Stopping active lymphoma treatment and the end of life

This information is about what someone with lymphoma in the final stages of life might experience. We have separate information about how lymphoma can lead to the end of life, and about physical changes towards the end of life.

We know that reading this might trigger powerful emotions. Our Information and Support Team are here to support you.

On this page

Will I be offered further lymphoma treatment?  

What do doctors base their advice about further treatment on?  

What is a lasting power of attorney (LPA)?  

Where can I get more information about end-of-life decisions?

Will I be offered further lymphoma treatment?

You and your medical team can talk about whether further treatment is suitable for you. This includes the possible risks and whether further treatment is likely to work.

In general, treatment is less likely to work each time lymphoma comes back (relapses). This is because the lymphoma cells can become resistant to treatment. This means that shrinking or getting rid of your lymphoma (remission) might work only for a short time, or not at all. 

If you (the person with lymphoma) are too unwell to make decisions, someone else can make decisions for you. Often, this is in the form of a lasting power of attorney (LPA). If you don’t have an LPA, treatment decisions will be made in your best interests and with an open discussion with loved ones.

It’s a good idea to nominate any Lasting Power of Attorneys (LPAs) when you are well enough and able to let people know what your wishes are, so that they can be followed through. 

Charlotte Bloodworth, Lead Clinical Nurse Specialist in Haematology

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What do health professionals base their advice about further treatment on?

Your medical team think about lymphoma-specific factors and personal factors in advising you about whether or not to have further treatment.

Either way, you will be offered pain relief and help to control symptoms. This is known as ‘palliative care’ and it is different from active treatment given to treat your lymphoma.

Lymphoma-specific factors

Your medical team consider your specific situation, including:

• the type and stage of your lymphoma
• how fast your lymphoma is growing
• which parts of your body are affected
• how your body reacted to treatment in the past
• your symptoms
• results of genetic tests – these can be useful with some types of lymphoma and can help guide your doctor on the suitability of treatments for you.

Personal factors

Your medical team think about personal factors such as:

• your age and general health, including any other medical conditions you have
• any medication you are taking
• the support you have available to you at home from the people around you, such as family members, friends and neighbours
• any other things that are important to you.

Your general health

Some treatments could be life-threatening if you are physically weak or have other health problems. Doctors will not give you such treatments if they are likely to make you more unwell.

The things that are important to you

If there are other things you’d like your medical team to think about when planning your care, talk to them about these. For example, many people choose a quality of life over a longer life. This means different things to different people, so it’s important to think about your own priorities.

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What is a lasting power of attorney (LPA)?

A lasting power of attorney (LPA) is a legal document that sets out one or more people (known as ‘attorneys’) that you have chosen to help you make decisions. If you become too unwell to make decisions for yourself, your LPA makes them for you.

You (the ‘donor’) can choose anyone to be an attorney – they do not need to have legal experience. Usually, an attorney is a family member or close friend. 

There are two types of LPA: 

• health and welfare – that help with decisions about your medical care and day-to-day things, such as washing and eating
• property and financial – that help with decisions about things like money and bills.

The GOV.UK website has more information about:

• making, registering or ending a lasting power of attorney
• making decisions on behalf of someone.

Advance decisions, including to refuse treatments

Some people choose to write an advance decision (also known as a living will). This is where you list treatments you would or wouldn’t want to have in the future. An advance decision can be useful if you become unable to communicate your preferences at the time that you need to. 

Advance statements

An advance statement can include anything that’s important to you in your care, for example, how you like to dress or what music you enjoy listening to. 

In some parts of the UK, there is a message in a bottle scheme. This is where you keep important information about yourself and your lymphoma on a form. You keep this in a small plastic bottle, usually in your fridge – members of the emergency services know to check there for it. 

You can find information about advance care planning on Marie Curie’s website. Hospice UK also has information about planning ahead.

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Where can I get more information about end-of-life decisions?

You can read more on the UK Government’s website about:

• choice in end of life care, including choosing where you have end of life care
• making decisions on behalf of someone.

We also have a list of useful organisations that has a section relevant to end of life.

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