Palliative care for adults with a brain tumour
Palliative care helps people with serious illnesses live better and does not necessarily mean end of life care. Here we’ll discuss palliative care for people with brain tumours and answer some questions about this form of care.
The aim of palliative care is to give you the highest quality of care in order to minimise any distressing side-effects from your tumour or its treatment.
It’s often misunderstood as only being offered when there are no more curative treatment options left, but it can be given alongside your standard treatment, at any point after your diagnosis.
On this page, we’ll cover:
What does palliative care involve?
Where and how can I get palliative care?
What is palliative care?
Palliative care is supportive care, which prevents, treats or controls the symptoms and side-effects of a disease and its treatment.
In short, it’s care that aims to help people with serious illnesses improve their quality of life.
Rather than focusing solely on medical treatment, palliative care should also address the emotional, social, practical and spiritual impact of a life-limiting condition. This is known as a holistic approach.
Palliative care should have a person-centred approach that means the patient (and their family where appropriate) becomes an equal partner in the planning of their care. This ensures it meets their needs and focuses on what matters to them.
It’s important to note that being offered palliative care does not necessarily mean end of life is approaching. Palliative care should be offered when a person is first diagnosed with a serious illness to ensure they experience the best quality of life.
What does palliative care involve?
A brain tumour can have many effects on you and your loved ones. Palliative care can be used to help ease these effects for you and your family. You should have access to support from palliative care for all of these needs:
Palliative care can help to manage the many symptoms and side-effects of your brain tumour and its treatment. It can also be used to help you cope with other effects related to your care, like trouble sleeping or loss of appetite.
These can be treated through medication or referral to other healthcare professionals, such as physiotherapists or dietitians, who can form part of the palliative care team.
A brain tumour diagnosis is a life-changing event that can have a profound emotional impact on you and your family. This can range from worrying about the future or feeling stressed about the financial impact of living with a brain tumour to more serious mental health issues like depression and anxiety.
Palliative care can include services that help relieve or manage the emotional effects that you may experience. This can include counselling, other psychological therapies (such as talking or art therapies), complementary therapies (such as acupuncture or massage) or, if needed, medication.
Find out more about our free counselling service for people with a brain tumour and their loved ones.
It can also provide support to families, including children, to help them talk about their worries and fears and to communicate with each other.
Our series of animations featuring Jake, have been designed to help explain what is happening when a parent has a brain tumour or is receiving treatment for one.
Palliative care can also help you cope with the emotional impact of practical issues you experience, for example worrying about work, your finances or relationships. It can also help you access respite care, giving you and your family a break from the stresses of caring.
Living with a brain tumour and going through treatment can bring about a number of practical problems for you and your family.
This can begin with simply understanding your treatment options or struggling with complex medical forms. Your palliative care team are there to guide you through your treatment and help answer any questions you have.
They’ll also be able to signpost you to organisations and resources to help you with any other practical issues that may come up. For example:
- travelling to hospital appointments
- organising specialist equipment
- returning to work
- accessing financial support
- understanding what insurance options are available to you.
Your palliative care team will also be able to help prepare you for what to expect when you move from one care setting to another, for example, returning home from the hospital.
The team can also help you to write an Advance Care Plan (ACP), which will outline what care you want to receive in the future. Doing this helps to make sure that everyone knows your wishes and ensures measures can be put in place so that your care runs smoothly.
A brain tumour diagnosis is a life-changing event that can cause you and your loved ones to question your faith or philosophies. It’s natural to search for meaning in your diagnosis.
Exploring and understanding these feelings can help you find some peace of mind or move towards acceptance.
Your palliative care team can help support you and your loved ones as you do this. They can also refer you to other services that may help, for example, a counsellor, psychologist or faith leader – even if you’re not religious.
- 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.
- Find out about your local hospices to see what support they can offer. They often offer support such as support groups or complementary therapies like guided relaxation or massage therapies.
- You should look into setting up Lasting Power of Attorney, which will help to make future medical and financial decisions easier for you and your family. For more information, take a look in our resources section.
- Talk to your palliative care team about financial support available to you. There may be a number of financial benefits that you are eligible for, and after receiving a terminal diagnosis you may be able to fast track your application.
- If you want to, talk to your medical team about brain, tissue and organ donation. This isn’t something that many people think, or know about, and is a very personal choice. But to be able to do this, it needs to be planned in advance, so make sure you talk to your team about this.
- What can I expect next? What am I likely to experience?
- What can I do to prepare for my/my loved one’s end of life?
- How do I create a will? What support is available for this?
- What emotional support is available for me?
- Can I donate my tumour tissue to research?
Where and how can I get palliative care?
Palliative care is available wherever you’re receiving care. This can be in hospital or a hospice, during clinic visits or at home.
If you’re being looked after in hospital, you can be seen by the inpatient palliative care team.
Outside hospital, palliative care is normally provided from the local hospice setting, but will still be delivered in your chosen place, for example, at home. Your CNS, GP or key worker will usually refer you but you can also self-refer.
There’s a common misunderstanding that hospices are only for end of life care, which can lead some people to panic at the thought of being referred to a hospice.
However, hospices are not just for people who are dying.
Hospices are there for you from the point of diagnosis. They can see you in clinic or you could go to a hospice for a short period of time to give you and your loved ones a break (this is known as respite care), or to sort out your level of medication.
Most also offer day hospice, where you can go into a hospice as a day patient, to interact socially and enjoy leisure facilities.
Many hospices also offer community support in your own home (care at home), if you’re unable to attend the hospice.
Q&A with a Clinical Nurse Specialist
To help you fully understand what palliative care means, we‘ve asked Vicky Hurwitz, a neuro-oncology Clinical Nurse Specialist (CNS), to answer some of your frequently asked questions:
I’ve been offered palliative care, does this mean I’m about to die?
Palliative care can be given from the time of your diagnosis throughout your illness. Ideally, it should be offered at diagnosis, to help you come to terms with your diagnosis and to support you with the symptoms you’re having.
It may also be offered during and alongside your treatment, to help you deal with any side-effects. And it can also be offered after treatment during your follow-ups or at the end of life.
So while palliative care can be part of end of life care, don’t panic if it’s offered to you. This doesn’t necessarily mean you’re approaching the end of life.
What’s the difference between palliative care and end of life care?
Palliative care is focused on the care of people with long-term, life-limiting conditions. It involves symptom control, psychological support, carer support and looking at patients’ holistic (complete) needs. Its aim is to improve the quality of life for the person and their family.
End of life care refers to when a patient is in their last few weeks, days or hours of life. Then the care needs are focused on making sure a person has a ‘good death’. This means that the person and their family have their care priorities around the time of death met. For example, their symptoms are controlled, their pain is managed as best as possible, they’re comfortable and, ideally, in their preferred place.
Why am I having treatment if I’m palliative?
Palliative treatment aims to slow disease progression or to control the symptoms associated with it.
It doesn’t mean that it can cure the tumour, but aims to improve your quality of life and often hopes to prolong life.
You can always refuse any treatments that you don’t feel are right for you. It’s a good idea to hear all of the information from your healthcare team before making your decision.
Who provides palliative care?
Palliative care is provided by your specialist healthcare team. However, it’s important to be aware that it should be a partnership with you and your family too. Every palliative care team will be different, but it could include:
- healthcare professionals
- occupational therapists
- social workers
- faith leaders.
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