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March 12, 2004

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Publication Date: Friday, March 12, 2004

A life-or-death decision A life-or-death decision (March 12, 2004)

Conference on March 27 will cover end-of-life issues

By Diana Reynolds Roome

Recently, a middle-aged man was brought into the emergency department at El Camino Hospital, alive but non-responsive after being resuscitated by paramedics. The person who phoned for help earlier had left no name, and nothing the patient carried gave any clue about relatives or an emergency contact person.

When it became clear that he had been without oxygen for too long and was effectively in a vegetative state, he was put on life support while hospital social workers tried to locate a family member.

Physicians who have the technology to keep a patient alive are obliged to do so unless the patient has previously made his wishes clear, or someone acting on his behalf gives permission to let the patient die. At the same time, according to California's Healthcare Decisions Law, a physician is not bound to provide treatment that is not beneficial. Yet this is open to interpretation, and the question of whether to keep a person artificially alive, with no apparent prospect of recovery, is fraught with challenges.

"When it comes to medical ethics, issues are very rarely black and white," said Marilyn Regan, marriage and family therapist and a member of El Camino Hospital's Ethics Committee.

Keeping someone alive when physicians do not see any possibility of recovery can be seen as a futile exercise that uses up limited medical and human resources. But making the decision to withdraw life support requires a profound moral judgment that few people wish to undertake. Meanwhile, advances in life-saving medical technology are making such heart-rending dilemmas more and more common.

In December 2003, El Camino Hospital's Ethics Committee adopted a Friendless Patient policy, which gives it the ability to make a decision on a patient's behalf if nobody more qualified can be found. In the case of the lone man, an ad hoc team prepared to become his official surrogate. Probable religious or cultural preferences would have been discussed and if possible, the team would include somebody from his ethnic group. The aim is to make decisions that respect the patients' dignity and also make sense in the wider context of hospital and community resources.

Eventually someone who knew the man was tracked down, and his family was contacted on the other side of the world. On a long-distance call, a physician explained the situation to a brother who gave his permission to let the man die.

On this occasion, the need for a decision by the Friendless Patient team was averted. However, "In this country most probably there are large numbers of elders who are unbefriended for healthcare and financial decisions. They're rushed to the hospital from independent homes or assisted living facilities -- maybe after a stroke -- and nobody is authorized to check them out and into a nursing home [if need be]," said Doris Hawks, attorney and member of the National Academy of Elder Law.

This can lead to long delays when the patient is in a kind of limbo, unable to make a decision, and the hospital faces long delays while a public guardian is found or a court decision made.

Situations like these would arise less often if planning for life's end were a routine part of everyone's life. To help people do this and to gain a better sense of the issues involved, El Camino Hospital is holding its Fifth Annual Ethics Conference on March 27.

The conference will offer information about various life-prolonging treatments, while panel discussions and question-and-answer sessions will help people clarify their own personal values, so that it becomes easier to discuss end-of-life issues with loved ones and a primary care physician.

"The best time for such decisions is when you're young and healthy," said Regan. "Yet most people don't know what questions to ask, let alone what the answers might be."

Anyone caring for somebody who is terminally ill, or anyone with a dilemma about the quality of life in the future would benefit, said Regan. "In fact, anybody who is going to die," she adds, only half joking.

Only 20 percent of adults nationally complete a Living Will or Advance Directive, California's legally binding statement of end-of-life preferences, which also names an agent who will make decisions in the event the patient cannot speak for herself. Yet the need for individuals to take control grows more urgent as advances in technology place the decision to live or die increasingly into the hands of humans rather than nature, fate or God.

"These situations are very troubling for physicians," said Hawks. "And it's hard on the nursing staff to watch people who won't recover. Medical treatment providers should not be in a position of making that decision."

As things stand currently, hospital staff members are obliged, under its regulations of mandatory resuscitation, to apply extreme technology -- including CPR, chest compressions and drugs -- even to patients who may have little hope of regaining any quality of life.

"It's a dilemma we face almost every day," said Sandy Paddock, a nurse who works in a post-operative ward. "If a person comes in with a fractured hip, and later her heart stops, we are obligated to jump on her and reactivate her heart. It can crush every bone in her rib cage."

Many factors come into play when thinking about life and death, especially in a crisis situation. Cultural, emotional and religious influences make it difficult or even impossible to be strictly rational about end-of-life decisions, says Ernle Young, Professor of Medicine (Biomedical Ethics) Emeritus at Stanford and medical ethicist at NASA/Ames, who will speak about these issues in his keynote address at the conference.

In his long experience of clinical ethics in intensive care settings, Young has seen people cling to the idea of miracles even when they are not believers in a religion; patients who do not want to know anything about their illness and hand over all decisions to another family member; and others who fear a family member is being deprived of last-ditch interventions due to ethnic prejudices.

El Camino Hospital staff members say they endeavor to understand and support ethnic and religious differences, but cultural barriers to rational decision-making are even broader and more pervasive than these.

"Ours is a death-defying culture," said Young. "Because medicine has become so effective, we are seduced by the illusion ... of medical immortality, the notion that death is optional."

Information

End of Life: Fifth Annual Ethics Conference,

El Camino Hospital, Saturday March 27, 8:30 a.m.-4:15 p.m., $45 (lunch included).
Call (800) 216-5556 for details or a registration brochure.

Help with an issue or dilemma is available by calling the ECH Ethics Referral Line at 988-8228. Questions are treated confidentially and may be anonymous.


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