If you have a terminal illness it can be helpful to think about where you would like to be cared for ahead of time, so that your needs and the things that matter most to you are considered by your care team and the people that are important to you.
Choosing your priorities at the end of life
Choosing what your priorities are can help you decide what type of care you want and where you want to receive it. This can include decisions around:
- Being free from pain
- Being with family members and friends
- Being in a familiar place
- Being away from home, for example if you don’t want children to be present
- Having access to specialist care
- Having privacy
Your care team should always try to support your wishes, although sometimes it isn’t possible to get the care you need in the place you want. Also, your needs might change, and you might change your mind.
Talk to your GP or members of your care team about what you want and what your needs are.
Choosing where to be cared for
You can receive care in a number of different places, depending on your preferences and the type of care you need.
A hospital might be the best place to be cared for if you need specialist care. Many hospitals have specialist palliative care teams to help you manage pain and other symptoms.
Hospitals are busy places and in most cases patients are on main wards, with few facilities offering privacy to relatives and friends who might want to spend long periods of time with you.
There’s more information on what to expect at a hospital on the NHS website
Receiving care at home
You might be able to receive care at home if you wish. Your GP can arrange for nurses to visit you, and for other specialist professionals to be involved in your care if necessary. Depending on where you live, Marie Curie nurses might be able to provide care at home. Your local hospice might have a home care team that can support you in your home. They can usually help with the following:
- hands-on care, in some cases
- advice on pain and symptom management
- practical and emotional support
- support for your carer and “respite care”, to give your carer a break
Your local authority’s social services department can also help with any equipment you might need, such as hand rails for example.
Many people choose to stay at home because it is where they are most comfortable. However this might not be possible if your home isn’t suitable or the right care isn’t available.
Hospices have specialist knowledge of end of life care. They offer a variety of services to help with different aspects of your care, including:
- Pain and symptom control
- Psychological and emotional support
- Palliative rehabilitation – helping patients to stay independent and continue living their lives as well as possible
- Complementary therapies, such as massage and aromatherapy
- Spiritual care
- Practical and financial advice
- Bereavement support
Hospice care can be provided in different settings:
- Day care support. You can attend regular daycare sessions without being admitted as an inpatient. Typically day care focuses on wellbeing, and can include drop-in sessions to discuss how to manage your symptoms, attending a yoga session, or taking part in music therapy.
- Inpatient care. Some people are admitted to a hospice for a short period of intensive care, for example 10 to 14 days, before going home or to another care setting. This could be for rehabilitation after treatment, or to control symptoms (for example pain, nausea or vomiting). People may also be admitted to a hospice during the final stages of their illness. Hospices often have a room for relatives to rest or stay in overnight.
- Outpatient services. Outpatient services can include appointments with health professionals, drop in services and rehabilitation sessions at the hospice, or in your home.
- Hospice at home. Some hospice teams can offer specialist nursing care in your home 24-hours a day. They can also help with changes to your living environment to help you stay at home, such as arranging for equipment or a bed to be delivered.
Most people are referred for hospice care by their GP or hospital doctor. A district nurse may also make a referral. You might be able to self-refer, although the hospice may wish to discuss this with your GP or another health professional. Find out more about getting hospice care on Hospice UK’s website.
Care homes are suitable for people who are no longer able to manage living on their own. Trained staff are available to help with things like washing, dressing and meals.
Some care homes have skilled nurses, and in some cases a doctor on site, so they can care for people with serious conditions and disabilities. These are sometimes called nursing homes.
Care home staff usually encourage regular visits from relatives. While they do not usually provide rooms for relatives to stay in overnight, they are normally happy for them to spend as much time as possible with the residents they are visiting.
Care homes can be run privately, by the local council, or by voluntary organisations. There’s more information on finding a care home and paying for your care on the NHS website.