Choosing not to start dialysis
If you have been told that your kidneys are failing, your doctors will want to inform you of all the treatment options available to you – including dialysis and possibly kidney transplantation.
Dialysis uses equipment to clean your blood and do some of the work (around 10%) that healthy kidneys do. Dialysis can help with symptoms caused by kidney failure, but if you have other medical conditions, eg stroke, Parkinson’s disease, peripheral vascular disease, frailty, or dementia, dialysis won’t help with the symptoms that they cause, and could even make them worse. Dialysis doesn’t stop your kidney function deteriorating further; in fact, it can sometimes make it get worse more quickly.
Dialysis can be a burdensome treatment, and may reduce quality of life, particularly in patients with other medical conditions. Dialysis treatment doesn’t always prolong life in patients with other medical conditions; even if it does, many of the extra days of life gained may be spent in hospital.
After taking these and other factors into consideration, some people choose not to start dialysis but instead opt for active supportive care (sometimes known as conservative, maximum conservative or responsive care).
If you are considering active supportive care your doctors will respect your views but you may also want to talk to your family about the decisions you and your medical team are considering.
What is active supportive care?
This involves working closely with you to treat the symptoms of end-stage kidney disease (ESKD), and continuing active treatment to ensure that your kidneys can work for as long as possible to give the best possible quality of life.
How can active supportive care help me?
Active supportive care focuses on keeping you as well as possible by:
- protecting and maintaining your remaining kidney function so you remain as well as possible for as long as possible
- anticipating and preventing any situation where your kidneys are put at more risk, eg when the weather is really hot and you might find it harder to maintain your fluid balance
- treating symptoms and complications of kidney disease
- looking after your mental and spiritual wellbeing.
It also allows you to think about the future by:
- making plans with your doctor and your family about future care for loved ones if you care for somebody else
- supporting you and your loved ones when your health eventually deteriorates, through an advance care plan that is clear about your wishes and preferences. The ultimate aim is for you to die in a place of your choice with all the support of experts to minimise any distress or discomfort to you or you family.
Active supportive treatments include:
- Controlling blood pressure and protein loss with tablets
- Treating common complications such as anaemia (a low blood count) with tablets and/or injections
- Ensuring you are eating a diet that takes your kidney disease into account and is tailor-made to your needs and preferences
- Managing your fluid intake
- Prescribing treatments for common symptoms of end-stage kidney disease, such as anti-sickness medicines, medicines which help to alleviate itching and painkillers, should you need them.
- Helping to prevent further kidney damage by ensuring that you avoid some over-the-counter medications that can be harmful to your kidneys. These include non-steroidal anti-inflammatory drugs (NSAIDs) such as Ibuprofen, Naproxen, and Diclofenac, which are used for arthritis and general aches and pains.
- Meeting with a palliative or supportive care team to help you make advanced care plans to ensure you get the care you want when your health deteriorates.
Who can I talk to if I want to consider active supportive care?
It is important that you talk to your kidney doctor or specialist nurse so you can get a clear understanding of what it would mean for you if you decide not to start dialysis. It can really help to get your family involved in these conversations too. Your doctor may also suggest involving other professionals such as a social worker or a counsellor to help support you and help you decide what is right for you.
Can anyone help me talk to my friends and family?
Sometimes it can be very difficult to discuss health matters with loved ones, especially if your health is deteriorating. You may be concerned that you might upset them, or you may be worried about how they will react to your wishes about ongoing care and treatments. As with anything that is difficult, it is always best to try to talk openly and honestly so don’t hesitate to ask your kidney doctor or nurse for help. They will be able to give you advice and suggest other forms of support.
What if I can’t decide about dialysis?
It can be difficult to decide whether the potential gains of dialysis will outweigh the additional burdens. Although your kidney team ideally would like to plan the next step of your treatment in advance you may not be able to commit to either a dialysis or a supportive care plan. In this case it is OK to wait and see how you feel and make a decision at the last minute. Dialysis can then be started in an unplanned way. Sometimes people find dialysis too difficult and wish to stop after a short or a long time. If you find this is the case, your team will respect your wish to stop.
Take a look at our Dialysis Decision Aid booklet. It has been specially developed to give clear information about the types of treatments generally available to people with kidney failure (including active supportive care). The booklet has space for your own notes and some suggested prompts to help you raise any issues that may be concerning you.
Is deciding not to have dialysis suicide?
You have the right to refuse any medical treatment, including dialysis, if you feel it will not benefit you. All major religions accept this. You may wish to speak with your religious advisor if you have any concerns about this.
How long can I live without dialysis, but with active supportive care?
It’s difficult to be accurate about life expectancy, as this will depend on your general level of health, how much kidney function you have left, your diet, the speed of your kidney disease progression, and whether you have any other serious medical conditions. If you have no urine output time left is likely to be shorter. It is a good idea to discuss this question with your kidney doctor.
How will my care be organised?
You may receive care in hospital, at home or in your local community (for example, day care services at your local hospice). Your medical care will normally be managed by your kidney doctors together with your GP, whose role – like that of the district nurse – may increase if your kidney failure gets worse and you require a greater level of end of life care.
Don’t hesitate to speak to your kidney doctor or nurse if you have any queries or concerns about your future care. You can also find information about other forms of support, together with advice on managing your medications and taking care of your mental health in our How can I help myself? section.
Reviewed April 2019
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