Ethics at the end of life

Ethics at the end of life Brian Hiestand MD, MPH Assistant Professor, Dept. of Emergency Medicine Vice Chair, OSU Ethics Committee

Case Presentation • 86 year old female from hospice with history of NHL presents after choking on a grape • Grape expelled in route, but patient still tachycardic, although in no distress • Family is present, including the daughter who is the medical POA, with the DNR-CC in hand

Case Presentation • What’s the legal thing to do? • What’s the ethical thing to do? • Is there a difference? • Where does the family fit in?

Baseline Terms • Ethics – the application of values and moral rules to human behavior • Flexible • Case based • Law – • Inflexible, adversarial • Based on unalterable directives

Baseline Terms • Both law and ethics evolve, incorporate societal values, and form the basis for health care policy

Baseline Terms • Autonomy – the right of a competent person to direct their own care • Does not have to be rational, sensible, or agreeable • US Supreme Court 1914, Schloendorff v. Society of New York Hospital “Every human being of adult years and sound mind has a right to determine what shall be done with his own body.”

Baseline Terms • Power of attorney – in the setting where the patient is no longer competent, the POA is empowered to make health care decisions • While the patient has capacity, the POA has no right to make decisions for the patient • Healthcare POA is different than financial POA

Historical Perspective • Karen Ann Quinlan 1975 – anoxic brain injury leading to persistent vegetative state • Initially vent dependant, the parents asked the physician to withdraw the vent, but he refused • In 1976, citing the Constitutional right of privacy, the New Jersey Supreme Court appointed Mr. Quinlan the guardian and ordered the withdrawal of ventilator care

Historical Cases - Quinlan • Karen Quinlan survived the initial withdrawal of the ventilator and was transferred to a nursing home, where she later succumbed to pneumonia • Karen’s right to privacy, when weighed against the interests of the state, favored the Quinlan family

Historical Cases - Cruzan • Nancy Cruzan, 1983 – MVA, significant brain injury, PEG tube placed. NOT vent dependant • Later that year, the parents requested the removal of the PEG. • The Missouri Supreme Court refused to allow this, as there was a living will statute in Missouri, but Ms. Cruzan had not established one. Available testimony from a previous roommate was deemed insufficient to allow withdrawal of nutrition

Historical Cases - Cruzan • The US Supreme Court upheld the ruling in 1990, stating that due process was not violated by the requirement of either "clear and convincing, inherently reliable evidence“ or a living will when such a statute exists • A family member’s statement, in absence of clear and convincing evidence, is not “automatic assurance that the view of close family members would necessarily be the same as the patient's would have been had she been confronted with the prospect of her situation while competent."

Historical Cases - Cruzan • Later that year, further evidence of Cruzan’s wishes were discovered, and the Missouri courts allowed the withdrawal of nutrition • Nancy Cruzan died two weeks later

Historical Cases - Schiavo • Terri Schindler-Schiavo, 1990 – cardiac arrest with resultant anoxic injury. Not vent dependant. • 1993 – Terri’s parents file suit to have Michael removed as guardian. Case dismissed

Historical Cases - Schiavo • 1998 – Husband petitions for feeding tube removal • 2000 – District court allows withdrawal • 2001 – Appeals court allows withdrawal • April 2001 – Both Florida and US Supreme Courts refuse to intervene, tube is removed on April 24th

Historical Cases - Schiavo • April 26, 2001 – another district judge orders feeding to resume • Oct 2002 – after a year of multiple appeals, the parents’ lawyer alleges abuse by the husband was responsible for her brain damage, based on a bone scan from the early 90’s. This would later be refuted on autopsy

Historical Cases - Schiavo • 2005 – US Congress intervenes to refer case to Federal Courts. Federal Court refuses to intervene, finding no objectionable actions by the state courts • Ms. Schiavo eventually dies of dehydration. • Key finding – in Florida, a written Living Will is not required to convey end of life decisions

Case Law Summary • The state does not have an interest in keeping people alive against their advance directives • Guardian / family can be sufficient evidence of desired wishes in the absence of specific advance directives

State law • In May of 1999, the state of Ohio enacted a law implementing a standard DNR provision • The goal was to provide commonality and portability of a patient’s DNR status, regardless of health care system

DNR-CC • Do not resuscitate – comfort care • By state law, the only care permissible is that which provides comfort • Narcotics, benzodiazepines, positioning, suctioning, splinting, control of bleeding • Cannot: fluid bolus, any other life prolonging therapies • Obviously: do not intubate, do not defibrillate, no CPR

DNR-CC arrest • In general, full measures up to the point of cardiac or pulmonary arrest • Then, comfort measures only (?) • Controversies are legion • Cardioversion of non-fatal dysrhythmia • Intubation in respiratory distress • BiPAP / CPAP • What about going to the OR?

Living Will • Takes effect when the patient enters a vegetative state or in case of medical futility • Infrequently used for intended purposes • Can represent a patient’s attitude towards end of life issues

Medical Futility • In some cases, CPR and other critical care efforts have no reasonable chance of prolonging life or providing benefit to the patient – i.e. they are futile

Medical Futility • However, the definition of futility depends on the end goal • Discharge to home intact • Survival to ECF • Pain / symptom free life

Medical Futility • Physicians do not have to provide medically futile care • A neurosurgeon does not offer surgery to every brain tumor patient • Not every moribund patient should be offered CPR • Discuss with patient / family • Goals • Limitations of therapy • Consequences of therapy

Conflicts • DNR and the patient • This is a complex and emotionally laden issue, and many patients and physicians do not fully understand the State Designations • Families are generally less clear on what these designations entail

Conflicts • DNR and the patient • A patient with capacity can revoke the DNR at any time • Often, we are in a position to coerce the patient • “Are you sure you don’t want us to help your breathing by putting you on the breathing machine?” vs. “Do you want us to put you on life support?”

Conflicts • DNR and the patient • Remember, if you change the patient’s code status after talking with the patient, document the conversation clearly

Conflicts • DNR orders and the family • Make every attempt to reconcile the family’s perception, but remember that the DNR order represents the patient’s autonomous wishes • Compassionate persuasion • Burden of decision making often the issue • In some situations, we can ask them to accept our making the decision and relieve that burden

Conflicts • DNR and the POA • Often, the POA is the one that signed the DNR order with the physician • If so, ask what has changed • If the patient has signed the DNR, and the POA wants something different, then it gets complicated • Try to get the POA to realize that they need to represent what the patient would have wanted, using the DNR to suggest what the patient wanted

Back to the case… • Our patient with terminal NHL from hospice who choked on a grape is found to be in wide-complex ventricular tachycardia, still with a pulse • No respiratory distress or chest pain • Slightly hypotensive (90 systolic) • What next?

Options • Shock? • Chemical cardioversion? • Vagal maneuvers?

What we did • Nothing, really • We gave her scheduled pain medications • We admitted her to Hematology for comfort measures • Her shock was getting worse as she went up to the floor

Rationale • Any therapy given would likely be life-prolonging • Shock – high risk of discomfort • Drugs – relatively low risk of discomfort (IV access was established en route) • However…

Rationale • Given that the patient was in hospice for terminal NHL, there was little reason to provide life prolonging therapy, as long as there was no accompanying discomfort • Without the grape, ventricular tachycardia would have been an undiagnosed terminal event • Even in the setting of accompanying discomfort (say, rupturing AAA and peritonitis), treat the discomfort • Comfort care should be part of every patient’s regimen

Further End of Life Care • Withdrawal from ventilator • No evidence for or against extubation vs. terminal wean • Both analgesics and anxiolytics are helpful • Anticholinergics, antipsychotics may be adjunctive in the right situation

End of Life Care • To drip or not to drip… • If already on an analgesic drip, continue • Otherwise, intermittent dosing will suffice • Adjust dosing for comfort • Primary intention is to relieve suffering • Respiratory depression is an acceptable side effect in these situations • Up-titrating to hasten death is not ethical nor permitted

Organ Donation • As medical technology improves, more people are being considered for transplant • This has lead to an increasing demand for donor organs

History of Organ Donation • First cornea – 1905 • First living donor kidney – 1954 • First post-mortem kidney- 1962 • First liver – 1967 • First heart - 1967 • 1981 – First heart – lung • 1992 – first xenotransplantation, baboon liver

History of Brain Death • Prior to 1967, organs were harvested from individuals that sustained cardiac death • The advent of mechanical ventilation had produced an increasing number of patients that sustained cardiac function without neurologic or respiratory function

History of Brain Death • In 1968, Harvard Medical School convened a committee to explore the issue of these patients with irreversible coma, coining the term ‘brain death’ • 1981 – The President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research refined a "whole brain standard" which became the basis for the Uniform Determination of Death Act.

Definition of Brain Death • Unresponsiveness, lack of receptivity, the absence of movement and breathing, the absence of brainstem reflexes. • Rule out medical conditions that may confound the clinical assessment • Severe acid-base, electrolyte, or endocrine • Hypothermia • Absence of intoxication

Establishing Brain Death • In the absence of brain stem function, spinal reflexes can still create movement • Trunk muscles may contract, giving the appearance that the person is trying to rise • Arms may rise, facial twitching, head may turn side to side

Establishing Brain Death • Clinical examination • Brainstem reflexes • Doll’s eyes, calorics • Apnea testing • The absence of respiratory drive with a PaCO2 of 60 mm or 20 mm above patient’s baseline

Establishing Brain Death • Confirmatory testing is optional in the US, but required in Europe, Central and South America, and Asia • Cerebral angiography / MRA • EEG • Transcranial Doppler ultrasound • Nuclear imaging

Federal, State and local authorities • By federal law, the family of every potential donor must be informed of their option to donate organs or tissues or not to donate • If you, or your consultants, declare someone brain dead, you cannot withdraw upon them until LOOP has had a chance to talk with the family

Organ donor registry • In 2000, Ohio enacted a law stating that the individual’s preference, as obtained by the BMV when the driver’s license is renewed, trumps the family preference • As of July 2002, there is an online registry accessible by LOOP with everyone who has opted to be an organ donor

Organ donor registry • Controversies • Non-English speakers • Minors – need witnesses for the consent • Informed consent provided by the BMV • To opt in, all you have to do is say yes at the BMV • To opt out, you have to download a form and mail it in

Non-heart beating donors • In the fledgling years of organ retrieval, kidneys were removed immediately after their hearts stopped beating

Non-heart beating donors • With the advent of the concept of brain death, asystolic donors fell out of favor • As the definition of a viable transplant candidate has expanded, the number of people on the waiting list has far surpassed the number of available organs

Non-heart beating donors • In 2002, there were 80,000 people waiting for organs • 24,000 transplants were performed from: • 6,081 dead donors • 6,499 live donors • The first year that living donors outnumbered dead donors

Ethics at the end of life