Talking to family, friends and carers about the end of life
Please be aware - this information is for healthcare professionals
- are likely to know the patient and their needs very well
- may be providing care and support to the patient
- may be involved in making decisions about the patient’s care and treatment
It is important to remember that the patient is your main responsibility. There may be times when the patient and their family or friends disagree, or when those caring for the patient ask you to do something that you don’t feel comfortable with. These situations can be very emotional for everyone involved.
While there may not always be a solution when this happens, you may need help and advice from other professionals on your team. Involving others from the multidisciplinary team is fundamental to high-quality patient care.
How do I strike the right note with family and friends?
Having honest and open conversations about your role and its limitations can help. Explain your areas of responsibility and knowledge, and how you fit into the overall care team. If family and friends tell you about problems be respectful and compassionate, while ensuring that you maintain clear professional and personal boundaries. It’s not about taking charge or becoming indispensable – the aim is to empower and support the patient and their friends and family.
How can I answer difficult questions?
You may spend a lot of time with your patient and their friends and family, and get to know them well. You may be present when they face challenging moments and you may be asked some difficult questions as a result.
Give people time to talk about their concerns and listen without interruption. Try to respond to all of their questions, not just the ones that you think you can do something about. Encourage the other person to expand on what they’re trying to say, and ask simple questions to find out more if this seems appropriate. Check your understanding by summing up what you’ve heard.
Avoid being judgmental when there are family issues, or when people feel unable to cope with their caring responsibilities. If you can’t solve a problem yourself, explain that you can ask for help and advice from other professionals in the team. Don’t be afraid to say “I don’t know, but I can try to find out.”
You may find it useful to encourage family and friends to read our information about being there for someone with a terminal illness.
What should I do if there are disagreements?
Family and friends may ask you to hide things from the patient, or take decisions without their knowledge. Don’t agree to do this, but try to find out why you’re being asked. For example, there may be cultural or faith reasons.
Don’t try to deal with disagreements on your own – speak to your line manager and get advice from others on your team. A senior nurse or the chaplain , for example, may be able to help.
There may be times when loved ones disagree with the patient about treatment or care. Or they might ask you to do something that, in your opinion, is not best for the patient. The patient’s best interests must always come first. It helps if you can refer to an advance care plan, where the patient has already set out their wishes.
A friend or relative may have Power of Attorney, which gives them the legal right to make decisions on behalf of the patient, but only if the patient isn’t able to. In a conflict like this, get advice and support right away. Your line manager, a senior nurse or the patient’s GP should be able to help.
What should I do if I'm asked to withhold information?
You may find that the patient or their family ask you to withhold information from one another, avoid certain conversations about their illness or want you to give the patient false hope or reassurance. This is known as collusion.
In situations like this, it’s important to remember that collusion can be driven by someone’s desire to protect the patient. Often, the patient and their family will both be fully aware of what is happening, but do not want to discuss this together. It may also be due to cultural or religious beliefs about accepting that the person is going to die soon.
It is important to remember that the patient has a right to confidentiality and this should be respected. While you may acknowledge reasons for withholding information, you should let the patient and their relatives know that you have to answer honestly when they ask you questions. It is often helpful to try to explore why the patient or family want you to collude and sensitively discuss the benefits of being open and honest.
Offering to support the patient and their family while they start these difficult conversations together can relieve some anxiety. Engaging in collusion will not be productive and may compromise the work of other professionals involved in the person’s care.
You may need to read more or undertake further training to deal with this type of situation. If you would like more information on guidance and policies relating to collusion, you should speak to your line manager or contact the regulatory body for your profession, and ask for the Code of Conduct.
Points to remember
- Supporting family and friends is an important part of patient-centred care
- Disagreements may happen, which can be emotional for everyone
- Give people time to talk about their concerns and listen without interruption
- Remain confident and calm. Don’t try to answer questions when you don’t know the answer.Seek support from the multidisciplinary team when needed
- Develop an understanding of culture and faith, which may shape responses to death and dying
- Engaging in collusion will not be productive and may compromise the work of other professionals involved in the person’s care
- If there is conflict, get support and advice immediately from a senior member of your team
Print this page