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What to Expect from End of Life Care
As someone becomes more unwell, the focus of their care may change.
Treatments or procedures which are no longer helping may be reviewed, while managing symptoms, maintaining comfort and supporting the person's wishes become increasingly important.
Good end of life care is individual. The person should be involved in decisions for as long as they are able, and the people caring for them should explain what is happening and what can be done if symptoms or circumstances change.
Managing Pain
One of the main aims of palliative and end of life care is to prevent or relieve distressing symptoms.
These may include pain, breathlessness, nausea, anxiety, constipation, agitation or other symptoms associated with the person's illness.
Not everyone who is dying experiences severe pain, and many symptoms can be treated or reduced.
Tell the healthcare team if the person develops a new symptom, an existing symptom becomes worse, or you think they are uncomfortable. This remains important even when they are no longer able to explain clearly how they feel.
Specialist palliative care teams can advise when symptoms are complex or difficult to control. Locally, the Integrated Community Specialist Palliative Care service particularly supports people with complex pain and symptom-management needs.
Medicines in Last Days
The person's medicines will usually be reviewed as their condition changes.
Some medicines that were useful earlier in an illness may no longer provide a benefit, while other medicines may be needed to keep the person comfortable.
If swallowing tablets becomes difficult, medicines can often be given in another way. The healthcare team will decide what is appropriate for the individual.
You may hear healthcare professionals refer to medicines being prescribed "in anticipation". This means that suitable medicines are available if certain symptoms develop, rather than having to wait for a new prescription at a difficult time.
Never change or stop prescribed medicines yourself without advice from the person's healthcare team.
Eating, Drinking and Mouth Care
It is normal for appetite and thirst to reduce as someone approaches death.
Family members sometimes worry that they should encourage or persuade the person to eat. In the final days, however, the body needs less food and the person may no longer want it or may find swallowing difficult.
Offer food and drink if they want it and can manage it safely, but do not force them.
Good mouth care can be particularly important. Helping someone keep their mouth and lips clean and moist can provide considerable comfort even when they are no longer drinking much.
Ask the nursing team to show you what is safe and appropriate if you are unsure.
Personal Care and Comfort
As someone becomes weaker, they may need more help with washing, dressing, toileting, repositioning and other personal care.
Family members may want to provide some of this care, but there is no expectation that they should do everything.
Some tasks may feel too intimate, difficult or physically demanding. It is reasonable to ask nurses, healthcare assistants or paid carers for help where care services are available.
Simple things can also make a significant difference to comfort: a comfortable position, clean bedding, a quiet room, familiar music, gentle lighting, favourite possessions and having people nearby when the person wants company.
Ask the healthcare team for advice about moving or repositioning someone safely rather than trying to manage something you are not confident doing.
Emotional and Spiritual Support
Approaching death can bring many emotions, including fear, sadness, anger, acceptance, anxiety and concern about the people who will be left behind.
Some people want to talk openly about dying. Others do not. Try to follow the person's lead rather than assuming what they need to discuss.
They may want to talk about family, memories, practical concerns, unfinished business or simply ordinary everyday things.
For some people, faith or spirituality is an important source of comfort. Others may want help thinking about meaning, relationships or what matters to them without having any religious belief.
Hospice and hospital chaplaincy teams and local faith communities can provide support, but spiritual care does not have to be religious.
Planning for the Unexpected
Even when someone's illness is progressing as expected, things can sometimes change quickly. Planning ahead can make it easier to know what to do and who to contact if the person's condition changes, particularly at night, at weekends or when their usual healthcare team is unavailable.
Ask the doctor, nurse or care team what changes you might expect, which symptoms should prompt a phone call and who you should contact outside normal working hours. Keep important telephone numbers somewhere easy to find and make sure other family members or carers know where they are.
It can also help to discuss what should happen if the person becomes suddenly more unwell. They may already have an Advance Care Plan or ReSPECT plan recording their wishes and clinical recommendations for an emergency, including whether hospital treatment would be appropriate in particular circumstances.
If the person is being cared for at home, their healthcare team may arrange medicines in advance so that common symptoms can be treated promptly if they develop. They can also explain what equipment, nursing support or additional care may be available if the person's needs increase.
Plans may need to change. Someone who hoped to remain at home may later need more support than can safely be provided there, or their symptoms may become easier to manage in a hospice, care home or hospital. Changing the plan does not mean that anyone has failed. The priority is to keep the person safe, comfortable and cared for in a way that reflects their wishes as far as possible.
If something happens that you were not expecting, or you are unsure what to do, contact the person's healthcare team for advice. If you believe there is an immediate medical emergency and you have not been given alternative instructions as part of their care plan, seek urgent medical help.
