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