Putting Muscle Behind End-of-Life Wishes

The New York Times

February 24, 2009

My friend’s 94-year-old father was near death from congestive heart failure. He had requested in writing that no extraordinary measures be used to prolong his life; he wanted to die peacefully at home. But one day when he began struggling to breathe, my friend, his daughter, panicked and called 911.

Although the paramedics were told of his wishes, they followed established procedures and went right to work, helping him breathe and taking him to the hospital. But they told his distressed daughter that if he stopped breathing again, she should wait 20 minutes before calling 911, at which point resuscitation would not be possible. A few days later, her father died peacefully at home.

Millions of Americans have living wills that they think provide clear instructions to medical personnel about what should and should not be done if their lives hang in the balance and they cannot speak for themselves. Yet in case after case, study after study, it seems that these documents fail to result in the desired end among patients in hospitals and nursing homes.

Misconceptions

Now a new study confirms that confusion about interpreting living wills prevails in prehospital settings, as well. The study, conducted among 150 emergency medical technicians and paramedics by a team at Hamot Medical Center in Erie, Pa., and published this month in The Journal of Emergency Medicine, found that concern for patient safety can collide with confusion about the intent of living wills and do-not-resuscitate orders.

Even when a living will did not specifically say “do not resuscitate,” 90 percent of the emergency medical technicians and paramedics interpreted the mere existence of a living will to mean they should provide only comfort and end-of-life care and not attempt to save the person’s life.

“A living will does not necessarily say, ‘Do not treat me if I have a critical illness.’ This is a major misconception,” said Dr. Ferdinando Mirarchi, the director of emergency medicine at Hamot and the director of the study.

The study did find that when the living will incorporated a code status, like “full code,” meaning that every effort should be made to resuscitate the patient, it was much more likely that emergency responders would provide life-saving care.

But more often than not, the reverse situation occurs. Patients who have clearly specified that no attempt should be made to prolong life if they become unresponsive are nonetheless resuscitated or hooked up to respirators and feeding tubes.

Uncooperative Doctors

In “To Die Well,” Dr. Sidney Wanzer, a co-author, relates the experience of his 92-year-old mother, who was living in a nursing home with advanced Alzheimer’s disease. Long before the disease had overtaken her mind, he wrote, she had completed a living will stating that “she did not want her death prolonged by medical treatment if the quality of her life ever became so poor that there was no significant intellectual activity or reward.” Yet when her heart developed an irregular rhythm that would have soon been fatal, the doctor in charge implanted a pacemaker, which kept her alive another five years in a helpless state “lacking all dignity, totally contrary to her written request,” Dr. Wanzer wrote.

“I thought everything was all set,” he continued. “But we made a big mistake. We did not ask her doctor explicitly, ‘Do you agree with this approach and will you promise to adhere to our mother’s wishes?’ ”

As more and more Americans live beyond the eighth decade, when the risk of dementia rises significantly, cases in which a doctor chooses medical intervention — in the presence or absence of a patient’s wishes — are likely to become more common. Yet in a 1999 study by Dr. Dwenda K. Gjerdingen and colleagues at the University of Minnesota among 84 cognitively normal men and women 65 and older, three-fourths said they would not want to be resuscitated, put on a respirator or nourished by a feeding tube at the end of life if they had mild dementia, and 95 percent would reject such measures if they had severe dementia.

A costly, four-year, multicenter study begun in 1989 sought to improve doctors’ ability to interpret and carry out patients’ wishes for end-of-life care. Yet informing doctors of what hospitalized patients wanted and placing that information in the medical records did nothing to influence the care they provided. Having a living will had no effect on whether doctors used resuscitative efforts at the end of life. The doctors, it seemed, simply could not let patients go even if that was a patient’s explicit wish.

Help for First Responders

Last year, a law went into effect in New York State to help solve the problem of emergency responders’ being forced to give invasive care to people at the end of life, even if that is contrary to the wishes of the dying person and relatives.

The law allows the use of a bright pink form, the Medical Orders for Life-Sustaining Treatment form, which lets people to indicate whether they would want intravenous fluids, medications like antibiotics, a feeding tube, a breathing tube or other interventions, and whether they want to go to a hospital. On the form, which is signed by a physician and is considered a medical order, patients can also specify that they want only comfort care or would want a trial of certain treatments.

Before the law was passed, the only directive emergency technicians could obey was an out-of-hospital “do not resuscitate” form specifying that no cardiopulmonary resuscitation be tried if a patient stopped breathing or had no pulse. Not covered were the myriad cases like that of my friend’s father, in which patients were near the end of life but not in cardiac arrest. 

California, North Carolina, Oregon, Washington, West Virginia and parts of Wisconsin also have programs that use these physicians’ order forms to clarify treatment and end-of-life decisions for medical personnel. Programs are being developed in still other states. 

Can similar improvements in adherence to advance directives be made for all of us, including hospitalized patients? One approach is to assign a trusted person to be your health care proxy, to hold dual power of attorney for health care when you are unable to make your wishes known to medical personnel. Discuss your wishes under various conditions with that person, give the person your detailed living will and complete a health care proxy form. Update the information if your feelings change.

My husband and I carry our proxy forms in our wallets, to help medical personnel figure out whom to contact in an emergency and how to proceed in accordance with our wishes.

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