Ethics on Call - A Medical Ethicist Shows How to Take Charge of Life-and-Death Choices   by Nancy Neveloff Dubler and David Nimmons, 1992. Harmony Books, division of Crown Publishers, New York.

Review by Del Meyer, MD

Nancy Neveloff Dubler, graduate of Harvard Law School, joined Montefiore Medical Center in 1975 and founded Montifiore’s Law and Ethics Consultation Service, which she continues to direct.  She opines that the most important person in a hospital assuring you get the care you want may not hold a medical degree.  That person may be a lawyer (as is she), or a theologian, or a philosopher, or a social worker or a scientist holding the title of “bioethicist” or “medical ethicist” and is on staff “to protect the rights and promote the interests of the patient.”  Hospitalized patients are “vulnerable humans in an inhospitable world.”  In the old days, she reflects, when family doctors existed and Health Maintenance Organizations did not, life, death, and medicine were straightforward.  Modern technology, defibrillators, pacemakers, ventilators, dialysis, and a dozen stratagems that beat death from the door changed all that.  It can also keep a brain dead person hooked up to a machine in order to keep a bed of organs functioning.  Patients and families have a hard time intervening.  For instance, doctors say they can’t remove a ventilator from a 93-year-old comatose father if he never left specific instructions.  The family asks, “How could he have refused a machine he never even knew existed?”

Dubler observes that technological changes brought about legal ones.  Decision-making power has gradually been shifting from patients, families, and doctors to legislators, regulators, bureaucrats, attorneys, and judges.  But overriding policies disregard entirely the deepest values of those whose lives are at stake.  Medical decisions always rest on somebody’s value judgment.  “If you are aware and educated, the values will be yours; if not, they will be the values of others…But whose?  The impersonal policies of institutions…your family…your doctors and nurses?”  Dubler claims that this book is about empowerment and demystification…a road map to patient autonomy.

Dubler continues that “stunning medical advances of the late 20th century have far outpaced our human judgment in applying them…have carried us deep into uncharted moral territory.”  It has only been 20 years since a stream of legal cases have affirmed the individual’s rights to refuse treatment even if it meant dying.

“The notion that the legal system has a place in medicine is a peculiarly American notion, one unheard of by the family physician three decades ago and today still considered aberrant outside our country.”

Dubler gives us many anecdotal cases to illustrate a number of ethical and legal issues.  A patient declines a blood transfusion for religious reasons and signs all the appropriate “refusal of care” forms.  That the doctor and family disagree with his decision matters little; his own wishes were 100 percent clear.  So when this patient bled post op, the family petitioned the judge to order a transfusion required to save his life.  The judge, being unfamiliar with the law, unschooled in the issues, skittish about letting this patient choose death, and reflecting how he held his job through the political process, granted the pleas of the wife and family in favor of life.  This, Dubler feels, was the worst of all possible resolutions.  The blood was given, violating the patient’s deeply held religious convictions, and he died despite these efforts, but not the death he had wanted, violating, she says, his eternal soul.

Not only do judges get uncomfortable with medical decisions, but doctors get uncomfortable with legal decisions.  On April 15, 1975, a 21-year-old New Jersey college student, Karen Ann Quinlan, collapsed and was resuscitated after two 15-minute periods of apnea.  The year-long battle to remove the ventilator was explained in clear, legal logic.  However, the pulmonologists failed to do the usual daily evaluation of a ventilator patient – to determine the patient’s respiratory drive – so, after a year of legal maneuvering, when the ventilator was disconnected, Karen Ann Quinlan kept on breathing and did so until 1985.  If the pulmonologist had just done his job and weaned the patient, perhaps six or nine months earlier, the legal situation might have been different.

Dubler lists the bioethicist’s toolkit of philosophical and legal guidelines.  They are the principle of “beneficence” (promote the well-being of the patient), of “proportionality” (treatment should be offered only if the benefit outweighs the burden), of “respect for persons” (patients should be treated as autonomous beings, and if they cannot make choices, be protected by others), of “justice” (that all persons who are equal should be treated equally), of “self-determination” (adults capable of making decisions have the right to consent or refuse, even if the result is death), and “best interest” (those who cannot decide have the right to have decisions made for them which maximize their welfare).  The bioethicist in Dubler’s model, “does not make decisions, but rather helps doctors, nurses…understand the facts, identify the core principles, and apply larger principles to the very specific people they are treating.”

Dubler calls her field a subspecialty, without giving the specialty she is sub to, which probably reflects the prevailing idea of a prestigious cognomen.  However, she does provide a very readable volume with the literary help of David Nimmons (coauthor of seven books).  Although we may not be tuned into the legalese, it gives us a perspective on many of the issues we deal with daily.  And she gives us a large number of relevant facts.