assisting individuals with end of life...
TRANSCRIPT
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Assisting individuals with end of life planning
Dr Brendan O’ Shea Lecturer in General Practice
Dept of Public Health & Primary Care Trinity College
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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’
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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
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Why do we need to Think Ahead ?
• Avoid additional uncertainties
• Alleviate suffering
• Reduce costs
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Why do we need to Think Ahead ?
• Avoid additional uncertainties
• Reduce costs
• Alleviate suffering
• It often feels good to !
When....Where....How to....
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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’
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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..
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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
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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
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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
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Aim
Evaluate acceptability & perceived usefulness of ‘Think Ahead’ to patients when delivered in a General Practice setting.
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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.
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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 ?
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Results Respondents at Wk 3 : n = 92
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GMS : Private
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Should ‘Think Ahead’ be introduced more widely?
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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.
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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.
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Should ‘Think Ahead’ be introduced more widely?
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Has reading ‘Think Ahead’ caused you to discuss it with your family?
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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”.
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Any areas you found Difficult……
• Will 6
• Details around dying 4
• Finance 3
• CPR 3
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Would completing ‘Thinking Ahead’ be of interest to people generally?
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Analysis of the study
Strengths
Good variability
Good engagement
Good fit with practice
Weaknesses
Predominantly closed survey
Sampling
Response bias
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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.
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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
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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
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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
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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
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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
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Focus Groups
2 Intervention and 1 Control Nursing Homes
Analysis Pending
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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
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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)
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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)
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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