For people with advanced cancer and who are approaching the end of life, coronavirus is making a difficult time even more challenging. The social distancing rules are affecting how we spend time with our loved ones and friends. And the outbreak is having a big impact on healthcare services such as community nurses and hospice care.
Getting information about what support is available can help you and your loved ones cope.
We have separate pages about coronavirus and cancer, coronavirus and cancer treatments and coping with coronavirus.
Your end of life care and coronavirus (COVID-19)
For many, the coronavirus will make this difficult time even more challenging. It can be worrying and unsettling if there are changes in the support available to you.
Talk to your healthcare team about how you are feeling. They will be able to tell you what support and care they can provide, and how they will do this.
What support is available during the coronavirus outbreak?
Your hospital team usually refer you to a community palliative care team for your care and support at home. This is a team of professionals such as Macmillan nurses or hospice nurses. They advise on pain control, sickness and other symptoms of cancer. They also provide emotional support to both you and your carers.
Other community teams also support people at home – for example, district nurse teams or social workers. And you might use the local hospice for both inpatient and outpatient support.
Your community team will continue to support you during the coronavirus outbreak. But they might need to change how they support you. Reasons for this include:
- staff shortages due to illness or staff having to work elsewhere
- to protect everyone from spreading infection
Health care professionals can still visit you at home. But sometimes, your community team might offer you telephone or video support instead of coming to your home. When they do visit you at home, they will follow strict infection control policy to protect both you and them to reduce the risk of spreading the coronavirus.
Your local hospice will be able to tell you what services they are still offering. They might need to change the way they work. For example, some hospices have changed their visiting policies and have shut day care services.
What happens to my care if I get COVID-19?
Community health care teams can still visit you if you have COVID-19. But you must tell them straight away if you get any symptoms. They will follow strict guidance on infection control to protect themselves and other patients. You might see a different nurse or carer to usual. But they will speak to your regular team so they know about your care needs.
Your cancer might make you more at risk of becoming very unwell from COVID-19. You can talk to your health care team about this, and what will happen if you become very ill and need hospital treatment.
Spending time with family and friends
You might have questions about the social distancing rules, and whether you and your loved ones are able to spend time together in the last weeks and months of your life. It’s understandable that you might be very upset if you’re separated from the people who you want to spend time with.
Can family and friends visit me in my home towards the end of my life?
The government has asked everyone to stay at home and stay away from other people. They list some reasons why people can leave the house. Unfortunately, they do not include visiting someone who is dying in their home as a reason you can leave your house.
If you have a friend or family member caring for you, but who doesn’t live with you, the government rules state they can still visit to provide your essential care. For example, they can visit to help with washing and dressing, food or medicines.
It’s important that they don’t visit you if they, or someone they live with, have symptoms of the coronavirus. And to reduce the risk of spreading the virus, they must wash their hands for at least 20 seconds when they come into your house.
Can family and friends visit me in a hospice, hospital or care home if I’m approaching the end of my life?
The government guidance does recognise how important it is to be able to visit someone at the end of their life. But some hospices, hospitals and care homes have had to change their policies about visiting to lower the risk of spreading the virus. They will be able to tell you what their visiting policy is.
Some care settings have had to stop all visitors. And others might have restrictions on how many visitors can come and when they can visit.
How can I keep in touch if people can’t visit me?
It’s understandable that you might feel very upset if you can’t spend time with the people you want to. If you feel well enough, you can still talk by phone or do videocalls if you can. Even if you don’t feel well enough to talk, it might be nice to hear the voices of people you care about.
Your friends and family can still write to you or send gifts. If you have someone caring for you, they can help read letters to you and also help with phone calls. Your closest friends or family members can try and keep everyone else up to date about how you are, if that’s what you want.
What happens if my family member or carer get COVID-19?
It’s a good idea to have a plan in place for how to protect yourself from COVID-19 if someone you live with, or who cares for you, gets the virus. This might mean making a back up plan in case someone else needs to care for you. This would include names of alternative people who could help care for you if your main carer becomes unwell.
To protect yourself, there are some things you can do if someone close to you has the virus, including:
- going to stay with other family members or friends
- keeping away from each other as much as possible if you have to stay living together
- getting advice from your GP or community team
Support for carers and loved ones
Looking after someone in the last weeks of life can be a huge emotional and physical challenge. So it's important that you also look after yourself.
At the moment, it might be especially difficult. There might be less practical and emotional support available. And you can't do things you might normally do to look after yourself, like meeting your friends or going out. There are some tips below which might help you feel a bit less alone.
- Contact the community health care team and tell them how you are feeling - they might still be able to visit you at home, or they can offer both practical tips and emotional support over the telephone.
- Try to make time to keep in touch with other family members and friends - for example, you can do this using the telephone, video calling or social media.
- Your local authority might have a scheme to help with things like shopping and getting medicines - look at your local authority website or contact them directly to see what help they can offer you.
- You can call the Cancer Research UK nurses on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday if you want someone to talk to.
- You might be able to talk online to other people in a similar situation to you using online forums such as Cancer Chat.
The last few days
What happens in the last days of life is different for everyone. But it can help carers and relatives to know a little about what to expect. It can also be helpful to have guidance about what to do after someone dies.
We have a section of information about what happens at the end of life. This includes information about caring for the carer, what happens during the last few days of life, and what to do after someone has died.
After someone dies, you might go through a range of feelings. It can be a lonely time, and the current situation might make feelings even harder to cope with.
You might find it useful to contact an organisation that offers support and advice to people in this situation, such as Cruse Bereavement Care. They have information about bereavement during the coronavirus outbreak.
Marie Curie is a charity who provide information and support, nursing and hospice care to people at the end of their life. They have a section of information on their website about coronavirus and end of life care. This includes information about:
- making decisions about your future care (advance care planning)
- caring at home during coronavirus
- what to do when someone dies