Decisions on end-of-life care shouldn't be left to the end

Advance directives should evolve after a series of discussions between physician and patient.

By Susan J. Landers, amednews staff. Sept. 2, 2002.

Washington -- Knowing in advance the type of medical care they will receive at life's end is often a huge relief, not only to patients and their families, but also to their physicians.

Should a physician pull out all the stops for a terminally ill patient? Is CPR something the patient would expect? How about a feeding tube?

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What would your basically healthy elderly patient want? Whose standards do you use when defining quality of life? The patient's? A family member's? The physician's?

There has been a push in recent years to encourage all patients to talk with their physicians and families about advance care planning so they can participate, through a health care proxy if necessary, in decisions that will need to be made at the end of life.

There is no question that advance care planning is important, even if most people would rather not think about it. Quoting a British friend, Richard Roberts, MD, board chair of the American Academy of Family Physicians, said, only half jokingly, "One problem Americans have is 'we think of death as an option.' "

An advance directive can also be of great comfort to a physician, said Dr. Roberts. "What it does is give the doctor something that makes him or her feel more comfortable not doing everything."

Connecticut patients can wear a bracelet that conveys do-not-resuscitate wishes.

Advance directives can provide legal backup in case a physician is second-guessed and sued by surviving family members, he added.

The complex issues surrounding end-of-life care led Ferdinando L. Mirarchi, DO, an emergency physician at Hamot Medical Center in Erie, Pa., to write the book, What's the Patient's Code Status? The need for answers arose when Dr. Mirarchi's elderly grandmother was very ill and his mother didn't know what should be done. He gathered material for his mother and realized that it might be useful to others as well.

He said he has sold about 1,000 copies of the book, and the American College of Emergency Physicians is planning to put the book in its publications catalog.

The need for fast answers is particularly important to physicians in emergency departments who come face to face with such issues daily. The question of a patient's code status arises "a couple of billion times a day," Dr. Mirarchi says, and often, no one knows the answer.

In Connecticut, emergency care physicians grappling with the problem developed a bracelet that patients can wear to indicate that they do not want to be resuscitated. "The bracelet represents a contract between the patient and his or her physician. It's there as a signal that says 'Do not resuscitate, comfort measures only,' " said Michael Carius, MD, chair of the emergency department at Norwalk Hospital.

The bracelet concept has been very successful, he said. "There is nothing more emotionally draining than for an emergency department or an EMS crew to resuscitate a patient only to find out that they didn't want to be."

Ongoing discussions

The discussions between patients and physicians that lead to a decision to wear a bracelet in Connecticut, or, as specified in other states, to keep directives on the refrigerator door for an emergency medical crew to find, should have been ongoing through much of a patient's life.

Whatever type of advance directive is developed -- and it differs from state to state -- it should be in writing, be readily available and, ideally, have evolved from discussions over time. "This should not be a one-time conversation," said AMA Trustee Nancy Nielsen, MD, PhD. "And it shouldn't be an emergency conversation either."

The conversations could begin anytime. Dr. Nielsen and Dr. Roberts have initiated them with teenagers when they begin to drive. Dr. Roberts points out how many young people die in car crashes and asks young patients to think about what they can do to make that a less likely outcome. And it also "opens the door a bit" to thoughts on what end-of-life care they might desire.

Dr. Nielsen broaches the subject to teens in the context of organ donation. "You can say, 'You're 18, but if you get killed on the throughway, would you want your organs donated?' "

There are all kinds of nonfrightening ways to raise the issue with patients, she said.

"But what is frightening is when someone is critically ill and a resident in a hospital comes in and says, 'What do you think of a DNR order?' That's like giving up hope," she said.

Another problem is that physicians tend to "fight death to the death," said Dr. Roberts. "It's really hard to let go."

But physicians must, at times, let go of patients. When the decision is made to withhold all but comfort treatment from a critically ill patient, a physician may withdraw in certain ways, said Dr. Roberts.

For example, if a family always arrives at the hospital when a physician makes rounds at 7:30 a.m. and it takes a long, painful hour to address their concerns, a physician might start making rounds at 6:15 a.m. to avoid the family, said Dr. Roberts.

"I don't think it's done out of callousness, but because it's painful to watch the family suffer," he said.

Dr. Roberts suggests that instead of avoiding the family, physicians sit down with them and tell the family they don't think the patient will pull through and then ask how he or she can be helpful to them.

"Often just letting people know that someone besides the family gives a damn probably does more to help both them and the patient than any other kind of miracle drug you might pull out of your sleeve," said Dr. Roberts.

ADDITIONAL INFORMATION:

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Advance directives: Advisory documents that provide guidance to health care professionals regarding a patient's medical and health care decisions in the event the patient becomes incapable of making those decisions.
Living wills: Instructional documents that comply with state statutes. Like advance directives, they instruct physicians on the type of medical care the patient would like to receive in the event he or she loses decision-making capacity. The language in these documents is generally broad and conceptual rather than specific.
Durable power of attorney for health care: Legal documents that enable a patient to designate a surrogate or proxy to make health care decisions on his or her behalf when the patient is unable to do so. Most people choose to put a family member or close friend in this capacity. Whoever is selected should be actively involved in the advance care planning process.

Source: Advance Care Planning: a Practical Guide for Physicians, Damon K. Marquis, published by the AMA.