The Think Ahead Initiative: Planning for End-of-Life Care

The Think Ahead initiative is a public awareness campaign in Ireland that empowers individuals to express their end-of-life wishes preemptively through the Think Ahead Form. Launched in 2011, it aims to improve communication, decision-making, and legal frameworks surrounding advance healthcare directives. The initiative was born out of a forum's findings that highlighted the public's desire for better end-of-life care planning and communication.

• Think Ahead
• End-of-Life Care
• Advance Directives
• Public Awareness
• Ireland

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1. THINK AHEAD THINK AHEAD Sarah Murphy, Manager

2. What is Think Ahead? A public awareness public awareness initiative in expressing their wishes in the event that they are unable to speak for themselves, due to serious illness, emergency or death initiative to guide members of the public The Think Ahead Form Think Ahead Form (www.thinkahead.ie) guides people in recording important information in the event that they are unable to speak for themselves, due to serious illness, emergency or death.

3. Where did it come from? An Initiative An Initiative of the An initiative of: National Council of Forum on End of Life in End of Life in Ireland Ireland (2009) (2009) Chaired by: Chaired by: Mrs Justice Catherine Mc Guinness

4. Forum public consultation Matters to People? 2009 2009- -2010: Year long public consultation 2010: Year long public consultation 9 public meetings 9 public meetings held nationwide 23 workshops 23 workshops, 108 presentations 108 presentations made on how the challenges of dying, death and bereavement should be addressed 167 submissions received 167 submissions received from members of the public, health care professionals, academics and statutory and voluntary organisations

5. Forum Work Plan

6. Response to public consultation The Forum consultation found that people wanted: Much better communication better communication between every person involved in end of life care A means of making choices and expressing their making choices and expressing their preferences for end of life preferences for end of life and assurance that these preferences would be respected A better legal framework for advance healthcare better legal framework for advance healthcare directives directives Think Ahead project Think Ahead project response to this public demand response to this public demand

7. Think Ahead launched: 2011 The Think Ahead initiative helps prevent shock, helps avoid confusion by encouraging us to think, talk and tell .It takes the attention, the intention and desire of the way we live and applies them equally and exquisitely to our death and dying, so we have some control, choice, peace, dignity at the end

8. Think Ahead Form The Think Ahead Form (www.thinkahead.ie) guides people in recording important information in the event that they are unable to speak for themselves, due to serious illness, emergency or death

9. The Think Ahead Form Regardless Regardless of of your or or level level of of health, encourages encourages you your age, health, Think you to to: : age, stage stage of of life Think Ahead life Ahead

10. The Think Ahead Form THINK THINK about how well those close to you about how well those close to you would know or understand your wishes if a time would know or understand your wishes if a time came when you could not speak for yourself came when you could not speak for yourself because of illness because of illness

11. The Think Ahead Form TALK TALK about these wishes with those close to about these wishes with those close to you and with professionals such as a GP, you and with professionals such as a GP, solicitor or accountant solicitor or accountant

12. The Think Ahead Form TELL the most relevant people in your life the most relevant people in your life about about your your wishes and record them so that they wishes and record them so that they can be available if at some stage, for whatever can be available if at some stage, for whatever reason, you are unable to speak for yourself. reason, you are unable to speak for yourself.

13. RECORD AND REVIEW make sure that you continue to update your wishes sure that you continue to update your wishes make

14. Think Talk Tell Record Review

15. Sections of Think Ahead form Section 1: Section 1: Key Information (I.C.E.) Key Information (I.C.E.) Section 2: Section 2: Care Preferences Care Preferences Section 3 Section 3: : Legal Legal Section 4: Section 4: Financial Financial Section 5: Section 5: When I Die When I Die Appendix Appendix Where to find my important documents/Pets/Social Where to find my important documents/Pets/Social Media/Subscriptions Media/Subscriptions

16. Irish law and advance directives An advance healthcare directive is a written statement made advance healthcare directive is a written statement made by a person with capacity by a person with capacity (the ability to understand information and make decisions) setting out their preferences about medical treatments that might be needed at a time when they cannot speak for themselves Recognised Recognised under Irish common law (in the courts) at the under Irish common law (in the courts) at the moment, but there has been no moment, but there has been no legislation Assisted Assisted Decision Making (Capacity) Bill 2013: Decision Making (Capacity) Bill 2013: This has not yet been passed but will come before the Dail (parliament) on 27 May. This Act will replace the Lunacy Act 1871 Any adult Any adult who has who has capacity capacity legislation

17. 11 Things You Should Know 11 Things You Should Know They are recognised under Irish common law (in the courts) They are recognised under Irish common law (in the courts) at the moment, but there has been no legislation at the moment, but there has been no legislation 1. 1. Assisted Decision Making (Capacity) Bill 2013: Assisted Decision Making (Capacity) Bill 2013: This has not yet been passed but will come before the Dail (parliament) on 27 May. This Act will replace the Lunacy Act 1871 2. 2. Under the new law, any adult who has capacity can prepare Under the new law, any adult who has capacity can prepare an Advance Healthcare Directive. an Advance Healthcare Directive. 3. 3. An Advance Healthcare Directive must be in writing, and An Advance Healthcare Directive must be in writing, and must be witnessed must be witnessed 4. 4.

18. 4. 4. They can be They can be revoked capacity, either verbally or in writing. They can capacity, either verbally or in writing. They can also be amended at any time, but that must be also be amended at any time, but that must be done in writing. done in writing. 5. 5. No one can be forced to make one. They are No one can be forced to make one. They are not compulsory. compulsory. 6. 6. The fact it has to be witnessed is geared to The fact it has to be witnessed is geared to prevent people from being forced into a certain prevent people from being forced into a certain decision. decision. revoked at any time while you have at any time while you have not

19. 7. 7. You can nominate a person who will be allowed to You can nominate a person who will be allowed to speak for you when you lose capacity and ensure speak for you when you lose capacity and ensure that your wishes are respected. that your wishes are respected. 8. 8. An advance healthcare directive An advance healthcare directive only only comes into comes into force if you lose capacity and cannot make a force if you lose capacity and cannot make a decision. decision.

20. 9. 9. Having an Advance Healthcare Directive helps Having an Advance Healthcare Directive helps healthcare professionals to care for you in the way healthcare professionals to care for you in the way you you would like would like 10. Having an Advance Healthcare Directive will save Having an Advance Healthcare Directive will save your loved ones having to decide what they your loved ones having to decide what they think you would want you would want 11. If there is any doubt about an Advance Healthcare If there is any doubt about an Advance Healthcare Directive, a person can go to the courts Directive, a person can go to the courts 10. think 11.

21. Think Ahead Medical research Aim: Evaluate acceptability & perceived usefulness of Think Ahead to patients in the General Practice setting

22. Research Method Observational study (5 Practices) TCD HSE GPTS Ethical approval obtained Think Ahead presented to 100 patients Patients (40-70 yrs) presenting were recruited Clinically unstable patients excluded by their GP Telephone survey at 1 & 3 weeks

23. Research Telephone Survey Questions: Questions: 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?

24. Research Research Results Results Respondents at Wk 3 : n = 92 Gender Male 40 43.5% Female 52 56.5%

25. Research Research Results Results Should Think Ahead be introduced more widely?

26. 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 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 .

27. Key conclusions from research Individuals are mostly well able and capable of engaging with end of life planning. Think Ahead is a useful and available tool (DIY). (DIY). General Practice is a suitable environment to address end of life planning with patients.

28. Think Ahead in Numbers So Far

29. For everyone For everyone

30. So So Think about it Think about it What would you want? What would you want? Does anyone know? Does anyone know?

31. More Information? More Information? www.thinkahead.ie www.hospicefoundation.ie Irish Hospice Foundation Morrison Chambers 32, Nassau Street Dublin 2 Telephone Telephone 01 6793188 Sarah.Murphy@hospicefoundation.ie