Palliative Care: From Diagnosis To Death

The Primary Palliative Care Research Group at the University of Edinburgh have produced a series of videos for people living with declining health and the friends, family members and professionals caring for them.

Early Palliative Care: a video for health and care professionals

This short video aims to help health and care professionals to identify people who are living with progressive illnesses better, to assess their needs in a timely manner and to start discussing and planning future care with them.

Early palliative care improves life’s quality, and in some cases may even prolong life. It promotes realistic medicine, an approach which puts the person receiving health and care at the centre of decision-making.

 

Clinicians, patients and families can all benefit from carefully integrating early palliative care with on-going treatment, so people can both live and die well.

The information in this video is based on detailed research with patients, families, doctors, nurses and other health and care professionals about people’s experiences living with declining health and dying. ‘Palliative Care from Diagnosis to Death‘ was published in February 2017 in the BMJ.

Key points:

  • Identify people early and introduce early, integrated palliative care
  • Consider patients’ different dimensions of need at present, and discuss what matters most to them
  • Discuss what happens in the different illness trajectories so they know when they might need the most help
  • Make an individual anticipatory care plan with patients and families; document, communicate and review this regularly with all involved

There are accompanying notes and suggested discussion questions available here for anyone using the video for teaching purposes.

How to Live and Die Well: a video for the public, patients and family carers

This short video is for everyone. It’s for people who are well just now, but may get a serious illness or life-threatening condition in the future. For people who currently live with progressive illness. It’s also for family members and carers of those who are ill or may become ill, and who want to learn what can happen in the future so they can plan ahead.

How to Live and Die Well a video for the public, patients and family carers

The full video, as well as guidance notes and useful links is available here.

There is an extended version for facilitated group viewing and discussion available here.

Strictly Come Dying

This video discusses the different illness trajectories as though each were a dance with a particular tempo and complexity. Just as knowing the dance will help someone dance well, understanding typical physical and emotional sequences of various illnesses help people live and die well.

Strictly Come Dying.PNG

Our research group in Edinburgh has studied the last year of life in people dying of various illnesses. We found that people dying  from different diseases experience dying differently, as each disease trajectory involves different experiences, needs, ups and downs.

Further reading: Palliative Care: From Diagnosis to Death

 

 

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Anticipatory Care Planning Stories

We commissioned a series of films to introduce anticipatory care planning, how it can help to deliver person-centred care, and its benefits for people, families and their carers.

If you want to know more about anticipatory care planning or the making of these stories you can email Sheila Steel, Associate Improvement Advisor for ACP or follow her on twitter @SheilaSteel2.


A homeless person’s story – Duncan is 41 and has been in children’s homes, hostels, psychiatric care or homeless for most of his life.


A child’s story – Jack has a life-limiting condition. His parents have been told it is unlikely he’ll get to school age.


A carer’s story – Fiona was caring for her husband with cancer until he died. Now she is caring for her father alone.


An individuals story – Jim is in his fifties and is in the late stages of kidney failure caused by diabetes. His condition is terminal.


An ACP nurse’s story – Evelyn was admitted to hospital for the fourth time and diagnosed with Menieres diease. She is focussed on her illness rather than her recovery.

Find out more about Anticipatory Care Planning at myacp.scot