Slide 1

Christopher Kearney MD Director of Palliative Medicine MedStar Union Memorial Hospital February 2, 2013 Slide 2 How gravely ill becomes dying (why it will always be difficult) The widespread and deeply held desire not to be dead The widespread and deeply held desire not to be dead Medicines inability to precisely foretell the future Medicines 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 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. Slide 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 patients confidence before prescribing therapy Slide 4 In the 19 th century, Thomas Percivals 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. AMAs first Code of Ethics 1847: patients obedience should be prompt and implicit Informed Consent/Informed Refusal Slide 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. Slide 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. Slide 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) Slide 8 1990-1993 Cruzan case 1) Right to refuse 2) Advance directive / Surrogates Slide 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 MDs not required to provide treatment which is medically ineffective Slide 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 Slide 11 Hierarchy for Decision-Making Guardian Health Care Agent Spouse Adult children Siblings Other relatives Friends 11 Slide 12 Terminal Condition Incurable, progressive disease No expectation of recovery even with life-sustaining treatment Death imminent 12 Slide 13 Vegetative State Awake with no evidence of awareness Brainstem function preserved Persistent for 30 days 13 Slide 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 14 Slide 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. Slide 16 Imminent death Today? Tomorrow? Next week? Next month? Not define by legislature Hospice criteria Slide 17 Who needs it? The Surprise Question Would you be surprised if your patient died in the next six months? Joann Lynn Slide 18 Approaches to Decision-Making Silence + assumptions Talk but no documents Talk + advance directives 18 Slide 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 19 Slide 20 Talkno document Differing memories Family may not be thinking as one Gift to leave clear direction, sparing loved ones difficult decisions in stressful times 20 Slide 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, patients best interest 21 Slide 22 Health Care Instructions Follows If then model If I lose capacity and Im 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 22 Slide 23 Decision- making capacity Understanding information Reflection with personal values Make decision Communicate choice Slide 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 Slide 25 Mr. Green 82 year-old widower, 3 children Former smoker, had end-stage lung disease progressive Alzheimers Dementia Nursing home resident Third admission with respiratory failure No Advance Directive 25 Slide 26 Mr. Green Bipap for three days, not eating Daughter and son local, son distant No decisions re: ICU transfer, code status, intubation 26 Slide 27 Family Disagreement Elder daughter: Dad was a fighter, do everything to keep him alive. Son and younger daughter: Dad wouldnt have wanted this, and hes suffering. Its time to stop. What do we do? Who decides? 27 Slide 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 Slide 29 Comfort Care Dialogue In light of the patients 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 Advise the patient of the consequences, risks, benefits and alternatives. Details MUST be documented in progress note section of chart 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. Slide 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 2 Physicians MUST document in chart: end-stage condition, terminal condition and/or persistent vegetative state to utilize the following options. Advise the agent of the consequences, risks, benefits and alternatives. MUST be documented in progress note section of chart Slide 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. Patient has a living will or health care instructions. No known surrogate or same level surrogates disagree A surrogate is available to make decisions No Yes No Family and Physicians obligated to follow instructions. Surrogates guided by patients best interest. Ethics consultation required. 2 MDs certify that LST is medically ineffective Slide 32 Health Care Agent and Health Care Instructions HCA and Physicians obligated to follow patients known wishes Best to appoint agent and make certain wishes known 32 Slide 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 33 Slide 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? 34 Slide 35 Pitfalls Advance directive done but limited discussion I know thats what it says, but she didnt 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. 35 Slide 36 Making It Work in the Real World Copies to HCA,family/friends, doctor and hospital MOLST 36 Slide 37 Maryland MOLST Medical orders for life sustaining treatment Valid everywhere in the state. Are not ADs and Do not replace ADs Enduring, portable NP or Physician Orders Slide 38 More Information: Attorney Generals 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 38 Slide 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.