Legal Issues in End-of-Life Care

Advance Directives(mostly) Christopher Kearney MDDirector of Palliative MedicineMedStar Union Memorial HospitalFebruary 2, 2013

How gravely ill becomes dying(why it will always be difficult)The widespread and deeply held desire not to be deadMedicines inability to precisely foretell the futureIf 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;282.22History Informed Decision-MakingHippocratic 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

In the 19th 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 RefusalHistory of IC/IRIn 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.Competent patientAMA 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.

Incompetent patientQuinlan 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)1990-1993Cruzan case

Right to refuse

Advance directive / Surrogates

8Maryland Health Care Decisions Act 1993Recognized status of Advance DirectiveAppoint 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 ineffectiveMd HCDA 1993Defined hierarchy of surrogate decision-making and linked to MD certification that patient is: 1) Terminal 2) Persistent vegetative state 3) End stage condition

10Hierarchy for Decision-MakingGuardianHealth Care AgentSpouseAdult childrenSiblingsOther relativesFriends11Terminal ConditionIncurable, progressive disease

No expectation of recovery even with life-sustaining treatment

Death imminent

12 Vegetative StateAwake with no evidence of awareness

Brainstem function preserved

Persistent for 30 days13End-Stage ConditionProgressiveIrreversibleNo effective treatment for underlying conditionAdvanced to the point of complete physical dependencyDeath not necessarily imminentIe. advanced dementia14Medical Ineffective TreatmentA 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.Imminent deathToday? Tomorrow? Next week? Next month?

Not define by legislature

Hospice criteriaWho needs it?The Surprise QuestionWould you be surprised if your patient died in the next six months? Joann Lynn17Approaches to Decision-MakingSilence + assumptions

Talk but no documents

Talk + advance directives18 Leave it to my Family to DecideDefault 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 Talkno documentDiffering memories

Family may not be thinking as one

Gift to leave clear direction, sparing loved ones difficult decisions in stressful times20Health Care AgentsSelection, scope of authority up to individual

Agent to decide based onWishes of the patient, unless unknown or unclearThen, patients best interest

21Health Care Instructions Follows If then modelIf I lose capacity and Im in [specified conditions], Then no CPR, ventilator, feeding tube, etc.Or: aggressive interventions requestedHealth Care Instructions triggered when two physicians certify:Terminal conditionEnd-stage conditionPersistent vegetative state22Decision- making capacityUnderstanding information

Reflection with personal values

Make decision

Communicate choice

23Determining CapacityGenerally, 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 issues24Mr. Green82 year-old widower, 3 childrenFormer smoker, had end-stage lung diseaseprogressive Alzheimers Dementia Nursing home residentThird admission with respiratory failureNo Advance Directive25Mr. GreenBipap for three days, not eating

Daughter and son local, son distant

No decisions re: ICU transfer, code status, intubation26Family DisagreementElder 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?27Hospital settingQuestion 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

28Comfort Care DialogueIn 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 capacityAdvise the patient of the consequences, risks, benefits and alternatives. Details MUST be documented in progress note section of chartPatient 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. Comfort Care DialoguePatient 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 AgentPatient has NOT appointed a Healthcare Agent2 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 chartComfort Care Dialogue2 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 disagreeA surrogate is available to make decisionsNoYesYesNoFamily and Physicians obligated to follow instructions.Surrogates guided by patients best interest.Ethics consultation required. 2 MDs certify that LST is medically ineffectiveHealth Care Agent and Health Care Instructions HCA and Physicians obligated to follow patients known wishes

Best to appoint agent and make certain wishes known32Maryland FormalitiesTwo witnessesOver 18 years of age, not the chosen agentNotary no required

Statutory form optional -- Oral AD can be documented in patient recordAdvance Directives generally honor all states

33Changing or Revoking an Advance DirectivePresumed valid, no expiration

Only patient may change/revoke

ReviewAgents still available?Contact information current?Care preferences the same?34 PitfallsAdvance directive done but limited discussionI know thats what it says, but she didnt understand.

Using ambiguous languageNo heroic measures.

Treatment decisions may change over timeMexican proverb: The appearance of the bull changes, once you enter the ring.35Making It Work in the Real WorldCopies to HCA,family/friends, doctor and hospital

MOLST

36Maryland MOLSTMedical orders for life sustaining treatment

Valid everywhere in the state.

Are not ADs and Do not replace ADs

Enduring, portable NP or Physician OrdersMore Information: Attorney Generals OfficeForms: call 410-576-7000Forms and other information via the Internet:www.oag.state.md.usThen click on Advance Directives/Living WillsMuch other material on Maryland law and policywww.oag.state.md.usThen click on Health PolicyGoogle MOLST38The 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.