Renal Unit, Birmingham Heartlands Hospital, Birmingham B9 5SS, UK
Correspondence and offprint requests to: Dr Steve Smith, Birmingham Heartlands Hospital, Bordesley Green East, Birmingham B9 5SS, UK. Email: steve.smith{at}heartsol.wmids.nhs.uk
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Abstract |
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Methods. An anonymous but numbered questionnaire concerning local palliative care provision was sent to clinical directors of all 69 UK renal units.
Results. All the questionnaires were returned. Only 27 (39%) units employ nursing or Professions Allied to Medicine (PAM) staff with palliative care for ESRD patients as a specified part of their role. In 19 of these units, staff spend < h per week concerned with palliative care and only five units have staff working for >12 h a week in this role. Fifty-five (80%) units do not have a written protocol for palliative care. Anaemic ESRD patients with an expected survival of >3 months receive blood transfusion in 59 (86%) units, intravenous iron in 61 (88%) units and erythropoietin in 63 (91%) units. Only 37 (54%) units kept a record of patients seen by the unit staff but deemed not suitable for dialysis.
Conclusion. There is a significant variation in provision of palliative care services across the UK. In some areas, access to palliative care is restricted to patients with malignant disease, and ESRD patients are excluded.
Keywords: end-stage renal disease; palliative care
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Introduction |
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There is very little evidence concerning palliative care provision in ESRD in the UK, but there is anecdotal evidence of wide variation in practice in different renal units across the country. Part 2 of the Renal National Service Framework, which will deal will conservative treatment of ESRD, will benefit from a better understanding of current practice. We carried out this survey to establish the current pattern of provision of palliative care for ESRD in the UK.
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Subjects and methods |
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The unit identities were known only to our administrator who did not see the responses and took no part in the analysis, but was able to chase up outstanding responses. In this way, a 100% response was obtained.
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Results |
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Discussion and review of the literature |
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There is a significant variation in provision of palliative care services across the UK. This may be related to the lack of resources, but may also be due to the low priority given to this service in hard-pressed renal units with a rising workload. The year-on-year growth of the number of patients receiving renal replacement therapy in the UK is 7% [4].
In some areas, access to palliative care is restricted to patients with malignant disease, and ESRD patients are excluded. The minimum data sets national survey of hospice services (19992000) reported that only 4.8% of non-cancer patients received hospice care [5]. A questionnaire survey looking at the approach of hospices towards this group of patients found that 13 out of 20 hospices restricted their admissions to patients with malignant disease and most would not be prepared to consider referral of patients with ESRD. The authors conclude that this may be an inappropriate response borne mainly of unfamiliarity, and hospices need to be more receptive to these patients [6]. Most units appear willing to provide ongoing care in terms of out-patient follow-up and anaemia treatment in selected patients, but do not appear to have ready access to palliative care services.
We chose to send the questionnaire to Clinical Directors of renal units rather than senior nurses or other members of the team. This was because the names of Clinical Directors were available to us and experience from previous surveys has shown that Clinical Directors are more likely to respond. We were not able to check if responses from other members of the team would have been consistent with those of the Clinical Directors. It is unlikely that this would lead to significant error as the questions were simple, objective and semi-quantitative.
Our survey examined the availability of dedicated palliative care services for patients with ESRD. Lack of identified dedicated services does not necessarily mean that the patients receive inadequate terminal care. Indeed, it is possible that this type of care may be provided to a reasonably high standard by non-specialist agencies. Our study was concerned with the processes of care rather than outcomes, but it is likely that the variation in provision that we observed will be related to variation in the quality of care.
An American survey of Nephrology Fellows showed a lack of palliative care teaching and training in Nephrology Fellowship programmes, and the same is likely to be true in the UK [7]. Therefore, incorporating nephrology-specific palliative care training would improve knowledge and preparedness of nephrologists to improve clinical practice in this area.
There is a significant and growing need for palliative care in ESRD. The elderly population are the fastest growing segment on dialysis. In 2001, 30% of ESRD patients were over 65 years old, and it is predicted that by 2010 this will rise to 42% [4]. Patients with ESRD have a shortened life expectancy. Data from the UK Renal Registry have shown that the unadjusted 4-year survival of incident ESRD patients is 48% (67% <65 years vs 24% >65 years) [4]. Amongst prevalent patients, death due to withdrawal was seen in 5% in those aged <65 years compared with 17% above 65 years at 35 years on renal replacement therapy [4]. The median age in England and Wales is 64 years, and overall 21% are above 75 years. Furthermore, the elderly have the most co-morbidity, a high symptom burden [8,9] and are more likely to stop dialysis [4,10]. Weisbord et al. [8] conducted a pilot study on 19 haemodialysis patients with modified Charlson co-morbidity scores >8 and found that these patients had a significant symptom burden with the mean number of symptoms reported to be similar to those of hospitalized cancer patients (10.2 and 11.5, respectively). In addition, these symptoms correlated with impaired health-related quality of life, were under-assessed by nephrologists and advance care planning was addressed infrequently [8]. Swartz and Perry compared the nature of death in 182 patients and found that 74 patients who had advance directives were more likely to die in a reconciled fashion than suddenly and unexpectedly [11].
It is clear that there is pressing need for palliative care incorporating control of distressing symptoms, advance care directives and paying special attention to ethical, psychosocial and spiritual issues relating to starting, withholding and stopping dialysis. The ESRD peer working group looked at quality of life, quality of dying and education of nephrologists with regards to palliative care, and has put forward recommendations to improve their care [12].
Based on the work done by The Renal Palliative Care Initiative group, The Robert Wood Johnson Foundation and others, it is possible to propose guidelines for acceptable standards in palliative care in ESRD in the UK [1216]. Such guidance will be included in part 2 of the Renal National Service Framework.
We believe that elements of this guidance should include the following:
Conclusion
We have shown that there is a significant variation in provision of palliative care services across the UK. While lack of resources is clearly a major problem, palliative care may be given a low priority in some areas. Existing palliative care services need to be made available to non-cancer patients if we are to provide an adequate service for our patients.
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Appendix 1 |
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Do any renal nurses or PAM staff employed by your unit have palliative care for end stage renal failure patients (on dialysis or deemed not suitable for dialysis) as a specified part of their role?
Yes/No (delete as appropriate)
If yes, estimate the total hours per week your renal nurses or PAM staff with specified responsibility for palliative care actually spend in the role
<1
14
58
912
>12 h
Do you involve your local hospital continuing care/palliative care teams with end stage renal failure patients (who do not also have malignant disease) needing palliative care?
Never/rarely (<10%)
Occasionally (1029%)
Sometimes (3059%)
Usually (6090%)
Virtually always (>90% of patients)
Do local Hospices help with the care of end stage renal failure patients (who do not also have malignant disease) needing palliative care?
Never/rarely (<10%)
Occasionally (1029%)
Sometimes (3059%)
Usually (6090%)
Virtually always (>90% of patients)
Do you continue to see and treat end stage renal failure patients who are deemed not suitable for renal replacement therapy in the outpatients clinic?
Never/rarely (<10%)
Occasionally (1029%)
Sometimes (3059%)
Usually (6090%)
Virtually always (>90% of patients)
How frequently are these patients seen in the outpatients clinic when compared to those destined for dialysis?
Less frequently As frequently
More frequently
Do you have written protocols for palliative care in end stage renal failure patients?
Yes/No (delete as appropriate)
Do non-dialytic end stage renal failure patients receive home visits from the renal team?
Yes/No (delete as appropriate)
For near end stage renal failure patients who are not suitable for renal replacement therapy but are anaemic, with expected survival greater than three months, would you:
Transfuse as required Yes/No
Prescribe intravenous iron if required Yes/No
Prescribe erythropoietin Yes/No
Do you have the same haemoglobin targets for non-dialytic ESRF patients as those destined for dialysis
Yes/No (delete as appropriate)
Do you keep a record of patients with end stage renal failure referred to your team and seen by a member of your staff who are deemed not suitable for dialysis?
Yes/No (delete as appropriate)
Do you keep a written record of patients with end stage renal failure referred to your team but not seen by a member of your staff who are deemed not suitable for dialysis? (e.g. turned down following a telephone conversation with a referring physician)?
Yes/No (delete as appropriate)
Thank you for your help. If you wish to make any comments please turn over. Please return to: Dr S Smith, Dept of Renal Medicine, Birmingham Heartlands Hospital, B9 5SS (SAE attached).
Please add any comments belowthey will all be fed to the NSF module 4 review group.
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Acknowledgments |
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Conflict of interest statement. None declared.
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References |
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