Your Conversation What do you want to say ?

(Are you able to express it ?)

(Are we able to listen ?)

Dr Brendan O’ Shea Lecturer in Public Health and Primary Care TCD

Good End of Life Planning……..

When does it happen ?

Where ?

What would it look like ?

Does it happen consistently ?

Why we don’t Think Ahead

• Cultural / Societal • Avoidance • Busyness • Fragmented Care • Legal uncertainties – fear of men in black ! • End of Life Care is not a professional value.... • Professional inexperience / unease

Don’t know when to....procrastination

Why do we need to Think Ahead ?

• Avoid additional uncertainties

• Reduce costs

• Alleviate suffering

• It often feels good to !

When....How to...Where to....

When to Think Ahead ?

• Today !

• At 50 years of age

• At 6-8 weeks after a new/significant diagnosis

• Over 65’s – perhaps biannually

• On admission to a Nursing Home

Many right answers

Two wrong ones.... ‘Never’ and ‘Later’

When to Think Ahead ?

Shift the conversation from Acutely unwell / Pre arrest / Ventilated patient to several years earlier..... ……in the Community The conversations work best for a clinically stable, autonomous patient

Why else to Think Ahead ?

• The Assisted (Capacity) Decisions 2013 Bill

Increasing interest in the community…

Becoming more culturally acceptable…

Think Ahead

Presenting it to patients….

Are we ready to ‘Think Ahead’ ? Acceptability study using an innovative end of life planning tool.

O Shea B, Brennan B, Martin D, Bailey O, McElwee O, Darker C, 2014, IMJ Vol 107, No 5.

N=100 stable patients, aged 40 to 70 yrs, in the General Practice Setting

Was ‘Think Ahead’ difficult to understand ?

• 63% reported ‘no difficulty’ in filling in the folder.

– Areas that caused difficulty for some were “Care

Preferences”. “I don’t understand the issues around CPR and

ventilation”.

– Some difficulty completing parts of the document in the “Legal” and “Key Information” sections.

Should ‘Think Ahead’ be changed ? NO - 83.7%

• Suggestions for additional information

– People or groups that should be contacted at the time of a person’s death ?

– How often the Think Ahead document should be reviewed ?

– Church or religious organisations to be notified ?

Should ‘Think Ahead’ be introduced more widely?

Has reading ‘Think Ahead’ caused you to discuss it with your family?

Was ‘Think Ahead’ upsetting ?

74% reported they did not find ‘Think Ahead’ upsetting.

26% reported some parts caused upset. – Two main areas were identified: “When I Die” and

“Care Preferences”

– Sample responses include • “the idea of organ donation and switching off the life

support machines”

• “when you are sick you may feel differently about the choices you have made compared to when you are well”.

‘Think Ahead’ is very effective at having the

work done,

with the family,

outside of the consultation……

‘Think Ahead’ now….

• ‘Think Ahead v 2’ 2014 – modified in the light of research

• ‘Think Ahead Essentials’ People with impaired cognition

• Over 40,000 copies issued from IHF

• Several additional projects underway…

Levels of EoLP in Kildare Nursing Homes (2013)

Discharging Patients from Med El Service at SJH (2015)

Frail Patients in the Community (SPICT) (2014-15)

Blended Learning Consultation Skills Package (ICGP)(2015)

EoLP / TA TCD Med Undergraduate Curriculum (2015)

Use in the Nursing Home Setting in Kildare (K Doc)(PKB)(2016)

Is is acceptable to provide Think Ahead to patients discharging from an acute Med El Service ?

Dr Ruth Barragry / Dr David Robinson (n = 66, SJH Med El)

Is is acceptable to provide Think Ahead to frail patients in general practice ?

SPICT – Dr Eoin Dunphy / Dr Emer Loughrey

Participating Practices SPICT Study

N = 42

‘Opened a door

allowing the

family to start

talks….’

‘Found it very

helpful. This area

is like a list of

jobs I need to sort

but never got

around to…’

‘A lot of

people won’t

go and get it,

a GP should bring it up….’

‘Makes you

think positively

about things,

puts things into perspective…’

Comments from SPICT Survey …..

Think Ahead….

• Is acceptable to and appreciated by frail, complex individuals ……

• Results in greater levels of engagement with families of individuals who younger and stable (40-70 yr old)

• Requires to be further evaluated and developed…..

Think Ahead

Acceptability Engagement Stable 40-70’s +++ +++

Discharging Med El +++ +

SPICT Study +++ +

Think Ahead Essentials

Think Ahead & PKB + impact of Trained Advocate (SAGE)

Where to discuss Think Ahead ?

• In the media / part of national dialogue

• Routine consulting – all over 50’s, in practice

• On the confirmation of a significant diagnosis

• Part of good chronic disease management

• On admission to supported care environment

• In the company of a friend / family member

• With input from relevant professional advisers

• Sustained input from GP (Personal Physician)

• Complete ‘Think Ahead’ for yourself

• Communicate EoLP as core professional value

• Challenge / advise all Clinical Staff

Concluding

• End of Life planning is appreciated

• It fits very well in to GP Consulting

• It does not appear to cost much in terms of time

• Think Ahead is enabling, resulting in most of the discussion happening outside the surgery

Your Conversation What do you want to say ?

(Are you able to express it ?)

(Are we able to listen ?)

Dr Brendan O’ Shea Lecturer in Public Health and Primary Care TCD

Acknowledgements

• Patients who assisted by their participation.

• Sarah Murphy & Caroline Lynch at

The Irish Hospice Foundation and The End of Life forum

• Training Practices at The TCD HSE GP Training Scheme

• K Doc, PHECC, Nursing Colleagues in Kildare

Dying in Ireland….. Can we do better for ourselves ?