Overview of what residents of Washington, DC need to know and do ahead of time to help ensure they have a dignified and peacefull death.

1. DuPont Circle Village

2. About Compassion & Choices We date back to 1980. We work with terminally ill adults and family members, exploring all of the client’s legal options for a peaceful and dignified death. We educate the public and healthcare professionals on the importance of end-of-life care.

3. Compassion & Choices We also work to improve pain management, defend physicians who aggressively treat pain, and represent families in legal actions against health care providers who refused to honor the patient’s wishes or failed to properly treat the patient’s pain.

4. How many people at DuPont Circle Village will eventually die? 

5. How many adults haveprepared for their death? 

7. Living Will

8. Power of Attorney

9. Durable Power of Attorneyfor Health Care

11. We All Need A Will/Trust, Yet Only 45% of Adults Have One “Getting Ready to Go” – AARP, Jan. 2008

12. What Happens If Thereis No Will/Trust?

13. Hierarchy of property succession in D.C. when no Will exists Spouse or Domestic Partner – Descendants – Parents – Siblings – Aunts or Uncles – First Cousins – Great Aunts or Uncles Related by Marriage – Great Aunts or Uncles Not Related by Marriage – First Cousins Once Removed – Second Cousins – First Cousins Twice Removed – Second Cousins Twice Removed – First Cousins Thrice Removed – Third Cousins – Second Cousins Twice Removed – Third Cousins Once Removed – Grandparents – The Mayor of D.C. (for the poor)

14. Power of Attorney Power of Attorney - A document that allows you to appoint someone else (your executor/ix) to handle your financial matters either before or after you have died, including the distribution of your estate and the payment of any outstanding debts.

15. A Rose by Any Other Name Your Power of Attorney may go by different names depending upon where you live or where your documents were prepared. The most common variations include “agent,” “proxy”and “attorney in fact.” (In D.C. Attorney in Fact is used)

16. Living Will Outlines your end-of-life medical treatment wishes in the event you can no longer communicate for yourself. It includes the type of treatment you want (or don’t want). A Living Will only becomes effective after you lose capacity.

17. Types Of Living Wills Oral Written Wishes expressed verbally Communicated in writing Difficult to document Helps clarify your wishes Subject to (mis)interpretation Easily copied/distributed Removes most questions relating to your wishes Easy to falsify Easily overridden Forms a legal document Virtual Living Wills where you record your instructions

18. Less than half of adults have completed a Living Will “Getting Ready to Go” – AARP, Jan. 2008

19. Durable Power of Attorneyfor Health Care (DPA) A legal document allowing you to appoint another person to make your medical care decisions if you are unable to communicate for yourself. It usually only takes effect if you are no longer able to communicate for yourself.

20. Durable Power of Attorney for Health Care Like a regular power of attorney, the person you appoint in your DPA might be called an “agent,” a “proxy,” or another title. DPAs have nothing to do with your financial power of attorney.

21. Less than half of adults have a Durable Power of Attorney “Getting Ready to Go” – AARP, Jan. 2008

22. Advance Health Care Directive An Advance Health Care Directive is a document combining your Living Will and Durable Power of Attorney for Health Care into a single document. Authorized under DC ST § 7-622, Subchapter II. Natural Death.

23. In addition an AHCD lets you specify (optional) such things as where you would liketo be treated, if you want to be an organdonor, preferences for last rites, where you want to be buried/cremated, etc.

24. AHCD Requirements Must be signed by 2 witnesses. Witnesses cannot be your doctor, an employee of a health care facility, a creditor or an heir. Make sure document is dated. Ideally (not mandatory) document should be notarized as well.

25. What Happens If Thereis No Advance Directive?

26. Usual Hierarchy of Decision Makers in D.C. when no one has been appointed by patient. CAG is Court Appointed Guardian

27. If you don’t have an Advance Directive, you may go down in history – whether you want to or not…

28. Terri Schiavo No advance directive. Lost consciousness and was left in a persistent vegetative state. Family dispute over what she would have wanted. Seven year court battle before she was allowed to die.

29. Robert Wendland No advance directive. Accident rendered him in a “minimally conscious” state. Previously indicated he would not want to live like a “vegetable.” Court ruled minimally conscious state is not the same as vegetative.

30. Reasons given for not having an AD I don’t have time to complete one. I don’t want to talk about death/too young. I’ll be “done-in” prematurely. God will take care of me. Too complicatedto fill out. My spouse/son/daughter, knows what to do.

31. Why Do So Many AHCD Fail? Copies not provided to family, doctor, etc. (AARP reports 35% of AHCD cannot be found). Others are unaware that a directive was ever completed. Family members disagree on what is “best” kind of care. Agent’s understanding of terms differs from what patient meant.

32. A Problem With Terminology While we think we know what we mean, others may, and often will, interpret what we say differently. “I never said most of the things I said.” Yogi Berra

33. What Do These Terms Mean? No extraordinary care. No heroic measures. If I am in pain. If I have no quality of life. If I have no hope of recovery.

34. Other Reasons ADs May Fail Your agent may be unavailable or unwilling to comply with your wishes. Physician or healthcare provider may be morally opposed to honoring your wish. There are few legal penalties for non-compliance.

35. Alaska Washington Maine Montana Vermont North Dakota Minnesota Oregon New Hampshire Idaho Wisconsin Massachusetts South Dakota New York Michigan Rhode Island Wyoming Connecticut Iowa Pennsylvania New Jersey Nebraska Nevada Ohio Delaware Indiana Illinois Utah Maryland West Colorado Virginia California Virginia Kansas Missouri Kentucky North Carolina Tennessee Oklahoma Arizona South Arkansas New Mexico Carolina Mississippi Georgia Alabama Hawaii Texas Louisiana Florida States With Penalties for not Honoring Advance Directives Criminal Penalty Unprofessional Conduct Statutory Damages Civil Damages The Right-to-Die - Alan Meisel 2008

36. Some Terms To Know When Planning Your Advance Health Care Directive

37. Palliative Care Sometimes referred to as comfort care. Its goal is to relieve pain and manage symptoms, usually with the understanding that curative efforts will not longer be attempted.

38. Palliative Sedation Sedating a patient to the point of unconsciousness to relieve pain and symptoms. If life support is then withheld or withdrawn the process is known as terminal sedation.

39. Voluntary Stopping of Eating and Drinking VSED - A legally recognized option where the patient refuses food and fluids. Symptoms such as thirst and hunger can be managed. Patients die from dehydration or organ failure, but studies show death is relatively peaceful and pain free.

40. Refusing Medical Treatment Patients can legally refuse any unwanted treatment. This includes withholding or withdrawing life support such as dialysis, ventilators, tube feeding, etc. It is estimated over 70% of hospital deaths are the result of a decision to withhold or withdraw further treatment.

41. Persistent Vegetative State (PVS) Refers to a condition where the individual has lost all cognitive function but may still be kept biologically alive by artificial means. There is usually no hope of ever regaining consciousness.

42. POLST, MOLST, POST, MOST A Physicians Order for Life Sustaining Treatment is a medical order signed by a doctor that specifies the level or emergency treatment you want (or don’t want). It is sometimes referred to as an Out of Hospital DNR. (D.C. does not presently have one) MOLST – Medical Order for Life Sustaining Treatment, POST – Physicians Order for Scope of Treatment, MOST – Medical Order for Scope of Treatment

43. Think About What You Want, Weigh Your Options, You Can Be In Control

44. Improving The Odds In Your Favor Make sure all interested parties have copy of your AHCD. Keep a list of everyone who has acopy in case you make changes. Keep a copy in your wallet orpurse (you can indicate thatyou have one on your license,ID, etc. with a self-made sticker).

45. Improving The Odds In Your Favor Make sure your physician understands and will honor your wishes. Make sure the healthcare facility will honor your wishes. Be sure to appoint an alternate agent and alternate physician just in case. Review, initial and date your AD annually.

46. A Letter to My Doctor Make Sure He/She Knows I would like reassurance that: If I am able to speak for myself, my wishes will be honored. If not, the requests from my health care representative and advance directives will be honored. You will make a referral to hospice should I request it. You will support me with all options for a gentle death, including providing medications that I can self-administer to help my death be as peaceful as possible. I am not requesting that you do anything unethical while I am in your care

47. Religion and Conscience Refusals You should be aware that the Ethical and Religious Directives for Catholic Health Care (ERDs) forbid the removal of feeding tubes for patients in a persistent vegetative state (PVS) and may deny adequate pain control at the end of life. “If the health care institution in which I am a patient declines to follow my wishes as set out in this advance directive, I direct that I be transferred in a timely manner to a hospital, nursing home or other institution, which will agree to honor the instructions set forth in this advance directive.”

48. Dementia and Honoring Your Wishes Your Advance Directive must be prepared while you are still capable of making informed decisions but you can plan for the future in case you lose decision-making capacity. If I remain conscious but have a progressive illness that will be fatal and the illness is in an advanced stage, and I am consistently and permanently unable to communicate, swallow food and water safely, care for myself and recognize my family and other people, I would like my wishes regarding specific life-sustaining treatments, as indicated on the attached document entitled My Particular Wishes to be followed. If I am unable to feed myself while in this condition I do/do not (circle one) want to be fed.

49. Is Five Wishes Right for You? WISH #2 - "What you should keep in mind as my caregiver:" "I do not want anything done or omitted by my doctors or nurses with the intention of taking my life." Note that turning off a respirator, stopping dialysis, withholding or withdrawing artificial hydration and nutrition, etc., are all done with the intent not to prolong your life if you do not want such support.

50. Problem with Five Wishes? Five Wishes does not comply with the statutes of Alabama, Indiana, Kansas, New Hampshire, Ohio, Oregon, Texas or Utah and therefore may not be honored in those states ADVANCE DIRECTIVE CHECPOINT AHEAD

51. Make sure the document you choose reflects your actual end-of-life wishes.

52. Portability of Advance Directives In 1993 the National Conference of Commissioners drew up the Uniform Health Care Decisions Act in an effort to create a single, portable form. However, as of 2010, only 9 states had adopted it. Those states are: Alabama, Alaska, California, Delaware, Hawaii, Maine, Mississippi, New Mexico and Wyoming

53. Portability of Advance Directives There is no requirement that specific language, terms or treatment options must be specified on an AHCD. In most cases other states will honor your wishes, but disregard any requests for treatments that are not legal in that state. If you spend a significant amount of time in another state, consider multiple AHCDs.

54. Good to Go? - Need to Know The best laid plans can go awry when you are the only one who knows the plan. You must inform all interested parties – family, friends, physician, of your wishes. You must make sure all interested parties have a copy of your AHCD. You should review and initial your AHCD every year and provide copies as needed.

55. How to Start a Conversation Discuss a movie, book or article you have read that deals with end-of-life issues. Blame it on someone else: “My financial planner/doctor/attorney said this needs to be discussed.” Share a personal experience: “You won’t believe what happened to Bob, I don’t want that to happen to me.”

56. The Great Uncertainties Medicine and technology change all the time Future holds cures that are unknown today Possibility of stem cells, transplants, new drugs Laws are changing - for better and worse Issues of medical costs and facility availability When is enough enough?

57. Final Factors To Keep In Mind You can change your mind at any time. But changes must be in writing or personally communicated. You can revoke an agent and appoint a new one at any time. Your personal status, and therefore wishes, may change (marriage, health, important upcoming event, miracle cure). You do not need a lawyer, but you should consider one if your situation is complex.

58. You’re Good to Go…