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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)
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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
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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.
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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).
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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.
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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).
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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).
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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).
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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)
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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.
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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).
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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
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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.
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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. (2007) Changing European CKD trends: a call to action Journal of Renal Care
33, (4), 148 – 152
Burns, A. (2003) Conservative Management of End Stage Renal Failure: Masterly inactivity or
benign neglect Nephron Clinical Practice 95, 37-39
Central Statistics Office, Dublin, Ireland www.http/cso.ie
Clarke, D. (2004) History, gender and culture in the rise of palliative care Palliative care nursing ,
principles and evidence for practice Open University Press, Berkshire, England
Cohen, L., Moss, A., Weisbord, S. et al (2006) Renal Palliative care Journal of Palliative
Medicine 9, (4), 977 – 992
Chan, C-H., Nobel, H., Lo, S-H. et al (2007) Palliative care for patients with end stage renal
disease: experience from Hong Kong International Journal of Palliative Nursing 13, (7), 310 314
Gunda, S., Thomas, M., and Smith, S. (2004) National survey of palliative care in end stage renal
disease in the UK Nephrology Dialysis Transplantation 20, (2), 392-395
Ho-dac-Pannekeet, M. (2006) PD in the elderly – a challenge for the (pre) dialysis team
Nephrology Dialysis Transplantation 21, 60 -62
Irish Cancer Society, Dublin, Ireland www.http/irishcancersociety.ie
Irish Hospice Foundation, Dublin, Ireland www.http/irishhospicefoundation.ie
Levy, J, Chambers, J and brown, E. (2004) Supportive care for renal patients Nephrology dialysis
Transplantation 19, (6), 1357 – 1360.
Mallick, N. and El Marasi, A. (1999) Dialysis in the elderly, to treat or not to treat? Nephrology
Dialysis Transplantation 14, 37 -39
Munshi et al (2001) Out come of renal replacement therapy in the very elderly Nephrology
dialysis Transplantation. 16, 128 – 133.
Munshi, SK., Bell, SL. And Warwick, G. (2003) Ageism in renal replacement therapy Nursing
Older People 15, (9).
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Murtagh, F., Murphy, E., Shepherd, K. (2006) End of life care in end-stage renal disease: renal
and palliative care British Journal of Nursing 15, (1), 8-11.
Nobel, H. and Kelly, D. (2006) Supportive and palliative care in end stage renal failure
International Journal of Palliative Nursing 12, (8), 362 – 367
Nobel, H. and Kelly, D., Rawlings – Anderson, K., et al (2007) A concept analysis of renal
supportive care: the changing world of nephrology Journal of Advanced Nursing 59, (6), 644 –
653.
Oreopoulos, D. (1995) Withdrawal from dialysis: when letting die is better than helping to live
The Lancet, 346, 3-4.
Owens, D. (2006) Palliative Care and End Stage Renal Disease Journal of Hospice and Palliative
Nursing 8, (6), 318.
Poppel, D, Lewis, M and Germain, M. (2003) The Renal Palliative Care Initiative Journal of
Palliative Medicine 6, (2), 321-326.
Price Rabetoy, C. and Cohen, L. (2003) Integrating palliative care into dialysis treatment: an
American Perspective Towards a closer understanding, European Dialysis and Transplant Nurses
Association, Luzern, Switzerland.
Swartz, RD. and Perry, E. (2003) Advance directives are associated with ‘good deaths’ in chronic
dialysis patients Journal of the American Society of Nephrology, 3, 1623 – 1630.
Smith, C., Da Silva-Gane, M. Chandna, S. (2003) Choosing not to dialyse: Evaluation of planned
non-dialytic management in a cohort of patients with end stage renal failure Nephrology Clinical
Practice 95, 40 – 46.
Stengel, B., Billion, S., Van Dijk, P. et al. (2003) Trends in the incidence of renal replacement
therapy for end stage renal disease in Europe, 1990 – 1999. Nephrology Dialysis Transplantation
18: 1824 – 1833
The National Health Strategy ‘Quality and Fairness – A Health System for You’ (2001) The
Department of Health and Children, Dublin, Ireland
The National Service Framework for Renal Services. Part 2: Chronic Kidney Disease
www.dhgov.uk/en/healthcare/nationalserviceframeworks/renal/index.htm
Szromba, C. (2007) Palliative care in patients with CKD Nephrology Nursing Journal 34, (5),
551 – 552
Kuebler, K. (2001) Palliative nursing care for the patient experiencing end – stage renal failure
Urologic Nursing, 21, (3), 167 – 168, 171 – 8, 183 – 4.
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