Choosing where to die
This page has information to help you and your relatives and friends make a decision about where you would like to die. There is information about
If you know that your life is coming to an end, you are in a position to make some choices and decisions about how you would like that to happen. Not everyone feels able to think about where they would prefer to die. It is a very difficult decision to make. 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 may not work out the way you want. For example, you may want to stay at home but your family may not be able to look after you there. This can be very hard to cope with, especially if you really 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 have a hospice arranged for if or when you and your family need it.
It can be difficult to know what care and support you can have when you are dying. Health professionals in the UK have developed a number of documents and guidelines to help people who are dying make these difficult decisions.
They include the Preferred Priorities for Care document. This is a document for you to write down what your wishes and preferences are during the last year or months of your life. It aims to help you and your carers plan your care when you are dying, including where you would like to die, whether that is
- In hospital
- In a hospice
- At home
- In a care home
Your doctor or nurse asks you questions to find out what care you need, and also what your wishes are. Then they write you an individual care plan. Some areas now have special electronic systems in place 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. So for example, out of hours doctors or ambulance services can look at this record. It tells them what your care preferences are, such as where you would prefer 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.
The National Institute for Health and Care Excellence (NICE) produced guidelines in 2004, which set out the care that should be given to people who are dying. They also produced information for the public about the supportive and palliative care guidelines.
Many people get to know hospital staff very well if they have stayed in a particular ward during their treatment. Strong relationships can develop, which can be very comforting for many people. It is natural that you may 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 this ward.
The ward may be busy, and so the staff may not be able to give you the care that you need when you are dying.
Some cancer hospitals have a palliative care ward. The staff there specialise in
- Caring for people with advanced cancer
- Controlling symptoms
- Looking after dying people
These wards are often quieter and more peaceful than the busy treatment wards you may be used to. The staff will be able to look after you and your family in the way you would like. These wards aim to have an environment more like home and may have available
- Single rooms for privacy
- A kitchen
- A lounge or day room
You are usually able to bring in your own duvet, pillows and other personal belongings to make you feel comfortable.
On a palliative care ward you will have access to
- Social workers
- 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 may be able to get this nursing care in a local community hospital, care home or at home. This is called continuing care. NHS continuing care is free care which can be provided outside the hospital. You can read more about continuing care on the NHS choices website.
Hospices care for people living and dying with illness, that shortens their life (life limiting illness). You can go for the day or longer, and have treatment there to relieve symptoms.
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 may 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 in a more homely way than a hospital. Visiting times, meal times and treatment times are usually very flexible. The staff are experts in controlling symptoms and side effects that can be common in the last few weeks of life, such as
- Breathing problems
If you choose to die in a hospice, the staff’s main aim is to allow you to do so, in comfort and with dignity.
Over 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.
Many people choose to die at home where they feel safe and comfortable. The surroundings are familiar and they can be surrounded by friends and family. Your carers may also find this easier as they can work to your routine instead of fitting in around the routine of a hospital or hospice. The hospice doctors and nurses work with other professionals in the community to care for you at home, if that is what you want.
But some carers find it too frightening and difficult to care for their loved ones at home. If they have not looked after anyone before, they may 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 will not be alone in caring for you. They will have help and support.
Many relatives who have looked after their loved one 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 would not choose to have had it any other way.
Don't forget that you can combine being at home with having support from the local hospice. This may include home visits from specialist nurses or visits to the day unit at the hospice. You can also have short stays in the hospice ward, if this is necessary. Your carers may feel more confident if they know they can call on expert services if they need to.
Caring for someone at home can be emotionally and physically draining. Your loved ones need to know that they can get daily practical help, and take some time out if they need to. You may like to ask friends and relatives to help with everyday tasks such as
- Picking children up from school
This allows your carer to spend their time caring for and talking to you.
Support and care is available to help you stay at home during the end stages of your life. To find out more about this, ask your
- Local home care team (from a hospice or hospital)
- District nurse
- Hospital doctors 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.
If your usual bedroom is upstairs, it may help to turn a downstairs living area into your bedroom so that
- You and your carer don’t have to climb the stairs
- You may have more room in the living area than you would upstairs
- You may 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 to feel more a part of family life. You don’t have to feel that you are shut away in a room on your own.
It is 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 (GP, district nurses, hospice home care team and specialist cancer nurses)
Private nursing homes, and other residential care homes, may offer short or long stays for people in the last few weeks of life. However places may be limited and they can be expensive.
If your doctors think you have less than 6 months to live, you may not have to pay for care in a nursing home. And if you no longer need to be in hospital, but you still need nursing care the NHS may pay for you to be cared for in a care home. This is called continuing care. NHS continuing care is free care which can be provided outside the hospital. You can read more about continuing care on the NHS choices website.
There is information about finding a nursing home near you and the costs involved on the following websites
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