Caring for someone at the end of their life can be challenging. Everyone will have different needs and wishes in their last days and hours. But there are some aspects of care you should do for all patients. These include communicating well, supporting them to make decisions about their care, maintaining hydration, managing their symptoms and medication.
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Key points
- Everyone’s experience of dying is different but there are some common care needs.
- Communicate sensitively and clearly with the person and those close to them about dying. Ask for help if you don’t feel comfortable having these conversations.
- Keep the person’s individual needs and preferences at the centre of every care decision.
- Speak to the GP or specialist nurse about managing symptoms.
- Continue to provide mouth care and other comfort care.
- Caring for someone who is dying can be very demanding. Take time for yourself and ask for emotional support if you need it.
Communication
Even when someone has been living with a terminal illness for a while, it can be a shock for them and those around them when they reach the last days of their life.
If someone asks how long they have left to live, it's important not to make any specific predictions. It's very difficult to know how long a patient is going to live for and getting it wrong can be distressing for those around them. Speaking in terms of weeks, days or hours can be helpful but explain that there are no guarantees and everyone is different.
Patients should ideally have the chance to explore their concerns and wishes about dying before the last days of life. But important conversations can still happen at this stage. Encourage the person to express any fears or worries that they have and do your best to address them. People may have difficulty communicating in the last few days but they may still be able to hear you. It's important to keep speaking directly to them.
Encourage those close to the patient to do what's best for the dying person. Spending time with the patient and helping to care for them can bring people comfort after the death and help them in their bereavement.
Some people will prefer to come and go and others will want to be there all the time. Reassure them that it's OK for the dying person to spend some time alone. Involving children and young people in the patient's care can help them understand what's happening.
Communicating while wearing personal protective equipment (PPE)
Wearing personal protective equipment (PPE) can make it harder to communicate and some patients may find it frightening. You can reassure patients and the people important to them by:
- warning them in advance that you'll be wearing PPE
- explaining why you need to wear it
- wearing a name badge
- showing them a photo or video of yourself without PPE
- showing your face through the window before putting on PPE and going inside
- telling them what you're thinking or feeling if it's not clear when you're wearing PPE.
You may need to talk to a patient's family or friends by telephone or video call if they're unable to visit. You could show them our information booklets and website to help them understand what's happening.
Supporting patients to make decisions about their care
Keep the dying person at the centre of every decision. This will help you meet their needs and preferences as much as possible.
Find out how much the patient wants to be involved in making decisions about their care. Ask if they would like someone else with them at any important conversations with health and social care professionals.
Some patients may lose their ability to make decisions about their care. Find out more about mental capacity and making care decisions.
Find out if they have recorded any treatment choices in an advance care plan. They may have legally nominated someone to make health and care decisions on their behalf. This is called a Lasting Power of Attorney for health and welfare in England and Wales or a Welfare Power of Attorney in Scotland. There is currently no equivalent in Northern Ireland.
Some patients may have recorded their wishes using a Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) form. This summarises how they would like to be cared for in an emergency, including whether they would like to be resuscitated. The ReSPECT process is currently being rolled out across the UK. Find out more about the ReSPECT process.
The patient may want to refuse certain treatments in specific circumstances. They may record this in an Advance Decision to Refuse Treatment (ADRT). This is sometimes called a living will. In Scotland, it's called an Advance Directive.
Talk to the person and their representative, if they have one, in a sensitive, open and honest way about what's important to them in their last days of life. Ask them about:
- their personal hopes and wishes
- their preferred place to die
- people to see or say goodbye to
- resolving conflict or other unfinished business
- organising care for children, other dependents and pets
- any treatments they do or don't want
- any cultural, religious, social or spiritual practices that are important to them
- preferences for what happens to their body after death.
If you don't feel comfortable having these conversations, ask an experienced colleague or the patient's GP or specialist nurse to help.
Hydration and nutrition
People often become less interested in food and drink in their last few days. Support the patient to eat and drink if they want to and are able to. Find out what foods they like and offer them small portions.
Those around the patient might worry if they're not eating or drinking. Reassure them that it's best to be guided by the patient at this stage. People often don't feel hungry and they don't need much to drink in the last few days. Too much food and fluid can make them feel uncomfortable.
Continue to provide mouth care to keep the patient's mouth and lips moist and comfortable. This is something those around the patient may like to help with. Look out for any mouth problems that could cause pain or affect eating or drinking. If you have any concerns, speak to their GP, district nurse, specialist nurse or speech and language therapist. They might suggest other ways to keep the person hydrated and comfortable.
Bowel movements may become less frequent and urine might be more concentrated. The person may not have control over when they have a bowel movement (faecal incontinence) or pass urine (urinary incontinence) and may need help with keeping clean and dry.
Managing symptoms
Common symptoms in the last days of life include:
- pain
- nausea and vomiting
- breathlessness
- delirium
- agitation
- noisy chest secretions.
Speak to the person’s GP, specialist nurse or district nurse if they're in discomfort and you think they need more help to manage their symptoms.
Medication
The GP or specialist nurse will review the patient's medication, taking into account the patient's needs and preferences. They may stop:
- medicines the patient can no longer manage to take
- medicines which aren't essential at the end of life
- medicines the patient has been taking for a long time to manage conditions like diabetes and high blood pressure
- routine observations that are no longer needed, like blood pressure checks.
The GP or specialist nurse will discuss the patient's medication with them and may prescribe medicines to help manage their symptoms and make them comfortable. If the patient is unable to swallow medicines, they may take some medicines via skin patches, injections or a syringe pump.
Speak to the person's GP, specialist nurse or district nurse if you have any worries about how someone is taking their medicine. For example if someone isn't taking their medicine or they're getting unwanted side effects.
Anticipatory prescribing
Anticipatory prescribing is when a GP, specialist doctor or specialist nurse prescribes medicines that a patient may need if their health worsens and they can no longer swallow medicines. These medicines are usually given as an injection or through a syringe pump. They can be kept at the patient's home or in their nursing or care home in case they're needed. They are often called 'Just in Case' medicines or end of life medicines.
These medicines are prescribed in advance so there's no delay in giving them to the patient. The patient can have them as soon as any symptoms appear.
Anticipatory medicines are used to treat symptoms that are common in the last days of life, such as pain, nausea and vomiting, breathlessness, agitation and noisy chest secretions.
You should know where anticipatory medicines are kept and what to do if they're needed. If you are the health care professional responsible for administering them, make sure you know in advance how they should be given. If it's not within your role to give medicines, know who to call if you think the patient might need them.
Looking after yourself
Caring for someone who's dying can be emotionally demanding. It's important to be aware of your own feelings. You may have built a bond with the person you've been caring for. Sometimes a person's death can remind you of experiences from your personal life and make you think more about death.
You may feel sad or tearful when someone is approaching death, especially if you have got to know them well. It's OK to show how you feel but try to remain professional around the person and those close to them, and respect their feelings.
You may find this particularly difficult during the coronavirus pandemic. The NHS has developed services to offer support to health and social care staff during this time. You can find links to the NHS websites for each nation at the bottom of this page.
If you need any extra support, speak to a colleague, your line manager or your GP.
When to ask for help
Ask for help from another health and social care professional such as the patient's GP, district nurse or specialist nurse if:
- you don't feel comfortable having important conversations about dying with the patient and their family
- you have any concerns that the patient's symptoms aren't being managed
- you think the patient needs anticipatory medicines
- you feel upset about the person dying and need some emotional support.
Useful resources
- e-Learning for Healthcare – End of Life Care e-learning
- Department of Health – A palliative and end of life care strategy for adults in Northern Ireland
- gov.scot – Caring for people in the last days and hours of life in Scotland
- National Institute of Health and Social Care Excellence – Caring for dying adults in the last days of life
- National Institute of Health and Social Care Excellence – Palliative care: the terminal phase
- Leadership Alliance for the care of dying people – Report on improving people's experience of care in the last few days and hours of life in England (PDF)
- Royal College of Nursing – End of Life Care: Fundamentals of nursing care at the end of life
- Scottish Palliative Care Guidelines – End of Life Care
Find support and wellbeing for staff working in NHS health or social care in your area: