initiating compassionate conversations on end of life care · may not • 54% of complaints in...

www.ncpc.org.uk www.dyingmatters.org

Initiating Compassionate

Conversations on End of Life

Care

Claire Whittle

Associate Dean – HEFT Faculty of Education

Compassionate Care -

Some of the Challenges

• We don’t talk about dying and death - impacting on our end of life choices

• Only 29% of people talked about their wishes in 2009 - less than in 2006 (34%)

Talking

• Around 500,000 people die each year in England – 53 % in hospitals, yet around70% of people would like to die at home

Planning


Some Facts

• Around 4,000 deaths in HEFT each year

• Some patients receive excellent care, others may not

• 54% of complaints in acute hospitals relate to care of the dying / bereavement care (Healthcare Commission 2007)


Background

• Francis Report and Negative Press about

– nursing – esp. care of the elderly, end of life

care and dementia in hospitals

– Liverpool Care Pathway: ‘death pathway’,

perceptions of treatment being withdrawn,

poor end of life care and hastening of a

person’s death

• Trust Complaints about end of life, death and

bereavement are relatively few, BUT impact of

the end of life experience on carers is enormous


Background (2)

• Complaints involve: perceived poor care, poor

communication, uncaring attitudes and behaviours from

staff.

• Informal feedback via bereavement questionnaires

and discussions with carers also highlighted aspects of

poor care.

• End of life care in HEFT is measured as part of a

CQUIN and failure to reach satisfactory levels impacts

on reputation and finances

• Chief Nurse’s 6 C’s highlight Compassion& Care as a

fundamental element of the care nurses should provide

What are we doing about it?

Dying Matters and Macmillan collaboration – developed GP workshops - pilots showed a change in their self-reported confidence in both initiating and having conversations about end of life between the pre and post pilot phase

This is contributing to good deaths and more

choices met The training is now being rolled out across the

country

Continuing the conversation

How patients responded: 178 chose to continue the conversation 21 rejected the conversation

9/10 Nine times out of ten, patients will continue the conversation about end of life “My experience has been that the majority of the patients with

whom I have had these conversations have been relieved and appreciative. Only very occasionally (perhaps 1 in 10 times) did patient not wish to discuss the prospect of deteriorating health

and increasing care needs and implications of this”

What are we doing?

Taking the learning from GP pilots and in care homes and adapting for nurses in HEFT

First pilot workshop took place in March follow up evaluation period putting into practice

12 participants, mix of ward managers, clinical

nurse specialists, one consultant in specialist palliative care, community managers


Methods and content

• Interactive, participative and reflective

• Use of real patient stories (Simone’s story) and

training DVDs

• Looking at

– Blocks: what stops us having conversations about the

end of life in our day to day work?

– Cues and clues: what prompts us to have

conversations about end of life in our day to day work

• Tips from experienced practitioners

• Skills practice in safe environment

• Audit of practice following workshop

• Pre and Post workshop confidence

questionnaire

• Reflective practice using Gibb’s

reflective practice framework

• Using participants to shape roll out

of training across Trust

Pilot Evaluation

(in progress)


Low-cost confidence

building inventions

can make a significant

difference

www.dyingmatters.org

What to do.....?

• Example: Dying Matters GP pilot project

• Before intervention 45% GPs rated themselves as unconfident in end of life conversations, at end 94% either “confident” or “very confident”


Pre-workshop

confidence

• 33 % not confident

in initiating end of

life conversations

• 42 % not confident

in having end of life

conversations

If we/I knew how to initiate difficult conversations better we might be able to offer a

far better quality of life for the patients remaining time and a much better

understanding for the relatives to prepare and cope with the inevitable.

I am afraid I might: “Open a can of worms and not be able to deal with the consequences” “Upset the patient or family” “Not have enough time” “Not know how to close down and end the conversation”


Post-workshop

confidence

• 90% felt more

confident after the

workshops

• 80% felt their

practice would

change as a

consequence

“I will take information back to team and feed into planned training

events and workshops with community teams. Thank you!“

“This session gives time and thought to a difficult area of care. It gives more confidence in the difficult times.”


Post-workshop

feedback

• “I wonder if the training time could be a whole day with time for

reflection and personal experienced. I'm sure the workshop will

prove an excellent opportunity to shape future care an caring

provision. Thank you.”

• “It has been good to listen to the cues and how we may block or

deflect because we don't want to get into the conversation

because we may not have the answers.”

• “The content was intense but I think it would be valuable for

everyone to have at least part of this training if not all.

Thank you very much.”


Future workshops

• To be included into existing programmes of study.

• Stand alone workshops to run throughout the year.

• Workshop for Ward Sisters planned for July 2013.

If you are interested in attending contact me via

[email protected]

mailto:[email protected]

initiating compassionate conversations on end of life care · may not • 54% of complaints in...

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