1. Legal and Ethical Issues in End-of-Life Care Leslie Meltzer Henry, JD, MSc, PhD(c) Assistant Professor, University of Maryland School of Law

2. The Right-to-Die Movement: Driven by Three Landmark Legal Cases Though most end-of-life care involves the elderly, debates about whether it is legal or ethical to withdraw such care have arisen most forcefully in cases involving brain-damaged young women. Pictured here from left to right: Karen Quinlan (d. 1985), Nancy Cruzan (d. 1990), and Terri Schiavo (d. 2005).

3. Karen Ann Quinlan Accident: 1975 Legal Case: 1976 Died: 1985 At 21-years-old, she collapsed at a party after consuming alcohol and Valium. She was deprived of oxygen, suffered brain damage, and once at the hospital, lapsed into a persistent vegetative state. A persistent vegetative state (PVS) means the patient suffers from such severe brain damage that she does not exhibit awareness, voluntarily interact with her environment, or have purposeful movements. She was kept alive with a respirator. Her family requested removal of the respirator; the hospital refused. The Supreme Court of New Jersey heard the case.

4. Ethical and Legal Issues (1): Would removing the respirator be “killing” Quinlan? Court says “No”: Withdrawing life-support is not an act of killing. Since competent patients can refuse life-sustaining treatment, so can incompetent patients through their guardians.

5. Ethical and Legal Issues (2): Who can refuse life-sustaining treatment for an unconscious patient? Karen’s guardian (her father) could refuse it on her behalf, IF that is what she would have wanted. The problem was that Karen never specified what she would have wanted under these circumstances. The court nevertheless allowed her father to choose what he thought she would have wanted, and her respirator was removed.

6. Karen Ann Quinlan Accident: 1975 Legal Case: 1976 Died: 1985

7. Nancy Beth Cruzan Accident: 1983 Legal Cases: 1987-1990 Died: 1990 At 26-years-old, she was in an auto accident that left her in a persistent vegetative state. Like Quinlan, she did not die when removed from the respirator, but continued to breathe and was placed on a feeding tube. After four years, her parents requested to terminate her artificial nutrition and hydration. Her case was heard by the U.S. Supreme Court in 1990.

8. Cruzan: The Supreme Court Case There is no moral or legal difference between removing someone from a respirator and removing their feeding tube. Both types of treatment can be rejected by patients or their decision- makers. There must be clear evidence that the patient would not have wanted life- prolonging treatment. The Cruzans subsequently presented such evidence, and Nancy’s feeding tube was removed in December of 1990. She died later the same month.

10. Terry Schiavo Accident: 1990 Legal Cases: 1998-2005 Died: 2005 In 1990, at 26-years-old, she suffered severe brain damage when her heart stopped beating, depriving her of oxygen. She went into a coma that later became a PVS. She was placed on a respirator, but like Quinlan and Cruzan, she continued to breathe on her own when it was removed. A feeding tube was inserted. In 1998 her husband filed a legal petition to have her feeding tube removed, saying that his wife had told him before her medical crisis that she would not want to be artificially kept alive in such a situation. Her parents fought this request.

11. Terri Schiavo, Continued Accident: 1990 Legal Battle: 1998-2005 Died: 2005 In 2000, a Florida judge ruled that Schiavo was "beyond all doubt" in a persistent vegetative state and that her husband could discontinue life support. Her feeding tube was removed and reinserted several times between 2001 and 2005, as the case gained media attention. In March 2005, her feeding tube was removed for the last time, and she died two weeks later of dehydration.

12. Planning for Future Health Care Decisions: Who Should Decide for You? What Should be Done? Three Approaches 1.Silence and assumptions 2.Conversations but no documents 3.Conversations and advance directives

13. “I’ll leave it for my family to decide.” Who will decide? 1.Guardian by court appointment 2.Spouse 3.Adult children 4.Parents 5.Adult siblings 6.Other relatives or friends Risks of this approach: 1.Deciding with no information is hard 2.Deciding under these circumstances is hard 3.Risk of disagreement 4.Legacy of bitterness

14. “I’ll tell them what I want ahead of time.” Who will decide? 1.Guardian by court appointment 2.Spouse 3.Adult children 4.Parents 5.Adult siblings 6.Other relatives or friends Risks of this approach: 1.Memories of conversations can fade 2.People may have conflicting views of what you said 3.You may have changed your mind 4.Doctors would be reassured of your choice if it were written in a document

15. Best Option: “I’ll tell them what I want and make an advance directive.” 1.Don’t wait. 2.Talk with your family and friends about your preferences. 3.Document your choices in a legally valid way.

16. Two Types of Advance Directives Durable Powers of Attorney for Health Care Decisions: Deciding who decides Living Wills Deciding what will be done Designates someone to decide for you when you cannot decide for yourself Your “health care agent” will make decisions based on: 1.Your know wishes 2.Your best interests if your wishes are unknown or unclear States whether you want certain kinds of treatment under certain conditions. Follows and “if … then” model: 1.If I lose capacity and I am in [stated condition], then 2.I do not want [stated interventions, such as CPR, respirator, or a feeding tube]. (Or I do request aggressive interventions.)

17. Planning for an Advance Directive: Who is Your Health Care Agent? Selection and scope of authority is up to you. You can name a family member or someone else. This person has the authority to ensure that doctors and other health care providers give you the type of care you want, and that they do not give you treatment against your wishes. Pick someone you trust to make these kinds of serious decisions and talk to this person, to make sure he or she understands and is willing to accept this responsibility.

18. Planning for an Advance Directive: What Do You Want? Examples of the types of treatment you might decide about are: –Life support, such as breathing with a respirator, –Efforts to revive a stopped heart or breathing (CPR), –Feeding through tubes inserted into the body, and/or, –Medicine for pain relief. Decision to forgo treatment is carried out if two physicians certify: –Terminal condition –End-stage condition –Persistent vegetative state

19. Writing Your Advance Directive: 1.Prepare the document: You can have a lawyer assist you, use a sample form, http://www.oag.state.md.us/Healthpo l/AdvanceDirectives.htm. or write your own. 2.You must have two witnesses, neither can be your health care agent. 3.Give a copy to your primary doctor, your health care agent, and your family. Consider a wallet card. 4.Review and revise it regularly.

20. Dying on Our Own Terms * Acknowledgements: I am grateful to Jennifer Pike for her assistance. These slides rely in part on Jack Schwartz’s helpful presentation on the MD OAG’s website.