Navigating Advance Directives Charles Hite

1. Navigating Advance Directives Charles Hite Director of Biomedical and Research Ethics, Retired Carilion Clinic

2. Objectives • Review the definition of ethics and the rise of bioethics in the modern era • Discuss basic principles guiding ethical practices in health care, especially end-of-life care • Explain the role -- and limitations --  of advance directives in guiding health care

3. What Is Ethics? • Ethics is the study of how to determine the best course of action when faced with conflicting moral choices. These choices often involve moral principles, religious beliefs or professional guidelines. In health care settings, patients, families and providers sometimes face difficult decisions that involve personal convictions about life, health, suffering and death. Ethical problems or dilemmas have no single correct answer. The nature of these problems is that valid arguments can be made for different courses of action and different outcomes.

4. In other words…. What should I do?

5. Birth of Modern Bioethics Dates to the Early 1960s • Medical Technology – Dialysis Committees • Changes in Medicine – Rise of the Specialist • Social Climate – Civil Rights, Consumerism • Medical Research Scandals - Tuskegee • Congress Mandates Research Review Boards

7. Ethical Principles • Respect for Persons: Autonomy, Privacy • Beneficence • Non-Maleficence • Justice

8. Ethical PracticesFor Every Patient Encounter • Assessing Decision-Making Capacity • Providing Informed Consent • Respecting Confidentiality and Privacy • Truth telling and Shared Decision- Making

10. End of life in America Today • Modern health care • only a few cures • live much longer with chronic illness • dying process also prolonged • > 90% Protracted Life Threatening Illness • predictable steady decline with a relatively short “terminal” phase • cancer • slow decline punctuated by periodic crises • CHF, emphysema, Alzheimer’s-type dementia

11. Slow decline, periodic crises, sudden death

12. Factors Influencing EOL Care • Advances in technology • Aging Population • Lack of Professional Knowledge • Disputes about decision making • Cultural/Religious/Spiritual Values • Court Cases/Fear of Litigation • Reluctance to Discuss Death

13. Denial of Death • What tormented Ivan Illych most was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill, and that he need only keep quiet and undergo a treatment and then something very good would result.-- Leo Tolstoy, The Death of Ivan Illych

14. Ethical Issues in End-of-Life Care Foregoing Life-Sustaining Treatment: Killing or Allowing to Die? • Karen Ann Quinlan: 1976 • Dax Cowart: 1978 • Elizabeth Bouvia: 1986 • Nancy Cruzan: 1990 • Hugh Finn: 1998 • Terri Schiavo: 2005

16. Withholding/Withdrawing • Patients have right to refuse treatment or ask that it be stopped, even if life-sustaining • Surrogates can also ask to stop or withdraw treatment if based on patient’s wishes • Refusing or stopping life-sustaining treatment is not considered euthanasia • Supreme Court’s 1990 Cruzan decision upheld this right but also said state’s may set standards about patient wishes

17. More Ethical Issues …. • Overconfidence in CPR • Artificial Food and Water: Must This Always Be Given? • What is “Futile” Treatment? • Who Decides When the Patient Can’t? The Use and Abuse of Advance Directives

18. CPR/DNR Facts • Fewer than 10-15 % of all hospitalized patients survive CPR and return to their previous state. Most live a short period but still die in the hospital. • Almost no one with cancer who has CPR survives to leave the hospital • Only 1 to 4 % with multiple chronic illnesses survive hospital stay

19. Artificial Nutrition/Hydration Facts • Most appropriate when patient has temporary condition that prevents swallowing • Can help patients regain strength until eating and drinking by mouth is possible • Possible burdens: infections, restraints, pain • May not prolong survival for patients with advanced illness, dementia • Refusal does not mean “starving to death”

20. Ethical Issues: Medical Futility • Interventions that will not achieve the intended result • Conflicts re: benefit/burden of treatment • Often involve communication failures • Limits of usefulness of prognostic data and policies

21. Ethical Issues: Advance Directives • Documents or oral declarations that allow patients to participate in medical decision-making when they have lost the ability to make or communicate decisions about their own health care.

23. Va. Health Care Decisions Act • Provides for “written advance directive authorizing the providing, withholding or withdrawal or life-prolonging procedures” when there is a terminal diagnosis. Also now allows other instructions to be given about non-terminal treatment. • Provides for appointment of an “agent to make health care decisions” under circumstances stated in directive when patient is incapable

24. Living Will Language • If at any time my physician determine that I have a terminal condition where the use of life-prolonging procedures would only prolong the dying process, I direct that life -prolonging procedures be withheld or withdrawn. I also direct that I be permitted to die naturally with only administration of medication or the performance of any medical procedures deemed necessary to provide me with comfort care or to alleviate pain.

26. Changes in Advance Directive Law • Give Instructions about All Forms of Health Care, Not Just End of Life Care • Second Physician Not Needed to Declare Incapacity In Some Cases • Agent Can be Given Power to Make Decisions over Patient’s Objections • Allows Patient to Make a “Ulysses Contract” • Only Person Who Signs DDNR May Revoke • Added A New Surrogate: “Friend” of Patient

27. Who Makes Decisions for Patient? • Durable Medical Power of Attorney • Legal Guardian • Spouse • Adult Children • Parents • Adult Brothers and Sisters • Other Blood Relatives • Friend who knows patient values

28. 5 Reasons Living Wills Don’t Work • It sounds like a good idea but…. Only 20 to 30 percent have them….Most prefer to let family decide. • It’s nearly impossible to predict future medical preferences. • The format and language of living wills is either too broad to be helpful or too complex to allow patient’s to articulate what they really want. • Living wills aren’t around when you really need them. • Living wills apply in limited circumstances; surrogates and providers don’t do a very good job interpreting (or even paying attention to) living wills. See: A. Fagerlin and C. Schneider, “Enough: The Failure of the Living Will,” Hastings Center Report 34, no. 2 (2004): 30-42

29. Rand Study for HHS “There is little connection between the completion of an Advance Directive and subsequent appropriate outcomes of care such as improved communication…, greater concordance between patient preferences and proxy reports of patient preferences, reductions in aggressive care, appropriate palliation, or preferred place of death.” Literature Review on Advance Directives prepared for Office of Disability, Aging and Long -Term Care Policy, U.S. Dept of Health and Human Services, June 2007

30. More from Rand Study “ Generally, the research suggests that even when Advance Directives are executed, physicians are frequently unaware of them, ADs are not easily available to surrogates when needed, ADs are too general and/or are inapplicable to clinical circumstances, and/or they are invoked late in the dying process or are at times overidden by providers and families.”

31. Impossible to Predict Future When people become incompetent and seriously ill, …their interests may radically change. With their reduced mental and physical capacities, what was once of extreme importance to them no longer matters, while things that were previously of little moment assume much greater significance. ...It is difficult, if not impossible, for competent individuals to predict their interests in future treatment situations when they are incompetent because their needs and interests will have so radically changed. As a result, the directives they issue for future situations of incompetency, though they reflect their current needs and interests, may have little relevance to their needs and interests once they become incompetent. • Dresser and Robertson; Law, Medicine and Health Care, 17 (1989): 234-244

32. What’s the Answer? Advance Care Planning: A process to “help adults plan for unexpected event, such as sudden illness or injury, that renders them incapable of making healthcare decisions and from which they are unlikely to recover.” This process provides an opportunity for adults to express goals, values, and beliefs about living well and to offer guidance to those who will be making healthcare decisions on their behalf. Respecting Choices: Advance Care Planning Facilitator Course, Chapter 2, 2007

33. Advance Care Planning Initiating a discussion about end-of-life issues for patients with chronic, progressive illness and their families need not focus initially on making decisions or on forgoing treatment. It can be a time simply to explore attitudes and provide information. Beginning advance care planning early in the course of chronic, progressive illness can provide opportunities for ongoing and gradual conversations to slowly engage patients and their loved ones in participating in the planning process. Respecting Choices: Advance Care Planning Facilitator Course, Chapter 4 2007

34. What Tool Is Effective? Physician Orders for Scope of Treatment: The POST form is an advance care planning document targeted to seriously ill patients that can travel with the patient. The wishes of the patient are translated into physician orders.

36. National Quality Forum Preferred Practice “Compared with other advance directives programs, POLST more accurately conveys end-of-life preferences and yields higher adherence by medical professionals (p 43).” National Quality Forum. A National Framework and Preferred Practices for Palliative and Hospice Care Quality: A Consensus Report. Washington, D.C.: National Quality Forum, 2006.

37. Obstacles to Discussions About End-of-Life Care • Patient waiting for physician to initiate • Poor communication by medical personnel • Family members feel “guilt”, “giving up” • Cultural, Religious beliefs

38. Key Points • Document wishes about end-of-life care and discuss with family, physician • Good advance care planning is an ongoing process, not a single event • Be willing to try time-limited trial of treatment to meet goals, then stop if goals aren’t met