Where There's a Living Will ...

We spend billions of dollars on health care that patients don't need and don't want

What lesson did Jacqueline Kennedy Onassis leave for Medicare reform? After she was diagnosed with lymphatic cancer, she drafted a legal document--a "living will"--that explained in precise terms how she wished to be cared for in her final days. She made it clear that she didn't want artificial life support or "heroic measures" to prolong her life. Ms. Onassis died peacefully in her New York City apartment on May 19, 1994.

So far, Congress has not paid any attention to Ms. Onassis's example during its ongoing debate over reducing federal Medicare costs--but it should. Right now, well over a tenth of all Medicare dollars pay for care provided in the last 30 days of patients' lives. Some of that care is necessary and proper, but much is not. In one survey of 1,400 doctors and nurses, 65 percent admitted providing unnecessary treatment to terminally ill patients. If more Medicare patients used living wills to block such unnecessary and unwanted last-minute procedures, the savings could be substantial.

Congress could make this happen by requiring all Medicare patients to have a living will that clearly sets forth what kinds of treatments they do and do not want if they are near death and unable to communicate their instructions personally. Patients would not be coerced into foregoing care. They would have the clear option of specifically rejecting or demanding such things as cardiac resuscitation, mechanical respiration, artificial nutrition, or antibiotics in the event that they become permanently unconscious or irreversibly brain-damaged while in a terminal condition. They could also demand that doctors take all available steps to reduce pain and suffering, which, amazingly enough, doctors often do not do.

Although these Medicare patients could demand that everything possible be done to extend their lives until the last minute, polls and studies indicate that more than two-thirds would use the living wills to reject both heroic measures and more standard forms of last-minute care. And if two-thirds of the nearly two million Medicare patients who die each year did just that it would save Medicare a lot of money.

But by making living wills mandatory for Medicare patients Congress would do more than just cut costs. It would also help patients to regain control of their final days, avoid suffering, and maintain their dignity. It would cut health costs, in other words, while empowering patients rather than hurting them.

A First Step

The federal government is no stranger to the advantages of living wills. The Patient Self-Determination Act of 1990 requires health providers working with Medicare or Medicaid to ask patients whether they have living wills upon admission and, if they don't, to offer them an opportunity to execute one. But the 1990 bill didn't go far enough. Although approximately 20 percent of Medicare patients now sign living wills, there is only a small chance that anyone will take the documents seriously.

In most cases the patients' doctors never even see the living wills. Patients or their families forget to provide them; doctors and hospital staff don't ask to see them; and health care facilities, especially nursing homes, don't forward copies when patients are transferred elsewhere. One study that looked at the hospitalization of Medicare patients with previously executed living wills found that the doctors and hospital staff failed to find the living wills over 70 percent of the time, even in those cases where a living will would have directly applied because of patient incapacity.

Even when health care providers have patients' living wills in hand, they often ignore them. One patient with Alzheimer's disease used a living will to tell her New York City nursing home that she did not want any artificial nutrition or hydration while she died. Nevertheless, when she became incapacitated, the nursing home staff persistently tried to force nutrition tubes down her throat and insert the hydration IVs. To block these efforts, the agent designated by the living will was forced to sit by the woman's bedside as an around-the-clock guard until she died.

In another case, a 92-year-old concentration camp survivor in a New York hospital made her son-in-law her designated agent, told him that she had suffered enough in life, and instructed him to make sure that she would not suffer unnecessarily during her last days. After subsequent treatment for heart failure, she lost consciousness. Her kidneys and liver also failed, and her doctors put her on a dialysis machine and respirator. The son-in-law asked the doctors to remove the respirator. They replied (incorrectly) that it was against the law. He asked that they give his mother-in-law some pain medication. They refused, insisting that her blood pressure was too low and that the medication might hasten her death. Some time later, with assistance from Choice In Dying, a group that promotes living wills, the son-in-law finally persuaded the doctors to remove the respirator and give his mother-in-law pain medication. A few hours later, she died quietly with her family beside her.

As these examples show, medical personnel are often ignorant or not familiar with living wills and are therefore reluctant to depart from standard hospital practices. Most significantly, an irrational fear of malpractice claims persists--despite rulings by the Supreme Court and other federal and state courts that competent adult patients have a right to refuse treatment and demand adequate pain relief either directly or through living wills. No judgment of malpractice has ever been handed down against a doctor for following the terms of a living will or a rational patient's instructions to withhold care. And some courts have even convicted doctors of assault and battery for providing treatments against patient wishes.

How do we get the medical profession to pay more attention to living wills and follow their instructions? Simple: Congress should order the Medicare program to withhold reimbursement to doctors for care given to patients who don't have living wills or for care provided in violation of a patient's living will. Financial incentives can be very powerful.

But getting doctors to recognize and respect patients' living wills is only half the story. By promoting more frequent and in-depth doctor-patient conversations about living wills and related issues, the Medicare program could also extend the patient benefits and cost savings from living wills well beyond those situations where they directly apply. These discussions increase the chances that doctors will not only follow the living wills if they come into play but also honor the direct treatment instructions of dying patients who remain conscious and competent. By making doctors more aware of patients' attitudes toward different types of treatment, these discussions can also produce substantial additional savings by changing earlier treatment regimes for all patients.

Given the current situation, where doctors have been found to discuss alternatives in as few as 12 percent of patient discussions about treatments, the new doctor-patient conversations sparked by the living wills can only improve things. "Living wills provide doctors and patients with a useful starting point for discussing a variety of treatment situations," says Dr. R. Scan Morrison of the Mount Sinai Medical Center's Geriatrics Department. "That can give doctors important insights into the kind of care their patients want--both at the end of their lives and well before."

Medicare could reinforce this result by giving patients an opportunity to use their living wills to list other specific topics or treatment options they would like to discuss with their doctor--such as their attitudes toward pain and pain control, hospice care versus hospital-based treatment, and possible alternatives to surgery or other invasive procedures.

The Final Tally

Because they help patients, expanding the use of living wills would be a good idea regardless of its effect on the medical economy. But the money saved could be enormous. In a five-hospital study published in The Journal of the American Geriatrics Society, the costs of "futile," last-minute medical care for patients with near-death diagnoses who died in the hospitals averaged about $10,400 per patient. In the final month of a patient's life, intensive care costs can surpass $100,000. And the total cost to Medicare for medical care provided to patients in their last 30 days came to roughly $20 billion in fiscal year 1995.

Many patients simply do not want or need much of the high-tech and futile care that create these final-day costs. According to a study reported in the Archives of Internal Medicine, patients who discussed their living wills or related issues with their doctors used less intensive care, underwent fewer procedures, and experienced shorter final stays in the hospital than those without living wills. The cost of treating these patients during their final stays in the hospital was, on average, two-thirds less than the average cost for treating the other patients (roughly $30,000 versus $95,000).

Because more than a million Medicare patients die in hospitals each year, these findings suggest that the new living wills system could reduce total federal Medicare costs by about $4 billion, using 1995 figures, or roughly 2.3 percent each year. To the extent that discussions between doctors and patients about the living wills would also reduce other treatment costs, the savings would be even larger.

Using less patient-friendly means, Republicans in the House and Senate plan to cut federal Medicare funding by $270 billion over the next seven years. If the living wills strategy reduced Medicare spending by only two percent per year over the same time period, it would produce cumulative savings of almost $40 billion--or almost as much as the Republicans hope to obtain by increasing premium and deductible payments for beneficiaries with annual household incomes less than $100,000.

At the same time, the proposals outlined here can easily apply to other public and private health insurers and providers--both to help patients and reduce costs. Medicaid, which currently covers about two-thirds of all elderly persons in nursing homes and 40 percent of all AIDS patients in the United States, could benefit from a living wills strategy just like Medicare. And similar living wills systems could help the Department of Veterans Affairs health care network, U.S. military hospitals, state and city hospitals, and even private HMOs and health insurers.

Taken together, these measures would not eliminate the need for universal health care coverage or solve the problem of rising public and private health care costs. But they would eliminate a lot of unwanted and unnecessary medical care, and save billions of dollars, by empowering patients and promoting more constructive discussions between doctors and patients. They would actually improve the overall quality of health care, rather than reduce it. That sounds like a much better health care deal than most of the other ones floating around Congress these days.

Eric Lindblom is a public policy analyst and writer in New York City.