Advance Directives (mostly)

1. Advance Directives(mostly) Christopher Kearney MD Director of Palliative Medicine MedStar Union Memorial Hospital February 2, 2013

2. “How gravely ill becomes dying”(why it will always be difficult) “The widespread and deeply held desire not to be dead” Medicine’s inability to precisely foretell the future “If death is the only choice, many patients who have only a small amount of hope will pay a high price to continue the struggle” Finucane T. JAMA.1999;282.

3. History Informed Decision-Making • Hippocratic oath makes no mention of obligation to converse with patients. ( Physician duty to follow regiment that will benefit patient; … led to trust, obedience, and then cure) • Prohibition against touching without permission originated from ancient Germanic tradition forbidding torture of free men. • Plato in Laws describes winning the patient’s confidence before prescribing therapy

4. Informed Consent/Informed Refusal • In the 19th century, Thomas Percival’s Medical Ethics did not mention right to choice, but tells us when patient refuses, one should not force treatment, as it would likely complicate treatment. • AMA’s first Code of Ethics 1847: “patients obedience should be prompt and implicit”

5. History of IC/IR • In 1914 Justice Benjamin Cardozo wrote “Every human being of adult years and sound mind has a right to determine what shall be done with his own body” • In 1957, Salgo v Stanford: the term informed consent first used and uniformed consent not considered valid consent in case of physician withholding facts necessary for intelligent decision making.

6. Competent patient • AMA Principles 1957 “A surgeon is obligated to disclose all facts relevant to the need and performance of the operation” • Uniform recognition by American courts that competent patient has informed right to refuse treatment, even if it is life-sustaining.

7. Incompetent patient • Quinlan v Supreme Court NJ – Pt had right to refuse ventilator support, and her parents could act as her “surrogates” making “substituted judgment” • Barber v Superior Court - “ordinary” vs “extraordinary” language dropped in favor or “benefit and burden” (if burden outweighs benefit, treatment can be forgone)

8. 1990-1993 Cruzan case • Right to refuse • Advance directive / Surrogates

9. Maryland Health Care Decisions Act 1993 • Recognized status of Advance Directive • Appoint Health Care Agent (previously Power of Attorney for Health Care) • Create Health Care Instructions (previously Living Will) • Futile Care “MD’s not required to provide treatment which is medically ineffective”

10. Md HCDA 1993 • Defined hierarchy of surrogate decision-making and linked to MD certification that patient is: 1) Terminal 2) Persistent vegetative state 3) End stage condition

11. Hierarchy for Decision-Making • Guardian • Health Care Agent • Spouse • Adult children • Siblings • Other relatives • “Friends”

12. Terminal Condition • Incurable, progressive disease • No expectation of recovery even with life-sustaining treatment • Death “imminent”

13. Vegetative State • Awake with no evidence of awareness • Brainstem function preserved • Persistent for 30 days

14. End-Stage Condition • Progressive • Irreversible • No effective treatment for underlying condition • Advanced to the point of complete physical dependency • Death not necessarily “imminent” • Ie. advanced dementia

15. Medical Ineffective Treatment • A physician need not provide treatment that is believed to be medically ineffective or ethically inappropriate. Medically ineffective treatment is defined as treatment that, as certified by the attending and a consulting physician, to a reasonable degree of medical certainty, will neither prevent or reduce the deterioration of the health of an individual nor prevent the impending death of an individual.

16. Imminent death • Today? Tomorrow? Next week? Next month? • Not define by legislature • Hospice criteria

17. Who needs it?The “Surprise Question” Would you be surprised if your patient died in the next six months? Joann Lynn

18. Approaches to Decision-Making • Silence + assumptions • Talk but no documents • Talk + advance directives

19. “ Leave it to my Family to Decide” • Default surrogates have limited power for decision-making • Permitted to withhold life-sustaining treatment only in the three conditions as certified by MD • Risk of disagreement (equal surrogates), burden, legacy of bitterness

20. Talk…no document • Differing memories • Family may not be thinking as one • “Gift” to leave clear direction, sparing loved ones difficult decisions in stressful times

21. Health Care Agents • Selection, scope of authority up to individual • Agent to decide based on • “Wishes of the patient,” unless “unknown or unclear” • Then, “patient’s best interest”

22. Health Care Instructions • Follows “If … then …” model • “If I lose capacity and I’m in [specified conditions], • Then no CPR, ventilator, feeding tube, etc.” • Or: aggressive interventions requested • Health Care Instructions triggered when two physicians certify: • Terminal condition • End-stage condition • Persistent vegetative state

23. Decision- making capacity • Understanding information • Reflection with personal values • Make decision • Communicate choice

24. Determining Capacity • Generally, capacity addressed with those closest to the pt, resorting to court neither necessary nor desirable. • Judicial involvement only in absence of acceptable surrogate, disagreement among surrogates, complex capacity issues

25. Mr. Green • 82 year-old widower, 3 children • Former smoker, had end-stage lung disease • progressive Alzheimer’s Dementia • Nursing home resident • Third admission with respiratory failure • No Advance Directive

26. Mr. Green • Bipap for three days, not eating • Daughter and son local, son distant • No decisions re: ICU transfer, “code status”, intubation

27. Family Disagreement • Elder daughter: “Dad was a fighter, do everything to keep him alive.” • Son and younger daughter: “Dad wouldn’t have wanted this, and he’s suffering. It’s time to stop.” • What do we do? • Who decides?

28. Hospital setting • Question of appropriate aggressiveness of care (We can do it , but should we?) • Consent is assumed, diagnostic testing and therapy easily available, so often applied first, evaluated later. • Patient at great disadvantage and beneficence predominates over autonomy

29. Comfort Care Dialogue In light of the patient’s status, prognosis, and available treatment options, the goals of care need to be evaluated. DOES THE PATIENT HAVE DECISION MAKING CAPACITY? Patient DOES have decision making capacity Patient does NOT have decision making capacity and is not expected to regain it. Clinical assessment of incapacity by 2 physicians must be documented in progress notes. Advise the patient of the consequences, risks, benefits and alternatives. Details MUST be documented in progress note section of chart

30. Comfort Care Dialogue Patient does NOT have decision making capacity and is not expected to regain it. Clinical assessment of 2 physicians must be documented in progress notes. Patient has appointed a Healthcare Agent Patient has NOT appointed a Healthcare Agent Advise the agent of the consequences, risks, benefits and alternatives. MUST be documented in progress note section of chart 2 Physicians MUST document in chart: end-stage condition, terminal condition and/or persistent vegetative state to utilize the following options.

31. Comfort Care Dialogue 2 Physicians MUST document in chart: end-stage condition, terminal condition and/or persistent vegetative state to utilize the following options. Family and Physicians obligated to follow instructions. Patient has a living will or health care instructions. Yes No A surrogate is available to make decisions Yes Surrogates guided by patient’s best interest. No No known surrogate or same level surrogates disagree Ethics consultation required. 2 MD’s certify that LST is medically ineffective

32. Health Care Agent and Health Care Instructions • HCA and Physicians obligated to follow patient’s known wishes • Best to appoint agent and make certain wishes known

33. Maryland Formalities • Two witnesses • Over 18 years of age, not the chosen agent • Notary no required • Statutory form optional -- • Oral AD can be documented in patient record • Advance Directives generally honor all states

34. Changing or Revoking an Advance Directive • Presumed valid, no expiration • Only patient may change/revoke • Review • Agents still available? • Contact information current? • Care preferences the same?

35. Pitfalls • Advance directive done but limited discussion I know that’s what it says, but she didn’t understand.” • Using ambiguous language • “No heroic measures.” • Treatment decisions may change over time • Mexican proverb: “The appearance of the bull changes, once you enter the ring.”

36. Making It Work in the Real World • Copies to HCA,family/friends, doctor and hospital • MOLST

37. Maryland MOLST • Medical orders for life sustaining treatment • Valid everywhere in the state. • Are not AD’s and Do not replace AD’s • Enduring, portable NP or Physician Orders

38. More Information: Attorney General’s Office • Forms: call 410-576-7000 • Forms and other information via the Internet: • www.oag.state.md.us • Then click on “Advance Directives/Living Wills” • Much other material on Maryland law and policy • www.oag.state.md.us • Then click on “Health Policy • Google MOLST

39. The Troubled Dream of Life Daniel Callahan “A medicine that embodies an acceptance of death would represent a great change in the common conception, and might set the stage for viewing the care of dying people not as an afterthought when all else has failed, but as one of the ends of medicine. The goal of a peaceful death should be as much a part of the purpose of medicine as the promotion of good health. That means medicine must abandon the modern cultic myth that in the cure of disease lies the cure of death.“