Choosing where to die
Choosing where you would like to die is an important decision. It can help to know your options and discuss them with your doctors and family.
Deciding where to die
When you know that your life is ending, you might want to think about where you would like that to happen. Not everyone feels able to think about this. But others feel very strongly that they know where they would like to be.
Discuss it with your doctors and your loved ones. It is best to let people know what you want. Then they can do their best to make sure you have help, support and care to allow that to happen.
People close to you will want to try to respect your wishes. But things might not work out the way you want. For example, you may want to stay at home, but your family might not be able to look after you there. This can be very hard to cope with, especially if you have your mind set on a specific place to die.
For many people, a combination of solutions is possible. For example, you could stay at home with support from nurses and your GP for as long as possible. But you can also have a hospice arranged if you and your family need it.
Help with planning
Electronic Palliative Care Co-ordination Systems
Many areas have special electronic systems to share your care plan. These are called Electronic Palliative Care Co-ordination Systems (EPaCCS).
The EPaCCS is a shared record for all health and social care professionals who might be involved in your care, including:
- out of hours doctors
- ambulance service staff
It tells them your care preferences, such as where you would like to be at the end of your life. It means that you can get the care you prefer, at any time of day and night, and it doesn't depend on who is providing the care.
In hospital
Many people get to know hospital staff very well if they have stayed in a particular ward during their treatment. You can develop strong relationships, which can be very comforting.
It is natural that you might want to go back to the same ward each time you are admitted to hospital. But it may not be possible to choose to die on that ward. This is because the ward may be too busy for the staff to be able to give you the care you need when you are dying.
Specialist palliative care ward
Some cancer hospitals have a palliative care ward. The staff specialise in:
- caring for people with advanced cancer
- controlling symptoms
- looking after dying people
These wards are often more peaceful than the busy treatment wards you might be used to. The staff will be able to look after you and your family in the way you would like. They aim to make the environment more like home. So, the ward could have:
- single rooms for privacy
- a kitchen
- a lounge or day room
You can usually bring in your duvet, pillows and other personal belongings to make you feel comfortable.
On a palliative care ward, you have access to:
- doctors
- nurses
- social workers
- dietitians
- counsellors and other health care professionals
The staff help you to stay comfortable and can discuss any of your issues and concerns.
Your condition may become stable so that you no longer need to be in hospital, but you still need nursing care. You might be able to get this nursing care in a local community hospital, in a care home or at home. This is called continuing care. NHS continuing care is free care which can be provided outside the hospital.
In a hospice
Hospices care for people living and dying from an illness that shortens their lives (life-limiting illness).
Hospices aim to ensure all your needs are met in the best possible way. It means looking after you as a whole person (holistic care) and also looking after the needs of the people close to you. You might go in and out of a hospice during the advanced stages of your cancer for symptom control and to give your carer a break (respite care).
Hospices are often calm places, decorated more homely than a hospital. Visiting times, mealtimes and treatment times are usually very flexible.
When you choose to die in a hospice, the staff’s main aim is to allow you to do so in comfort and with dignity. They are experts in controlling symptoms and side effects common in the last few weeks of life.
More than 200 hospices in the UK offer free care to people with cancer and other illnesses. Your GP, specialist cancer nurse or Marie Curie nurse can tell you more about hospice care and hospices in your area.
You can also find information about your nearest hospices from the online hospice directory
At home
Many people choose to die at home, where they feel safe and comfortable. The surroundings are familiar and friends and family can surround them. A community palliative care or hospice team will work with your GP and other services in the community to care for you at home.
Your carers might also find you being at home easier. They can work to your routine instead of fitting in around a hospital or hospice routine. But some carers find it too frightening and difficult to care for their loved ones at home. They might worry that they won’t know what to do.
If you are in this situation and would like to die at home, talk to your carer, doctors and nurses. Your care team can reassure your carer that they won't be alone in caring for you. They will have help and support.
Many relatives who have looked after their loved ones at home say that it was a very peaceful and loving atmosphere. They felt glad to have been able to care for their relative and wouldn’t have had it any other way.
Home and hospice care
Don't forget that you can combine being at home with having support from the local hospice. This might include home visits from specialist nurses or visits to the hospice day unit. You can also have short stays in the hospice ward if you need to. Your carers might feel more confident if they know they can call on expert services if they need to.
Support for carers
Caring for someone at home can be emotionally and physically draining. Your carer needs to know that they can get daily practical help and take some time out if they need to. You could ask friends and relatives to help with everyday tasks such as:
- shopping
- cleaning
- cooking
- picking children up from school
- gardening
This allows your carer to spend their time caring for and talking to you.
You and your carer can get support and care to help you stay at home during the end stages of your life. To find out more about this, ask your:
- GP
- local home care team (from a hospice or hospital)
- district nurse
- hospital doctor and nurses
They can organise bed pans, urine bottles, chairs, a hospital bed, a special mattress, and any other items or equipment you may need to make it possible for you to stay at home.
They can also prescribe medicines to control symptoms and keep you comfortable.
Making changes to the home
It might help to help to turn a downstairs living area into your bedroom, so that:
- you and your carer don’t have to climb the stairs
- you have more room in the living area than you would upstairs
- you can be nearer to the kitchen and other facilities
- your carer won’t worry about leaving you in a bedroom alone
Of course, it isn’t practical for everyone to do this. But if it’s possible, it can help you feel more a part of family life. Other changes to the home could include putting in handrails or a stairlift or borrowing a hospital bed.
Knowing who to contact
There are many people you can contact for help and support. This includes your GP, district nurses, hospice home care team and specialist cancer nurses.
It’s important that you and your carers know:
- which services and help are available to you
- who to contact and how to contact them when you need help
Ask your team about this. Keep this information and the contact numbers on your phone.
Nursing homes
Private nursing homes and other residential care homes might offer short or long stays for people in the last few weeks of life. But places are sometimes limited, and they can be expensive.
If you want end of life care in a care home, you will have an assessment for NHS continuing healthcare. NHS continuing healthcare means a package of care is arranged and funded by the NHS. It is free of charge to the person receiving the care.
You can read about how to find a nursing home and the costs involved on these websites:
- Association of Independent Care Advisors
- Age UK
You can find details of these organisations on our Resources and Support page.