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Supporting Someone at the End of Life
Supporting someone who is dying can be deeply important, but it can also be physically and emotionally demanding. You may be a partner, family member, friend or carer, and your role may range from simply spending time with the person to providing substantial day-to-day care.
There is no single right way to support someone at the end of life. What they need may change from day to day, and it is important to recognise your own limits as well as their needs. Professional care is there to support both the person who is dying and the people around them.
Being There and Communicating
You do not always need to know what to say.
For many people approaching the end of life, simply having someone familiar nearby can be reassuring. You might sit together, talk, listen to music, look at photographs, hold hands or share silence.
Try to follow the person's lead. They may want to talk about dying, or they may want to talk about completely ordinary things.
If there are things that matter to you or that you want the person to know, you do not necessarily need to wait for a perfect moment to say them.
As someone becomes more tired, conversation may become difficult and they may communicate less. Continue to speak to them naturally and calmly, even if they do not respond.
Helping Them Stay Comfortable
There are many small things family and friends can do to help someone feel comfortable.
This might include helping them find a comfortable position, adjusting pillows or bedding, keeping the room quiet, offering a drink if they want one, helping with mouth care or making sure things they like are nearby.
You may also help with washing, dressing, food or toileting if both you and the person are comfortable with this.
However, you do not have to take on personal or nursing care which you find difficult or do not know how to provide safely.
Ask the nursing team to show you how to do practical tasks where appropriate and tell them if you need more help. Marie Curie's guidance for carers similarly distinguishes between the practical and emotional support family members can give and the professional support that may also be needed.
Sharing Care with Professionals
Caring for somebody at home does not mean that the family has to manage alone.
GPs, community nurses, palliative care teams, healthcare assistants, social care services and hospice teams may all contribute to care depending on the person's needs.
Be clear about what you can and cannot manage. There may be aspects of personal care which the person would prefer a professional to provide, and family members may also prefer to remain primarily a partner, child, sibling or friend rather than becoming the person's sole carer.
Keep useful telephone numbers somewhere easy to find, including daytime and out-of-hours contacts.
If several family members are involved, sharing information can help avoid one person having to coordinate everything.
Supporting Children/Young People
Children and young people should not automatically be excluded when someone they love is dying.
Not knowing what is happening can sometimes be more frightening than being given clear, appropriate information.
Explain what is happening honestly in language they can understand. It is usually better to use straightforward words such as "dying" and "death" rather than phrases such as "going to sleep", which can be confusing.
Give them opportunities to ask questions and let them know that it is all right to feel sad, angry, worried or even to carry on playing and enjoying themselves.
Children do not need every detail at once. What they need will depend on their age, understanding and relationship with the person who is ill.
Specialist organisations and healthcare teams can help families work out how to have these conversations. The existing DMR site also signposts families to local and national support for children before and after a bereavement.
Looking After Yourself
Caring for someone who is dying can be exhausting.
You may be dealing with interrupted sleep, practical responsibilities, difficult decisions and the emotional impact of knowing that someone you care about is going to die.
You may also begin grieving before the person dies. This is sometimes called anticipatory grief and can involve sadness, anxiety, anger, guilt or a sense of loss as the person's illness progresses.
Try to accept help when it is available. Even a short break, a meal prepared by somebody else or having another person sit with the person who is ill can make a difference.
You are allowed to have limits. Needing sleep, time away or professional help does not mean that you are giving the person less care.
Knowing When to Ask for Help
You are not expected to know whether every change is normal.
Ask the healthcare team what you should look out for and who to contact if something changes.
Contact the appropriate doctor, nurse or care team if the person develops new or worsening pain, breathlessness, agitation, confusion or other symptoms; if medication is no longer working or cannot be taken; or if you are worried that they are uncomfortable.
You should also ask for help if the practical demands of caring have become more than you can safely manage.
Sometimes the needs of the person who is dying change quickly. Additional care may be needed, or the safest and most comfortable place for them to be cared for may need to be reconsidered.
Useful Resources
These organisations provide information and support both for people approaching the end of life and for family members and friends caring for them.