End of life care planning

What is end of life care?

End of life care covers support for people in the last months, weeks, days and hours of their life. It is part of palliative care and will be arranged with your palliative care team.

Strictly speaking, you’re offered end of life care when your illness no longer responds to treatment and you’re expected to die within six months.

However, it will start when you need it. And, it’ll continue for as long as you need it, even if this is for a few days or weeks, many months or some years.

The aim of end of life care is to support and help you and your family live with good quality of life until you die. And, when the time comes, to help you die with dignity.

How end of life care planning can help you and your family

Being told you or your loved one is approaching the end of life is devastating. It can provoke a whole range of emotions, and, possibly later, many questions.

But, end of life care planning can give you peace of mind. It lets you think about practical issues, make the important decisions and put things in place. So, they’re out of the way and you can forget about them until you need them. You can then spend your time with your family and friends. You can focus more on living in the moment and on your and their feelings and needs.

Research has shown that end of life planning can also help your family when grieving and coping with bereavement. This is because you’ll have discussed things and put them in place. So, your family will have less to worry about and more time to deal with their grief.

You may have already thought about what you would like to happen when you’re approaching the end of life. This may have been during your Holistic Needs Assessment (HNA) and may have formed part of your Advance Care Plan (ACP). Of course, you can look at these again and change your mind at any time.

When you’re ready, this could also be good time to make plans for after you die.

What does end of life care involve?

End of life care will be different for everybody. Your palliative care team should think about your and your family’s needs when planning your end of life care.

As with palliative care, it is an all-inclusive (holistic) plan that supports your and your loved ones’ emotional, social, practical and spiritual needs.

Below are some of the things that you and your loved ones may want to consider when thinking about end of life care. If you don’t already have an Advance Care plan, this could be a great starting point.

Emotional aspects of end of life care

Coming to terms with dying

People who’re approaching the end of life usually know what’s happening to them. Though some of them might not admit it – at least not openly.

There’s a whole range of emotions that might come with this knowledge, including denial, fear, anger, guilt, anxiety and depression.

It’s important to remember that there’s no right or wrong way to feel or react. These feelings are completely normal, whether it’s you or a loved one who is living with a brain tumour. It’s also normal for partners, family members and friends to start grieving before somebody dies – this is called anticipatory grief.

You and your family won’t be alone at this time. If you would like to, you can speak to your healthcare team, who can help you understand what’s happening or likely to happen.

You may also wish to explore whether our free counselling service would be helpful for you.

Also, you could also speak to others in a similar situation, for example in our private online support groups. Or, you could call our Information and Support Line, who will be happy to provide a listening ear.

Talking about dying

Talking about dying can be helpful in end of life care planning. But, understandably, it’s very difficult for a lot of people.

Some people like to pretend everything is okay, but putting on a brave face can be exhausting. People often say that they find it a relief once they get over the initial hurdle and start the first conversation.

There are people you can talk to about what is happening to you, if you choose to. The choice is yours. But, if you want to talk, our free counselling service could be helpful for you.

Of course, this can be made more difficult if the person living with a brain tumour is experiencing communication difficulties or personality changes – both common side-effects of brain tumours.

In this situation, perhaps you can talk to your partner about the good times and happy memories, while they listen. You may also be able to seek help from a speech and language therapist.

Talking to your partner

Talking to your partner about end of life care can be one of the most difficult things to do. You may not want to upset them, or you may feel like you’re burdening your partner. Or, you may have things you want to say to them, but don’t know where or how to start.

Your partner may also find it difficult – they may have grown closer to you or they may have pulled away. They’re dealing with their own emotions and may be feeling that they need to be strong and practical for you.

Some people feel that to talk about dying will make it more likely to happen.

If possible, talk honestly together about your feelings. Try to accept those of your partner without judgement or argument. There’s no right or wrong way for either of you to feel.

Talking to your family

Your family may want to talk to you, but may be afraid to ask. This may be because they don’t want to upset you or because they are hurting too and are still working through their own feelings.

If you’re ready to answer questions, it can help to let them know that you’re happy for them to ask any questions they have. But you can also tell them when you don’t feel like talking.

Talking to your children

Talking to your children can be particularly difficult as your natural instinct is to protect them. But children generally are more aware of what’s going on than you think and hushed conversations that stop when they come into the room can lead to more worry rather than less. They also need some preparation for when you won’t be physically there.

How you talk to your children will depend on their age, their level of understanding and their individual personality. You know your children best, but many people say they want help with how to talk about it.

Our Jake animations have been designed to help talk to young children about brain tumours and there are many other resources available.

Talking to your friends

It can be emotionally and physically tiring to keep telling friends and loved ones not in your immediate support circle about what’s happening to you, but you may have many people you want to tell, and much you’d like to say to them.

One way would be to ask someone you trust to act as the main point of contact with others. They can tell them how you’re doing, so you don’t have to keep repeating it.

Be prepared that some friends may avoid spending time with you as they feel too awkward. It can help if you broach the subject with them, and let them know that you’re still the same person and would value their company.

If you have a friend or family member who is dying, you could read our guide to finding the right words.

Actions to take Questions to ask Resources to explore

• Consider writing down any passwords and give them to a trusted friend or family member who can use these later. Or set up password managers on your computer and leave details in your Will.
• Talk to your GP or palliative care team about accessing emotional support. This can be a difficult time for you and your family, and there are specialist counsellors who are trained to support you all at this time.
• Talk to your team about the possibility of leaving your whole brain or tumour site to research after you die.
• Speak to your team about additional finance which may become available now you are preparing for the end of life.

• What should I do about my social media accounts?
• What can I do to prepare for my own or my loved one’s end of life?
• Is there any further financial benefits I can claim for myself & my family?
• Can I leave my brain or tumour to research?

• What to do following a terminal diagnosis
• What happens at end of life
• Making plans for after you die
• Writing a Will
• Brain donation
• Counselling

Practical elements of end of life care

Place of care

One of the things that people often say is important to them, is to be able to decide where they receive their end of life care and, eventually, where they will die.

Your healthcare team should ask you about your wishes and work with you and your loved ones to plan for this. You could get your care from a combination of different locations, depending on your needs and preferences.

Wherever you’re receiving care, don’t forget to take your key documents with you, for example your Advance Care Plan (ACP) or a Lasting Power of Attorney (LPA).

Dying at home

Most people would prefer to die in familiar surroundings, often at home with their loved ones around them. You can usually receive this as end of life and hospice care can be provided at home in many places.

Of course, some carers may feel they’re not able to cope with the stress of looking after a loved one in these circumstances. Don’t feel guilty if this is how you feel.

You can ask your GP what’s support is available from your local services. They may be able to arrange for community nurses to come into your home to give nursing care.

Community palliative care nurses can visit to give you specialist hands-on nursing or personal care. As well as advising you on controlling pain and other symptoms, and give emotional and practical support for you and your loved ones.

In addition, you can ask your local council for a care needs assessment and the may be able to provide equipment or services to help you receive care at home. If you’re caring for someone at home, you can ask for a carer’s assessment instead.

Dying in a hospice

Some people are hesitant about accepting hospice care, as they see it as a sign they are right at the end of life. But, hospices cover more than death and dying.

Hospices aim to look after all your needs, and the needs of your loved ones, in a complete way. The staff are experts in managing any symptoms and side-effects you may experience. And, when it’s time, hospice care allows you to die in comfort and with dignity.

Hospice care is free for the person with a brain tumour and their loved ones. They’re usually calmer and more homely than a hospital, And, often the visiting times are more flexible.

Hospice Home Services can give much of the care that hospices offer. But, if your needs are more complex or you need more specialist support, you may be able to spend your last days in a hospice.

If you’re in hospital and would like to go to a hospice, talk to your hospital’s palliative care team when planning end of life care. They can tell you if it’s possible to move to a hospice and can make arrangements. This usually takes a few days, but can be fast-tracked.

Your GP or palliative care team in the community, can also refer you to hospice care. Some hospices will take self-referrals, but they’ll need to speak with your doctor to make sure they can offer the most appropriate care.

Hospices with inpatient units don’t offer longer-term residential care. Someone might be admitted to a hospice’s inpatient unit for a couple of weeks to help with things like symptom control and then transferred to another care setting when they’re stable enough.

They may be re-admitted at later stages for inpatient hospice care, as they approach their end of life.

It’s important to be aware that if your loved one’s illness doesn’t follow its expected course at this stage, you may be encouraged to move to alternative care, such as a care home.

Find a hospice local to you

Dying in a care home

The staff in care homes are trained to provide, day and night, the same type of care that your family could provide at home, such as washing, dressing and providing meals. Some care homes can also provide nursing care. These are sometimes called nursing homes.

To find a care home near you, talk to your social services, your GP, district nurse or hospital healthcare team. When deciding on a home, ask about the experience they have in providing and planning end of life care.

You may have to pay for this care, but you can be assessed for NHS continuing healthcare to fund your care. If you’re not eligible, you can ask your local council if they offer any support that you’d be entitled to.

Dying in hospital

Sadly, many people die in hospital, although this may not be their wish. However, it might be the place where you or your loved one needs to be.

Writing an Advance Care Plan (ACP) when you are planning your end of life care can help prevent unwanted hospital admissions by making sure your family and healthcare team know your wishes about dying at home or refusing certain treatments.

While the experience of dying is different for everyone, making sure you and your loved ones understand what may happen at the end of life can also help prevent unnecessary trips to the hospital.

Knowing what physical changes to expect and how to manage them, means you’re less likely to mistake something completely natural for a medical emergency that requires more drastic intervention.

Of course, some people don’t want to know, or would find this too difficult. This is completely normal. You can learn more about what to expect when somebody dies when you’re ready.

Financial

Receiving the news that your condition is terminal can raise concerns about the financial impact on you and your loved ones. It will often be something you think about when planning for end of life.

There may be a number of financial benefits available to you, as well as other forms of support to help your family now, and after you’re gone. After receiving a terminal diagnosis, you may be able to fast track your application under special rules.

It’s often very difficult to accurately predict how long someone might live for. However, if your doctor hasn’t spoken to you about how long you might live, you can still ask them about supporting your benefits claim.

Find out more about financial support if you become terminally ill with a brain tumour or financial support after a loved one has died.

Lasting Power of Attorney

When planning for end of life, you may worry about what happens if a brain tumour causes you to become unable to make your own decisions about your care or financial affairs.

In this case, you may want to consider setting up a Lasting Power of Attorney (LPA). This is a legal arrangement that allows you to appoint a person (or people) you trust, who, if needed, will make important decisions on your behalf.

Making an LPA can give you the reassurance of knowing that if such a time should come, somebody with your best interests in mind will be making those decisions.

If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:

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