National Kidney Federation Submission to the Department of Health on Palliative Care for Adults in Renal Services, July 2006
Registrations: Charity No. 1106735 – Company No. 52723349 Registered in England and Wales
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The National Kidney Federation is the national body representing the interests of all patients affected by Chronic Kidney Disease (CKD). As with other patients with long term conditions palliative care needs are a critical part of their life time treatment. We welcome therefore this strategy review and the opportunity to make a submission. Our comments are based on the needs of the renal patients that we represent although they will be in many cases similar to those of other long term patients. The NKF are involved with the Liverpool Care Pathway development team and would draw your attention to the renal pilot work for End of Life Care they are at present developing.
In March 2004 National Institute of Clinical Excellence (NICE) published its guidance on Cancer Services entitled Improving supportive and palliative care for adults with cancer. (NICE 2004). Although focused solely on services for adult patients with cancer and their families, it was envisaged that the document would inform the development of service models for other groups of patients. This submission on behalf of renal patients has used this guidance as a template for best practice to ensure equity of service provision for all groups of patients.
In February 2005 part two of the Renal National Service Framework Chronic Kidney Disease, Acute Renal Failure and End of Life Care was published. Quality requirement four of the document covers palliative care for renal patients and requires that:
People with established renal failure receive timely evaluation of their prognosis, information about the choices available to them, and for those near the end of life a jointly agreed palliative care plan, built around their individual needs and preferences.
Renal patient will enter Palliative Care and End of Life Care from four areas
Stopping dialysis presents health care professionals with important challenge in the care of their patients. Between 12% and 18% of patients may choose to stop dialysis as the burden of symptoms from co-morbidity, the presence of other life threatening illness or the burden of dialysis comes to outweigh its benefits.
Gunda, et.al (2005) completed a national survey of palliative care in ESRD and Chambers (2005) surveyed renal departments to develop a picture of current practice and the areas that need particular attention. It was found that nearly all patients opting for conservative management of their renal failure are treated appropriately with erythropoietin and blood or iron support but only a minority of units had any palliative care guidelines.
However by the summer of 2005 the majority of units questioned had been in discussion with their local palliative care teams and approximately half of units had designated pathways for patients who chose not to dialyse. Provision of written information remained poor.
Between 2004 and 2005 there appears to have been an increase in the number of renal teams who refer a number of patients to their local palliative care service but there are still some who refer none. There is wide variation in practice with the number of patients referred varying from 0-50 per year. The provision of the types of intervention that may help teams improve their care of the dying remains patchy.
Nearly all had access to spiritual support for patients and family, and most were discussing place of care with those who discontinue dialysis. There was however little provision for culturally appropriate care and use of the preferred place of care document or end of life guidelines.
No additional funding is available to support this module of the National Service Framework and it is apparent that current palliative care services are already stretched, particularly as so much community palliative and Hospice care relies heavily on voluntary funding and nearly 1/3 consultant palliative care posts are unfilled
Imaginative use of existing resources with a revisiting of priorities within units will be necessary if the opportunity of this module is not to be lost. With the recognition that care of those at the end of life demands a change of emphasis but not of intensity comes the opportunity to reassess use of resources and make a difference to the care of renal patients.
The stated aim of the Renal NSF in Palliative care is:
There are still serious difficulties faced by those who decide not to undergo dialysis treatment, those who choose to withdraw from dialysis after a period of treatment, and those who are coming to the end of their lives while continuing dialysis. The renal NSF identifies the importance of timely evaluation of their prognosis, information for the patient and families to enable them to understand the choices available to them and for those near end of life a jointly agreed palliative care plan with a say in where they wish to die.
The Renal NSF identified the following markers of good practice as a means of taking renal palliative care services forward:
Markers of Good Practice:
To achieve the aims of the NSF the following service requirements would need careful consideration.
The annual incidence of death is the single most important indicator of palliative care need and without accurate data it will be difficult to answer need / demand. Historically renal morbidity levels have been difficult to determine as patients die of other causes / co-morbidities making collection of data difficult.
To draw precise conclusions as to service requirement will require good data on referral patterns and geographic distribution of populations. This will require close co-operation with the Renal Registry (the most accurate source of renal data.)
As previously stated the actual experience that we have is that 12 -18% of renal patients choose to stop dialytic therapies, (Chambers 2005). Recent figures from a hospital operating a palliative care system show that 13.8% of predialysis patients (71out of 514 renal patents) choose not to dialyse. These two groups of patients represent easily identified palliative care phases.
There are no renal figures available at a national level but using the figures from above it can be estimated that approximately 3000 dialysis patient per year would benefit from palliative care. It can only be envisaged that the Renal Unit figure recently obtained that shows the numbers of patients choosing not to dialyse could be extrapolated across the UK .
With the lack of National Data in this area we feel that in order to clearly define requirements and to provide a realistic palliative care service a great deal more research and data collection is needed.
The National Renal Dataset Development project PR 139 is now in the draft stage. The data set has been developed by a group working with the NHS Information Authority to enable performance measurement of the Renal NSF. When fully implemented this project could given the correct data definitions provide valuable data for a renal palliative care strategy.
Estimation of how long a patient has to live is increasingly accepted as a necessary component of care of the dying. However it is accepted equally that a clinician should be as accurate as possible when providing a prognosis to a patient to enable treatment choices to be made.
Defining the point of entry into palliative care and later the point of entry into end of life care is difficult with renal patients and there is often some reluctance on both sides to enter into what is a difficult area of discussion. The progress of CKD is difficult to predict particularly when other co morbidities are involved and as previously stated patients often die of other causes.
Although there is useful data available from USA , Japan etc that predicts patient survival it may not accurately reflect survival rates in the UK and we will therefore need to refer to our own Renal Registry data. There should be universal agreement among all UK renal units as to the data that is used to determine point of entry for renal patients.
The Renal Association has recently published a range of core indicators (see website www.renal.org) that are a positive move towards defining renal palliative care entry.
This is a key area that will need to be defined. A model that ensures a patient centred approach with a clear patient care pathway needs to be developed. Appropriate services need to be signposted allowing access at any point.
It is essential that renal (and other disease groups) are represented on palliative care networks. Renal networks are now becoming well established and they will need to incorporate palliative care service development in their work plans / commissioning needs and have participation in the relevant palliative care network.
A suitable alternative would be a member of the renal team who could act as a “renal palliative care specialist” as a member of the renal network. Where renal palliative care specialists are involved it is important that they have links with specialist palliative care to maintain skills and to keep up to date with changes in practice, innovations etc within speciality palliative care medicine
Renal networks should establish the appropriate communication and network links with palliative care services to improve end of life care for people with established renal failure. One way to achieve this would be to use the Gold Standards Framework, the Liverpool Care Pathway for the dying patient and the Preferred Place of Care tools to support all those nearing the end of their life to enable them to have choice in their treatment and in where they die. This would enable close monitoring and audit of the service available to other disease groups.
We need to ensure appropriate and responsive inter-professional communication paths are in place between the specialist services, GPs, out of hours providers and other outside agencies. We also need to ensure and that they are used appropriately.
The inclusion of renal disease in the Gold Standard Framework (GSF) programme is a positive step forward in holistic fully co-ordinated care. The implementation of this element of palliative care in renal patients needs to be robust and will require careful initial monitoring if full benefit for those patients involved is to be achieved. The small numbers of renal patients in some practices and the difficulties involved with gauging a prognosis may result in patients not receiving the full benefits of this system.
Engaging patients in health policy decision-making helps to ensure that policies reflect patient and caregiver needs, preferences and capabilities, making it an appropriate and cost-effective way to address the needs of the growing number of people with chronic conditions
There needs to be regular joint meetings of user groups (including patients and carers) to promote ongoing development of service needs. Any implementation group needs to ensure that user views are sought on all occasions. Mechanisms should be in place to ensure the views of patients and carers are taken into account in developing and evaluating Renal and palliative care services. Renal networks can provide one potential mechanism.
The communication of “significant news” about their treatment or condition is one of the most difficult times for a patient and family. It is also a time when Staff can face great difficulty. Such communication therefore should always be carried out by a senior clinician (it should not be delegated) who has received advanced level training and has been assessed as being an effective communicator. Wherever possible, the senior clinician should be one with whom the patient is familiar.
Patients should be involved in partnership with their care team and involved in all discussions and decisions about their care and their care plan. Where a patient is not capable of active participation then the patient’s carer / family should participate in all discussions and decision making.
Great confusion can be caused with patients by the non standardisation of terminology. “Conservative management”, Non Dialitic treatment etc, can have different interpretations. It is essential that definitions in Renal Palliative care are clear and fully understood by all staff, patients and carers.
There should be a consistent Breaking Bad News Policy across all organisations dealing with renal patients and staff should strive to ensure privacy for “significant news” giving in all care settings.
A process to ensure that all MDT decision making is documented in the notes is needed. All patient care plans should be regularly reviewed and updated. A permanent record of the consultation should be made available to patients if required. Patients believe there would be benefit in having their own hand held records available for reference.
Part1 of the Renal NSF requires that:
All children, young people and adults with chronic kidney disease are to have access to information that enables them with their carers to make informed decisions and encourages partnership in decision-making, with an agreed care plan that supports them in managing their condition to achieve the best possible quality of life.
Policies should be developed at local (Renal Network / provider organisation / Unit) level detailing the information materials to be routinely offered at different stages to patients.
Commissioners and provider organisations should ensure that patients and carers have easy access to a range of high quality information materials about renal disease and renal services. These materials should be free at the point of delivery and patients should be offered appropriate help to understand them within the context of their own circumstances.
There should be engagement with commissioners to secure recurring funding for Information and information materials.
A process should be in place to ensure that all literature meets the needs of different cultures and disabled user groups to ensure equity of access. An appropriate model should be developed for dissemination of and access to patient information.
The Liverpool Care Pathway as part of their renal pilot is developing some renal end of life care information in consultation with the National Kidney Federation which is the UK’s major supply of renal disease information.
The impact of renal failure on patients goes beyond the clinical aspects of their condition. The lack of psychosocial support in renal care is rated second in the list of problems raised by the majority of patients. This area should not be underestimated in its importance since it covers most of the personal, family, financial, employment and social aspects of patient lifestyles including palliative care requirements, end of life care and bereavement.
In palliative care the availability of social care, counselling and psychological support is paramount.
Nationally such support varies widely from excellent to non-existent in the majority of cases non-existent with too many patients left to deal with the situation.
Structured psychosocial support throughout their lifetime of treatment including the palliative phase is desperately required. To enable this there is a need nationally for appropriately qualified staff (a social worker, counsellor or psychologist) to be fully integrated into the multi-disciplinary team.
Too many patients do not know their rights and suffer unnecessary financial, personal and family stress carrying this without professional help.
There is very little treatment for serious depression which is becoming an increasing problem – 54% of patients have suffered from depression. 31% of patients have experienced a considerable or major impact on their personal relationships as a result of renal failure and transplantation. It is envisaged that these problems will be more acute in the palliative phase of renal disease.
The Commissioners and providers of Renal Services, working through Renal Networks, should ensure that all renal patients entering palliative care undergo systematic psychological assessment at key points and have access to appropriate psychological support.
Social workers, (renal specific) are still well below staff to patient levels recommended in the early 1990s. Too many posts are funded by charity. The 1991 ‘blue book’ recommended that a unit with 200 dialysis patients and 600 associated transplant and pre dialysis patients should have 3 WTE social workers, a dialysis patient: staff ratio of 70:1. This ratio is still not being met.
The split funding arrangements often between a Local Authority / Trust and a Charity mean renal specific social worker posts are often vulnerable not only financially, but also in terms of actual continuity of service.
Explicit partnership arrangements should be agreed between local health and social care services and the voluntary sector to ensure that the needs of renal patients and their carers are met in a timely fashion and that the different components of social support are accessible from all locations. Commissioners should be engaged to ensure the importance of psychosocial support is recognised and adequately funded.
It is essential that at the appropriate time patients and carers have access to staff that are sensitive to their spiritual needs. Multidisciplinary teams should have access to suitably qualified, authorised and appointed spiritual care givers who can act as a resource for patients, carers and staff. They should also be aware of local community resources for spiritual care. Strategies should be developed to ensure timely referrals to spiritual care services where appropriate.
Systems need to be implemented within each care setting to ensure that medical and nursing services are available for renal patients entering palliative care or end of life care on a 24-hour, seven days a week basis, and that any equipment can be provided without undue delay. Those providing specific renal medical and nursing services should have access to specialist palliative care advice at all times.
Primary care teams should institute mechanisms to ensure that the needs of renal patients in palliative care are assessed, and that the information is communicated within the team and with other professionals as appropriate. The Gold Standards Framework now incorporates renal patients and provides one mechanism for achieving this.
In all care settings, the particular needs of renal patients who are in end of life care should be identified and addressed. The Liverpool Care Pathway for the Dying Patient (LCP) renal pilot programme is developing a mechanism for achieving this; it should be evaluated and implemented as appropriate.
Guidelines for referral, assessment and treatment need to be developed within Specialist Palliative Care in collaboration with Renal Network colleagues. This will ensure that appropriate referrals are made to specialist services following recognised levels of intervention. (E.g. those used in cancer services.)
One of the key initiatives to taking palliative care forward is joint working between renal and palliative care teams, recognising that palliative care teams are not there to take over the management of the patient’s care, but to work alongside the renal team offering advice and support as needed. The palliative care team could work both directly with the patient and family and also indirectly by empowering renal staff in the care they give through education and information thus increasing confidence and knowledge as to how patients can receive optimal care during the palliative phase. We should use those studies already done which look at patient preferences in end of life care and moreover ask our own patients how they would want this aspect of the service developed.
Commissioners and providers, working through Renal Networks, should ensure they have an appropriate range and volume of specialist palliative care services to meet the needs of the local population, based on local epidemiology. These services should, as a minimum, include specialist palliative care in-patient facilities and hospital and community teams.
Specialist palliative care advice should be available on a 24 hour, seven days a week basis. Community teams should be able to provide support to patients in their own homes, community hospitals and care homes.
Consideration may need to be given to specialised service personnel dedicated to specific disease groups such as renal.
Anecdotally it is believed that the majority of Hospice and specialist palliative care provision has historically been for cancer patients. Services would have to carefully consider how they were involved with other patient groups. This is a point that will need urgent consideration along with staffing issues and training and development.
As a renal palliative care patient pathway develops, a workforce strategy for professionals in specialist palliative care needs to be developed at local level in conjunction with WDD and PCTs to ensure adequate staff levels and skills. This should be done via PCT local delivery plans. Competencies for individuals working in specialist palliative care who deal with renal patients need to be agreed and combined with an education strategy to provide the workforce with the relevant skills.
Complementary therapy services are readily available to cancer patients and many of the benefits they provide would be applicable to renal patients at the same stages in palliative care. Consideration should be given to inclusion of these services for renal patients and other patients with long term conditions.
Provider organisations should nominate a lead person to oversee the development and implementation of services that specifically focus on the needs of families and carers during the patient’s life and in bereavement, and which reflect cultural sensitivities.
A system would need to be developed that would ensure timely referral of patient and their families when required to Social Services.
There is a need to develop renal bereavement services that are sensitive to specific needs of the patient and family e.g. cultural / ethnic issues.
A Renal Network Education Strategy for bereavement care would be required to inform best practice and lead to a local bereavement educational / Information programme for patients/families and carer’s.
We would need to ensure that the End of Life Initiative continues to be used where appropriate as the final section of this promotes family support.
Strategies should be developed for staff support in renal teams after a death across all care settings.
The Renal Network should develop a network policy for provision of carer/bereavement services. Service providers of therapeutic bereavement services for all age groups, including children should be identified and Commissioners advised.
It should be accepted that bereavement counselling and care will in many cases need to continue for a long period after the patient’s death.
A high quality palliative care service for all patients requires investment in the provision of an appropriate infrastructure, workforce and accommodation, and a commitment to developing processes to enhance care in both general and specialist settings. Commissioners will need to examine carefully their funding of services to ensure that the infrastructure provided is both adequate for purpose and sustainable.
Funding of renal palliative care services will need to be carefully considered as the funding of the renal palliative care service will have to be found completely from the NHS. This may have resource implications as two of the biggest providers of palliative care apart from the many independent hospices in the voluntary sector are Marie Curie and Macmillan, both cancer charities.
Consideration will need to be given to the Commissioning process and its integration with the Renal and palliative care networks.
There is no discrete tariff for palliative care, (as is the case for dialysis modalities and transplantation), for what the NSF clearly states is a treatment choice for patients. There is some funding for parts of the care, (e.g., for Erythropoietin), but otherwise monies have to be found from within the ‘normal’ pre-dialysis budgets, despite this treatment choice having very different financial implications.
If an acceptable service is to be provided, this must be addressed, especially in the light of PBR considerations as it is understood that palliative care will come in line with these arrangement 2007-8. It would appear that palliative care will need to have a separate tariff which surely its importance warrants to ensure that adequate and appropriate funding is made available.
Renal Networks should work closely with the Workforce Development Directorates (the Workforce Development Steering Group in Wales) to determine and meet workforce requirements and to ensure education and training programmes are available. Provider organisations should identify staff that may benefit from training and should facilitate their participation in training and ongoing development. Individual practitioners will need to ensure they have the knowledge and skills required for the roles they undertake in providing palliative care for renal patients.
Each of the above sections will have workforce implications and educational needs. Renal networks will need to scope current staffing levels to identify gaps in service delivery at all points along the patient pathway.
The scoping exercise should inform a local education strategy group and identify the training needs required for all levels of staff to ensure delivery of best practice.
Workforce requirements would need to be identified in future local delivery plans.
Many of the recommendations in this submission are dependent on workforce development - the appointment of additional staff where necessary and the enhancement of knowledge and skills of existing staff.
Front-line staff require enhanced training in the assessment of patients’ problems, concerns and needs; in information giving; and in communication skills. Additional specialist staff will be needed in roles related to information delivery, psychological support, palliative care and support for families and carers.
The renal National Service Framework has identified there is a growing need for palliative care in renal services. A strategy will need to be developed taking into consideration the areas discussed above. It is of concern however that there is already an existing shortfall in palliative care services. The staffing, funding issues etc involved therefore must be addressed as a priority if a renal palliative care strategy is to be successfully implemented and patient needs satisfied.
Robert Wm Dunn