Post on 07-Jun-2020
Assisting individuals with end of life planning
Dr Brendan O’ Shea Lecturer in General Practice
Dept of Public Health & Primary Care Trinity College
Introduction
• Family Doctor - Interest in end of life planning
• Part time involvement with Palliative Care Team
• GP Specialty Training TCD HSE GP Training Scheme
• Medical Director K Doc (2008-2013)
GP feasibility / acceptability study ‘Think Ahead’
Nursing Home study End of Life Planning & ‘Think Ahead’
Why we don’t Think Ahead
• Cultural / Societal • Avoidance • Busyness • Fragmented Care (Good vs Poor Multidiscipliniarity)
• Legal uncertainties • 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
• Alleviate suffering
• Reduce costs
Why do we need to Think Ahead ?
• Avoid additional uncertainties
• Reduce costs
• Alleviate suffering
• It often feels good to !
When....Where....How to....
When to Think Ahead ?
• Today ! (DIY) + (DIN DIP)
• At 50 years of age
• At 4-6 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 conversations from
Pre arrest / Ventilated patient
to several years earlier.....
Hospital (A/E or ICU) to Community
Conversation & reflection works best for
a clinically stable, relatively autonomous patient..
How to Think Ahead....
• Personal Experience
• Systematic use of ‘Think Ahead’ (www.thinkahead.ie)
Innovative end of life planning tool (2011)
End of Life Forum & Irish Hospice Foundation
Under constant development
Think Ahead content
• Section 1: Personal data – key contacts / numbers
• Section 2: Care Preferences
• Section 3: Legal
• Section 4: Financial
• Section 5: When I Die
• Section 6: Sharing of Information
Appendix A Where to find my important documents
Summary Sheet
Think Ahead – General Practice
• Feasibility / Acceptability Study 2011-12
• General Practice Setting
• N = 100 clinically stable patients, 40-70 years
• ‘Think Ahead’ presented, followed by Telephone Survey at 1 and 3 weeks
• Participants advised to d/w friend or family
Dr Barry Brennan, Dr Oxana Bailey, Dr Frank O Leary, Dr Olivia McElwee Dr Dave Martin
Aim
Evaluate acceptability & perceived usefulness of ‘Think Ahead’ to patients when delivered in a General Practice setting.
Method
• Observational study (5 Practices) TCD HSE GPTS
• Ethical Approval obtained
• Pilot (n = 15)
• Think Ahead presented to 100 patients
– Patients (40-70 yrs) presenting were recruited
– Information sheet outlining purpose of the study
– Clinically unstable patients excluded by their GP
– Informed written consent was obtained
– Telephone survey at 1-2 & at 3-4 weeks.
Telephone Survey at 1 & 3 weeks
• Called by the presenting GP
• Simple Survey
Did you read / complete Think Ahead ?
Any parts difficult / upsetting ?
Was it of interest ?
Did you discuss it with anyone ?
OK to get be given ‘Think Ahead’ in this way ?
Preference for paper or web based version ?
Results Respondents at Wk 3 : n = 92
GMS : Private
Should ‘Think Ahead’ be introduced more widely?
Was ‘Think Ahead’ difficult to understand ?
• 63% reported ‘no difficulty’ in filling in the folder.
– The principal area that caused difficulty for some was “Care Preferences”.
Sample Response:“I don’t understand the issues around CPR and ventilation”.
– Some responders had 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”.
Any areas you found Difficult……
• Will 6
• Details around dying 4
• Finance 3
• CPR 3
Would completing ‘Thinking Ahead’ be of interest to people generally?
Analysis of the study
Strengths
Good variability
Good engagement
Good fit with practice
Weaknesses
Predominantly closed survey
Sampling
Response bias
Key Conclusions
Individuals are mostly well able and capable of engaging with end of life planning.
‘Think Ahead’ is a useful and available tool (DIY).
General Practice is a suitable environment to address end of life planning with patients.
End of Life Planning- Nursing Homes
• Controlled trial / waiting list / mixed methods
• Educational Intervention using Think Ahead
• 5 Intervention and 3 control Nursing Homes
• Key Outcome – Documentation EoL Planning
Intervention
Interactive NH Workshop, using Think Ahead
Dr Deborah Martin Dr Joe Marry, Dr Hugh Brady, Dr Connor Gallagher, Prof Catherine Darker
Demographics (First Survey – November 2013)
525 residents /8 NHs
Average age 81yrs
Female 65% (342)
Male 35% (183)
Normal 18%
Mild 19%
Moderate 23%
Severe 40%
Cognition
None 59.0% Range 0 – 91%
Some 19.2 % Range 4 – 56%
Full 21.7% Range 3 – 71%
59.0
19.2 21.7
0
10
20
30
40
50
60
70
None Some Full
Documentation
N=525
19.7%
13.3%
17.1%
36.4%
0%
5%
10%
15%
20%
25%
30%
35%
40%
Normal Mild Moderate Severe
Cognition Vs Full Documentation
N=323
19.7%
13.3%
17.1%
36.4%
20% 24%
35%
47%
0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
50%
Normal Mild Moderate Severe
Cognition
Full EOL Documentation Vs Cognition
Cycle 1
Cycle 2
Focus Groups
2 Intervention and 1 Control Nursing Homes
Analysis Pending
In a national survey carried out in 2004,
67% indicated that they would like to die at home: deaths at home constitute only a quarter of all deaths in this country
Weafer
Where to discuss Think Ahead ?
• In the media / part of national dialogue
• Routine consulting – all over 50’s
• 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)
Ongoing Work...
• ICGP Blended learning consultation skills pack
• Use of Think Ahead in patients discharging from Med El Services
• Recording and Reviewing End of Life Planning Module in the GP EMR (GPIT)
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