Whats in this section?

Whats in this section?

What is end of life care?

End of life care refers to caring for people with a terminal illness. It consists of the support they receive through their final months or years of life, including palliative care.

The purpose of end of life care is to support those with terminal conditions to be as comfortable as possible during their remaining time. Ideally, this should allow them to die with dignity. It also includes support for their family or carers.

Dying is often painful to contemplate, and as a society, we do not discuss death and dying openly. The way care professionals approach the process is incredibly important for the individual, their family and carers.

‘How we care for the dying is an indicator of how we care for all sick and vulnerable people. It is a measure of society as a whole and it is a litmus test for health and social care services.’

Those being cared for should have the opportunity to discuss their needs and preferences with the professionals who will be supporting them. These should be recorded in an Advance Care Plan so that every supporting service is aware of the client’s wishes.

The Department of Health has a strategy for every organisation involved in providing end of life care. Organisations involved in its provision must by law adopt an overall co-ordination process for this, such as the Gold Standards Framework.

When is end of life care appropriate?

End of life care is suggested when people are diagnosed by a healthcare professional as being likely to die within the next 12 months, although this isn’t always possible to predict.

This includes people whose death is imminent, as well as people who:

  • Have an advanced terminal illness, such as cancer, dementia or motor neurone disease
  • Are generally frail and have multiple late-stage or incurable conditions
  • Have existing conditions if they are at risk of dying from a sudden crisis in their condition
  • Have a life-threatening condition caused by a serious event, such as an accident or stroke

Palliative Care

If you have an incurable illness, palliative care is there to make you as comfortable as possible, by managing your pain and other distressing symptoms.

Palliative care is called a holistic approach because it deals with you as a “whole” person, not just your illness or symptoms. As a result, it takes into account psychological, social and spiritual support for you and your family or carers.

Programmes available

The Gold Standards Framework (GSF)

This is used to improve the coordination and communication between different organisations involved in providing end of life care. For instance, between hospitals, primary care and care homes.

‘Preferred Priorities for Care’ (PPC)

This document is an example of an Advance Statement. PPC’s are designed to help people prepare for the future by giving them an opportunity to think about, discuss and write down their preferences and priorities for end of life care.

Who provides end of life care

Different types of healthcare professionals may be involved in the provision of end of life care, including:

  • Doctors
  • Nurses
  • GP’s
  • Hospice staff
  • Community nurses
  • Counsellors
  • Social care staff
  • Physiotherapists
  • Occupational therapists
  • Complementary therapists

If you are being cared for at home or in a care home, your GP has overall responsibility for your care. In addition, community nurses will usually visit you if you are being cared for at home.

Finding end of life care

It is worthwhile asking potential care providers about their approach to end of life care. Many of them may be following national strategies for implementing best practice within their home.

You can also talk to your GP regarding end of life and palliative care. Alternatively, if you are searching for this following an appointment with a healthcare professional they should have provided you with information on people or organisations you can contact.

If you are looking for end-of-life care options, you can find care homes and homecare providers offering palliative care here.

Planning ahead

Why plan ahead

Planning ahead can help you receive the care you want, and make things easier for your partner and family when you are nearing the end of life.

When planning for the end of life, there are important considerations and although talking about death may not be easy, it is important so that people have control over the process.

How can I plan ahead

You will need to think about:

  • Making a will
  • Planning and sharing funeral wishes
  • Preferences for care and support, including preferred places to die
  • Creating lasting power of attorney documents to cover financial or healthcare decisions, or both
  • Making a decision on organ donation
  • Thinking about ‘Digital Legacy’ and access to online accounts
  • Sharing wishes with partners and close relatives

What next?

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