Choosing to refuse treatment

Treatments like resuscitation, artificial ventilation, dialysis or artificial feeding are known as “life-prolonging” or “life-sustaining”. You might decide you do not wish to be resuscitated or receive life-prolonging treatment if your quality of life will suffer. For example:

• If your illness cannot be cured and you become very unwell after receiving all possible treatment
• If you do not want to be kept alive by being fed through a feeding tube
• If you are only expected to live for a few days and do not want to be given antibiotics for an infection.

You can make the decision to refuse life-prolonging treatments in advance, and let your doctor and next of kin know. This is called an advance decision in England and Wales, or an advance directive in Scotland. There is more information about this on our page about making decisions about treatment.

It’s a good idea to talk to a doctor or nurse about the kind of treatment you might be offered, and what might happen if you choose not to receive it, before you make a decision. You might also want to talk to your carers, partner and/or relatives.

If you have not made an advance decision and treatments are not helping, the doctors will discuss this with you if you’re able to understand and respond.

In these cases the aim of treatment becomes to relieve pain and other symptoms, and making sure you are as comfortable as possible. This is called “basic care” and must always be provided.

It can be very upsetting to talk to someone important to you about the possibility of stopping or withholding life-prolonging treatment. However if they have made the decision to refuse treatment it is important to accept their wishes.

In most cases giving medical treatment according to accepted best practice – for example, using drugs to relieve pain and other symptoms – does not hasten death.

In the case of an emergency admission to hospital, for example after a major stroke or heart attack, you may feel it is necessary to tell medical staff about the wishes of your relative.

If they have not made an advance decision or advance directive, and it becomes clear to the medical team that treatments are not helping, if your relative is unable to understand or respond they will speak to you.

If an agreement is reached that continuing with treatment is not in the person’s best interests, it can be withdrawn, and the medical team will make sure your loved one is as comfortable as possible.

It is difficult having these conversations on behalf of someone who is unable to make their wishes known for themselves. Take your time to talk through any concerns you may have with medical staff, as well as with other relatives.

Assisted dying is controversial and frequently the subject of political and media debate. It is illegal in all nations of the UK.

There are differing views on assisted dying both for and against. As a result, Hospice UK takes a position of ‘no collective view’ on the issue to accommodate the views that exist.

But as advocates for high quality end of life care, we believe that anyone who is facing the end of their life or has a loved one in this situation has a right to the full facts and a clear understanding of all the available information.

And we passionately believe in the importance of open and honest conversations about end of life planning, and advocate for this through our Dying Matters campaign.

Choices relating to end of life care, death and dying are deeply personal and individual. What is right for one person may go completely against the beliefs or desires of someone else.

But whatever someone’s wishes, the most important thing is that they are heard and understood, whether those wishes can or can’t always be fulfilled. We have a range of Dying Matters tools and resources to help facilitate these conversations.

If you or a loved one are facing a long-term illness and are having conversations about assisted dying, the information available online can be overwhelming, with campaigning organisations fiercely committed to both sides of the debate. Information is not always presented in an impartial or balanced way.

Below is a short summary of facts about assisted dying in the UK:

• We use the term assisted dying to describe a situation in which a doctor prescribes life-ending drugs for a terminally ill, mentally competent adult at their request and after that has met strict legal safeguards.
• Assisted dying is illegal across all four nations of the UK. There are some moves in the different parliaments to try to change this, but all such moves will be controversial.
• It is legal for someone to travel abroad for an assisted death, but it is illegal for anyone to assist organising or travelling.
• The law prevents anyone from assisting in any way, and this extends to offering information or advice about what is possible.
• People have the right to discharge themselves from medical care and have a right to refuse treatment

Whilst distressing to talk about it is worth remembering that by not shutting down conversations about assisted dying, it can create a safe space for people and their loved ones to talk openly about their wishes and fears about the end of their life. This is part of person-centred end of life care.