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Palliative Care and End Of Life Learning

 Welcome to the Palliative and End of Life Care Learning Resource

 

 

 

 You will find this page full of various informative resources , videos and information in relation to Palliative and End Of Life Care.

We will look at  key areas e.g. 'What do we mean by Palliative and End of Life Care?', 'Who needs Palliative Care' The importance of Communication and Conversations' and 'Loss, grief and bereavement'.    

 

                

 

 

What do we mean by Palliative Care

In life limiting illness, holistic, person centred care, quality of life, dignity ,choice, comfort, families , multi professional team approach etc

 

Palliative  care– from point of diagnosis onwards.  This can be over several years or for shorter periods depending on the illness

 End of life – usually refers to the last year of life

 

The World Health  Organisation Definition of Palliative Care states...

Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness,  through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

  (WHO, 2017)           

 

 

Please watch this short film on Palliative Care called 'You are a BRIDGE'


 

 

 Who is Palliative Care for, and when is someone deemed as needing  Palliative Care? 

You can receive palliative care at any stage in your illness.  Having palliative care doesn't necessarily mean that you are likely to die soon, some people receive palliative care for years.   You can also have palliative care alongside treatments, therapies and medicines aimed at controlling your illness, such as chemotherapy.

However , palliative care does include caring for people who are nearing the end of life, this is sometimes called 'end of life care"

 (Marie Curie Organisation 2021)

 

 

Please watch this short video from Marie Curie called 'Paola's story called' Having palliative care'

 

 

Please watch this short video made by Scott Murray in relation to Early Palliative Care.      

 

 

 

 

 Why Communication and Conversations matter in Palliative and End of Life Care 

 Communication when supporting people to have conversations in relation to a palliative or end of life diagnosis is essential to support them engage in what is happening.

Being able to have open, honest and sensitive conversation can be challenging, however we need to have these to support people understand their situation, feelings and expectations.      

 

 

 

#hello my name is ......

Dr Kate Granger started the 'hello my name is' campaign in August 2013.  As an inpatient with terminal cancer she was frustrated by how many care staff failed to introduce themselves to her.

Her campaign asked frontline NHS Staff to introduce themselves to their patients as it advocates the first step in providing truly person-centred compassionate care and often is all it takes to put patients at ease and make them feel relaxed whilst using services. 

The campaign has been widely promoted throughout a wide range of health and social care settings.  With Health and Social Care workers pledging to introduce themselves to the people they support. 

If you would like more information then please click on the link below  

www.hellomynameis.org.uk

Please watch this video on Dr Kate Granger story #hello my name is...  

 

 

 

 

Please watch this short video from the Social Care Institute of Excellence  in relation to End of life and Palliative care called  'Think about the words we use'

 

 

 

  

What is End of life Care?

"End of life care involves treatment, care and support for people who are nearing the end of their life. Its an important part of palliative care.

It's for people who are thought to be in the last year of life, but this time frame can be difficult to predict.  Some people might only receive end of life care in their last weeks or days.

End of life care aims to helps the person to live as comfortably as possible in the time they have left.  It involves managing physical symptoms and getting emotional support for them, their your family and friends.  They might need more of this type of care towards the end of their life. 

End of life care also involves talking to the person, their family and friends about what to expect towards the end of their life. The people looking after them will talk to the person about their needs and wishes, and make sure they consider what  the person wants in the care they provide. " 

 (Marie Curie Organisation 2021)

                                             

 

 

 

 

 

Please watch this short video from Dr Kathryn Mannix  called 'In my Humble Opinion'

 

     

 

Loss, Grief and Bereavement 

Grief is a natural response to the loss of a loved one. Its the emotional suffering you feel when something or someone you love dies.  Often the the pain of loss can feel overwhelming. You may experience all kinds of difficult and unexpected emotions, from shock or anger to disbelief , guilt and profound sadness.  The pain of grief can also disrupt your physical health, making it difficult to sleep, eat, or even think straight .  These are normal reactions to loss, the more significant the loss the more intense the grief will be.  

  

Bereavement

Why good communication matters.....

"There is a range of evidence (Stephen et al 2006) that the way those who have been bereaved experience the events around the time of death will influence the trajectory of their grief journey. Where health services get it right, showing empathy and providing good quality care, bereaved people are supported to accept the death, and to move into the grieving process as a natural progression. Conversely if the health services get it wrong, then bereaved people may experience additional distress, and that distress will interfere with their successful transition through the grieving process, with implications for them, those around them and for the social economy of the nation."

(Stephen et al, 2006 cited in Shaping Bereavement Care, Consultation on A Framework for Action for Bereavement Care in NHS Scotland, Scottish Government Health Directorate, September 2010)

 

Talking to those who are bereaved

"People who are grieving often recall the words and phrases which are said to them around the end of life, and in bereavement, for a long while after a death.

At some stage, the majority of professionals who work within health and social care will interact with those who are bereaved during the course of their work. Even if it is not a core part of your responsibility to support or work with those who have been bereaved, it is beneficial to have a certain level awareness about bereavement and communicating with those who are grieving."

(NHS Education Scotland) 

To watch short video delivered by  NHS Education for Scotland which aims to help health and social care professionals communicate with families in this situation please click on the link below.

Communication with those who are bereaved | Support Around Death (scot.nhs.uk)

    

Please watch this short video from Dr Susan Delaney from the Irish Hospice on bereavement. 

 

 

Do's and Don'ts of communication who those who are bereaved

Do's

  • Acknowledge their grief
  • Take time to listen - attentively
  • Suggest a quiet place to sit together
  • Use the name of the person who has died
  • Share resources - leaflets and contacts
  • Remember everyone is different

Don'ts

  • Say you know how they feel - you can't
  • Talk about your own experiences
  • Use platitudes like 'time is a great healer'
  • Rush the conversation
  • Promise what you cannot deliver
  • Forget that you need support too

(Do's/ Don'ts produced by NHS Education for Scotland, content developed by Cruse Bereavement Care Scotland, © CBCS 2014)

 

  

"Through Adversity Comes Legacy" by Chris Pointon

Chris Pointon husband of Dr Kate Granger talks about the worldwide social media campaign “hello my name is”  

  

 

 

Palliative and End of Life Resources 

   Here you will find a library full of  informative and in depth links to resources on Palliative and End of Life Care.... 

 

 NHS Inform Palliative Care Pages

Scottish Palliative Care Guidelines

 NHS Inform Palliative Care Supports & Rights

 Scottish Government Strategic Framework for Action on Palliative and End of life Ca

Scottish Government Care Guidance for people in the last days and hours of life

NES Palliative and End of Life Care Enriching and Improving Experience

 Good Life, Good Death, Good Grief

 IHUB Scotland Anticipatory Care Planning Tool Kit

 Hospice UK, St Oswald's Hospice and Together for Short Lives

 Macmillan Cancer Support Learning Zone

 NES Support around death

 Marie Curie Palliative Care Knowledge Zone

 Royal College of Nursing Getting it Right

The Hospice UK Just B Helpline

 

 

 

 

 

 

 

 

 

                                      

 

 

 

 

 

 

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