Issue 136 chronic renal disease

CLINICAL

Sandra Tyrrell Specialist Dietitian, NHS and Freelance Sandra has worked with the NHS for over 10 years. She has worked as a Specialist Renal Dietitian for the majority of this time, in particular with haemodialysis patients.

CHRONIC RENAL DISEASE: CHALLENGES FOR DIETITIANS AND PATIENTS The nutrition journey for renal patients can be extremely challenging and confusing and optimum nutrition is essential for the positive outcomes for the patient. This article will focus on the difficulties that renal patients try to overcome with regards to renal diet throughout their chronic illness.

Patients with chronic kidney disease (CKD) who attend haemodialysis are facing daily challenges, which are life changing and restrictive. These patients on average will have three haemodialysis treatments per week, which can take between three to four hours to complete.

Haemodialysis units are specialist centres which are placed around the UK; patients will travel from home to their closest centre, some requiring ambulance travel. These journeys can add significant time to their day and, therefore, a large part of a patient’s time is dedicated to this treatment, which is essential for their survival.

Nutrition is a very important part of the treatment for these patients.

However, these patients may face nutritional challenges even before starting haemodialysis.

CKD MANAGEMENT AND ASSESSMENT

CKD is a long-term condition which can ultimately mean that the kidneys can fail over a number of years or months.

The patient`s kidney damage can be measured using markers such as a glomerular filtration rate (GFR) which is then used to categorise the stages of kidney failure (see Figure 1 overleaf).

In the early stages, the patient may not feel any symptoms; however, as they progress to end stage renal failure, the symptoms may include oedema (ankle, feet and hands), weight loss, nausea,

tiredness, blood in the urine and loss of appetite. Patients will be monitored initially by their GP in the early stages of their disease and when they reach stage 4, they will then be referred to the specialist renal team in a CKD clinic. The renal team will monitor and manage the patient and symptoms, liaising with the patient to consider treatments at end stage of their renal failure. Treatment options may include dialysis, transplant, or conservative management.

As their kidneys start to fail, patients may be referred to the dietitian following assessment at their specialist CKD clinic. A referral will be triggered by deteriorating blood test result, for example, raised potassium and/or phosphate levels, therefore, they may be advised to restrict certain foods.

One of the functions of the kidneys is to eliminate waste products from the body, if the kidneys aren’t functioning as well as they should, waste products such as creatinine and urea can build up in the blood, these are another marker which the medical team will monitor.

As the toxins accumulate, the patient may feel nauseous and have a poor appetite. Patients may also experience anaemia, therefore feeling exhausted and generally losing their appetite.

During their assessment, the patient will be weighed regularly each time they attend clinic. However, oedema may mask weight loss. www.NHDmag.com July 2018 - Issue 136

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CLINICAL Figure 1: Stages of CKD

DIETARY MANAGEMENT

With modern technology at our fingertips 24/7, it’s common to find that patients may decide that self-help is useful by researching via the internet, or by talking to friends and family. The advice they receive may not be accurate, for example, advising patients to stop eating certain foods, which may not be necessary for the individual.

It can become a difficult time for patients not knowing what to eat and experiencing anxiety about eating foods that they used to enjoy. Also, family members and carers can become confused about how to support the patient’s dietary needs.

Often, patients will fear eating certain foods, reducing their confidence and enjoyment of eating. There are many patients who may have lived a life without dietary restrictions or concern about what they eat. Having CKD and being told that certain foods should be restricted, and/or 16

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some foods could even be life-threatening, can be a surprise or even a major shock for some patients.

Ideally, these patients should have access to the dietitian within a specialist CKD clinic as part of the multidisciplinary team approach but this is not always the case. Within my renal dietetic job role, I try to ensure that I am available to see patients on the days they are in the clinic.

It may mean negotiating a clinic room, or staying late, but I believe that it is a better service for the patient. However, if I am not available for these clinics, a phone call may be arranged, or another dietetic clinic appointment fixed for the patient.

Both options aren’t as ideal as seeing the patient face to face on the day of their renal review, but they at least provide alternative forms of communication.

As patients progress to stage 5 of their illness, the renal team will monitor the patients closely

Table 1: Challenges faced by CKD patients -

Confusing messages from fellow patients who share the waiting room or the taxi journey.

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Long journey rides to the hospital, missing breakfast and sometimes other meals.

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Generally feeling too unwell or tired during treatment to eat.

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Unable to eat due to other activities happening on the unit (i.e. other patients unwell).

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Worries or stress about home life, anxiety or depression.

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Financial worries.

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Dislikes of food offered or food choices.

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Advice by well-meaning care staff about restrictions, but without the knowledge of a patient’s specific requirements.

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Changes to dialysis slots due to patient treatments or procedures.

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Boredom during dialysis, therefore choosing to sleep through this period and missing meals.

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Limitations using cutlery due to fistula or dialysis machine alarming.

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Catering and staff cut backs, therefore restricting hot meals or sandwiches, or restrictions on staff serving the food or snacks.

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Confusion about how much protein to eat, for example, from transitioning from chronic renal failure to dialysis where there is an increased requirement for protein.

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Confusion about target weights; the patients often misunderstand the target weight from a body weight point of view rather than a fluid gain. Often it’s difficult for staff to explain this to the patients.

for symptoms and blood results. Decisions will be made with the patient about treatment options and preparations will be made to accommodate treatments, for example, forming a fistula in anticipation of dialysis. If patients make a decision to undergo haemodialysis, initially they should be referred to a dietitian for an introduction to discuss how their diet may differ whilst undergoing dialysis treatment. If they are not seen by a dietitian, the patient can receive incomplete or limited advice and can become confused.

This is a challenging time for patients from a physical and mental health point of view.

They may be very poorly at this stage and will be receiving a lot of information from various healthcare professionals about their care and treatment. In addition to this, they may have been through various invasive procedures, which can be traumatic, such as the fitting of a fistula or a temporary neck line. They may also be coming to terms with the new change of attending the haemodialysis unit for what could be the rest of their lives.

THE DIETITIAN’S ROLE

To be introduced to the dietitian at this stage can feel like an overwhelming experience for

the patient, however, we can offer a wealth of support and reassurance. I prefer to offer a gentle introduction to the patient and let them know that as dietitians, we are able to offer regular advice to support their nutritional needs and queries throughout their journey. I prefer not to discuss restrictions at this point unless it’s essential and based on the individual's blood results.

I reassure the patient that dietitians can offer solutions, advice and ideas as opposed to restrictions. I aim to build a positive relationship that allows the patient to look forward to seeing me and to allow them to problem solve with my guidance and input. This empowers the patient and allows them to be motivated in their choices.

Over the years of working at the haemodialysis unit, I have discussed with the patient, the challenges that they may experience, some of these challenges are listed in Table 1.

As dietitians, we have the expertise to guide patients through these difficult and confusing times with regards to their dietary management.

Often, we may find that we are correcting advice that has been given by well-meaning individuals, or from self-research. It is important that at each stage of their journey they have access to a dietitian www.NHDmag.com July 2018 - Issue 136

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CLINICAL Table 2: Optimising nutrition in the treatment plan of a CKD patient •

Snack packs to take home - we know that patients often don’t feel like eating whilst undergoing their treatment, examples of foods to go in the snack pack would include sandwiches, rice/custard pots and cakes.

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Patients could be offered assistance when eating during the treatment; often the dialysis machine will alarm when they move their arms, or they may have sore or swollen arms if there are fistula problems.

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Appetising hot cooked meals and renal friendly food choices. However, the current financial climate within the NHS has led to cut backs and we are ever more frequently seeing that food is being restricted to these patients. This can be the food itself, or the reduction of staff who prepare and serve the food.

for tailored individual advice. This is not always • More training for nurses and healthcare possible due to staff shortages and clinic room assistants. space. However, it is important that the dietitian's • Offering snacks/meals/take-home bags for time is valued as equally important as other patients at risk. specialist treatment such as anaemia management. • Help when eating if required.

The risk of malnutrition is well recognised within • Renal specific cookery courses for patients the hospital that I work. We have put strategies in and carers. place to include a snack menu, protected mealtimes and various protocols to It would be a positive ensure that this is addressed. I change if food provision In 2010, the National recognise that haemodialysis was one of the main focuses Kidney Federation patients who spend a large during the dialysis treatment. portion of three days of their This would strengthen the calculated that the week in a specialist unit having message of how important approximate cost for a dialysis treatment should also nutrition is for the patient, have this time maximised for whilst taking some of the patient to have hospital optimal nutrition as part of their pressure off the patients of dialysis in the UK is treatment plan (see Table 2). having to go home, source the food and then cook it. £35,000 per year.

RECOMMENDATIONS FOR Often if a dialysis patient BEST OUTCOMES is admitted into hospital, In 2010, the National Kidney Federation depending on their reason for admission, I calculated that the approximate cost for a regularly observe that they flourish and are patient to have hospital dialysis in the UK is less stressed, partly because they are provided £35,000 per year. It is certainly worth investing with meals during their day which are balanced, more money to ensure that their nutritional prepared and cooked for them. intake and status is optimised. This can I have focused this article mainly on promote the best outcomes and quality of life patients who are at risk of suffering from and can ensure that the patient is nutritionally malnutrition, however, there are patients stable if the option of a transplant becomes throughout the UK who are able to adapt available. easily to a renal diet and live a healthy lifestyle.

To maximise best outcomes for the These patients may also benefit from advice haemodialysis patients, I would make the with adaptions to diet to ensure that they following recommendations and encourage also have optimal nutrition. These patients nutrition to be highlighted as a focus for the may benefit from renal cookery courses and patient as well as a treatment for their ongoing exercise whilst undergoing dialysis. Some health: dialysis units do have exercise bikes fitted to • More dietetic time. the patient’s beds so that they can cycle during • Empowering patients for food choices and their treatment. More dietetic time for all education. patients would be welcomed.

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