According to the most recent research carried out by the Office for National Statistics (National Survey of Bereaved People (VOICES): England, 2015), as many as 80% of people say they wish to be cared for in their own home at the end of their lives. The healthcare team at a hospice will always listen to your preferences and plans are reviewed as things evolve, considering priorities and avoiding rigidity.

Benefits of end-of-life care at home

• You are likely to have more privacy, freedom and control over your day-to-day routine.
• Life may feel more normal sleeping in your own room surrounded by your own things, although if you have a hospital bed at home, you may have to be away from your bedroom so that it will fit in.
• Family and friends can visit whenever you/they wish and be nearby day and night.
• You do not have to fit into the routine of a hospital or hospice.
• In some cases, people feel they have greater control over what happens with their care at home, such as with interventions or treatments to prolong life.

On the other hand, some people feel that pain management can be better in a hospital or hospice, so on this last point it may depend on the level of palliative care services that are available in your local community or hospital. Some people may also find relief and relaxation moving to a hostel as they are then removed from the worries of looking after their home.

Staying at home is not right for everyone. And even where this may have been their initial wish, bereaved relatives sometimes admit that they felt it was right for their loved one to die in a hospice or hospital.

Disadvantages of end-of-life care at home

There are various reasons why remaining at home may not be the best thing.

• You may not be able to obtain the community palliative care that you need. Some patients’ symptoms need very intense support that is beyond the setup of community services.
• You may live alone and not have family or friends nearby to help.
• You may not want to rely on care workers for help with personal care, such as getting out of bed or using the bathroom. And some people can be disappointed with the amount of care they receive and find it doesn't meet their needs as there are restrictions on what can be provided. In a hospice or hospital, you will be guaranteed the presence of staff 24/7.
• Caring for a loved one can be emotionally and physically draining. You and your carers may decide that it's too much for them to cope with on their own at home.
• Not everyone is eligible for help with home care costs and you may find it difficult to manage the expense over time. 
• It's not always possible to adapt the home to meet your needs, for example putting in a special shower or installing a hospital bed. Or you and your loved ones might find it upsetting to see the home being turned into a mini hospital. 
• Your needs may change, and you may only be able to receive the care you need in a hospital or a hospice.

Is end-of-life care at home the right option?

Before arranging end-of-life care at home for yourself or a loved one, consider these key questions.

• What support can friends or family provide?
• What help do you need to remain independent, including daily care needs such as getting dressed, using the bathroom or help with eating?
• Is your home suitable; for example, is there enough space for a hospital bed?
• What changes might you need to make to your home, for example do you need to adapt the bathroom or obtain special equipment?
• Will you need nursing care and specialist palliative care to keep you comfortable and address any other needs?

There may be times when it is not possible for you to be cared for at your place of choice. Here at Katharine House Hospice, we will endeavour to take your wishes into consideration as much as possible.

Related pages

• What is end-of-life care?: read more about what care is provided in the last months, weeks and days of your illness with a focus on managing symptoms.
• Coping with change and uncertainty at the end of life: a practical guide for both patients and their families to help guide them through a difficult time of adjustment.
• How we help: Katharine House Hospice provides end-of-life care in the community, at the hospice itself and in local hospitals, together with lymphoedema treatment, psychological and spiritual care, and social and bereavement support.

The EPiC Resource Centre is kindly sponsored by Cleenol: working for a cleaner, safer, kinder world.