Our Care, Our Decisions: Native Values and Health Care Decisions Understanding Advance Directives

1. Our Care, Our Decisions: Native Values and Health Care DecisionsUnderstanding Advance Directives Sponsored by: The Alaska Native Medical Center Medical Ethics Committee Facilitators: Colleen Anagick, LCSW Michelle Moran, RN MPH OCN CHPN

2. Overview • Issues in health care decision making • Definitions of terms used in health care decision making • Case studies and examples • Tools and resources to help in the health care decision making process

3. What are you hoping to get from this workshop? • Tell us what you would like to know to be able to talk to patients about advance directives • Specific questions? • professional • personal

4. Why Bother with AD’s? • Advances in medical technology • People are living longer • chronic illness • Unexpected situations • acute illness • accidents • military deployment

5. Advances In Medical Technology • Advances in medical technology allow people to survive illnesses and injuries that once they would have died from • Examples: • cancer treatment • dialysis • children with complex medical conditions • head injuries due to accidents

6. Case #1: • Robert, an 82 year old Yupik elder, was medi-vaced to ANMC from the YK region with a massive stroke • Robert was admitted to the intensive care unit and placed on life support • His prognosis was poor • He did not have advanced directives but, according to his eldest son, had previously expressed his desire not to be put on life support and that he would never want to live in a nursing home • Robert’s condition got worse • A care conference was held to discuss withdrawal of life-support • Family members expressed that they knew Robert would not want to be on a breathing machine, but the decision to take him off the breathing machine was too hard to make

7. People Are Living Longer • Proportion of US population > 65 years old • ~12% in 2000 • ~20% in 2030 (projected) • Number of US population > 65 years old • ~35 million in 2000 • ~71 million in 2030 (projected) US Census Bureau, International Data Base, Table 094

8. Unexpected Situations • Families may have to make decisions about • putting their loved one on a breathing machine to keep them alive • the risks and benefits of major surgery • restarting their loved one’s heart if it were to stop beating • feeding tubes

9. Case # 2 • Teri Shiavo, a 27 year old woman who suffered severe brain damage from a heart attack in 1990 • Teri was in an irreversible persistent vegetative state for 15 years • Teri’s spouse and parents disagreed on whether life-sustaining measures should be continued or not • Teri’s family fought in court about who had the right to make medical decisions for Teri • Teri did not have written advance directives • Teri Shiavo died at the age of 41 on March 31, 2005.

10. What are Advance Directives? • Advance Directives are a tool for: • communication • advocacy • counseling

11. Advance Directives are: • A communications tool • for assisting people in clarifying their values and preferences • An advocacy tool • for helping patients project their caring for family into an uncertain future • A counseling tool • for supporting and guiding family members in making decisions in stressful situations National Healthcare Decisions Day 2008

12. Advance Directives Include: • Instruction for Health Care • Durable Power of Attorney • Comfort One (in Alaska)

13. Instructions for Health Care • An oral or written advance directive that conveys the wishes of a person in the event of terminal illness or life-threatening event • It goes into effect when a person cannot make or communicate their own health care decisions • Also known as a living will

14. Durable Power of Attorney • A legal written document that allows a person to name someone else to make health care decisions for them and uphold their wishes if they are not able to do so themselves • It goes into effect when a person cannot make or communicate their own health care decisions • It remains in effect as long as a person cannot make or communicate their own health care decisions and becomes null and void when the person dies

15. Comfort One • The Alaska Comfort One Program • allows a person who is terminally ill to choose not to have cardiopulmonary resuscitation done when their heart stops • establishes a protocol for health care providers to respect these wishes • remains in effect unless/until revoked • allows health care providers in Alaska to respect Do Not Resuscitate orders from other states, territories or possessions of the US

16. Why Make Health Care Decisionsin Advance? • Increases the likelihood that a person’s wishes will be honored • Reduces personal worry • Reduces feelings of helplessness and guilt for families • Reduces legal disputes • Provides direction to the health care team • It is a gift to your loved ones

17. Why Make Health Care Decisionsin Advance? • Protect your rights • To make informed decisions • To accept or refuse certain types of care or treatments • To have some control during illness • To have your wishes be respected at the end of your life

18. Beginning “The Conversation” • Having the tough conversation with patients, families, friends, health care providers • We can’t make decisions for patients and families, but we can provide information to help individuals make decisions that are right for them and their families

19. How to BeginThe Tough Conversation • AD’s can be uncomfortable to talk about • Everyday life events can provide an opportunity to talk about advance directives • death of a loved one, friend, acquaintance • change in health status • family events such as holidays, anniversaries, memorial potlatches • the “6 D’s” • It is usually more difficult to talk about advance directives under stress or during a crisis

20. Making it Personal • “Normalizing” the process • “we do this with everyone” • Have you completed your Advance Directives? • have you helped a friend or someone in your own family complete theirs? • how did you/they feel about the process?

21. Three Big Decisions • The three most common decisions people struggle with: • CPR • Artificial hydration and nutrition • Cure vs. comfort

22. Decision #1 • Should we attempt resuscitation (CPR) (restart the heart when it has stopped beating)? • most successful for people who were healthy prior to an accident or injury • people with the least chance of survival include: • terminally Ill • multiple medical problems • those who are dependent on others for care

23. Decision #2 • Should we consider artificial hydration and nutrition (feeding tubes)? • Beneficial to those needing short term artificial feeding or patients who have lost the ability to swallow and who can live with a feeding tube and still enjoy life (visiting with family, reading, etc.). • Risks of artificial feeding may include aspiration pneumonia, ulcers and infections. If need to be restrained to prevent removing the tube, immobility means they are at additional risk for bedsores or atrophy and stiffening of their limbs.

24. Decision #3 • When is it time to shift the goal from cure to comfort care? • most people will die of chronic diseases but may live many years before dying • patients and families need to weigh the benefits and burdens of any specific treatment; quality of life is the goal • health condition and functional changes often come gradually over time • patients and families have difficulty when a diagnosis becomes terminal

25. “Final Gifts” Any other stories? examples? questions?

26. Take Home Pearl #1 • Advance healthcare planning helps people: • by developing guidelines that determine and document a person’s goals and wishes • by ensuring that care is provided according to that person’s choices • by decreasing crisis decision making by anticipating potential emergencies • by promoting understanding, reflection and communication about values and preferences National Healthcare Decisions Day 2008

27. Take Home Pearl #2 • Advance healthcare planning is important because: • it can avoid some of the crises that occur when someone becomes incapacitated and others are left to make decisions about their healthcare • it can be a gift to loved ones in times of crisis by documenting the wishes of the person who can no longer speak for themselves. National Healthcare Decisions Day 2008

28. Resources • ANMC’s advance directives packet • Regional primary care providers and hospitals • Alaska Legal Services Corporation: www.alsc-law.org • Alaska State Advance Directives: www.hss.state.ak.us/dph/director/living_will • Alaska Law Help:www.alaskalawhelp.org • Aging with Dignity: www.agingwithdignity.org • American Bar Association: www.abanet.org/aging/toolkit • Caring Connections:  www.caringinfo.org