Renal - Supportive Care for your kidney disease

This leaflet is written for those patients who choose not to have dialysis treatment. We hope to provide a clear and honest account of the treatment available, how your kidney problem may progress in the future and what this will mean for you.

As a patient you may have been attending the hospital for ‘kidney problems’ for some time and have now been informed that your kidneys are not working to their full capacity and you may require further treatment. You may now be feeling frightened, and unsure about your future, what your kidneys failing means to you and what form of treatments are available.

Chronic Kidney Disease is a term given to describe the progressive deterioration in how your kidneys are functioning. As the kidneys deteriorate the waste products will build up in the body and can result in the symptoms of kidney failure.

These symptoms will be discussed later in this leaflet. There are alternative treatments for your kidney failure of which there are advantages and disadvantages, which your kidney nurse will discuss with you.

At this stage in your care the kidney team will have discussed the various options available with you. Having discussed these options with your family/ carers, your kidney consultant and nurse you may decide not to have dialysis treatment. This decision can be discussed further with your doctor or your nurse at any time. The kidney team will support your decision and provide you and your family with as much guidance and information you need for your future care.

The aim of this leaflet is to provide you with information about what to expect if you choose not to have dialysis therapy.

Following your decision not to have dialysis treatment what happens next?

Supportive care is a term used to describe the care and treatment received by those patients who choose not to have dialysis.

Supportive care means that you will continue to receive treatment, have regular outpatient’s appointments, and have input from the kidney team.

We hope that we will be able to optimise your care and for a while you may feel well and have no symptoms. This will change over time. Your kidney nurse will have explained to you that they are going to refer you to other members of their team so that future care can be planned, these may include:

Dietitian

For advice regarding foods that you may need to avoid or dietary supplements that can be taken if required.

Social Worker

For support for you and your family, and counselling if needed. Financial advice may also be sought as your circumstances change.

General Practitioner

Your G.P. will be available to provide you with medical support in the community and visit you at home if necessary.

District Nurse

Will be available if care is needed in your home, and for assistance with medication if required.

Palliative Care Nurse Specialist (sometimes known as Macmillan Nurses)

Palliative care nurses may be involved for advice on symptom management and support for both you the patient and your family.

This is not a complete list of services, which can be provided, or a full description of the roles that they do, merely an overview of the services available to ensure that your care and management is to a high standard.

The kidney team will also be available to provide support, care, and advice throughout the various stages of your treatment.

At some point in the future, symptoms of your kidney failure may become apparent, this may mean starting new or adjusting your medication and diet.

Symptoms that you may feel:

Loss of appetite, nausea and vomiting

This is experienced when waste products build up in your blood.

There are a variety of medications that can be used to control this symptom and ways that these can be administered to provide maximum relief.

Tiredness

This may be due to anaemia, you may already be on a form of treatment for this, if not this may be started as required.

Itchiness

This is caused by a build-up of phosphates in the blood and may be controlled with diet and medication. Creams may help e.g.
E45.

Swollen legs

This may be controlled with adjustments in medication.

Headaches

Checking that your blood pressure is controlled well may prevent this side effect.

There is no cure for kidney failure and as the kidneys deteriorate further symptoms may include:

• Lethargy/tiredness
• Drowsiness
• Increased or a decreased urine output
• Difficulties in sleeping, restlessness

It is important to remember that no matter what your symptoms are there is support and advice available.

As your kidneys deteriorate and your symptoms progress, you may now have more involvement with other members of the multidisciplinary team. The aim of this involvement is to provide the care that is needed to ensure that the quality of your life is the best it can be until the end of your life.

My Wishes Document

The “My Wishes Document” helps you plan and prepare for your future care needs.

Your nurse will discuss the document with you following your decision to choose supportive care for your condition. This allows others who may be involved in your care to understand the matters important to you when planning your care. It provides you with the opportunity to talk about preferences and priorities for care at the end of your life.

If I choose not to have dialysis will I die sooner?

There is evidence to show that some people with kidney failure live longer than patients who have chosen to have dialysis.  However, some people die sooner but have a better quality of life following a supportive pathway of care.

Do I have to die in hospital?

Some patients choose to die in hospital other patients choose to die at home or in a hospice.

This is a decision that can be planned with your family and the multidisciplinary team.

Can I change my mind?

This decision can be changed at any time. If you have questions, doubts or fears about your decision, please discuss these with your kidney nurse.

Do I still need to come to clinic?

Clinic appointments may be reduced. Some people feel that they still want to attend clinic to check their kidney function.

Will I get pain?

Most patients do not get pain from their kidneys. However, if you do experience discomfort or pain, then this would be reduced with pain relief.

Will dialysis improve my kidney failure?

Dialysis is a treatment to filter out the waste products from our body. There is no cure for chronic kidney disease.

Support groups and numbers that may be useful

Chronic Kidney Disease Team (Salford Royal) - 0161 206 1882

Renal Ward - Ward H3 (Salford Royal) - 0161 206 5866

Salford Royal Kidney Dialysis Unit - 0161 206 5228

Hope Kidney Patients Association (HKPA) - info.hopekpa@gmail.com

Members contact details via HKPA newsletter available in the Salford Royal Renal Outpatient Department.

UK National Kidney Federation (NKF) - Helpline - (0845) 601 02 09
www.kidney.org.uk/

NHS Direct - www.nhsdirect.nhs.uk/en/decisionaids

Advanced kidney disease - planning for end-of-life care For enquiries about the decision aids - 0345 604 7355