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Irish Nephrology Nurses Association Submission to The Irish Hospice Foundation on the Draft Report ‘Palliative Care for All’ (Susan McKenna (2008) & reviewed by Margaret McCann) -1- Introduction The incidence of Chronic Kidney Disease (CKD) is increasing rapidly each year in Ireland. CKD is a grave, life shortening chronic disease. The progression of this disease cannot be reversed or halted and eventually leads to End Stage Renal Disease (ESRD) and a requirement for Renal Replacement Therapy (RRT) to maintain life. There is a recognised relationship between increasing age and the increasing incidence of CKD. This relationship may be due to a number of factors, such as, increasing longevity and the rising prevalence of Type 2 Diabetes Mellitus but also to better recognition and referral of CKD. This aging cohort of people with CKD can also present with significant co-morbidity, a factor known to substantially increase their mortality rate when commenced on dialysis. As the number of patients with CKD continues to rise they have a shortened life expectancy and carry a high symptom burden (Cohen et al, 2006). Nephrology services historically offered patients approaching ESRD three treatment options: Hemodialysis, Peritoneal dialysis and / or Transplantation. No specific alternative services were available to patients who either refused or were unsuitable for RRT (Murtagh et al, 2006). The severe symptom burden of ESRD and a growing recognition that the provision of dialysis to elderly patients may not improve survival rates, while adversely effecting quality of life, led to the advent of what is now called conservative management and supportive care without the commencement of RRT (Murtagh et al, 2006). Conservative management does not mean withdrawing all care but should continue actively addressing physical and psychological support, diet, drug treatment for anaemia, hyperphosphataemia and other uraemia related problems within -2- the renal clinic setting until such time as end-of-life care is required (Nobel and Kelly, 2006). As patients’ conditions decline into symptomatic uraemia they develop complications of ESRD such as pruritis, diarrhoea, loss of appetite, fluid retention and dyspnoea. Patients will then require palliative care to ensure they receive appropriate treatment to minimise symptoms and experience a ‘good death’. The needs of these patients are great and they require specialist knowledge and support from health care professionals who have experience with this patient cohort and their specific burden (Murtagh et al, 2006). However, there is a recognised gap in palliative services to this specialized group of patients with only 4.8% of non cancer patients availing of hospice care in England (Gunda et al, 2004). Unfortunately from personal and antidotal experience the same is true in Ireland. There appear to be real gaps in the current configuration of support services for patients who attend the local renal low clearance clinic and who opt for the conservative management of their CKD. Chronic Kidney Disease There has been much interest in the increasing numbers of elderly people with severe renal impairment and a number of research papers have explored this phenomenon. Stengel et al (2003) comprehensively studied the incidence of ESRD in Europe and found, while increasing age was the most important factor, the most startling feature was a doubling of the incidence of ESRD due to diabetes, hypertension and renal vascular disease. Munshi et al (2003) also point to a more holistic rationale for the factors that can be implicated in the significant increase in numbers of patients requiring RRT pointing to a more open acceptance rate which may reflect on a changing attitude to the provision of RRT to the elderly. The increase in the number of dialysis facilities and advances in dialysis therapies & better treatment of adjunctive medical conditions make it possible to offer RRT to patients. -3- Over the past decade, in Ireland, there has been a dramatic increase in the numbers of patients being diagnosed with severe renal disease. CKD stages 3-5 (estimated Glomerular filtration rate < 60mls/min) now affects approximately 140,000 – 180,000 people. The cause of this dramatic rise in the incidence of CKD is multifactoral but it is universally recognised that with advancing age the incidence rises sharply. The life expectancy rates for both Irish men and women have increased consistently in recent decades to >75 years for men and > 80 years for women, yet advancing age is also significantly associated with chronic illness and co-morbidities. (National Renal Service Review, 2007. Gunda et al, 2004. Murtagh et al, 2006. Central Statistics Office, 2008). As there is no national Renal Registry in Ireland it is difficult to gather accurate statistics on the incidence and prevalence of CKD in Ireland. There is however an annual survey conducted by the Irish Kidney Association on the numbers of patients requiring RRT and their modalities (figure 1) and this review highlights an increase of 18.5% in the prevalence of ESRD with an increase of almost 40% in the number of patients receiving hemodialysis. As recognised in other jurisdictions, using RRT data to extrapolate numbers of the population with CKD can lead to an underestimation of the burden of CKD (Bennett, 2007). -4- Table 1 - Number of prevalent ESKD patients (Modality) in Ireland over a 3 year period HD PD Dialysis Transplant Total Dec 2003 826 187 1013 1391 2404 Dec 2004 978 213 1191 1379 2570 Dec 2005 1146 197 1343 1505 2848 Irish Kidney Association (2006) A Cardio-Vascular Strategy has been in place and receiving allocated funding since 1999 and has shown to have had a very significant impact on the mortality rates despite the unprecedented growth in the Irish population of 15.7% in the past decade (Table 2). Table 2 - Death rates from coronary Heart disease in Ireland 2000 - 2006 2000 2001 2002 2003 2004 2005 6589 6163 6107 5583 5064 4860 Central statistics Office, Dublin, 2008 Interestingly, the success of such a strategy seems to correspond with the rise of CKD and is in all likelihood contributing to the unprecedented number of patients with Ischemic Heart Disease now being seen at nephrology clinics. -5- Conservative management In Ireland there are currently 3,000 people receiving RRT, dialysis or transplantation. The prevalence and improved management of significant co morbid conditions, for example Diabetes Mellitus and Ischemic Heart Disease, is impacting on the epidemiology and age profile of those with CKD. There is significant burden associated with dialysis and it can be poorly tolerated by elderly patients. In the past the age of those who reached ESRD was a factor in limiting those chosen to commence RRT but now most nephrologists do not consider age, in itself, to be a barrier to RRT (Munshi, Bell and Warwick, 2003). Unfortunately those elderly patients who advance to ESRD are at higher risk of dying than the general population (Cohen et al, 2006). Arnold and Liao (2006) equate the delivery of a diagnosis of CKD with being given the diagnosis of cancer producing a range of physical and psychological symptoms that are comparable to those of cancer patients. The 5 year survival for patients who receive dialysis is roughly half that for patients with a diagnosis of cancer and within this context discussion for palliative care is especially appropriate (Cohen et al, 2006). While dialysis for this population can be a viable option there needs to be considered thought put into the complexity of co morbidities and patient choice. Often conservative management is the only other alternative. This can often be viewed as an appropriate and more realistic and beneficial treatment option for patients (Levy et al, 2004). In the past there has been a reluctance to offer conservative / palliative care as a treatment option but as the demographics of patients attending the (Low Clearance Clinic) LCC continues to change, health care providers are beginning to focus on the needs of those not suitable for or opting out of RRT (Nobel et al, 2007). -6- Patients need to be informed that the dialysis treatment that they will embark on is not a definitive cure and that their prognosis may be limited (Nobel et al, 2007). Norton (1969) as cited in Ashby et al, 2005 defined haemodialysis as a ‘palliative treatment’ but with technical advances the notion of dialysis being a death delaying treatment has shifted to an almost routine lifesustaining treatment (Ashby et al, 2005). CKD and palliative care Historically hospice programmes provided palliative care or end of life care that includes control of pain, restoration of functional capacity as well as psychological, social and spiritual support (Szromba, 2007). However palliative care also focused almost exclusively on attending to the needs of patients with cancer and usually within a brief time frame. While there is an awareness of the almost exclusivity of cancer palliative services, other chronic terminal conditions such as ESRD require specialist palliative care support to provide supportive end of life care to this patient population. In the current literature there is a tangible shift towards quality of life issues and the provision of palliative supportive services to those whose condition surpasses the curative medical model and when patients are clearly in terminal decline (Price Rabetoy and Cohen, 2003). Those working in the area of nephrology practice now have to face the patients’ choice of death over treatment, a situation they have primarily set out to avert (Ashby et al, 2005). As the numbers of patients with terminal CKD continue to grow there is recognition that the symptom burden of this patient cohort requires specialist palliative intervention. In the UK it is estimated that 13,000 patients die each year of kidney related disorders and that 50% of all patients who develop ESRD will die within 3 months. Despite such statistics, palliative care for these patients continues to be a neglected aspect of nephrology practice (Gunda et al, 2005). -7- According to Nobel and Kelly (2006) there are still gaps in the level of supportive care services for patients with terminal CKD in many UK centres with patients receiving inadequate multidisciplinary follow-up or being discharged directly back to the GP leading to ineffective management of their terminal illness and a failure for the patient to end their life at home while unnecessarily experiencing a distressing and painful death. In the USA only 10% of patients with ESRD receive palliative care. Owens (2006) states that while Medicare funding is a factor in the underutilization of palliative services the reluctance of Nephrologists to refer patients to this service may also result from a belief that palliative care equates with end-of -life care, perhaps believing that such an treatment option reflects poorly on their medical interventions and inability to medically manage their patients. In order to address this deficit Nephrologists need to recognise the positive impact that contemporary models of palliative care can have on their patients’ outcomes and quality of life. In North America there have been pioneering moves to recognise the growing acceptance that the realities of an aging population, inappropriate use of technological resources, and concerns over unnecessary prolongation of suffering in hospitals combined with a rapidly inflating health budget which has catalyzed the interest in integrating palliative care into nephrology practice and a recognition that futile medical interventions may not always be in their patients best interests (Price, Rabetoy and Cohen, 2003). To this end there has been clearly defined guidelines have been drawn up to assist those working with the emotive and ethically challenging issues surrounding conservative management. The 1999 ‘Shared Decision-Making in the Appropriate Initiation and Withdrawal of Dialysis’ provides the analytical framework around the issues of shared decision making, informed consent or refusal, estimating life expectancy and quality of life, conflict resolution, advance directives and palliative care (Price, Rabetoy and Cohen, 2003). -8- The recognition that there is a need to provide appropriate and humane end-of-life care to patients with terminal CKD has also been addressed by other nephrology service providers. In a retrospective study by Chan et al (2007) a new collaborative renal / palliative care team (RPC Team) was initiated in 2004 to provide palliation, symptom control, referral to other relevant services and consultation with a multidisciplinary team at case conferences to ensure patients end of life needs were met. The RPC Team appeared to complement their current service model by providing a new innovative support mechanism aimed at ensuring patients achieved the best quality of life as their condition declined providing them with support and dignity. However this paper does not look at the success of the RPC Team on a qualitative level and thus lacks a patient perspective on the ‘success’ of the service. In England the recent National Service Framework for Renal Services (Department of Health, 2005) prompted one nephrology service to initiate a combined clinic, run jointly by renal and specialist palliative care staff, to address the complex needs of their patients enabling them to maintain a good quality of life while reducing hospitalization and length of stay. This innovative service also highlighted the need for the development of service standards and the urgent requirement to provide managed care to those who choose conservative management (Murtagh et al, 2006). In a comprehensive retrospective review of the newly established renal / palliative care team, at a London hospital, it was found that the provision of a combined palliation service in conjunction with specialist knowledge of a renal multidisciplinary team succeeded in allowing patients have good symptom control and maintenance of a good quality of life. By allowing patients to make informed choices, interventions meant that they were more likely to avoid hospital admission and to die at home (Murtagh et al, 2006) -9- In Ireland, there is a well recognised palliative care service and, while there is local collaboration between Nephrology and Palliative service, this working arrangement is very reactive and addresses the terminal needs of patients with no formalized management plan with consideration for patients own treatment goals or wishes. Locally, patients with CKD are referred to a Renal Low Clearance Clinic where their renal function is monitored by a multidisciplinary team. All members of this team provide information and support to both patients and their families on their treatment options in relation to ESRD including conservative management. All efforts are made to assist those patients who opt for conservative management of their CKD with good lines of communication between community services and palliative care. However while individual efforts can meet the needs of those patients able to attend the LCC, there needs to be a more structured approach available to ensure that patients end of life needs, within the community, are fully met according to their wishes. - 10 - Conclusion The causes of the exponential increase in the numbers of patients with CKD is clearly very complex and multifactorial yet it seems as if the successes of, for example Cardiac Strategy, highlights the fact that better management and success in managing Coronary Heart Disease has a ‘down stream’ impact on patients and the health service. The lack of a Renal Strategy and the delay in implementing a national renal service review misses the opportunity to tackle CKD at a primary care level. The epidemic of CKD requires that all modalities of treatment of ESRD, dialysis, transplantation and conservative management, are viable options for patients. There needs to be an acceptance that age in itself should not preclude a patient from commencement onto RRT but each individual case should be evaluated and an assessment of biological rather than chronological age should be used as a predictor of acceptance for dialysis. However, there are clinical and resource implications that need to be addressed to ensure the planned management of this growing phenomenon (Mushi et al, 2001). - 11 - Recommendations 1. Those patients with CKD opting for conservative management must be offered ongoing support by the multidisciplinary team in liaison with community and hospice services as required. 2. Recognised standards of care and management pathways need to be put in place to ensure a streamlined access to quality care and services. 3. There is a need to combine the expertise of palliative medicine specialists with nephrology health care providers so ensuring renal patients and their families receive the best care and best quality of life (Arnold and Liao, 2006, Cohen et al, 2006). 4. There is a need to generate standards for the development of a renal palliative service and to conduct research on this topic (Murtagh et al, 2006). 5. There needs to be innovative approaches to CKD care where there is the development of partnerships between health care providers, international groups, academic centres to develop programs for the early detection and referral of patients with CKD (Bennett, 2007). Accurate information is required to ensure the provision of planned renal services in the future. Unless there is systematic information gathering on referral patterns or on the decision process not to treat ESRD it is impossible to ensure responsive and planned appropriate care (Stengel et al, 2003). 5. In an effort to maintain patients in the community and reduce hospital admissions ease of access to palliative care teams is essential with the development of a formalized streamlined route to access these services for ill and terminally ill patients with CKD. 6. More research is needed to generate knowledge on the benefits of conservative management of patients with terminal CKD, to ensure that the patients and families point - 12 - of view is acknowledged in a qualitative manner on the success of the conservative management. 7. While strategic directions for the expansion of nephrology services are an imperative, in their absence there needs to be innovation in our practice such as the development of renal palliative care teams (Murtagh et al, 2006) or the provision of assisted peritoneal dialysis as advocated by Ho-dac-Pannekeet (2006) to meet the needs of patients. 8. Standards of best practice in conservative management need to be in place to ensure a well-organized and efficient transition from supportive care to palliative care, thus assuring a ‘people centred service’ with a reorientation of services to streamlined access to palliative supportive services along the complete trajectory of Chronic Kidney Disease. Maintaining a patient focus in the care of those who have decided not to receive RRT requires us as health care professionals to be open and honest with those we treat and to provide them with an opportunity to discuss end of life issues and to introduce the notion of advance care directives. To support patients fully informed decision to opt for conservative management of their kidney disease requires all health care providers to have in place defined care pathways outlining the interventions at each step of the journey to end of life. Creating awareness of the issues surrounding the needs of patients with terminal CKD is also essential to providing a holistic approach to care which must include a comprehensive package of public health awareness, screening, diagnosis, treatment and end of life care to patients that is fully supported by the legislature. - 13 - References Arnold, R. and Liao, S. (2006) Editorial: Renal palliative care: Supporting our colleagues, patients and family Journal of Palliative Medicine 9, (4), 975 – 976 Ashby, M., Op’t Hoog, C., Kellehear, A, et al (2005) Renal dialysis abatement: lessons from a social study Palliative medicine, 19, 389 – 396 Bennett, L. 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