What happens if I decide to stop my dialysis?

Transcription

1 What happens if I decide to stop my dialysis? Hope Building Renal Services All Rights Reserved Document for issue as handout.

2 Why do people choose to stop their dialysis? l Some people choose to stop their dialysis because their health is deteriorating l Some people choose to stop their dialysis because they feel their quality of life on dialysis has become unbearable l Personal feelings, individual circumstances and emotions all may influence a person s decision to stop their dialysis l The kidney doctors may discuss with you the option of stopping your dialysis treatment Things to consider if you are thinking of stopping your dialysis: 1 Who are you going to discuss your thoughts with about wanting to stop your dialysis. This may be a member of the kidney team (doctor, nurse or other member of staff), a family member, a friend or a religious / spiritual personnel. 2. Your reasons for wanting to stop your dialysis. 3. When you want to stop - you can choose a date. 4. Where you prefer to die - at home, in a hospice or in hospital. What happens if I decide to stop my dialysis? There may come a time when you feel you want to stop your dialysis treatment. People stop their dialysis for many reasons. People do have the right to stop their dialysis if they wish. However, it is important that you discuss this with your family or person you are close to and the kidney team. Your dialysis won t stop until you, your kidney doctors and nurses and your family have had time to discuss your reasons for wanting to stop. These discussions can take place in the kidney unit or the out patients clinic. You can continue with your dialysis whilst these discussions are taking place. Many people find it difficult to talk to loved ones about stopping dialysis, because they are often afraid of how they might react. A member of your kidney team can be present when you tell your loved ones about your wishes, if this is what you want. Deciding to stop dialysis may be a very difficult decision and some people may want emotional support if they are going through a difficult time. Our renal psychologist is available to talk to people who would like support or who would just like to talk about their situation to a person who is not a family member or part of the medical team. Sometimes we ask people to have a discussion with our renal psychologist before making their decision to stop dialysis. The reason we ask people to do this is that we want to make sure that they think their decision through before deciding to stop. continued page 3 1 2

3 The psychologist will offer you emotional support if you would like it and may ask you what you feel the advantages and the disadvantages are with continuing or stopping dialysis. The kidney doctors, kidney nurses, chaplain and social workers are also available to talk to you if you wish. What happens when dialysis treatment is stopped? Initially when your dialysis has stopped you may continue to feel no different and continue to eat and drink. Waste products and fluid will gradually build up in your body and symptoms may develop. These may include feeling sick, itching, shortness of breath, twitching of limbs and general tiredness. These symptoms will not develop all at once but may gradually appear. It is difficult to make any predictions about when you may develop symptoms and this depends upon a range of medical conditions. This will be discussed with you on an individual basis by the kidney doctors and nurses. Medication for each symptom will be given to you as it happens in an attempt to keep you as symptom free as possible. Discussing your wish to stop dialysis allows you and your family / friends time to talk about where you want to be cared for in your last days. This care may be provided at home, in a hospice or in hospital. Your wishes about where you want to die will be honoured if possible. Your GP, district nursing team and the community Macmillan team may be involved in providing care for you and your loved ones at home. Some people choose to die in a hospice, this can be made possible but only if a bed is available at the time. The kidney team will discuss with you plans for your care and make arrangements to involve any other care services that may be required. Whilst we try the best we can to follow your wishes, sometimes it is not possible. For example a bed may not be available in your local hospice at exactly the time that it is needed. If this is the case we will discuss this with you and your family and work with the community or hospital teams as appropriate to provide an alternative place to provide your care. 3 4

4 Is stopping dialysis considered suicide? No. Stopping dialysis is like any other choice people make when they decide their life has become unbearable because of the treatment they are having. What makes this decision difficult is that without the dialysis treatment you will die relatively quickly. You may wish to speak with your religious advisor if you are concerned that your faith or culture has a different view. We can arrange this for you, if you do not have someone to discuss this with. Can I change my mind and go back on dialysis? Yes. If you change your mind and decide to go back on dialysis you must inform your kidney doctor or nurse as soon as possible. Advance Care Planning: what is it? Whether you choose to stop dialysis or not you may wish to consider having a personal care plan of what you want to happen in the future with regards your preferences and priorities for your care. The doctors and nurses can help you complete an advance care plan. There are different types of document used, in the community your GP or district nurse may help you complete a Preferred Priorities for Care document or the kidney team may help you complete a My Wishes document. This gives you the opportunity to write down your thoughts and your wishes and will provide instruction to the medical team and your family and share with them what is important for you in your future care. This document is written by yourself with help from the nursing or medical team and is your document. The kidney team will ask you if they can keep a copy of your My Wishes or P.P.C. for your hospital records, the original copy is for you to keep. This means you can share this information with others who may be involved in your care, G.P. or district nurse. Your views may change over time and your P.P.C. / advanced care plan can be regularly reviewed with your kidney team and you can change which is written down. If you wish to discuss any of the information in this booklet, please contact: 5 6

5 G W. Design Services Salford Royal NHS Foundation Trust All Rights Reserved 2015 This document MUST NOT be photocopied Information Leaflet Control Policy: Unique Identifier: NOE32(15) Review Date: July 2017 For further information on this leaflet, it s references and sources used, please contact Copies of this information are available in other languages and formats upon request. If you need this interpreting please telephone In accordance with the Equality Act we will make reasonable adjustments to enable individuals with disabilities, to access this treatment / service. InterpretationandTrans@srft.nhs.uk Salford Royal operates a smoke-free policy. For advice on stopping smoking contact the Hospital Specialist Stop Smoking Service on Salford Royal NHS Foundation Trust Stott Lane, Salford, Manchester, M6 8HD Telephone If you would like to become a Foundation Trust Member please visit: for-members If you have any suggestions as to how this document could be improved in the future then please visit: for-patients