National survey of the current provision of specialist palliative care services for patients with end-stage renal disease

Hobson, Katie; Gomm, Stephanie; Murtagh, Fliss E.M.; Caress, Ann Louise

doi:10.1093/ndt/gfq530

Cited by 16 publications

(13 citation statements)

References 18 publications

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“…However, recent data (26) demonstrate that specialist palliative care services accepted more referrals of patients with ESRD. Our survey has shown that all units now work with specialist palliative care service for CKM patients approaching the end of life, and 79% of units worked with palliative care services from local hospices.…”

Section: Discussionmentioning

confidence: 99%

Conservative Care for ESRD in the United Kingdom

Okamoto

Tonkin‐Crine

Rayner

et al. 2015

Clinical Journal of the American Society of Nephrology

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Background and objectives Conservative kidney management (CKM) has been developed in the United Kingdom (UK) as an alternative to dialysis for older patients with stage 5 CKD (CKD5) and multiple comorbidities. This national survey sought to describe the current scale and pattern of delivery of conservative care in UK renal units and identify their priorities for its future development.Design, setting, participants, & measurements A survey on practice patterns of CKM for patients age 75 and older with CKD5 was sent to clinical directors of all 71 adult renal units in the UK in March 2013.Results Sixty-seven units (94%) responded. All but one unit reported providing CKM for some patients. Terminology varied, although "conservative management" was the most frequently used term (46%). Lack of an agreed-upon definition of when a patient is receiving CKM made it difficult to obtain meaningful data on the numbers of such patients. Fifty-two percent provided the number of CKM patients age $75 years in 2012; the median was 45 per unit (interquartile range [IQR], 20-83). The median number of symptomatic CKM patients who would otherwise have started dialysis was eight (IQR,. CKM practice patterns varied: 35% had a written guideline, 23% had dedicated CKM clinics, 45% had dedicated staff, and 50% provided staff training on CKM. Most units (88%) provided primary care clinicians with information/advice regarding CKM. Eighty percent identified a need for better evidence comparing outcomes on CKM versus dialysis, and 65% considered it appropriate to enter patients into a randomized trial.Conclusions CKM is provided in almost all UK renal units, but scale and organization vary widely. Lack of common terminology and definitions hinders the development and assessment of CKM. Many survey respondents expressed support for further research comparing outcomes with conservative care versus dialysis.

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Section: Discussionmentioning

confidence: 99%

Conservative Care for ESRD in the United Kingdom

Okamoto

Tonkin‐Crine

Rayner

et al. 2015

Clinical Journal of the American Society of Nephrology

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“…In the USA, only 13.5% of the 115 239 dialysis patients who died in a 2-year period used a hospice 64 97. In the UK, there remains some confusion about when dialysis can be considered an active treatment and when it can be considered ‘palliative’ 55 62–65 98. Increasing involvement of primary and palliative care services is helping to address this 42 43 65 98.…”

Section: Delivery Of Care At the End Of Life And Current Controversiesmentioning

confidence: 99%

Prognosis and management of chronic kidney disease (CKD) at the end of life

Davison

Sheerin

2013

Postgraduate Medical Journal

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The prevalence of chronic kidney disease (CKD) increases with age. As people are living longer, nephrologists are responsible for a progressively older cohort of patients with substantial comorbidities. Patients with CKD have a significant symptom burden and can benefit from intervention and symptom control from an early stage in the illness. It is also increasingly recognised that renal replacement therapy may not always offer an improvement in symptoms or a survival advantage to older patients with high levels of comorbidity. For these reasons, non-dialytic (conservative) management and end-of-life care is becoming part of routine nephrology practice. Such patients will also frequently be encountered in other specialities, requiring generalists to have some renal-specific skills and knowledge. Although there have been significant advances in this field in recent years, the optimum model of care and some of the care preferences of patients remain challenges that need to be addressed.

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“…Renal disease is included in the Gold Standards Framework in the United Kingdom [13], again helping the medical team to identify patients at risk of deterioration, initiate care planning and provide support for patients and their carers. However, access for patients with advanced CKD to specialist palliative care services is varied [14] and complicated by decisions around dialysis continuation [15]. …”

Section: Introductionmentioning

confidence: 99%

Establishing a Supportive Care Register Improves End-of-Life Care for Patients with Advanced Chronic Kidney Disease

Harrison

Clipsham

Cooke

et al. 2015

Nephron

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Background: End-of-life care for patients with advanced chronic kidney disease (CKD) is recognised as an important area for improvement. These patients have a significant mortality and, although some is unpredictable, there is a role for the nephrology multi-disciplinary team (MDT) and palliative care physicians to engage in advance care planning and support patients to discuss their preferences. Methods: Retrospective and prospective data were obtained to conduct a comparison observational study to assess the impact of introducing a supportive care register on the end-of-life care for patients with advanced CKD. An electronic supportive care register was implemented. This required a programme of multi-disciplinary staff education, collaborative working with Palliative Care to establish renal-specific protocols and dissemination activities. The impact of the intervention was assessed by analysing all deaths in two six-month periods where all those with an eGFR <15 ml/min/1.73 m² at the time of their death were included. Results: A total of 91 patients were included. Post-intervention, there was a 25.4% (95% CI: 6.5-44.3%, p = 0.008) improvement in patients having a documented discussion about end-of-life planning. There was also a 19.7% (95% CI: 4.0-35.5%, p = 0.01) improvement in establishing the place of death. All patients who expressed a preferred place of death died there. The intervention increased engagement with the wider MDT and led to significant improvements in access to specialist palliative care services. Conclusions: These results show that the interventions implemented to introduce a supportive care register resulted in meaningful improvements to the end-of-life care for patients in our region with advanced CKD.

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National survey of the current provision of specialist palliative care services for patients with end-stage renal disease

Cited by 16 publications

References 18 publications

Conservative Care for ESRD in the United Kingdom

Conservative Care for ESRD in the United Kingdom

Prognosis and management of chronic kidney disease (CKD) at the end of life

Establishing a Supportive Care Register Improves End-of-Life Care for Patients with Advanced Chronic Kidney Disease

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