End-of-life decisions present some of medicine's toughest ethical dilemmas. But these decisions have become routine: 70 percent of the 13,000 people who die in U.S. hospitals each year die after a decision has been made to remove life sustaining equipment.
Often, the decisions themselves are not as difficult as the thorny questions that precede them: who will decide for a patient who cannot make his own decision? And how will these decision-makers reach their conclusions?
End-of-life decisions are now governed by a hodge-podge of legal precedent and legislation, which varies from state to state and changes as state legislatures update their laws and as courts issue more decisions.
The lack of a widely accepted ethical and legal framework has worried Judge John Carroll Byrnes of the Baltimore City Circuit ,, Court since the day in 1986 when a Baltimore clergyman, with physicians and lawyers, appeared before him asking permission remove life support from his wife, Jacqueline Cole, who had been in a coma since suffering a massive stroke 41 days earlier.
Fortunately, Judge Byrnes was not prepared to grant permission. Six days later, Mrs. Cole woke up.
Currently, the Maryland General Assembly is considering bills clarifying the state's laws establishing requirements for a durable power of attorney for health care decisions, one of the common forms of substituted judgment. But Judge Byrnes and others who have studied these tough choices would like to see a different kind of bill -- one that would take a more comprehensive approach to life-and-death decisions for patients who are unable to make the choices themselves.
At a hearing before the Senate Judicial Proceedings Committee Wednesday, Judge Byrnes presented the conclusions of an ad hoc group which has come up with recommendations that could form the basis for a more comprehensive law, one that could also serve as a model for other states.
Instead of dealing with definitions, standards and procedures for only one form of substituted judgment -- the durable power of attorney -- it could also set up a framework for cases involving living wills, legal guardianship, decisions made for patients by family members or other forms of substituted judgment.
Judge Byrnes' group included different points of view -- from Assistant Attorney General Jack Schwartz, a keen interest in an individual's right to autonomy in these decisions; Diane Hoffman, professor of law and health care at the University of Maryland School of Law, contributed her academic expertise; and Judge Byrnes' own concern that the public values or state's interests in these cases not get overlooked. The group also sought advice from Dr. Louis Breschi, chairman of the state medical society's ethics committee.
In a draft report issued earlier this month, the group presented its conclusions, sketching out a framework with which to approach decisions about withholding or withdrawing life-sustaining medical treatment. That approach takes into account the constitutional "liberty interest" in these decisions, as well as the public concern embodied in four "state interests" -- which don't often get systematic attention.
The first of these interests is the preservation of life. The report places a strong value on preventing the arbitrary ending of a life because of financial concerns, the burdens on a family or the policies of a government or health care provider.
The group also sees a state interest in the prevention of suicide, which can have severe consequences for other people.
A third concern lies in guarding the integrity of the health care professions.
Finally, the state has an interest in protecting the people who would be directly affected by a decision to end life support -- children, spouses or other dependents.
These concerns do not displace an individual's right to refuse medical treatment, but they form an important part of the framework in which these decisions must be made.
The group's report has become the basis for legislation introduced by Sen. John Pica, and the word from Annapolis is that there is still time for the legislature to take a close look at a comprehensive approach this year. That would be an important step for Maryland. At the very least, the legislature can amend the durable power of attorney legislation to reflect the philosophy of a broader approach.
Life-and-death decisions are routine. What is not routine is stepping back to take a good look at how we make these decisions -- not just our best intentions, but our hidden agendas as well.
That's what the Byrnes report has given us. The legislature would be wise to take it into account.
Sara Engram is editorial page director of The Evening Sun. Her column appears here each week.