Advance Directives

1. Advance Directives Native Families Cancer Caregiver WorkshopMay 28-30, 2008

2. Objectives • Define the different legal documents which can affect a person’s cancer care • Identify who should be involved in advance planning communication

3. What is a…? Advance Directive Will Living Will General Power of Attorney DNR Directive Medical Power of Attorney CPR Directive Healthcare Agent Estate

4. What is a Will? • A document used to determine: • Who gets your property and when, • Who will be a guardian of your children and their property, and • Who will manage your estate after you journey to the spirit world

5. What is an “estate” • An estate is • Property/Land • Money • Personal belongings • Everything you own • Some bills may be included

6. medical What is Advance Care Planning? sharing peace requests financial comfort legal spiritual respect burial services

7. What is advance care planning? • Getting information about treatments available • Deciding what kind of treatment you would want for a life-limiting illness • Sharing you personal values, spiritual values, and beliefs with loved ones • Using advance directives to put into writing what you want if you are no longer able to speak for yourself

8. Advance Directives Living Will Medical Power of Attorney CPR or DNR Directive

9. Living Will • Puts into writing wishes concerning medical treatments you do and do not want if you become to ill to speak for yourself

10. Living Will • Only used if you cannot communicate for yourself • A physician will need to certify you are in a terminal condition • Directs what treatment to and not to provide • Goal is to prevent unwanted or care that will not result in improvements

11. Terms to know for Living Wills • Life-Sustaining Treatments – medical procedures that replace or support a bodily function that is necessary to keep you alive. • Ventilator breaths for you • Dialysis cleans the blood

12. Terms to know for Living Wills • Artificial Nutrition and Hydration (tube feeding) - supplements or replaces ordinary eating and drinking by giving a chemically balanced mix of nutrients and fluids through a tube placed directly into the stomach, the upper intestine or a vein

13. Why would someone not want life-sustaining treatments or artificial nutrition and hydration? • In some cases these treatments can sustain someone’s life but do not provide the quality of life or dignity they wish to maintain.

14. Discussion Question • Mark is 55 year old man with advanced lung cancer. He had gone through 6 months of chemotherapy, but it was not working. After discussing his options with the doctor, his spiritual advisor and loved ones he decided to not have any further chemotherapy. He was now back at home and having a loss of appetite and losing weight. His family was very upset by the situation and were strongly encouraging him to eat, but he never felt hungry or thirsty. They also wanted him to go to the clinic and get a feeding tube (artificial nutrition and hydration). What can the family do to help Mark at home with eating and drinking? What information would be important for Mark and his family in order to make a decision about getting a feeding tube?

15. Medical Power of Attorney • Document you sign naming someone to make your health care decisions when you are unable to make them Durable Power of Attorney for Health Care Attorney-in-Fact Healthcare Agent Healthcare Proxy Note: A “General” Power of Attorney authorizes someone to make financial decisions for you. This does not authorize them to make “medical” or “healthcare.” And a “Medical” Power of Attorney cannot make financial decisions.

16. Who should be a Medical Power of Attorney? • Someone trusted to follow wishes • May or may not be a family member • Someone who will be an advocate • This person will NOT be responsible for cost of care • Can also have an “alternate”

17. What types of decisions will a Medical Power of Attorney make? • Health care issues (surgery, tests, treatment) • Consent for hospital, nursing home • Authorize or refuse medication • Donate organs • Apply for Medicare, Medicaid or other benefits • Cannot remove withhold or withdraw “comfort care”

18. How should a Medical Power of Attorney make these decisions? • Look at written directions • Look at medical records • Remember any conversations/directions • Remember and respect spiritual and religious beliefs • Remember and respect personality • Look at how other decisions were made • Consider quality of life • Note: If person regains ability to make decisions, the Medical Power of Attorney cannot continue to do so

19. CPR or DNR Directive • A document that means if your heart stops beating you do not want medical providers to perform “cardiopulmonary resuscitation” or other measures to restart your heart CPR = Cardiopulmonary Resuscitation DNR = Do Not Resuscitate AND = Allow Natural Death

20. What legal requirementsshould you be aware of? • Wills are impacted by federal, state, and tribal laws • American Indian Probate Reform Act • The laws governing advance directives are made by states or tribes • South Dakota “Health Care Consent” • South Dakota “Comfort One”

21. Federal, State, Tribal Laws • American Indian Probate Reform Act (Federal) • Without a will • AIPRA controls who receives your trust property (federal code or approved tribal code) • State law controls who receives your non-trust property • With a will • your land can be transferred in trust to any Indian person or any of your descendants of your choice • you control who receives your non-trust property

22. All blood relatives South Dakota Law: “Health Care Consent” • In the absence of a Medical Power of Attorney this law designates which persons and in what order may make healthcare decisions for someone unable to communicate: • Spouse if not legally separated • An adult child • A parent • An adult sibling • A grandparent or an adult grandchild • An adult aunt or uncle, adult cousin, or an adult niece or nephew • Close friend

23. South Dakota Law: “Comfort One” • “Comfort One” allows emergency medical service (EMS) providers to honor CPR/DNR directives • Previously EMS were not always able to honor these • Form must be signed by (or on behalf of) patient AND physician, physician assistant or nurse practitioner • EMS personnel need to be shown the form or a special “comfort one” bracelet

24. Who should complete Wills and Advance Directives? • All adults over the age of 18 • Regardless of health status • Should be reviewed periodically

25. Why are completing these difficult? • I’m scared that talking about it will “bring it on” • I don’t know where to get the forms to complete • The forms are hard to understand • I don’t know who should be my health care agent • I’m worried it will cost money • I don’t know how to start the conversation

26. Why are these important? • Wills and Advance Directives can help reduce anxiety, stress, and conflict for family and friends at difficult times • They provide a chance for a person to share and communicate their wishes with family and friends • Provides a way for a person to have more say in their care and property

27. How to complete advance directives? • Begin by talking to others: elders, doctors, family members, spiritual healers, community health leaders, medicine man • Each individual should select a “healthcare agent” who they trust and knows them well • Communication with the selected “healthcare agent” will be very important!

28. How to complete advance directives? • Obtain the appropriate forms for living wills and Medical Power of Attorney (e.g., South Dakota legal forms, “5 Wishes”) • Prepare forms for your state or tribe • You can add personal instructions about your care to the Living Will • Signature must be witness by “notary public” or two adult witnesses • Each person should keep their own original copy somewhere accessible (not in a locked box) • Copies of the forms should be given to: Health Care Providers, Healthcare Agents, or anyone else who might become involved in your healthcare

29. Talk to your loved ones about… • Your overall attitude toward life • Your attitude about independence • Religious or spiritual beliefs and convictions • Attitudes toward health, illness, and dying • Feelings about doctors and other health professionals

30. Your Medical Power of Attorney about… • The quality of life that’s important to you • Treatments you particularly want to receive or refuse • Anything you are afraid of happening if you can’t make decisions for yourself Your Medical Power of Attorney should have a signed copy of your advance directives

31. Your spiritual or religious healer/advisor about… • Ways that your spirituality is important to you • How your beliefs affect your attitudes toward end-of-life care and death • Spiritual or religious practices that you would like to have available at home or in a hospital • Spiritual or religious practices you wish to plan for before and after death • How you find comfort when afraid or in pain

32. Your doctor or health care provider about… • Any treatment issues that you need more information about • The quality of life that is important to you • The fact that you have advance directives • The name and contact information for your Medical Power of Attorney Your doctor should have a signed copy of your advance directives

33. What if you change your mind? • You can revoke or change the documents at any time • You need to notify your health care providers and your Medical Power of Attorney of any changes

34. Resources for advance planning

35. Caring Connections www.caringinfo.org National Hospice and Palliative Care Organization www. nhpco.org Five wishes www.agingwithdignity.org Helpguide www.helpguide.org Advance directive forms for your state can be downloaded from these sites

36. Dakota Plains Legal Services • Provides legal representation, advocacy, conflict resolution, and community education to low-income Native and Non-Native individuals • Branch offices in: • Mission, SD • Fort Thompson, SD • Fort Yates, ND • Eagle Butte, SD • Pine Ridge, SD • Sisseton, SD • Rapid City, SD