Questions and concerns about end of life care

How can I make the person more comfortable?

The nurse or doctor can give you advice about this.

They can also help by:

  • arranging an assessment of what equipment the person needs
  • providing equipment for physical care (e.g. mouth care sticks)
  • showing you how to use this equipment

You could talk to an occupational therapist about what equipment the person needs.

A physiotherapist or occupational therapist may also help with the person’s breathing and movement.

The person seems distressed, or is experiencing difficult emotions

You may be concerned because the person you care for is experiencing difficult emotions: they may be feeling angry, scared, guilty or confused.

A chaplain or spiritual care co-ordinator is trained to help people who are experiencing such feelings. They can provide support for the person who is dying and those who are important to them, whether or not they hold a religious belief.

If the person does have religious beliefs, they can also receive a visit from their local faith leader.

A counsellor, social worker or psychologist, as well as a nurse, may also be able to offer support.

The person’s final moments

Particularly in the last few minutes, the person’s face muscles may relax and they may become very pale. Their jaw may drop and their eyes may become less clear.

The person’s breathing will eventually stop. Often, the person’s body will completely relax.

Sometimes it can be difficult to identify the exact moment when the person died. There may be one or two last gasps a minute or so after what seemed like the last breath.

However, you should note down the time as close as possible to the moment they died.

This is always a profound moment, even when death has been expected for days. You may suddenly feel overwhelmed with sadness, you may want to be alone, or you may want to phone family and friends.

By this time you may be exhausted with the caring and the waiting, and the relief and finality of the moment of death can take you by surprise.

More information about support available and what to do after a death is available at the links below:

What to do after a death

Information and advice about bereavement and loss

Where to go for support

Medication

Does the person I am caring for need medication? 

Your GP can give information about this, and prescribe it. If the person is in hospital or a hospice, the doctor looking after them can discuss medication with you.

The pharmacist can also give information about different medications.

The person’s doctor can also suggest using alternative ways of giving the medicine if the person has difficulty swallowing or keeping it down.

Your doctor/ nurse may arrange for you to have extra ‘just in case’ medicines at home so that these can be given if needed.

Pain

The person won’t necessarily be in pain. You can look out for body language which may tell you if they are in pain, such as:

  • wincing
  • flinching
  • clenching their teeth
  • stiffening of the body
  • a scrunched up forehead

The person may moan occasionally but this could be just an involuntary sound or caused by a change in breathing rather than because they’re in pain.

You can help by letting the doctor or nurse know as they will be able to check the person and give extra medication to help if needed.

If the person had been taking pain medication, usually this will need to be continued. If they cannot swallow, they may need this to be given by injection, possibly using a small, battery operated machine called a syringe pump.

Vomiting

How can I help? Who else can help?

The doctor or nurse may be able to give some anti-sickness (or ‘anti-emetic’) medication.

Sometimes these medications may have to be given as injections under the skin, often using a small, battery operated machine called a syringe pump.

You can also:

  • apply a cool, damp cloth to the person’s forehead
  • avoid strong smells, such as air freshener, aftershave/perfume, or smells from cooking
  • give the person smaller amounts of food rather than large meals

Last updated:
11 December 2020

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