations between mental health, physical health, and social functioning. Patients in employment had significantly better psychological and social functioning (P = 0.017, P = 0.007, respectively). CONCLUSION: Opiate substitution treatment is associated over 11 years with full recovery, drug-free discharge and medically-assisted recovery. There is a strong association between the psychosocial variables, suggesting that intervention in any one of these areas may have extended benefits, by impacting on related variables and employment. The best predictor of a drug-free discharge was continuous uninterrupted treatment.

Levels of distress in breast cancer survivors approaching discharge from routine hospital follow-up.

BACKGROUND: Hospital-based breast cancer follow-up provides reassurance to patients despite limited evidence for clinical efficacy. Although alternative models of hospital/community-based follow-up have yielded encouraging results, traditional hospital follow-up continues to be offered to all patients. Survival rates continue to rise; consequently, more patients are likely to require support, as many have a limited understanding of the long-term physical and emotional consequences of cancer and its treatment. We examine levels of psychological distress in breast cancer patients in follow-up 2 years or more from diagnosis. METHODS: This prospective study measured psychological distress levels using standardized measures [Hospital Anxiety and Depression Scale (HADS), Clinical Outcomes for Routine Evaluation (CORE) and Measure Yourself Medical Outcomes Profile (MYMOP)]. Between January and September 2008, 323 consecutive patients were approached in outpatient clinics. Ninety-six patients declined to participate. RESULTS: Two hundred twenty-seven patients took home patient information sheets; 172 (75%) returned completed questionnaires to assess levels of distress (HADS, CORE). MYMOP provided self-reported data on patient symptoms. Patients reported low levels of distress in hospital-based follow-up, which were comparable or better than general population norms, although there was a significant minority of patients reporting high scores (n = 27, 15.7%) on HADS or CORE. There was good agreement between these two measures. All sub-scales of CORE (except risk) correlated well with HADS for anxiety/depression. No significant changes were detected in the standardized measures. MYMOP results showed that 23.8% of respondents reported both physical and emotional symptoms. CONCLUSIONS: Breast cancer survivors reported good psychological outcomes 2 years on from diagnosis. Screening for psychological/emotional distress is a vital part of follow-up care, which should be incorporated into UK policy.

Prevention of coronary heart disease in primary medical care in Poland: results from the LIPIDOGRAM study.

AIMS: To determine: (1) achievement of cholesterol therapy goals in patients receiving lipid-lowering drugs in Polish primary care between the years 2004 and 2006; (2) the characteristics of patients that are associated with attainment of these goals. DESIGN: Cross-sectional study in randomly selected Polish primary care practices. METHOD: 5248 patients aged over 30 years in 2004 and 5386 patients in 2006, who were taking cholesterol-lowering treatment took part in the study. Physicians recorded demographic and medical history data using a standardized questionnaire, including weight and height, and collected blood samples of patients to determine their cholesterol level. RESULTS: 18.5% of patients attained their optimal goals of therapy (total cholesterol, TC; low-density lipoprotein cholesterol, LDL-C) in 2004 compared to 25.2% in 2006 (p < 0.001). In both 2004 and 2006, more patients achieved their target levels for LDL-C than for TC and statins were the most commonly used medication (85% and 91%, respectively). Male sex, smoking, and higher education were the strongest correlates of the therapeutic outcome. The odds ratio of achieving cholesterol therapy goals in men, non-smokers, and university graduates was estimated at 1.51, 0.70, 1.38 in 2004 and 1.50, 0.73, 1.34 in 2006, respectively. CONCLUSION: There was a measurable improvement in the effectiveness of hypercholesterolaemia treatment between 2004 and 2006 but the majority of patients remain inadequately treated, with goals not being achieved. There is a need to raise the standard of lipid-lowering management in Poland.

The effect of time spent in treatment and dropout status on rates of convictions, cautions and imprisonment over 5 years in a primary care-led methadone maintenance service.

BACKGROUND: Methadone maintenance treatment (MMT) in primary care settings is used increasingly as a standard method of delivering treatment for heroin users. It has been shown to reduce criminal activity and incarceration over periods of periods of 12 months or less; however, little is known about the effect of this treatment over longer durations. AIMS: To examine the association between treatment status and rates of convictions and cautions (judicial disposals) over a 5-year period in a cohort of heroin users treated in a general practitioner (GP)-led MMT service. DESIGN: Cohort study. SETTING: The primary care clinic for drug dependence, Sheffield, 1999-2005. PARTICIPANTS: The cohort comprised 108 consecutive patients who were eligible and entered treatment. Ninety were followed-up for the full 5 years. INTERVENTION: The intervention consisted of MMT provided by GPs in a primary care clinic setting. MEASUREMENTS: Criminal conviction and caution rates and time spent in prison, derived from Police National Computer (PNC) criminal records. FINDINGS: The overall reduction in the number of convictions and cautions expected for patients entering MMT in similar primary care settings is 10% for each 6 months retained in treatment. Patients in continuous treatment had the greatest reduction in judicial disposal rates, similar to those who were discharged for positive reasons (e.g. drug free). Patients who had more than one treatment episode over the observation period did no better than those who dropped out of treatment. CONCLUSIONS: MMT delivered in a primary care clinic setting is effective in reducing convictions and cautions and incarceration over an extended period. Continuous treatment is associated with the greatest reductions.

Can type 2 diabetes be prevented in UK general practice? A lifestyle-change feasibility study (ISAIAH).

BACKGROUND: The increasing incidence of type 2 diabetes mellitus is attributed to increasing weight, reduced physical activity, and poor diet quality. Lifestyle change in patients with pre-diabetes can reduce progression to diabetes but this is difficult to achieve in practice. AIM: To study the effectiveness of a lifestyle-change intervention for pre-diabetes in general practice. DESIGN OF THE STUDY: A feasibility study. SETTING: A medium-sized general practice in Sheffield. METHOD: Participants were 33 patients with pre-diabetes. The intervention was a 6-month delayed entry comparison of usual treatment with a lifestyle-change programme: increased exercise and diet change, either reduction in glycaemic load, or reduced-fat diet. The main outcome measures were weight, body mass index (BMI), waist circumference, fasting glucose, lipid profile, and nutrition. RESULTS: A statistically significant difference was observed between control and intervention groups in three markers for risk of progression to diabetes (weight (P<0.03), BMI (P<0.03), and waist circumference (P<0.001)). No significant differences in fasting glucose or lipid profiles were seen. Aggregated data showed a statistically non-significant improvement in all the measures of metabolic risk of progression to diabetes in the low-glycaemic-load group when compared with a low-fat-diet group (P>0.05). Significant total energy, fat, and carbohydrate intake reduction was achieved and maintained in both groups. CONCLUSION: A lifestyle-change intervention feasibility programme for pre-diabetic patients was implemented in general clinical practice. The potential of a low-glycaemic-load diet to be more effective than a low-fat diet in promoting change in the features associated with progression to diabetes is worthy of further investigation.

Referral letters to colorectal surgeons: the impact of peer-mediated feedback.

BACKGROUND: General practitioners (GPs) select few patients for specialist investigation. Having selected a patient, the GP writes a referral letter which serves primarily to convey concerns about the patient and offer background information. Referral letters to specialists sometimes provide an inadequate amount of information. The content of referral letters to colorectal surgeons can now be scored based on the views of GPs about the ideal content of referral letters. AIM: To determine if written feedback about the contents of GP referral letters mediated by local peers was acceptable to GPs and how this feedback influenced the content and variety of their referrals. DESIGN: A non-randomised control trial. SETTING: GPs in North Nottinghamshire. METHOD: In a controlled trial, 26 GPs were offered written feedback about the documented contents of their colorectal referral letters over 1 year. The feedback was designed and mediated by two nominated local GPs. The contents of referral letters were measured in the year before and 6 months after feedback. GPs were asked about the style of the feedback. The contents of referral letters and the proportion of patients with organic pathology were compared for the feedback GPs and other local GPs who could be identified as having used the same hospital for their referrals in the period before and after feedback. RESULTS: All GPs declared the method of feedback to be acceptable but raised concerns about their own performance, and some were upset by the experience. None withdrew from the project. There was a difference of 7.1 points (95% confidence interval = 1.9 to 12.2) in the content scores between the feedback group and the controls after adjusting for baseline differences between the groups. Of the GPs who referred to the same hospital before and after feedback, the feedback GPs referred more patients with organic pathology than other local colleagues. CONCLUSIONS: GPs welcome feedback about the details appearing on their referral letters, although peer comparisons may not always lead to changes in practice. However, in some cases feedback improves the content of GP referral letters and may also impact on the type of patients referred for investigation by specialists.

Preconception care: practice and beliefs of primary care workers.

BACKGROUND: A number of lifestyle modifications and medical interventions can be of benefit to maternal and neonatal health, when applied prior to conception. These include smoking cessation, supplementation with folic acid, cessation or moderation of alcohol intake and improvement of diabetic control. However, preconception care (PCC) is not widely practised in the UK, despite being apparently acceptable to health professionals and to women of childbearing age. OBJECTIVES: The aims of the study were to describe the current practice of PCC in Barnsley and to assess the beliefs and attitudes of primary health care practitioners. This information would help direct appropriate educational and clinical governance intervention to this service in the locality in the light of other evidence about the effectiveness of PCC. METHODS: A questionnaire was devised to explore the beliefs about, and practice in providing, PCC in primary care in the Barnsley Health Authority area and sent to all known GPs, practice nurses (PNs), health visitors (HVs) and midwives (MWs) in practices in the area in July 2000. A total of 163 completed questionnaires were received (one reminder, response rate 60.1%). RESULTS: Few practices had a written policy on PCC. Most respondents were providing it mainly on an opportunistic basis and had done so less than five times in the previous 3 months; GPs and PNs were most commonly involved. They agreed that advice about smoking, drug use, folic acid, genetic counselling, chronic disease, alcohol, and maternity care and screening for rubella, genital infections, hepatitis, human immunodeficiency virus and cervical cytology were important. They felt that advice about diet, exercise, supplements, food safety, occupational hazards and State benefits, and screening for nutritional status were less important. Although respondents felt that PCC was effective, and important to women of childbearing age, it was not a high priority in their workload. They indicated that this care was best provided in general practice and that they had the appropriate skills. Barriers to providing PCC included lack of resources and lack of contact with women planning to conceive. Few had received any training on PCC since qualifying in their discipline. CONCLUSIONS: The practitioners who responded to this survey agreed to a large extent about the importance of the subject, and about the content and effectiveness of PCC. Factors hindering the delivery of this service include resource constraints, lack of training and practice policies and procedures, and difficulty in targeting couples planning conception. Further research is needed into ways to increase the provision and uptake of PCC.

Quality of information on referrals to colorectal surgeons: towards consensus.

OBJECTIVES: To produce a valid, reliable instrument to gauge the extent to which GPs document relevant signs, symptoms and risk factors in referral letters to colorectal surgeons. DESIGN: GPs and colorectal surgeons were invited to participate in a two-part questionnaire survey about the ideal contents of a referral letter. In the second round participants were asked to reconsider the questionnaire in the light of the group's collective replies in the first round. The instrument was tested for predictive validity and inter-rater reliability. SETTING: GPs in North Nottinghamshire Health Authority and colorectal surgeons in North Trent. PARTICIPANTS: 125 GPs registered in two districts with North Nottinghamshire Health Authority and nine colorectal surgeons in North Trent were invited to participate. MAIN OUTCOME MEASURES: Mean scores in the second round of the questionnaire were used to produce an instrument in which marks could be ascribed to each item mentioned on a GP referral letter. RESULTS: There was a 68.6% response rate to the questionnaire survey. The instrument had substantial inter-rater reliability (r= 0.77). Higher scores predicted cases that would be offered urgent appointments by the specialist (OR = 1.06, 95% CI = 1.01 to 1.10). Cases with pathology were not referred with more thorough documentation of pre-referral assessment (score 33 vs. 31, mean difference 2.3, p = 0.06 (t-test), 95% Cl = -0.07 to 4.02). CONCLUSIONS: In some cases, patients with pathology are entering secondary care with communications from GPs in which the relevant history and examination are not fully documented. Explicit documentation of GP assessment prior to referral may have a significant impact on how cases might be managed in secondary care.

The effect of GP telephone triage on numbers seeking same-day appointments.

Telephone consultations with general practitioners (GPs) have not been shown to be an effective way to reduce the demandfor face-to face appointments during the surgery hours. This study aims to determine if GP telephone triage can effectively reduce the demandforface-to -face consultations for patients seeking same-day appointments in general practice. We report an interrupted time series, twoyears before and one year after introduction of GP-led telephone triage. Demand for face-to face appointments with a GPwas reduced by 39% (95% CI = 29 to 51%, P < 0.001). more than 92% of the telephone calls lasted less thanfive minutes. The telephone bill increased by 26%. For a substantial proportion of patients seeking same-day appointments telephone consultations were an acceptable alternative service.

Methadone maintenance treatment can be provided in a primary care setting without increasing methadone-related mortality: the Sheffield experience 1997-2000.

Methadone maintenance treatment has been shown in many studies to reduce mortality and morbidity among heroin users. However, there has been concern that widespread methadone prescribing will lead conversely to an increase in methadone-related deaths. This study in Sheffield shows no increase in methadone-related mortality over a two-year period, during which 400 untreated patients were recruited into primary care methadone treatment in the city.

Deaths from drugs of abuse in Sheffield 1997-1999: what are the implications for GPs prescribing to heroin addicts?

OBJECTIVE: Our aim was to examine the characteristics of drug abuse deaths in Sheffield between 1997 and 1999 with particular attention on the role of prescribed medication and the impact of increased methadone prescribing. METHODS: Information was made available on all deaths reported to the City of Sheffield Coroner between 1 January 1997 and 31 December 31 1999. These records were searched to identify individuals who died from a 'drug of abuse'-related poisoning. RESULTS: A total of 82 drug of abuse-related deaths occurred in Sheffield during the 3-year period. The number of deaths rose from 16 in 1997 to 34 in 1999 (112%), with the largest increase occurring between 1997 and 1998. The mean age over the period of study was 29.4 years (SD 7.5 years), the overwhelming majority of which were male (92%), single (89%) and unemployed (84%). Heroin on its own or in combination with other drugs was considered to be responsible for death in 70% of all cases. Deaths attributable either wholly or partially to methadone poisoning fell from 37% in 1997 to 18% in 1999. CONCLUSIONS: Given that the proportion of deaths involving methadone over this period fell against a background of increased prescribing, then it would appear that the availability of methadone is not a factor involved in the increase in the number of drug of abuse-related deaths in this study.