Supporting family and friends in palliative care
Please be aware - this information is for healthcare professionals.
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How can I support family and friends?
Friends and family should be involved in discussions about the person’s care.
All families are different. Take time to get to know each family you work with and the relationships that each family member has to the person. Having a terminal illness can change the role that the person has in their family – for example, they might have been a carer for someone else in the family but now they need help with their own care.
Avoid making assumptions about someone’s relationships, sexual orientation or gender identity. If someone is LGBTQ+, using inclusive language can help them feel more accepted. For example, ask if someone has a partner, rather than a husband or wife, boyfriend or girlfriend. Instead of asking someone who their family or next of kin is, ask them who’s important to them and who they would like to be involved in their care. This may include partners, family members, and friends. [We have more information about supporting LGBTQ+ people at end of life.
Families can be a source of support for many people, but they can also be a source of stress. The person you’re caring for may not want their close family to be involved in their care. Ask them who’s most important to them and how much they want other people to be involved.
Here are some tips for talking to friends and family:
- Ask the person who’s most important to them.
- Take time to get to know the person and those close to them.
- Find out how much they know already before giving them new information.
- If possible, speak to the person and those close to them at the same time. This means everyone gets the same information.
- Listen to everyone’s concerns but remember that the concerns of the person you’re caring for are most important.
We have more tips on good communication at end of life to help make sure everyone is listened to and understands what you’re telling them.
You should get consent from the person to share details of their care with other people, even close family and friends.
Friends and families may have different opinions from the person about what care they should have. It’s important to listen to everyone but remember that it’s most important to follow the wishes of the person you are caring for.
You may find it helpful to share this film with family and friends to help them understand what to expect towards the end of someone's life.
Marie Curie Nurse Maria describes the common changes that you might notice in someone’s last weeks, days and hours of life. Peter, Shital and Tracey also talk about their personal experiences of looking after their loved ones during this time. If you’re caring for someone who is dying, you might find that there are some things you can relate to. But you might find that you don’t notice these changes or that you notice them at different times – everyone’s experience is different.
Update: In this video, we talk about skin changes (4:26). Our information has since been updated as follows: People with lighter skin tones might look slightly blue, or their skin can become mottled (have different coloured blotches or patches). On people with darker skin tones, blue can be hard to see. It may be easier to see on their lips, nose, cheeks, ears, tongue, or the inside of their mouth. Mottling is also harder to see on darker skin tones – it might look darker than normal, purple or brownish in colour.
Withholding information
Sometimes, family members or friends will want to withhold information from the person with a terminal illness, and ask the medical team to not to tell them either. This is called collusion. This could include deliberately not telling them that they are dying, or pretending that they’re going to get better.
Finding out the reasons
There are lots of different reasons why someone might want to withhold information – often, it’s because they want to protect a loved one. There are sometimes complicated dynamics in a family that you might not be aware of and this needs to be handled sensitively.
Try and find out why the family wants to withhold information and try to address any concerns they have.
What you can do
You shouldn’t withhold information from the patient just because the family asks you to.
If possible, try to find a way to have open and honest discussions with everyone involved. The patient is the most important person when the conversation is about them.
It may help to establish what the patient already knows and how much they would like to know.
Keeping information from someone might mean that they don’t get the chance to do the things that are important to them in their last few days and weeks of life.
Getting support
This can be a very challenging situation. Ask for help from an experienced colleague if you don’t feel comfortable. It might be helpful to involve a chaplain, social worker or counsellor who has experience in working with families.
Withholding information from family and friends
Sometimes the person who is dying will ask the medical team to keep information from family members. You should respect this but explore why it’s important to them and see if you can help them to speak those important to them.
What other support is available?
If you have concerns that someone and their family and friends need more support, you can speak to their GP, specialist nurse or social worker. It may be useful for them to speak with a counsellor or chaplain too.
Organising a meeting (sometimes called family conference) with the person, those close to them and the professionals involved in their care can be a good way to make sure everyone’s concerns are heard and addressed.
Useful resources
Key points
- Supporting family and friends is a key part of palliative care.
- Families can be complex. Find out who is most important to the person and who they want to be involved in their care.
- It’s important to listen to everyone’s concerns.
- If family and friends have different opinions, you should listen to everyone's views, but remember it’s most important to follow the wishes of the person you’re caring for.
- It may be helpful to get support from the person’s specialist nurse, social worker, counsellor or chaplain.
Disclaimer
This information is not intended to replace any training, national or local guidelines, or advice from other health or social care professionals.
The Palliative Care Knowledge Zone is not intended for use by people living with a terminal illness or their family and friends, who should access our information for the public.
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