Kidney disease pathways, options and decisions: an environmental scan of international patient decision aids.

BACKGROUND: Conservative management is recognized as an acceptable treatment for people with worsening chronic kidney disease; however, patients consistently report they lack understanding about their changing disease state and feel unsupported in making shared decisions about future treatment. The purpose of this review was to critically evaluate patient decision aids (PtDAs) developed to support patient-professional shared decision-making between dialysis and conservative management treatment pathways. METHODS: We performed a systematic review of resources accessible in English using environmental scan methods. Data sources included online databases of research publications, repositories for clinical guidelines, research projects and PtDAs, international PtDA expert lists and reference lists from relevant publications. The resource selection was from 56 screened records; 17 PtDAs were included. A data extraction sheet was applied to all eligible resources, eliciting resource characteristics, decision architecture to boost/bias thinking, indicators of quality such as International Standards for Patient Decision Aids Standards checklist and engagement with health services. RESULTS: PtDAs were developed in five countries; eleven were publically available via the Internet. Treatment options described were dialysis (n = 17), conservative management (n = 9) and transplant (n = 5). Eight resources signposted conservative management as an option rather than an active choice. Ten different labels across 14 resources were used to name 'conservative management'. The readability of the resources was good. Six publications detail decision aid development and/or evaluation research. Using PtDAs improved treatment decision-making by patients. Only resources identified as PtDAs and available in English were included. CONCLUSIONS: PtDAs are used by some services to support patients choosing between dialysis options or end-of-life options. PtDAs developed to proactively support people making informed decisions between conservative management and dialysis treatments are likely to enable services to meet current best practice.

Critical review of leaflets about conservative management used in uk renal services.

BACKGROUND: Written information supplements nurse-led education about treatment options. It is unclear if this information enhances patients' reasoning about conservative management (CM) and renal replacement therapy decisions. AIM: This study describes a critical review of resources U.K. renal staff use when providing CM options to people with Established Kidney Disease (EKD) during usual pre-dialysis education. DESIGN: A survey using mixed methods identified and critically analysed leaflets about CM. PARTICIPANTS & MEASUREMENTS: All 72 renal units in the United Kingdom received an 11-item questionnaire to elicit how CM education is delivered, satisfaction and/or needs with patient resources and staff training. Copies of leaflets were requested. A coding frame was utilised to produce a quality score for each leaflet. RESULTS: Fifty-four (75%) units participated. Patients discuss CM with a nephrologist (98%) or nurse (100%). Eighteen leaflets were reviewed, mean scores were 8.44 out of 12 (range 5-12, SD = 2.49) for information presentation; 3.50 out of 6 (range 0-6, SD = 1.58) for inclusion of information known to support shared decision-making and 2.28 out of 6 (range 1-4, SD = 0.96) for presenting non-biased information. CONCLUSIONS: Nurses preferred communicating via face-to-face contact with patients and/or families because of the emotional consequences and complexity of planning treatment for the next stage of a person's worsening kidney disease. Conversations were supplemented with written information; 66% of which were produced locally. Staff perceived a need for using leaflets, and spend time and resources developing them to support their services. However, no leaflets included the components needed to help people reason about conservative care and renal replacement therapy options during EKD education consultations.

Does simulation have a role in palliative medicine specialty training?

Simulation training has been adopted by other industries, particularly aviation, for many years. With patient safety on every agenda, more recently there has been considerable interest and investment in its use for the acute medical specialities. Evidence in palliative medicine, for the use of simulation is mainly limited to advanced communication skills but little is described about its use in developing acute clinical skills. This article describes how in the Yorkshire and Humber Deanery a simulation training day was set up for Palliative Medicine specialty trainees, to assess their knowledge and develop the skills required to deal with acute medical emergencies, as described in the specialty training curriculum for palliative medicine. Scenarios included opioid toxicity, acute left ventricular failure, anaphylaxis, hypoglycaemia and massive haemorrhage. The set up and scenarios are described, along with the mechanisms for delivering feedback. This method of training received positive feedback from trainees and facilitators. The advantages, limitations and potential future role for high-fidelity simulation training for medical trainees and the wider multidisciplinary palliative care team are discussed.

Comparison of survival analysis and palliative care involvement in patients aged over 70 years choosing conservative management or renal replacement therapy in advanced chronic kidney disease.

BACKGROUND: There are limited data on the outcomes of elderly patients with chronic kidney disease undergoing renal replacement therapy or conservative management. AIMS: We aimed to compare survival, hospital admissions and palliative care access of patients aged over 70 years with chronic kidney disease stage 5 according to whether they chose renal replacement therapy or conservative management. DESIGN: Retrospective observational study. SETTING/PARTICIPANTS: Patients aged over 70 years attending pre-dialysis clinic. RESULTS: In total, 172 patients chose conservative management and 269 chose renal replacement therapy. The renal replacement therapy group survived for longer when survival was taken from the time estimated glomerular filtration rate <20 mL/min (p < 0.0001), <15 mL/min (p < 0.0001) and <12 mL/min (p = 0.002). When factors influencing survival were stratified for both groups independently, renal replacement therapy failed to show a survival advantage over conservative management, in patients older than 80 years or with a World Health Organization performance score of 3 or more. There was also a significant reduction in the effect of renal replacement therapy on survival in patients with high Charlson's Comorbidity Index scores. The relative risk of an acute hospital admission (renal replacement therapy vs conservative management) was 1.6 (p < 0.05; 95% confidence interval = 1.14-2.13). A total of 47% of conservative management patients died in hospital, compared to 69% undergoing renal replacement therapy (Renal Registry data). Seventy-six percent of the conservative management group accessed community palliative care services compared to 0% of renal replacement therapy patients. CONCLUSIONS: For patients aged over 80 years, with a poor performance status or high co-morbidity scores, the survival advantage of renal replacement therapy over conservative management was lost at all levels of disease severity. Those accessing a conservative management pathway had greater access to palliative care services and were less likely to be admitted to or die in hospital.

Supportive and palliative care for people with end-stage renal disease.

Advanced renal failure has a mortality rate worse than for most cancers with significant symptom burden. Despite this palliative care for this group has been poor. This article summarizes the role that palliative and nephrology teams can play in optimizing end-of-life care.

Palliative and end-of-life care in advanced renal failure.

There is a recognised need to provide palliative care services for patients with AKD. Such services can improve end-of-life care for patients withdrawing from dialysis and those choosing not to have dialysis. Developments in such services should lead to measurable advances in patients' experiences.

Views of oncology patients, their relatives and oncologists on cardiopulmonary resuscitation (CPR): questionnaire-based study.

BACKGROUND: Doctors are justified withholding a treatment, such as cardiopulmonary resuscitation (CPR), if it is unlikely to benefit a patient. The success rates for CPR in patients with cancer is <1%. Guidelines produced in 2001 recommended that CPR should be discussed with patients, even when it is unlikely to be successful. Therefore, should oncologists always discuss resuscitation, even when it is likely to be futile? METHOD: Sixty oncology in-patients and 32 of their relatives were asked their views on CPR, and their views were compared with the oncologist involved in their care. RESULTS: Some 58% of patients wanted to be resuscitated. There was a moderate-strong correlation between patients and their next of kin and the desire for resuscitation. There was also a positive correlation between the doctor's views on suitability for resuscitation, patient's prognostic score, and World Health Organisation (WHO) performance score. CONCLUSION: Most patients wanted to be resuscitated despite being given the likely poor survival rates from CPR. They also wanted to be involved in the decision-making process, and wanted their next of kin involved, even when, medically, the procedure was unlikely to be successful. The findings that patient and next of kin views correlated well shows that relatives' views are a good representation of patient views. In contrast, consultant's decisions were strongly correlated with the patient's performance status and clinical state. No patients were upset by the study, although nine patients declined to participate.

Learning from death: a hospital mortality reduction programme.

PROBLEM: There are wide variations in hospital mortality. Much of this variation remains unexplained and may reflect quality of care. SETTING: A large acute hospital in an urban district in the North of England. DESIGN: Before and after evaluation of a hospital mortality reduction programme. STRATEGIES FOR CHANGE: Audit of hospital deaths to inform an evidence-based approach to identify processes of care to target for the hospital strategy. Establishment of a hospital mortality reduction group with senior leadership and support to ensure the alignment of the hospital departments to achieve a common goal. Robust measurement and regular feedback of hospital deaths using statistical process control charts and summaries of death certificates and routine hospital data. Whole system working across a health community to provide appropriate end of life care. Training and awareness in processes of high quality care such as clinical observation, medication safety and infection control. EFFECTS: Hospital standardized mortality ratios fell significantly in the 3 years following the start of the programme from 94.6 (95% confidence interval 89.4, 99.9) in 2001 to 77.5 (95% CI 73.1, 82.1) in 2005. This translates as 905 fewer hospital deaths than expected during the period 2002-2005. LESSONS LEARNT: Improving the safety of hospital care and reducing hospital deaths provides a clear and well supported goal from clinicians, managers and patients. Good leadership, good information, a quality improvement strategy based on good local evidence and a community-wide approach may be effective in improving the quality of processes of care sufficiently to reduce hospital mortality.