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Understanding the journey travelled by patients and carers- living with end stage kidney disease

Photo: Living with end stage kidney disease and haemodialysis
Patients living with chronic kidney disease (CKD) have complex clinical needs requiring evidence based nursing care. Often the focus of evidence based care is towards interventions that are readily demonstrated to be effective through interventional trials.

People experiencing CKD however, require nursing and healthcare that goes beyond the available quantitatively biased evidence base. Care required needs to incorporate a deep recognition of the ecology and relationships that influence decision making and outcomes of care.

The prevalence of chronic diseases including CKD, in our societies are strongly anticipated to increase due to an ageing population and extended life expectancy, which has already resulted in frailer elderly populations (Abdelhafiz et al. 2013). Although through timely and appropriate management of their CKD and multiple co-morbidities, not all patients living with CKD will experience a decline of their kidney function, to end stage kidney disease (ESKD). Many patients with advanced CKD carry a heavy burden of co-morbidities and as a result, around 50% of this population die from cardiovascular disease before reaching ESKD (Cho et al. 2012).
Importantly then, CKS-ESKD has become a global socio-economic epidemic (Paraskevas et al. 2010). By the end of 2011, with a worldwide population of seven billion people, it was estimated that around 2,786,000 patients were living with ESKD and undertaking renal replacement therapies (Frensius Global Services, 2011). In Australia of the 9,219 patients living with ESKD and receiving haemodialysis therapy in 2012, a 3% increase from 2011, there were 51% of patients aged 65 years and older including 27% of patients aged 75 and older (ANZDATA, 2013). Patients’ lives become burdened with the chronicity and complexity of kidney disease and multiple co-morbidities such as diabetes, peripheral cardiovascular disease, reduced cognitive function – dementia (MacPhail et al. 2012); as well as complex time consuming treatment regimens and travel to and from treatment (Moist et al. 2008). When combined this frequently results in complete life changing experiences, which often has a devastating effect on the patients and their family and friends as well as their carer(s) lives (Kastrouni et al. 2010).

Management
Patients living with CKD travel through five stages of their disease as they progress towards ESKD. These stages are related to their estimated glomerular filtration rate (eGFR) as a measure of kidney/renal function (Sood et al. 2015), aligned with patient’s age (Hallan et al. 2012) and symptom burden (Jansen at al. 2013).
Ideally, during the early stages of CKD, usually considered as stages one to three of kidney disease/dysfunction, patients experience management of their CKD by primary care professionals – their local general practice doctors and practice nurses. It is the aim of primary healthcare management of CKD to provide interventions to slow down the decline and preserve the patients residual kidney function (Campbell and Duddle, 2010; White et al. 2010), and manage and treat symptoms of CKD and co-morbidities such as diabetes, hypertension and cardiovascular disease. As CKD progresses, the patient’s symptom burden increases and they are generally referred to a nephrologist’s care (Johansen et al. 2013). The patient along with their family and friends, whose role as carers include supporting patients in their daily lives (Godbold, 2013) are involved in healthcare education supporting their decision making processes. Importantly the patient and their family/carer(s) require individualised healthcare planning, education and information disseminated to meet their own needs (Moustakas et al. 2015). Notably, a patient’s cognitive function may decline in conjunction with their deteriorating kidney function and increasing symptom burden (Campbell and Duddle, 2010).

When CKD progresses through stage three and early stage four patients and family/carer(s) are faced with decisions that influence the course of the rest of their lives – choosing between conservative or interventional ESKD care.

At all times, none more so when considering life altering decisions, it is important that the patient has a voice in decisions made about their care, even when the individual displays reduced cognitive function (MacPhail et al. 2015).

Patients and family/carer(s) may choose conservative care based on medic al management without initiating renal replacement therapies (RRT). The patient’s CKD is managed through renal supportive care processes, coordinated through the role of a renal specialist supportive care clinical nurse (Josland et al. 2012) Renal supportive care processes include a holistic approach by a team including multidisciplinary healthcare professional, the patient and their family and friends as carers for the management and care of the patient’s physical and psychological healthcare needs. Importantly addressing patient and family/carer(s) wishes, are key objectives to improve the patient’s and family/carer(s) quality of life (QOL). Management of a patient’s CKD in order to slow the progression of the patient’s declining kidney function, manage multiple co-morbidities and symptom burden aligned with supporting patient and family/carer(s) psychological healthcare needs and their management of personal affairs is central.



Brown and Crail (2013) relate, because the element of dying is rapid when reaching ESKD. This involves a holistic multidisciplinary/multi-professional team response to the patient’s preferred place of care and care needs for the patient and family/carer(s), towards the end of the patient’s life journey.

It is important that healthcare professionals maintain good communication with the patient and family and/or friends, as the patient’s symptom burden is similar to that of patients living with cancer or end stage heart failure (Brown et al. 2013). Alternatively the patient may choose a pathway that includes preparation to receive a living donor kidney or inclusion on a waiting list in the anticipation of receiving a cadaver donor kidney transplantation. Due to the lack of availability of cadaver donor kidneys for transplantation, it may take a lengthy period of time and patients generally experience living with ESKD for many years before a cadaver donor becomes available, if at all. Additionally, other factors present mean the patient may not be suitable to receive a kidney transplant, such as advanced aged and/or co-morbidities and frailty (Fedderson and Rodger, 2012).

Some patients may choose not to undergo kidney transplantation as there are alternative options of dialysis RRTs. Dialysis options include peritoneal dialysis, or alternative modes of haemodialysis which require a mature/viable vascular access in readiness for the patients first haemodialysis therapy (Fedderson and Rodger, 2012; Polkinghorne et al. 2009). Chanouzas et al. (2012) propose that there are important factors that can influence patient selection in treatment options of RRTs, such as the information related to option outcomes, which is presented to patients and their family/carer(s). Studies comparing peritoneal dialysis to haemodialysis have shown overall patient survival rates to be similar (Moist, 2014). For people who travel towards RRT, the nephrologist will embark the patient on a pre-dialysis pathway including referring patients to a vascular surgeon and close monitoring through a schedule or pre-dialysis clinic visits. This is to manage the progression of the patient’s CKD and empower patients and family/carer(s), through individualised and timely education supporting their health, treatment management and self-care (Cho et al. 2012).

In order to receive haemodialysis therapy, patients require the surgical formation of vascular access. Studies comparing vascular accesses of native arterio-venous fistula (AVF), synthetic arterio-venous graft (AVG) and haemodialysis central venous catheters (DCVC) have displayed all options may result in the patient experiencing complications (Moist, 2014). However, patients are placed at an increased risk of complications associated with AVGs and DCVCs along with reduced survival rates of their vascular access (Feddersen and Roger, 2012). For example DCVCs have resulted in higher risk of fatal infections and cardiovascular events compared to AVFs (Moist, 2014).

Unfortunately, patients can experience their RRT and vascular access being associated with a reduced QOL, co-morbidities and mortality. In the majority of reported incidences this can be attributed to thrombosis and infection of their vascular access and/or septicaemia. As such, maintaining a viable vascular access and managing the risk of complications is beyond the capacity of the patient’s healthcare team alone.

Support
The patient and their family and/or friends who have an interest in the patient’s care have a contributing role in maintaining the viability of the RRT the patient is receiving and in reducing complications such as infection. Adopting a family centred approach to nursing care that is empowering and inclusive the family and/or carer(s) has been demonstrated to enhance patient care outcomes (Cowan et al. 2015).

Decisions regarding the most suitable vascular access option for a patient remain individual. Factors to consider include patient age and gender (de Leur et al. 2013), cardiovascular status (Swinnen, 2011), patient and family/carer(s) wishes and lifestyle (MacPhail et al. 2015). Other factors include the timing of surgery and surgeon’s experience/skills, maturation time, interventions, monitoring and surveillance (Polkinghorne et al. 2013). Vascular access nurse coordinators retain vital and various roles in supporting nurses, patients and family/carer(s), primarily optimising the viability of the patient’s vascular access (Polkinghorne et al. 2009). Collaboration with the patient, their family and/or carer(s) to empower the patient through education and skill developing to self-care by monitoring, protecting and caring for their vascular access both prior and after commencing haemodialysis therapy is essential. Importantly nurse practitioners support the patient’s, family/carers’ and nephrologist’s role in the patient’s and their family/carers’ transition from CKD to ESKD in care management (Brown and Harvie, 2010).

Patient and family/carer(s) QOL as an outcome of care can be influenced by the timing of the patient’s pre-dialysis care. This will include the timely surgical creation and optimal time for maturation and any necessary interventions that promote the viability of the patient’s vascular access prior to commencing haemodialysis therapy (Fluck and Kumwenda, 2011). A patient’s pre-dialysis pathway also requires healthcare professionals whose roles include supporting the empowerment of the patient and family/carer(s) roles within the patient’s healthcare team. Ultimately, these are all key factors that contribute greatly to the viability and longevity of the patient’s vascular access and effectiveness of their haemodialysis therapy and therefore QOL as an outcome of care, of the patient and that of their family/carer(s).

Once the patient commences haemodialysis therapy, their journey continues as a routine of treatments and in particular haemodialysis therapy. The majority of Australian patients living with ESKD receiving haemodialysis therapy as their RRT attend satellite haemodialysis units (SHDU) for management and care, as an example in 2012, 61% of the population attended SHDUs (ANZDATA, 2013). For patients such a routine of attending a SHDU community for management and care does not cease until the patient receives a kidney transplant or becomes too unwell and transfers to hospital and/or continues to receive their haemodialysis therapy in one of the acute care haemodialysis units. The patient and their family/carer(s), may reach a point in the timeline of the patient’s journey, where they make the decision that the patient withdraws from dialysis therapies and receives renal supportive care including medical management, which may last a short time of a few days or weeks until the patient passes away (Josland et al. 2012) Discontinuation of RRTs is seen most frequently (although not exclusively), in the older populations of patients living with ESKD. Around 20% of patient deaths are preceded by withdrawal from dialysis (Tong et al. 2014). Although such decisions are challenging, the chronicity and complexity of living with ESKD, co-morbidities and treatment burden can outweigh the medical and psychological benefits for an individual patient.

The patient may experience a number of vascular access related problems requiring revision, revival or replacement of their vascular access. Utilising fewer and less viable options over time frequently attributed to the patient’s peripheral-cardiovascular disease. The patient may have become devoid of any permanent vascular access options to continue receiving haemodialysis therapy. This is why the patient’s vascular access is generally referred to as their life-line (Moist et al. 2013; Schmidt et al. 2012; Wang et al. 2008). This overview of the journey travelled by patients, their family and friends as carers while living with CKD, ESKD and haemodialysis serve to confirm the importance of a holistic team approach to the care of a patient’s vascular access. Such an approach includes surveillance, monitoring and involvement in decision making by all those involved and/or with an interest in the patient’s care, including the patient and their family and friends (Feddersen and Roger, 2012).


About the Author
Debi Cowan is a Clinical Registered Nurse (RN) Renal Services, at Central Coast Local Health District (CCLHD) NSW

Reprinted with permission of the Australian Nursing and Midwifery Federation 

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