Frequently asked questions about lymphoma and the end of life
We address some of the questions people often ask about lymphoma and the end of life. We say ‘you’ throughout, to refer to the person with lymphoma – however, we realise that you might be reading this information if someone close to you has lymphoma.
We have separate information about stopping active lymphoma treatment, how lymphoma can lead to the end of life, physical changes towards the end of life and grief and bereavement.
If you would like to talk to someone, our Information and Support Team can offer support.
On this page
What physical changes happen at the end of life?
How will I feel emotionally towards the end of my life?
What can I expect from care at the end of life?
Whose decision is it for me to stop active treatment?
When might further treatment not be suitable?
How can I tell my friends and family I’m no longer receiving active treatment?
Where can I find out about becoming an organ donor?
How much time do I have left to live?
Where can I find information about choosing where I have end of life care?
How can I talk to a child about death?
Where can I get more information about end of life decisions and care at the end of life?
Someone I love has died – is what I’m experiencing normal?
What physical changes happen at the end of life?
The changes that happen at the end of life depend on which parts of the body the lymphoma affects and how advanced it is. However, nobody can predict exactly what you will experience. You can read about possible physical changes towards the end of life in our separate information.
How will I feel emotionally towards the end of my life?
There is no ‘normal’ way to feel at the end of life. How you feel can depend on lots of things. For example:
- whether you are in pain
- your personality and general outlook on life
- any religious or spiritual beliefs you might have
- how satisfied you feel with the life you have lived.
Having your physical, social and emotional needs addressed towards the end of your life through palliative care or in other ways can also have a significant impact on how you feel.
You can read more about feelings towards end of life in our separate information about grief and bereavement.
What can I expect from care at the end of life?
From the point of diagnosis onwards, you should be offered symptom and pain relief. This is known as palliative care and it is separate to active treatment given to treat your lymphoma. Palliative care should continue to be offered up until the end of life.
The Government’s commitment to end of life care says that people nearing the end of their life should be able to:
- have honest discussions with care professionals about their needs and preferences
- make informed choices about their care
- develop and document a personalised care plan
- discuss their personalised care plans with care professionals
- involve their family, carers and those important to them in all aspects of their care as much as they want to
- know who to contact for help and advice at any time.
You can read more about what to expect from end of life care on the NHS website.
Whose decision is it for me to stop active treatment?
Your medical team can advise you about whether further treatment is likely to work, its risks and benefits. Together, you can discuss whether having more treatment is suitable for you.
Some people choose a higher quality of life over a longer life. This is a highly personal choice. It means different things to different people, so it’s important to give thought to your own priorities.
Some people choose to have a lasting power of attorney (LPA). This is a legal document that lets you appoint one or more people who can make decisions for you if you become too unwell to make them for yourself.
When might further treatment not be suitable?
Further treatment often means using stronger treatments. The side effects of stronger treatments can be severe and can make you very unwell. Some treatments could be life-threatening if you are physically weak or have other health problems. Doctors are not allowed to give you such treatments if they are likely to make you more unwell.
How can I tell my friends and family I’m no longer receiving active treatment?
It can be emotionally challenging to tell the people you care about that you are not continuing with active lymphoma treatment. You could explain to them how you reached your decision.
You might find it helpful to talk through what you’ll say with your clinical nurse specialist. You might want a member of your medical team to be there to help explain the situation to those close to you. These conversations can be very emotional. However, they can give you an opportunity to say what you'd like to, and for your loved ones to do the same.
You might be interested in Marie Curie’s information about talking to people about a terminal illness and possible approaches to these conversations. Death Cafe and Hospice UK’s Dying matters also offer supportive communities to discuss death.
Where can I find out about becoming an organ donor?
Organ donation means giving an organ that doctors can use to help transform or save the life of someone else. You can find out about organ donation and how it works on the NHS Blood and Transplant website. This includes a short video about how organ donation works. You can also register your choice on the NHS Organ Donor Register, a secure database that keeps a record of your organ donation decision.
Can I enter a clinical trial?
As you near the end of your life, it’s unlikely that you will be well enough for a clinical trial. Although you might feel that a trial would be worth a try, doctors cannot enter you unless you meet the criteria outlining who can take part.
How much time do I have left to live?
No one can say for certain how much longer you will live for. However, it might be possible for doctors to give you a rough idea of how much more time they expect you to live. They base this on the lymphoma type you have, how fast it is growing and how it affects your body.
Where can I find information about choosing where I have end of life care?
End of life care can be offered in a variety of settings: at home, in a care home, in a hospital or in a hospice. The NHS website has information about these options. Your medical team can also tell you about options that are available near to you.
How can I talk to a child about death?
Talking to children about death can be very difficult. Your approach depends on lots of things – these include the child's age, developmental ability, and their relationship with the person who is dying or has died. Other factors might include how you usually communicate as a family and any religious beliefs you or your child might have.
Marie Curie has information about questions and concerns children and young people might have about death. We also have an end of life, bereavement and grief useful organisations list, which includes talking to children about grief.
Where can I get more information about end of life decisions and care at the end of life?
You can find out more on these topics in:
- our useful organisations list, which includes a section on end of life, bereavement and grief
- Hospice UK’s Planning Ahead tool, which outlines the decisions and various options to think about
- information about choice in end of life care and making decisions on behalf of someone on the UK Government’s website
- Marie Curie’s research and reports, including their research to help understand what makes a good end of life.
- The National Palliative and End of Life Care Partnership’s publication: Ambitions for Palliative and End of Life Care: A national framework for local action 2021 to 2026.
Someone I love has died – is what I’m experiencing normal?
For most people, the intensity of grief and sense of loss gradually fades as they start to adjust. As time goes on, you might experience a gradual ‘letting go’ of the person as you move into a new phase of your life.
Despite still loving and thinking about the person, you might start to feel warmth when they think about them. People often remember their good qualities and the happy times they shared together.
At first, realising that you’ve laughed or haven’t thought about the person for a while might bring a sense of guilt.
However, over time, although the person is no longer physically there, some people feel that the person is with them in some way. This is very personal and means different things to different people. Some people describe a sense of closeness and being with the person when they think about them.
Reminders about the person can be very difficult. For example, hearing a song on the radio or walking past someone who is wearing the same fragrance the person wore a lot. Certain dates, like birthdays and anniversaries of the person’s death can be particularly hard. You might feel that you ‘re-experience’ some of your earlier grief and sadness. Sometimes the lead up can feel more challenging than the day itself.
There is no right or wrong way to cope with these times – think about what would help you. For example, you might plan time with a friend or take some time off work. Some people mark the occasion, such as with a family meal to remember the person who has died. Others prefer to carry on with their day-to-day life without doing anything different.
Cruse Bereavement Support has more information about coping with anniversaries and reminders. The Good Grief Trust has a list of grief and bereavement cafes across the country. These provide a welcoming place for people grieving to connect with others and feel less alone.
There’s no set timeframe for how long grief lasts. Each person goes at their own pace. You might feel OK on one day and not the next.
There are lots of organisations that provide grief and bereavement services. We list some of these in our useful organisations section on end of life, bereavement and grief. You might also be interested in our separate information about grief and bereavement, which includes a section on how you can help yourself.
Our Information and Support Team can also offer a listening ear and help you find the right support for you.
Trusted Information
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Cancer Research UK, 2025. Deciding to refuse treatment. Accessed September 2025.
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Cruse Bereavement Support. Coping with anniversaries and reminders. Accessed September 2025.
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NHS, 2023. Advance decision to refuse treatment (living will). Accessed September 2025.
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NHS, 2025. What end of life care involves. Accessed September 2025.
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Yalom I, 2009. Staring at the sun: overcoming the terror of death. Jossey-Bass: USA.