Prepare for a good end of life

Thinking about death is frightening, but planning ahead is practical and leaves more room for peace of mind in our final days. In a solemn, thoughtful talk, Judy MacDonald Johnston shares 5 practices for planning for a good end of life.

Watch the TED Talk video with Judy MacDonald Johnston

One Chance to Get It Right

Policy documents

The following resource provides links to relevant policies from the four countries.

End of life policies

Palliative and end of life care Priority Setting Partnership

The Palliative and end of life care Priority Setting Partnership (PeolcPSP) aimed to address the dearth of evidence in palliative and end of life care and help research funders to direct scarce resources to the unanswered questions around treatment, care and support most important to the ‘end users’ of research: patients, current and bereaved carers and families, clinicians, and health and social care practitioners, plus members of the community, such as volunteers with experience of end of life care.

The following top 10 research priorities were announced on 15th January 2014:

  • What are the best ways of providing palliative care outside of working hours to avoid crises and help patients to stay in their place of choice? This includes symptom management, counselling and advice, GP visits and 24-hour support, for patients, carers and families.
  • How can access to palliative care services be improved for everyone regardless of where they are in the UK?
  • What are the benefits of Advance Care Planning and other approaches to listening to and incorporating patients’ preferences? Who should implement this and when?
  • What information and training do carers and families need to provide the best care for their loved one who is dying, including training for giving medicines at home?
  • How can it be ensured that staff, including healthcare assistants, are adequately trained to deliver palliative care, no matter where the care is being delivered? Does increasing the number of staff increase the quality of care provided in all settings? To what extent does funding affect these issues?
  • What are the best ways to determine a person’s palliative care needs, then initiate and deliver this care for patients with non-cancer diseases (such as chronic obstructive pulmonary disease (COPD), heart failure, motor neurone disease (MND), AIDS, multiple sclerosis, Crohn’s disease, Parkinson’s disease, dementia, and stroke)?
  • What are the core palliative care services that should be provided no matter what the patients’ diagnoses are?
  • What are the benefits, and best ways, of providing care in the patient’s home and how can home care be maintained as long as possible? Does good coordination of services affect this?
  • What are the best ways to make sure there is continuity for patients at the end of life, in terms of the staff that they have contact with, and does this improve quality of palliative care? Would having a designated case coordinator improve this process?
  • What are the best ways to assess and treat pain and discomfort in people at the end of life with communication and/or cognitive difficulties, perhaps due to motor neurone disease (MND), dementia, Parkinson’s disease, brain tumour (including glioblastoma) or head and neck cancer, for example?

You may find the following related links of interest:

Living and Dying Well: Building on Progress – NHS Scotland

Shaping Bereavement Care – The Scottish Government

A Review of the Liverpool Care Pathway – Independent Review of the Liverpool Care Pathway

One Chance to Get It Right – Leadership Alliance for the Care of Dying People

Caring for people in the last days and hours of life – NHS Scotland

Bereavement Care Service Standards – Bereavement Services Association

Palliative and end of life care Priority Setting Partnership – Palliative and end of life care Priority Setting Partnership

Nutrition support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition – National Institute for Health and Clinical Excellence

Care of dying adults in the last days of life – National Institute for Health and Clinical Excellence

NHS Improving Quality – Improvement program, end of life care

National Council for Palliative Care – Useful resources for patients and staff

Ambitions for Palliative and End of Life Care – A national framework for local action

Department of Health Choice in end of life care

The Dying Matters Coalition

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