2. Sharing Your Wishes ™ ….. Give Them Peace of Mind Presented by Gina Fedele Hospice Buffalo Where Hope Lives

3. The Future depends on what we do in the present. The Future depends on what we do in the present. - Mahatma Gandhi

4. Unplugged

5. Statistics  50-60% of Americans die in hospitals  25-30% more die in nursing homes Most people want to die at home  Only 20-30% die at home

6. Who Decides When You Can’t  Spokesperson (Agent)  Family/Friends  Strangers  The Government

7.   Family members in NY have no legal authority to consent or object to medical treatment for an incapacitated adult in absence of a signed health care proxy or other specific treatment instructions, such as a living will according to a 1988 ruling by the state’s highest court.

8. Advance Care Planning  A plan that assists individuals in understanding their future choices  A process of shared decision making  Chooses a spokesperson, who will speak on your behalf  A written document

10. Living Will  States what you want and do not want for medical treatments at the end of life

11. Healthcare Proxy  Documents who will make medical decisions about your healthcare Authorized to speak only if you can’t Authorized to speak only if you can’t

12. The Best Gift  Clarify values, beliefs  Choose a Spokesperson  Understand life-sustaining treatments  Practical issues Compassion and Support at the End of Life

13. Myths and Truths Myths  Something for the very old or sick  Doing it will “bring on” my own death sooner  Needlessly worry children or loved ones Truths  Anyone can be suddenly severely injured  No more likely to die after talking about it than to get sick after enrolling in a new insurance company  Talking about wishes relieves burden of making decisions in a time of crisis

14. Who Should Have a Health Care Proxy?

15. Begin the conversation...

16. The Benefits  Maintain control of what you want  Peace of mind  Wishes are honored

17. How to Choose a Spokesperson Choose a family member or friend who is:  Trusted  Willing to accept responsibility  Willing to follow your wishes and instructions  Able to make complex decisions  Meets legal requirement 18 yrs or older, not your physician 18 yrs or older, not your physician

18. Clarify Your Values and Beliefs  Think about What makes life worth living What makes life worth living What really matters to you What really matters to you What brings you joy What brings you joy

19. Life-Sustaining Treatments  Weigh benefits vs. burdens  Treatment CAN be refused or accepted  Can do time-limited trials  Treatments CAN be discontinued  Will the treatment make a difference?  Is there hope for recovery?  What does the patient value?

20. Life Sustaining Measures  CPR  Intubation/ventilation  Nutritional support  Kidney dialysis  Antibiotics  IV hydration

21. CPR – Not Like You See on ER  If a person’s heart stops and CPR is attempted: 56% are likely to die during the resuscitation efforts 56% are likely to die during the resuscitation efforts Over half of survivors will die in next two days Over half of survivors will die in next two days Chance of mental and physical disability Chance of mental and physical disability Those that get home are typically at home and in good health prior to their CPR that took them to the hospital

22. Just Imagine…

23. “With no family member legally authorized to speak for a patient, it is not uncommon for invasive and painful treatment to be prolonged unreasonably, while treatment that could make the final days more comfortable is denied.”

24. Important to Know  Your advance directive should reflect your wishes  Lawyers are not needed  Not all documents are legally valid in every state A witness and a notary may be required if you leave the state A witness and a notary may be required if you leave the state  AD does not expire and can be updated as needed

25. Your Choices How the Majority of Americans Die How the Majority of Americans Wish to Die

26. Individual’s Rights  You have a right to: Appoint an Agent (Spokesperson) Appoint an Agent (Spokesperson) Not be discriminated against Not be discriminated against Have your wishes honored Have your wishes honored

27.  Providers are legally responsible for honoring the individual’s wishes If an individual feels their rights have been denied call DOH @ 716-847-4532

28. Choices  Palliative and hospice care  Staying home and out of the hospital  Enjoying your loved ones  Minimizing financial burden

29. What to do with your Health Care Proxy form  Keep a copy for yourself  Send to Assure Your Wishes database  Give a copy to your Spokesperson/alternate spokesperson Spokesperson/alternate spokesperson Other family members/loved ones Other family members/loved ones Primary Care Physician Primary Care Physician Physician Specialists (ex. Cardiologist) Physician Specialists (ex. Cardiologist) Spiritual Adviser Spiritual Adviser

30. Review and Update your Health Care Proxy form  Periodically  Major life events  Newly diagnosed illness  Advancing illness

31. Why Have One Your Healthcare Proxy can be called upon when:  You are unexpectedly incapable of making your own decisions and  It is clear you will have little or no recovery and  The injury or loss of function is significant

33. Health Care Agent’s Rights and Responsibilities  Right to: Have access to the person’s medical information and records Have access to the person’s medical information and records  Responsibility to: Know what is important to the person, so decisions will be made according to the person’s wishes Know what is important to the person, so decisions will be made according to the person’s wishes To advocate for the individual to assure their wishes are honored To advocate for the individual to assure their wishes are honored

34. Don’t Forget to Share  Prevent avoidable suffering  Protect caregivers Doctors are so scared of being sued that they often over treat Doctors are so scared of being sued that they often over treat  Avoid financial ruin

35. Give the perfect gift!

36. Assure Your Wishes  For more information visit: http://www.sharingyourwishes.org