Care needs at the end of life
When you’re living with a terminal illness, it can feel overwhelming and as if there’s nothing you can do. But thinking ahead about what your care needs might be as the end of life approaches, and learning what kind of care is available, gives you more choices and more control.
If you don’t feel ready to read this information just yet, you can come back to it at any time.
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Planning for your care helps you make the most of life, even when you’re seriously ill. Good care can help you to stay independent and do the things you want to, for as long as possible.
Care is more about the people who give it, than where it happens. When anyone is nearing the end of life, they can choose where they want to be whether that is at home, in a care home, in a hospice or in hospital.
If you’re at home you or your carer might like to create a folder of nutrition and drinking charts, rotas for overnight nurses and contact numbers so you can quickly find the information you need.
With the right planning, you should be able to have all of your care needs met to a high standard. What matters most is having care and support from professionals with the right skills and experience.
Various professionals, working together, will make up your palliative care team.
When you’re nearing the end of your life, a nurse may be the person who spends the most time with you. Palliative care nurses, like Marie Curie Nurses, specialise in caring for people with a terminal illness. They work in hospices or hospitals, and they can also care for people in their homes.
Palliative care nurses can:
- identify your needs and help you plan your care
- be the link between you, your family and all the different professionals and services involved
- give medications and treatments for pain and other symptoms like nausea, bowel problems, pain and breathlessness
- help you and your family cope with your condition, at every stage
Nurses are also experts in helping with essential needs like:
- wound care
- nutrition and eating (including swallowing difficulties)
- drinking and fluid
- bowel and bladder care
- staying comfortable
- emotional support
Ask your doctor or hospital nurse to refer you to a local palliative nursing care service. Your district nurse may also provide palliative care in your home. They will refer you for additional nursing care from Marie Curie if they feel it’s needed.
Healthcare assistants work in the home, in care homes, in hospices and in hospitals. Senior healthcare assistants play a vital role in the Marie Curie team.
A healthcare assistant isn’t a registered nurse, but they have been trained to help with personal care like:
- keeping clean
- eating and drinking
- using the toilet
- incontinence care
They can also assist with medications, if they have the right training.
When you’re receiving end of life care at home, this will often be led by your GP but could be led by a hospital consultant. The person in charge of your care will:
- help you and your family manage your physical needs
- help with arrangements for your social, psychological and spiritual needs at the end of life
- explain what’s happening with your condition, and what the prognosis is
- make sure that you have access to the medical and nursing care you need, 24 hours a day, seven days a week ̶ this means checking there’s an arrangement in place for any needs you might have at night, at the weekend and on holidays
- prescribe medications and other treatments to manage pain and symptoms, possibly including a Just In Case box kept in your home with medicines you might need in a crisis
You may also meet a palliative care physician, a consultant that specialises in care of the dying. They have advanced skills and can provide treatment to manage difficult pain and symptoms. They mostly work in hospitals and hospices, and they may offer advice to GPs. In some areas, a palliative care physician may be able to visit your home.
Clinical nurse specialists work in all settings (home, hospital and hospice). They work in teams, usually supported by a specialist palliative care doctor. They have specialist skills and will coordinate much of the care. They assess symptoms and advise on appropriate treatments.
These are trained and qualified healthcare professionals who can help with a wide range of practical and physical problems.
They are trained to help with and improve physical problems which include managing reduced mobility, pain and breathlessness.
They can help you make adjustments to your home and help you find ways of continuing to carry out day to day activities.
Speech and language therapists
They can help you with communication problems and may help you with swallowing difficulties.
They can advise you on your dietary needs and ensure you have the correct food if you have problems swallowing.
If you think a therapist could help you, ask your doctor or nurse how to get this care. If there’s no therapist in your area, there may be a specially trained nurse or doctor who can provide similar services.
You may need help from lots of different services and social workers can help you find your way around the system.
Social workers are used to helping people in difficult emotional circumstances and can provide invaluable support. They can help you get access to services like meals delivered to your home, or help with cleaning and running your household. They can also advise your family with practical and financial matters such as housing, claiming benefits and solving money problems.
Many professionals looking after you will provide emotional and psychological support. Each member of the team has a responsibility to look after your emotional wellbeing and assess if you need further support. In many cases this can be carried out by psychologists and counsellors.
When you have a terminal illness, it brings up profound questions that don’t have an easy answer. What’s the meaning of life? How can we settle problems from our past? How should we face death, and what happens afterwards? That’s why spiritual care is seen as an important part of looking after people at the end of life. A chaplain is a person who can help you and your family work through these questions, and give you emotional support as well.
Chaplains are based in hospitals or hospices. They’re trained faith leaders, and come from various religious backgrounds. They’ll help regardless of your own religion, or if you follow no faith at all. If you want to see a chaplain at any time, just ask your nurse or doctor to arrange it.
NHS website – accessing palliative care
Health Talk Online – care in hospitals, hospices and care homes
All Ireland Institute of Hospice and Palliative Care (AIIHPC) – for care in Northern Ireland
This content is provided for general information purposes only. It's not medical, financial, legal or personal advice. We suggest that you consult with a qualified professional about your individual circumstances. How our information is created and how it's used.
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