End of Life care and coronavirus
If you or someone you know is approaching the end of life, you may be worried about how coronavirus may affect treatment or care.
You may have people who live with you that provide your care. Or you may have family members who are your carers but do not live with you. They can continue to visit you to provide essential care if they do not have any symptoms of coronavirus. Essential care means things such as helping with washing or getting dressed or help with medicines. To reduce the risk of spreading the virus they should:
- wash their hands using soap and water for at least 20 seconds or use hand sanitiser
- keep the place well ventilated
- wear a face mask or covering in shared spaces
- cover their mouth and nose with a tissue when coughing or sneezing
- put used tissues in the bin immediately and wash their hands afterwards.
If your carers develop symptoms of coronavirus they will need to self-isolate. Let your healthcare team know if this happens.
You may have palliative care nurses and carers who visit you at home. The different nations in the UK have their own guidelines for health and social care. You can read the guidelines for:
You can contact the service who provides your care to see what support they can provide. Anyone coming to your home will follow strict hygiene rules and government precautions to protect both of you and reduce your risk of developing coronavirus.
You must tell your healthcare team if you or anyone you live with has coronavirus symptoms. They will still be able to visit you but will need to wear personal protective equipment (PPE). In some areas, there are teams who see only people who are coronavirus positive. But your own palliative care team will make sure they are aware of your medication and support needs.
If you have a terminal illness you may already have had conversations with your family and a health professional about your wishes for your future care. This is called advance care planning. It is called anticipatory care planning in Scotland.
These conversations are not easy but they can help ensure you get the care you would like towards the end of your life. It can also make it easier for your family and your healthcare teams to make decisions about your care.
The government is clear that even though the current pandemic is putting pressure on health and social care services, you and your family should still be involved, as much as possible, in planning and making decisions about your health and care.
- decisions about the treatment you want to receive
- whether you want doctors to attempt to resuscitate you in specific situations
- your care at the end of life
- where you want to be at the end of your life.
You may prefer to stay at home with care and support. Or you may wish to be in a hospice. You should discuss your wishes with your health professionals. They will do their best to support your wishes.
If you have not talked about plans for your future care, it would be good to do this now. Some people with cancer or a terminal illness are more at risk of becoming seriously ill with coronavirus. You can talk to your GP, cancer doctor or specialist nurse. You may also want to talk to your family, a close friend, or a spiritual or religious leader. If you do become seriously unwell and may not recover, it will help your family and healthcare team to give you the care you would like if you have planned ahead.
We have information to help you plan ahead and about how to record your wishes.
When a family member or close friend is dying it can be an emotional and difficult time. Each hospice, care home and hospital will have different rules about visiting. So, check before you go about whether you can visit and what the arrangements are. The healthcare team will be able to advise you.
If you have any symptoms of coronavirus you will not be able to visit. This is upsetting but is to protect other people who are looking after your relative or friend.
The healthcare team will be able to advise you about what to expect when you visit. They can also talk to you about any precautions that you need to take. The staff are there to give you practical information and emotional support as well as care for your loved one.
The coronavirus outbreak will affect many people’s grief, whatever the cause of death. Physical distancing may have prevented them from being able to say goodbye, holding the funeral they would have liked, and getting support in person from family and friends.
There is support available. Here are some links we hope will help:
- We have information and support about coping with bereavement.
- Our online community - Bereaved family and friends forum - Macmillan Online Community
- The bereavement organisation Cruse have information about dealing with grief in isolation.
- Sue Ryder have online bereavement support.
As coronavirus restrictions are starting to ease, it is understandable that this might be a worrying and uncertain time for people living with cancer. We have information about the support that's available, as well as advice to help you stay safe and cope with uncertainty.