SERVICE SPECIFICATION 6 Conservative Management & End of Life Care

SERVICE SPECIFICATION 6 Conservative Management & End of Life Care Table of Contents Page 1 Key Messages 2 2 Introduction & Background 2 3 Relevant Guidelines & Standards 2 4 Scope of Service 3 5 Interdependencies with other specialties & support services 7 6 Markers of Good Practice 7 7 Quality Measures & Audit Criteria 8 Appendices 1 Impact Statement 2 Consultation Record, Document History & Version Control This document should be read in conjunction with the Common Themes document which is relevant to all Renal Service Specifications. Conservative Management Page 1 of 11 Version:6.3

1 Key Messages Maximum Conservative Management (MCM) is an active therapy option which patients may choose instead of Renal Replacement Therapy. It provides effective symptom control and quality of life. CKD patients should be made aware of the option at an early stage of their education to enable an informed decision to be made about treatment choices When the MCM option is chosen the decision should be made as part of Modality Planning, shared between patient and all disciplines involved in their care, recorded within an Advanced Care Plan and effectively communicated to all clinicians in primary and secondary care In the last days of life, there should be good symptom relief, psychological, spiritual and culturally sensitive care for the dying patient and their family (whether at home, in a hospice or a hospital setting), followed by the provision of culturally appropriate bereavement support 2 Introduction and Background The essence of Maximum Conservative Management (MCM) is symptom control for patients with CKD who have chosen that option in preference to Renal Replacement Therapy (RRT). 3 Relevant Guidelines and Standards NSF Standard 1: Care for all Each patient at risk from, or with renal disease and their family and/or carer makes, in partnership with professionals, informed decisions about their ongoing care and long-term disease management. NSF Standard 2: Prevention of renal disease Each patient with detectable risk factors for developing renal disease is identified and has access to the appropriate care and advice and, where indicated, treatment to minimise the risk. NSF Standard 3: Detection of renal disease Established renal disease is detected early in each patient at increased risk of developing progressive renal impairment. Conservative Management Page 2 of 11 Version:6.3

NSF Standard 4: Delaying progression and minimising complications of impaired renal function Each patient with a diagnosis of chronic kidney disease receives timely, appropriate and effective treatment to reduce the risk of disease progression, and to minimise the development of co morbid complications. NSF Standard 14: Choosing not to dialyse Each patient approaching established renal failure is given timely and understandable information about their prognosis and the choice of therapies available to them including the option of choosing not to dialyse. They are made aware of the relative burdens and benefits of the different types of dialysis. NSF Standard 15: Conservative Management of established renal disease Each patient who chooses not to dialyse is offered ongoing support from the Multidisciplinary Renal Team, and has access to appropriate supportive and palliative care services in primary and secondary care, including advice from specialist palliative medicine. NSF Standard 16: Withdrawal of dialysis A decision to withdraw dialysis is ethical, open, informed and patient-centred, and concords with the patient s best interest principles. Ongoing support is provided by the Multidisciplinary Renal Team and by palliative care services where appropriate. NSF Standard 17: Care in the last days of life The diagnosis of dying is made in a timely manner. The patient has access to a range of services to ensure that their physical, psychological, social and spiritual needs are met effectively, and to enable them to die in their place of choice if possible. End of Life Care in Advanced Kidney Disease: A Framework for Implementation. NHS Kidney Care National End of Life Care Programme Jun 2009 (http://www.endoflifecareforadults.nhs.uk/publications/eolcadvancedkidneydisease) The Quality statement from CG182 Chronic kidney disease: early identification and management of chronic kidney disease in adults in primary and secondary care 4 Scope of Service MCM relies upon close liaison between Primary and Secondary Care clinicians, including the Palliative Care Team. The following definitions have been agreed by the Welsh Renal Clinical Network. Maximum Conservative Management (MCM) is the full and active supportive care provided to all patients with advanced renal disease (egfr normally < 15) who, in conjunction with carers and the clinical team, decide not Conservative Management Page 3 of 11 Version:6.3

to start Renal Replacement Therapy. MCM will be tailored to the individual patient. Effective symptom control and quality of life will often be prioritised over attainment of evidence-based CKD management targets where interventions may adversely affect the patient s quality of life. Advance modality planning refers to a process through which a provisional plan for Dialysis or Maximal Conservative management is made in patients with advanced CKD (egfr < 20 ml/min). This will be periodically reviewed, acknowledging that a small number of patients may change their minds about their desired modality, and the development of significant co-morbid conditions and increasing frailty may mean that conservative-based management may becomes more appropriate. Deteriorating despite dialysis - refers to patients whose general health and/or psychological wellbeing are deteriorating despite dialysis. Significant comorbidities often exist. Increasing frailty and dependency on others will usually be apparent. It is important that this is recognised to allow consideration to be given to Advance Care Planning. End of life care in advanced renal disease is provided to all patients with advanced kidney disease, irrespective of treatment modality. Withdrawal of dialysis will often be appropriate following discussion with a patient and his or her carers. It enables the supportive and palliative care needs of both person and family to be identified and met through the last phase of life and into bereavement. This includes physical care, management of pain and other symptoms and provision of psychological, social, spiritual and practical support. Advance Care Planning refers to a decision making process that allows patients and their carers who wish to make decisions about their future care that may include limitations of care, future withdrawal of dialysis, planning for and of life care. Palliative dialysis is provided with the primary aim of relieving symptoms, notably fluid overload. It will be delivered as part of a care plan coordinated with other renal, palliative and primary care service groups. Monitoring of renal function and bone metabolism may not always be appropriate in this cohort. Central to effective Conservative Management is Advance Care Planning (ACP). There are two main purposes of ACP which are set out in the BCU document My Health, My Care, My Decisions (Oct 2014). Firstly, to help care staff including medical staff to make decisions which respect a patient s general wishes when they are unable to express themselves. Such circumstances may be because a patient has lost capacity either permanently or temporarily or their medical condition prevents them from expressing themselves. Conservative Management Page 4 of 11 Version:6.3

Secondly, to help patients consider the challenges they may face in the future in a less stressful way than would occur if they were to make difficult decisions in an emergency situation. Being able to think about these situations in advance gives many patients an opportunity to make decisions which are more considered than decision they might make when unwell. The above definitions predominantly meant to ensure that secondary care services provided by the Renal team are in place - serves not only as a glossary but also details some key features of the service. The CKD Specification, some of which appears below, should be referred to for important detail relating to the service and due to overlaps with that service. Primary Care and Palliative Care services will play important parts in providing a high quality service. This document does not explicitly address those services. A pathway is shown in Appendix 3. A key element of the service, which will apply to all CKD patients, is Advance Care Planning. Patients with progressing disease will, if the CKD specification is followed, receive education and counselling. Within that education and counselling the patient will be advised about all forms of Renal Replacement Therapy (RRT). MCM does not exclude RRT and patients may change their minds and experience both modalities. Unless the patient has another life limiting disease it is likely that Maximum Conservative Management will be initiated in secondary care and that the patient s GP will play a role in symptom control. The CKD Specification states: Patients with progressive CKD will enter the pathway when it is clear that kidney function is declining and that without some form of renal support they will become increasingly symptomatic and kidney failure may become life limiting. People with CKD in the following groups should, subject to presence of comorbidities and patient wishes, normally be referred for specialist assessment: GFR less than 30 ml/min/1.73 m 2 (GFR category G4 or G5), with or without diabetes ACR 70 mg/mmol or more, unless known to be caused by diabetes and already appropriately treated ACR 30 mg/mmol or more (ACR category A3), together with haematuria sustained decrease in GFR of 25% or more, and a change in GFR category or sustained decrease in GFR of 15 ml/min/1.73 m 2 or more within 12 months Conservative Management Page 5 of 11 Version:6.3

hypertension that remains poorly controlled despite the use of at least 4 antihypertensive drugs at therapeutic doses (see also Hypertension [NICE clinical guideline 127]) known or suspected rare or genetic causes of CKD suspected renal artery stenosis This will include patients who may subsequently decide not to have RRT and opt for Maximum Conservative Management (MCM) instead. Most patients will enter the MCM pathway with an egfr of less than 15 ml/min/1.73m and evidence of a progressive decline. A detailed Conservative Management and End of Life service specification exists separate to this service specification. There are overlaps and patients will change modality between the two, and hence access services in both. If not already initiated patients (and carers) will be encouraged to start to plan their care, aided by suitable education, in advance. The preferred modality of treatment can be recorded in an Advance Care Plan, which will be made known to the patient s GP. Many patients will already be known to nephrology services and be managed in CKD clinics. However, others may be referred directly from other hospital departments, from hospitals that do not have nephrology services and from primary care. All CKD patients will be assessed using the all Wales Assessment Tool to identify whether entry to a supportive care register is required. A Supportive Care Register will be maintained, based on the Gold Standards Framework (or similar). The register will be regularly reviewed by the MDT. Any amendments to the register will be shared with the Primary Care team and any other relevant clinicians. Patients and carers will be advised to seek legal assistance with aspects of advanced care planning. Advanced Decision to Refuse Treatment (ADRT), and lasting power of attorney for health and welfare are examples where legal assistance may be beneficial, though not a requirement. Staffing: A Specialist Nurse and Nephrologist will lead an MDT which may not meet but exchange information and plan and review treatment as and when the patients needs dictate. The team will have input from, the following: GP and/or Practice Nurse Social Work Specialist Palliative Care Clinical Psychologists Pharmacists Dieticians Conservative Management Page 6 of 11 Version:6.3

The team will review the registered patients with urgent needs, so that timely care is provided and assurance given. Initiation: If referral is late in the pathway initiation of care will involve a shorter period of education, and less of the care planning will be in advance of the onset of end stage disease. Care will be more akin to the Palliative Care associated with other terminal diseases. 5 Interdependencies with other specialties & support services As the patients needs are likely to emanate from multiple comorbidities services will not be located in one place. Due to the services the patient will access, sometimes in acute phases of illness, it will be especially necessary for there to be IT systems connecting primary and secondary care, easily accessible by all specialties and at hospitals other than the patient s local hospital. 6 Markers of Good Practice The satisfaction with services is assessed by contact with the carer before and after death An electronic renal supportive care register is in place which includes all patients who have chosen MCM, those with failing transplants who decide not to return to dialysis and those who are deteriorating despite dialysis and are thought to be in the last year of life The provider will offer all patients, together with their families and carers, an appropriate education programme aimed at improving their knowledge and understanding of their condition, and of the options for treatment The treatment option chosen is recorded in a Modality Plan All MCM patients and other appropriate patients and their carers are offered the opportunity to record, and then update, an ACP An MDT approach to the review and provision of care is provided to all registered patients Each Renal Unit has a designated lead Nephrologist and Palliative Care Consultant Root cause analysis takes place for those patients who choose MCM but subsequently dialyse Conservative Management Page 7 of 11 Version:6.3

7 Quality Measures and Audit Criteria Audit of MCM outcomes including proportion who have dialysis and proportion who eventually die in the place of their choosing The number of those people who have established renal failure and receive psychosocial support will be recorded All MCM patients have a named key worker The level of patient and carer satisfaction with the ACPs is assessed and reported Gold Standard Framework guidance is followed, and documented for each registered patient All renal staff involved in MCM have undergone appropriate training as evidenced by competency based training plans The method of measuring adherence to the specification, and the above markers will be via the quarterly reporting arrangements, national audit and any clinical visits or service inspection. Conservative Management Page 8 of 11 Version:6.3

Appendix 1: Impact Statement This would be a general statement of possible impact and/or a record of what the impact on each provider is agreed to be. The value of such a statement in this appendix will be reviewed during 2016 before a statement is included Conservative Management Page 9 of 11 Version:6.3

Appendix 2: Consultation Record, Document History & Version Control Document Author: Executive Lead: Approved by: Issue Date: Review Date: Document No: Document History Insert Role Title Insert Role Title Insert Committee To be obtained from Corporate Services Manager or Corporate Governance Manager Revision History Version No. Revision date Summary of Changes Updated to version no.: Date of next revision Consultation Name Date of Issue Version Number Approvals Name Date of Issue Version No. Distribution this document has been distributed to Name By Date of Issue Version No. Conservative Management Page 10 of 11 Version:6.3

Appendix 3: Conservative Management Page 11 of 11 Version:6.3