THINK AHEAD Sarah Murphy, Manager

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

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

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

Forum Work Plan

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

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”

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

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

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

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

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

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

Think Talk Tell Record Review

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

Irish law and advance directives An advance healthcare directive is a written statement made 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 under Irish common law (in the courts) at the moment, but there has been no legislation 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 Any adult who has capacity

11 Things You Should Know 1. They are recognised under Irish common law (in the courts) at the moment, but there has been no legislation 2. 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 Under the new law, any adult who has capacity can prepare an Advance Healthcare Directive. 4. An Advance Healthcare Directive must be in writing, and must be witnessed

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

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

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

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

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

Research Telephone Survey 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?

Research Results Respondents at Wk 3 : n = 92

Research Results Should ‘Think Ahead’ be introduced more widely?

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”.

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). General Practice is a suitable environment to address end of life planning with patients.

Think Ahead in Numbers So Far

For everyone

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

More Information? Irish Hospice Foundation Morrison Chambers 32, Nassau Street Dublin 2 Telephone