Conservative care for your chronic kidney disease If you are thinking about not having dialysis Information for patients Sheffield Kidney Institute (Renal Unit)
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It is important for people with advanced Chronic Kidney Disease (CKD) to make informed choices about their treatment options. This leaflet is to help you with those choices. What if I think dialysis is not the right choice for me? You have the right to decide not to start dialysis if you feel that the burden of the treatment would outweigh the benefits and so reduce your quality of life. Deciding not to have dialysis does not mean you will have no treatment for your CKD. We call this (no dialysis) option conservative care. Why might I choose not to have dialysis? For many people with advanced CKD, dialysis treatment (or a kidney transplant) means that they can still have a fulfilling life. There isn't a cure for CKD and dialysis treatment doesn t always: improve other health problems improve quality of life extend life Dialysis treatment can be demanding on your time and energy, and most people need to make changes to their life-style (such as diet and fluid intake). Some types of dialysis also involve spending a lot of time at hospital. page 3 of 8
What is conservative care? The aim of treatment with conservative care is your wellbeing and quality of life. Conservative care (also called supportive care) aims to: treat and reduce any physical symptoms of CKD such as: tiredness feeling sick itching swelling and breathlessness protect and maintain any remaining kidney function (where possible) by: controlling your blood pressure changes to your diet changes to your medication provide emotional, social and spiritual support plan for the future Your care will be shared between the renal unit, your GP and community services you may need. You will be seen in clinic by a doctor and/or a specialist nurse, who will see you as little or as often as needed. The nurse specialist for supportive care will support you and your family at home and liaise with other services you may need. page 4 of 8
If I don t dialyse will I die sooner? How long someone lives is different for each person and will depend on: existing medical conditions amount of kidney function left Not having dialysis may shorten your life but for some people dialysis could worsen their quality of life. If your doctor thinks you are not well enough to start dialysis and it will shorten your life, they will explain this to you. The renal team will be supportive whatever you decide. Who can I talk with to help me make a decision? Many people find it hard to talk about deciding not to have dialysis. They are often concerned that they will upset their relatives or are worried how they will react. As with anything that is difficult it is always best to talk openly and honestly. Your clinic doctors and the pre-treatment nurses will be happy to discuss the options with you, and those close to you if you wish. Often people find it helpful to have a friend or family member present for these discussions. Some people also find it helpful to speak with their family doctor or their religious advisor, for example. Can I change my mind? You can change your mind and your kidney doctor and the renal team will support you. You need to be aware however, that starting dialysis in an unplanned way can be difficult and if you start treatment very late it can be harder on your body. page 5 of 8
Further planning Some people take the opportunity to think further about their preferences for what they would want for the future if or when their health worsens. This is called Advanced Care Planning. If you would like to think more about your preferences please let us know. If you have already written an advanced directive (or 'living will') please: Let staff at the renal unit know about this Talk with your family, friends and carers about this, so that they know your wishes as well. Contact If you have any more questions about conservative care, please contact: Renal pre-treatment specialist nurses 0114 226 9390 Monday to Friday: 8.30 am - 4.30 pm (There is a voicemail for messages) page 6 of 8
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Produced with support from Sheffield Hospitals Charity Working together we can help local patients feel even better To donate visit www.sheffieldhospitalscharity.org.uk Registered Charity No 1169762 Alternative formats can be available on request. Please email: alternativeformats@sth.nhs.uk Sheffield Teaching Hospitals NHS Foundation Trust 2017 Re-use of all or any part of this document is governed by copyright and the Re-use of Public Sector Information Regulations 2005 SI 2005 No.1515. Information on re-use can be obtained from the Information Governance Department, Sheffield Teaching Hospitals. Email infogov@sth.nhs.uk PD9399-PIL3984 v1 Issue Date: July 2017. Review Date: July 2019