Getting the most out of hospice care

Good care means that you are at the centre of decisions about your care.

care support programs

Good care is about feeling able to talk to the people who are looking after you about what matters to you so that you can create a care plan together that is personalised to you. It’s also about making sure you have the information you need to make those choices about your care, and that you have opportunity to involve your family or those important to you as much as they wish.

You do not need to face your concerns alone

As someone who needs care, or as a carer, you should expect the staff to ask you about your needs and to do their best to get you the care and support to meet those needs, or direct you to other people or organisations that can help.

The way care is provided at evenings, weekends and on Bank Holidays varies depending on the area in which you live. For example, support and care services might include a 24-hour telephone helpline or night-sitting service. In particular, it's helpful to know what information you should be ready to provide over the phone. This might include: 

  • What stage you or the person you are caring for is at in their illness (or what you have been told about this);
  • What medication you or they have recently taken;
  • When you or they were last seen by a doctor or nurse;
  • Whether you or they have an advance care plan and had made prior decisions about treatment, or future admission to hospital.

Advance care planning

For more information about advance care planning, see our booklet: ‘Planning for your future care: a guide’. The booklet also includes information about making a Lasting Power of Attorney in England and Wales. Download the booklet from the Dying Matters website

More resources

Sometimes it can be difficult to start a conversation about what is important to you and what the future might bring. Our booklet, ‘One last thing…’ has tips on getting a conversation started and subjects that you might want to talk about with those close to you.

Our booklet ‘Time to talk’ also has advice on talking to people living with dementia about end of life care.

You can download both booklets at from the Dying Matters website

I’d like to know more

The organisations and resources listed below can help you find out more about planning for end of life and hospice and palliative care.

Dying Matters

Dying Matters aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. They present useful information on subjects including making plans, writing wills, bereavement, talking to children about death and avoiding misconceptions about dying. All the leaflets are freely available to download and print from their website.

Care for children and young people

Together for Short Lives is a UK-wide charity that speaks out for all children and young people who are expected to have short lives. The Together for Short Lives Charter sets out what families should expect to receive from their local children’s palliative care services in terms of information and support.

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