Choosing not to Dialyse

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If you choose not to start dialysis treatment Introduction In this leaflet, we aim to give an honest and accurate account of what might happen if you do not have dialysis. We will describe the symptoms of advanced kidney disease and how they can be managed without dialysis. We also aim to answer some of the questions that you might find difficult to ask. Chronic kidney disease means that both kidneys have gradually been damaged. The damage cannot be repaired. The chemical waste products that are normally removed by the kidneys gradually build up in the blood, becoming toxic to the body. This is what causes the symptoms of kidney failure. When the kidneys are working at a very low level – usually less than 10% of normal - this is known as end stage kidney failure. Dialysis is available for all those who wish to have it and kidney transplant may be an option depending on the presence of coexisting health problems. For people with advanced kidney failure, dialysis treatment can be life-saving, improving quality of life and life expectancy. However, the treatment is demanding and time-consuming and it is usually necessary to make lasting changes to lifestyle, which can prove a burden. Dialysis treatment only partly replaces some functions of the kidney. It may not benefit other health problems. The treatment may make some of them worse and may not improve your quality of life. In such situations it is important for all concerned to have a clear view of the likely advantages and disadvantages of undertaking dialysis treatment. This should take account of your particular problems, circumstances and concerns. Reaching this point usually involves a good deal of discussion over a period of time between you, your relatives and carers and the renal team at Southmead. 2

Choosing not to dialyse

Ultimately, if dialysis is not started, end stage kidney disease will eventually lead to death. If you have other medical conditions in addition to your kidney failure, then research has shown that starting dialysis may not in fact extend your life expectancy.

Are there alternatives to dialysis treatment? Medical treatment Just because you choose not to have dialysis, it does not mean that you cannot have active treatment for your kidney problem. Treatment aims to protect and maintain remaining kidney function and to prevent or treat symptoms of kidney failure.

Measures that can help to preserve your remaining kidney function A small amount of kidney function can go a long way to keeping you feeling well and free of major symptoms. The natural tendency is for remaining kidney function to slowly get worse but the rate at which this occurs can be reduced by a number of means. The most important of these is to ensure good control of blood pressure. Already damaged kidneys can be more prone to further damage. Some medication can cause major problems. These include remedies that can be ‘bought over the counter’ such as non-steroidal anti-inflammatory agents (for example Brufen or Nurofen), which are used for treating arthritis and general aches and pains. You should check with your doctor before taking any new medicines. Avoiding dehydration is also important especially during episodes of illness such as diarrhoea and vomiting, which may be going round the family. Though previously you may have easily shaken off this sort of problem without involving your doctor, you should now be more prepared to ask for a doctor if the problem does not clear up quickly.

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Treatment of anaemia Anaemia is very common in patients with kidney failure, tending to become more severe as the kidney function gets worse. Normal kidneys produce a hormone called erythropoietin (EPO), which stimulates the formation of red blood cells by the bone marrow. Damaged kidneys produce less EPO causing anaemia. Shortage of iron may add to the problem. Anaemia accounts for many of the symptoms of kidney failure; particularly tiredness and weakness. EPO is a very effective treatment for anaemia in kidney failure and generally has a beneficial effect on these and other symptoms. It is given as an injection under the skin.

Is there a need for a special diet? Eating a healthy balanced diet can help you stay well when you kidneys are not working properly. Your diet should consist of regular meals, moderate amounts of protein (Meat, fish and dairy foods) and include five portions of fruit and vegetables a day. Avoid adding salt to your food can help with high blood pressure and help the body retain less fluid. Salt substitutes should be avoided as they can be harmful. As kidney failure progresses your appetite may decline and you may find you eat less. The dietitian can advise on managing poor appetite and weight loss. Sometimes potassium (a mineral found in the body) in your blood can be too high, and it may be necessary to restrict certain foods that contain a lot of potassium. The dietitian will inform you if you need a potassium restriction or if any other changes need be made.

Is there a need to restrict my fluid? Salt restriction can be of great benefit. Normally there is no need to restrict the intake of fluid since diuretics (water tablets) can be used with the doses being increased as required to maintain a reasonable urine output. Only if water tablets become less effective will some restriction of intake be necessary to avoid too much fluid retention. 4

Choosing not to dialyse

Control of symptoms As kidney failure progresses you may develop symptoms that can be helped. It is important to tell your doctor about any new symptoms so that suggestions can be made to help relieve them. This might include prescribing medication such as antisickness or anti-itch medication. Kidney failure itself does not usually cause pain but if you do have pain from other problems, medication may be prescribed to help this.

Choosing not to dialyse: making the decision Can I choose not to have dialysis treatment? Yes. You have the right to decide not to start treatment if you feel that the burden of dialysis would outweigh the benefits to you and lessen your quality of life. It is important to discuss the issue with those close to you and with members of the renal team looking after you.

Who can I talk to if I decide not to start dialysis treatment? It is important for you and your family to talk these matters through with members of the renal team. It is best if this is a decision that has been made together. Initially, you can discuss with your consultant who will then refer you to the patient support team. They will see you when you attend clinic and may arrange to visit you at home.

Will the doctors be supportive if I choose not to have dialysis treatment? Yes. All of the doctors that you see in clinic will be supportive and willing to discuss this issue with you. Their aim is to help you decide what is right for you.

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What if I cannot decide? Can I have a trial of dialysis? A trial period of dialysis means that the doctor would suggest that dialysis is given for a period of time, usually a few weeks. This will necessitate some preparation, which may mean time in hospital. During this time, you and your family and the renal team will see if you are benefiting medically and psychologically. Based on these assessments, the doctor and other members of the team will be able to talk with you and help you to decide whether or not it is advisable for dialysis to continue. It will always be your choice to stop.

It is very difficult to know how to talk to my family and friends. Can you help? Yes. Many people find it difficult to talk about such matters to those who are close to them. They are often concerned that they will upset their relatives or are worried how they will react. With anything that is difficult, it is always best to talk openly and honestly.

Organising your care Your medical care will continue to be managed by either the hospital renal team or your GP and district nurse. We will work closely together to make sure you get the best care and support. Our aim is to help you remain active and independent for as long as possible.

How long will I live if I do not start dialysis? This varies for each individual and depends on many factors. If you have other medical problems, then it is quite likely that the outcome will not be changed much by the decision not to have dialysis. The other main consideration is just how much remaining kidney function an individual has left when the decision not to dialyse is made. If there is a reasonable amount, then with the right attention this might last for a number of years. On the other hand, if an individual does not have any kidney function at all when the decision not to dialyse is made, then survival is likely to be no more than a few weeks. 6

Choosing not to dialyse

Will I have a choice of where I die? You will have the opportunity to discuss your preferences for care at the end of your life. This will include the possibility of being cared for and dying at home. If you indicate your preferences, then those caring for you will know your wishes and endeavour to honour them wherever possible. We also understand that people change their minds about where they want to be and that is quite all right. The important thing is that you discuss this with your family and professional carers so that they know. Your district nurse will be closely involved in your care along with your GP and, if needed, any other palliative care or hospice services, local nursing home or cottage hospital.

What happens at the end? As you get towards the end of your life, the symptoms that you already have may gradually get worse. In particular you may find you spend more time in bed and have less energy. Those looking after you will continue to address any symptoms you have and try to relieve them. Some people become more drowsy and their thoughts less clear as they become more sleepy.

Is there anything else that I need to know or should do? Many of us are reluctant to think about arrangements that need to be made in the event of our death. However, you may like to consider the following:Making a will Making a list of names, addresses and telephone numbers of family, friends and business associates who you would like to be contacted and told of your death. Making a list of other important contacts including the location of your bank, other financial accounts, insurance policies, pension plans and other legal papers. Writing a statement about your wishes for the funeral service, burial or cremation. Choosing not to dialyse

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Can I stop Dialysis? End of life decisions If you are thinking about stopping dialysis but are not sure how to discuss this very difficult subject with your family or the renal team, this information may be a guide. You may have reached a point where you find that dialysis is no longer improving your quality of life and it is becoming an increasing struggle to continue with and attend for dialysis. You may find that you are experiencing difficult symptoms. This may be because there are a number of things wrong with you. This may cause you to think about stopping dialysis. It is perfectly normal to have these thoughts. Please feel that you can raise this topic with the members of the renal team looking after you. You may want to discuss it, for example, when you attend for your clinic appointment. Or you may wish to discuss it with your named nurse or anyone in the team in whom you feel you can confide. They can offer you the appropriate support whilst you consider your decision. Stopping dialysis is not suicide nor is it euthanasia or assisted dying. It is withdrawing from renal replacement treatment. For patients who stop dialysis, death normally occurs over the course of a few days or weeks. It is generally painless; most patients become weaker and sleepy, finally lapsing into unconsciousness until they pass away peacefully. If you do develop any symptoms medical and nursing staff will do everything possible to relieve them. If you do decide to stop treatment, the renal team will continue to support you and work with you, your family and local GP team endeavouring to help you feel in control and carrying out your wishes for the end of your life.

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Choosing not to dialyse

References Levy, J.B., Chambers, E.J. and Brown, E.A. (2004) Supportive Care for the Renal Patient. Nephrology Dialysis Transplantation, 19 (6), 1357-1360. Smith, C, DaSilva-Gare, M and Chandra, S (2003) Choosing not to dialyse: evaluation of planned non-dialytic management in a cohort of patients with end-stage renal failure. Nephron Clinical Practice, 95, 40-46. Kidney Failure: What if I do not start dialysis treatment? The National Kidney Research Fund. Choosing not to have dialysis – Information for Patients. Belfast City Hospital Trust. NHS Constitution. Information on your rights and responsibilities. Available at www.nhs.uk/aboutnhs/constitution

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www.nbt.nhs.uk

If you or the individual you are caring for need support reading this leaflet please ask a member of staff for advice. © North Bristol NHS Trust. This edition published May 2014. Review due May 2016. NBT0020987