Patients Will Soon Face Decisions as Large as Life

Do you have your affairs in order?

Have you decided how far you would want your doctors to go to keep you alive? Is there someone who can speak for you if you become unable to do so?

Beginning Dec. 1, every patient who checks into a hospital or nursing home or signs up with a health maintenance organization will be asked to consider those questions, thanks to a new federal law intended to give patients more control over the health care decisions that affect them.

But for some, particularly those dealing with serious medical problems, the questions may have an undue aura of foreboding.

“If a patient who’s never heard of this is going in for surgery and it’s presented to them, they may think, ‘Hmmm . . . maybe this is more serious than I thought. Maybe there’s something my doctor isn’t telling me,’ ” says Treacy Colbert, vice president of California Health Decisions, a statewide advocacy and education organization based in Orange.

Colbert and others who have long advocated the use of what are called advance directives for patients welcome the new law, even as they acknowledge that it may be distressing for some.

“The law is great in that people are going to become more aware, even though they’ll be hearing about it at the least opportune time,” says Margaret Leverett, who has been teaching public classes on the subject at St. Jude Hospital and Rehabilitation Center in Fullerton for three years.

The Patient Self-Determination Act, shepherded through Congress by Sen. John C. Danforth (R-Mo.), requires that all health care facilities dealing with Medicare and Medi-Cal inform all adult patients, regardless of their insurance coverage, that they have the right to state their wishes regarding life-sustaining treatment and designate a friend or family member to make decisions for them if they become unable to communicate.

In California, the most legally binding way to accomplish that is through a document known as a durable power of attorney for health care. A more widely known document, the living will, allows patients to express their wishes but is not considered a legal document.

Beginning Dec. 1, all California hospitals will comply with the law by offering patients durable power of attorney forms along with explanatory brochures. But most will advise patients not to fill them out until they get home and have some time to think it over.

“We’re not encouraging patients to complete them while they’re in the hospital,” says Suzie Pingle of Saddleback Memorial Medical Center in Laguna Hills. “It needs some soul-searching and thought put into it, and the hospital is a fairly stressful place. We’d like them to be able to think these things out in a nice, calm environment.”

Danforth pushed the legislation through after a highly publicized right-to-die case in his state. The parents of auto accident victim Nancy Cruzan went to the U.S. Supreme Court to ask for permission to disconnect the feeding tubes that kept their daughter alive in a persistent vegetative state. They claimed she would not have wanted such treatment. Ultimately, the parents won, but only after one of their daughter’s friends testified that she had expressed those wishes in a conversation several years before.

Without a clear statement such as a durable power of attorney for health care, health care providers are required by law to do everything they can to keep patients alive, says Pam Hill, a member of the bioethics committee at St. Joseph Hospital in Orange.

The durable power of attorney allows patients to choose that option, but Leverett and other experts say most patients don’t want to be kept alive if their condition is hopeless.

“You have to examine your own values about how you want to continue, and decide just where you stand,” Leverett says. “Some people can face the fact that they would live in a wheelchair for the rest of their lives. Others couldn’t.”

Thousands of Orange County residents already have gone through that soul-searching, thanks to California Health Decisions’ seven-year effort to get the word out. The program, which began here and then expanded statewide, is now a model for other states.

But even though Orange Countians are better informed than most, Leverett says, “we still need to reach many more people. Unfortunately, this is a question many of us would rather not think about.”

Linda Cunstance of Laguna Hills, who was hospitalized last week at Saddleback, had already filled out her durable power of attorney for health care form several weeks before her recent health problem developed. She decided to go through the process herself because of her own experience acting as a health care agent for two elderly friends.

“They lived in Leisure World and didn’t have any family, so we eventually became their caretakers,” Cunstance says. The couple filled out a durable power of attorney form designating Cunstance and her husband, Doug, as their health care agents.

“It’s a very serious responsibility,” Cunstance says. “We had to make those decisions and be able to live with them.” The Cunstances acted as agents for the couple as both went through chronic degenerative illnesses and then died.

Then, Cunstance’s aunt in Utah was in a vegetative state for 2 1/2 years after a heart attack.

“My cousins felt so bad about what she was going through, but they had to live with their decisions, too,” she says.

After the Cunstances adopted their son, Nathan, now 1, they felt a renewed interest in making their wishes clear and designating an agent, just in case. Although they’ve already executed the forms, the couple plan to hold a family meeting with their grown children soon to explain their wishes in detail.

“From our own experience, we know that it’s really important to be as specific as possible about what you want,” she says.

Colbert says the new law is a significant change in health care policy.

“Before, people looked at entering the health care system as a surrender of your rights, but this gives patients a much more active role,” Colbert said. “It’s going to require a lot of education.

“We hope that health care providers will present this in a positive way, saying, ‘We’re interested in respecting your wishes, you have certain rights, and here’s a way to ensure that what you want is known.’ ”

Because of another change in laws that goes into effect Jan. 1, all durable power of attorney forms signed before that date will be effective for only seven years. But new forms being introduced next year will have no expiration date, Colbert says.

The Treatment Choices

The durable power of attorney for health care offers a choice of three general statements regarding life-sustaining treatment:

* “I do not want efforts made to prolong my life, and I do not want life-sustaining treatment to be provided or continued (1) if I am in an irreversible coma or persistent vegetative state; or (2) if I am terminally ill and the application of life-sustaining procedures would serve only to artificially delay the moment of my death; or (3) under any other circumstances where the burdens of the treatment outweigh the expected benefits. I want my agent to consider the relief of suffering and the quality as well as the extent of the possible extension of my life in making decisions concerning life-sustaining treatment.”

* “I want efforts made to prolong my life, and I want life-sustaining treatment to be provided unless I am in a coma or persistent vegetative state which my doctor reasonably believes to be irreversible. Once my doctor has concluded that I will remain unconscious for the rest of my life, I do not want life-sustaining treatment to be provided or continued.”

* “I want efforts made to prolong my life, and I want life-sustaining treatment to be provided even if I am in an irreversible coma or persistent vegetative state.”

If none of those statements is an accurate reflection of your beliefs, you may substitute a statement in your own words or add additional statements. Some patients choose to make no statement, which gives their health care agent the right to choose whatever course of treatment he or she feels is appropriate.