[PRO] Families of the dying have a role

Dying with dignity
*The National Life Ethics Committee, a presidential advisory panel, has been collecting public feedback on a bill that would legalize euthanasia and set guidelines for ending life-prolonging treatment for the terminally ill. Supporters of the bill, including many medical professionals, say the wishes of families to allow their loved ones to die with dignity should be respected; opponents argue that only patients have the right to decide to forgo life-extending measures.

Families and legal guardians of terminally ill patients should be given the legal right to make decisions about treatment to ease the suffering and potential confusion of those who are nearing death.

Each year, more than 180,000 people die in hospitals or hospices. Extending the lives of dying people suffering from intense pain who are often dependent on machines and hospital staff is meaningless from a medical perspective. Nonetheless, more than 30,000 incurable patients undergo procedures to maintain coronary activity and respiration regardless of their brain function or state of consciousness. These are life-prolonging procedures rather than treatment.

In 2009, the Supreme Court handed down a landmark decision upholding the plea of a family to respect the will of a 77-year-old woman who had opposed life-prolonging measures prior to lapsing into unconsciousness. The decision paved the way for the hospital to remove life support from the patient, who was brain dead.

The action reignited controversy over the right to die and calls for legislative guidelines. But discussions failed to reach a conclusion. The tricky part is allowing families or guardians to make decisions on behalf of patients in an unconscious or vegetation state.

Surveys have shown that the vast majority of Koreans - typically 70 percent to 90 percent - believe patients should be told they are nearing death and asked to decide whether they want procedures to prolong their life.

But that is wishful thinking in real life. Among 317 cancer patients who died at Seoul National University Hospital recently, only about 1 percent had signed forms authorizing or withholding procedures in the event they lost consciousness. About 4 percent of the forms were signed by a family member at the request of the patient and the remaining 95 percent by family members on their own initiative.

It is not easy to ask a sick person to determine how he or she will die in a society where physicians tend to communicate with families rather than patients. Taiwan, which shares similar Asian values and traditions, created a law in 2000 to allow the closest family member to decide when or how to end life-support procedures when the patient is not competent or cannot speak for himself. Japan has had a government-initiated guideline since 2007 that requires medical professionals and families to decide what would be best for patients who cannot decide for themselves.

In the United States, where it is common for doctors to speak candidly with their patients, there has been a law since 1990 that encourages patients to make clear their end-of-life wishes. Yet only about 30 percent of dying patients did so over the past two decades. Family members are legally allowed to make life-and-death decisions on the patients’ behalf.

In the case of Korea, medical staff is hampered by the lack of specific legal guidelines on when to remove patients from life support. Opponents reject removing life support regardless of the wishes of patients. Such an action would be tantamount to usurping God’s authority to control life and death. But few pay any attention to the decision-making processes for the 150,000 patients each year who have been denied life-prolonging procedures because of decisions by their families.

We need a legal system that clears the way for families to make decisions that help patients die in less humiliating and painful ways by withholding or withdrawing meaningless life prolonging steps.

Any one of us can end up on our death bed in a hospital. We need a law and system that entitle us to deny pointless life-extending treatment and choose instead to die naturally and with dignity.

Translation by the Korea JoongAng Daily staff.

*The writer is a professor of internal medicine at Seoul National University Hospital.
By Hur Dae-suk