National Voices and the National Council for Palliative Care have partnered with NHS England to produce new guidance for care at the end of life called Every Moment Counts, to which Compassion in Dying contributed.

This guidance brings together the perspectives of patients, carers, healthcare professionals and related charities to shape and improve the experiences of those who need care at the end of their lives. Our input has meant there is a strong focus on planning ahead, such as writing an Advance Decision or appointing a Lasting Power of Attorney for Health and Welfare. This balanced and informed narrative will be a valuable tool in assessing the quality of end-of-life care in the coming years.

The narrative is unique in that it concentrates on the successes and challenges of current palliative care in England as identified by the people who actually need and receive that care. It has a strong focus on individual choice and independence and ensuring that carers are included and supported alongside the patient, reflected in this summary sentence:

I can make the last stage of my life as good as possible because everyone works together confidently, honestly and consistently to help me and the people who are important to me, including my carer(s).

Five key ‘domains’ are identified as very important.

  1. A special effort is made to understand my goals and the quality of my life and death. I should not be defined by my illness. I should be supported to live an active and independent life as far as possible, for as long as possible.
  2. Healthcare professionals have honest discussions with me about my health and prognosis, and I am given the chance to plan ahead. (There are a number of ways you can do this, and Compassion in Dying can help provide you with more information).
  3. People who are important to me are around me, welcomed and made to feel ‘part of the team’ and included in discussions about my care as far as I want them to be. They are also given advice and support as my health deteriorates and after I have died.
  4. My physical, emotional, spiritual and practical needs are met, and I am given information, care and support to make sure I die ‘at peace’ with any beliefs I may hold.
  5. I have responsive and timely support day and night, irrespective of where I am being cared for (i.e. at home or in a hospice), to ensure my needs are met.

There are a number of ways you can plan ahead to make sure your wishes for treatment and care are followed by healthcare professionals. You can refuse specific medical treatments in an Advance Decision, or appoint a Lasting Power of Attorney for Health and Welfare to make health decisions on your behalf if you were ever unable to make them yourself. You can also record any instructions about how you would like to be cared for in an Advance Statement. You can contact us for more information by calling our Information Line on 0800 999 2434 (Freephone from UK landlines) or email us at info@compassionindying.org.uk