Pros and cons of end of life care at home
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.
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.
- 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.
- You may have better continuity of care, seeing the same community nurse, for example. In hospital, staff are rotated on shifts and you may not see the same people from week to week.
- In some cases, people feel they have received more suitable care at home – for example, better management of pain and fewer unnecessary interventions or treatments to prolong life.
On the other hand, some people feel that pain management can be better in a hospital, so on this final point it may depend on the level of palliative care services available in your local community or hospital.
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 hospital in the end.
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 hospice or community palliative care that you need. Sometimes the services are asked to care for more people than they can manage.
- 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 care they receive and find it doesn't meet their needs.
- 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 it, for example do you need to adapt the bathroom or get hold of special equipment?
- will you need nursing care and specialist palliative care to keep you comfortable and address any other needs?
Who can offer support at home?
If you do decide to spend your remaining time at home there is a lot of support available. This usually involves help from social services and care from family and friends, a GP, district nurse or community-based palliative care services.
GP and primary healthcare team
Your GP has overall responsibility for your care. They can tell you what care and support is available in your area. They can also arrange for community nurses to visit you at home.
Community nurses can organise and coordinate home care and help you to obtain the other care you need. That includes referring you to local services and other organisations, such as local charities that could help. They will liaise closely with others involved in your care, such as the community palliative care team or local hospice.
Community palliative care team
A specialist palliative care team, which brings together different professionals to help you maintain the best quality of life over your remaining days. They will:
- advise on pain and symptom control
- offer practical and emotional support for you and your carers
- arrange or provide nursing or personal care where needed. Some teams offer nursing care 24 hours a day.
They can also:
- arrange for you to be admitted to hospital or a hospice to get help with controlling your symptoms
- sort out respite services to give your carers a break.
Hospices provide care and support for people who have an incurable illness, helping them to live as fully as they can for the time they have left. They provide help with managing symptoms and pain control, as well as looking after emotional, practical, psychological and spiritual needs. That includes taking care of your family and carers over the course of your illness and through bereavement.
Their services are available at home or in their day unit, and they also offer short stays to help manage symptoms and pain relief or provide a break for your carers, for example.
The hospice team will work closely with the other health professional looking after you. You can talk to your GP or community nurse if you'd like them to refer you.
Physiotherapists and occupational therapists
An occupational therapist or physiotherapist may also be involved. They help you to live as independently as possible. For example, the physiotherapist might help with walking or breathing, or an occupational therapist might advise on how to adapt your home and the types of equipment you might need.
You should be able to arrange an occupational therapy assessment from your local authority’s social care team or through your healthcare team.
Your local authority’s social services team are another important source of information. If you need help with looking after yourself, they should arrange for you to receive a free care needs assessment. This will help you work out what help you need at home and how to obtain it. This might include:
- help from a care worker with washing or dressing
- meals delivered to your home
- adaptations, such as grab rails, additional stair rails or other specialist equipment.
They should also advise you on how to arrange care and your entitlement to any financial help with it.
Charities provide lots of support to people at the end of life and to their carers. You may have heard of Macmillan nurses or Marie Curie nurses, who work as part of a palliative care team, but charities also provide other kinds of support, such as:
- hospice care
- telephone or email helplines
- support groups for people with specific illnesses
- support for carers
- information and advice services, including information about benefits and how to apply for them
- specialist equipment that you can borrow or buy
- day centres offering activities and respite care
- transport to and from medical appointments
- volunteers who will visit you at home, or even provide hands-on help, such as help with shopping
- care for pets.
Someone from your health or social care team should be able to tell you what's available in your area. You can also find lots of information online, via your local authority’s website, for example.
End of life care helps people approaching the end of their lives to live as well as possible in the time remaining.
Living with a terminal illness can be expensive. We examine what financial help is available.
We explain the options for paying for care at home, from local authority support to paying for it yourself.