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End of life planning

When someone is nearing the end of life they may want to consider and plan how they will be looked after at this time.

This may include advance care planning or thinking about moving into a hospice.

Advance care planning

During these uncertain times, you may be thinking ahead and wondering what decisions you will be faced with. There are steps you can take to ensure loved ones' wishes are put first and this can be done through an advance care plan – a statement that sets out the wishes of someone's future care.

It’s vital that someone’s advance care plan reflects their wishes. Medical or social care professionals should never apply advance care plans to people based on their medical condition or mental capacity, for example.

During the pandemic, the person you care for may wish to include their treatment preferences in their advance care plan should they develop COVID-19 symptoms.

What does an advance care plan involve?

If the person you are looking after is nearing the end of their life and the expectation is that their condition will deteriorate and they may lose capacity to make decisions about their care, they should be offered advance care planning. This means they can record their wishes around the end of life care they will receive.

This is a voluntary process and the advance care plan (sometimes called a statement of wishes) can be used to record care and treatment wishes. It should be attached to the medical notes and should also be easily accessible to those who are involved in looking after the person.

The advance care plan can include:

  • where they want to be cared for when they are dying
  • where they want to die
  • who they want to be with them
  • values such as religious beliefs
  • routines that are important to them
  • anything that helps them feel safe and comfortable

Through this planning, the person you are looking after can also make an Advance Statement and/or Advance Decision about the treatment they wish or do not wish to receive (this is called an Advance Directive in Scotland). Compassion in Dying can provide the forms for each as part of a free information package:

There are some legal differences depending on if the person you are looking after lives in England, Wales, Scotland or Northern Ireland – the charity Compassion in Dying contains comprehensive information on advance planning for all nations.

  • If you live in England or Wales you can see further information here.
  • If you live in Scotland you can see further information here.
  • If you live in Northern Ireland you can see further information here.

If the person you are looking after wishes for others to make decisions about their care and treatment, they can instead (or also) take steps to grant someone this authority. For further information see our section on managing someone’s affairs.

If none of the above measures are in place, decisions about care and treatment for the person you are looking after will be made in their ‘best interests’ by medical and/or social care professionals. Family and carers should be involved in this process.

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Moving into a hospice

If the person you are looking after is nearing the end of their life, it may be recommended that they move to a hospice. They may move into a hospice from their home or from a residential care home or hospital.

The end of life palliative care that people receive at a hospice is for those whose illness may no longer be curable, but for whom a hospital stay is not necessary.

A hospice can offer a wide range of supportive care that focuses not just on medical needs but on emotional wellbeing and support as well, both for the person being looked after, and for family members and carers.

End of life palliative care services include:

  • skilled medical and nursing care, including pain and symptom control
  • counselling
  • complementary therapies
  • practical advice
  • spiritual/religious support
  • creative activities
  • physiotherapy
  • bereavement support

The hospice will aim to provide a welcoming, informal, warm and supportive environment to visitors. There are normally no set visiting times for family members and friends, although this may have changed during the COVID-19 pandemic – ask the hospice about this.

People are usually referred to a hospice by their GP, hospital doctor or nurse.

Time spent at a hospice and the services they provide are given free of charge.

If the person you are looking after moves to a hospice, their Disability Living Allowance (DLA), Personal Independence Payment (PIP) or Attendance Allowance can continue to be paid in full. This is as long as the DWP are informed in writing that the person you are looking after is terminally ill. If you receive Carer’s Allowance then this should also continue to be paid if you still meet all of the eligibility conditions.

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