Tailored directives give clearer vision of care
An outgrowth of advanced care planning
Numerous studies indicate the failure of advance directives to prevent ethical conflict or to ensure that patient wishes are followed.1 But don’t throw out the baby with the bath water, say many ethics experts. Advance directives are a good first step. They fail, some argue, when they don’t provide enough information or guarantee that doctor/patient and patient/family communication takes place.2
Living wills and durable powers of attorney for health care are only the first generation of what is now called "advanced care planning." The next generation will require not only that physicians and patients discuss the goals of treatment and the inherent values of the patient, but that they document these decisions in a format the physician, patient, and surrogate decision maker find practical in the decision-making process.
Patients throughout Canada’s eight provinces are engaging in advanced care planning with their physicians and, equally as important, with their family members and surrogate decision makers. They are using a new tool, a disease- specific advance directive, to record their wishes.
"We have to help patients understand the decisions they will make about care and define those decisions in terms they can understand," says Peter A. Singer, MD, MPH, director of the Joint Centre for Bioethics at the University of Toronto in Ontario, Canada. Singer has developed disease-specific directives in four disease areas, and his colleagues are implementing these detailed accounts of patient wishes.
The lengthy forms, along with supplemental information, are available to patients with these diseases: AIDS, cancer, chronic obstructive pulmonary disease (COPD), and kidney disease (dialysis). Patients are presented with in-depth information on possible treatment choices they may face. For example, the main treatment decision for COPD patients, Singer explains, is whether to begin and continue mechanical ventilation for acute respiratory failure.
An instruction section of the directive provides detailed prognostic information about the use of artificial ventilation in patients with COPD. The same section in the dialysis advance directive provides prognostic information about outcomes for resuscitation in dialysis patients and the experiences of patients that have discontinued dialysis.
Each of the disease-specific directives also includes this statement about all treatment choices: "If you do not receive the treatment, the chance that you will live depends on the nature of the medical problem. Even if you recover fully from the medical problem, you would return to the health situation you were in before you developed the further medical problem."
Singer stresses that to plan care in advance, physicians must help patients imagine themselves becoming gravely ill or near death. "People need information to plan health care decisions," and they can make more precise choices when they have this information and are actually confronted with a particular disease, he says.
AIDS-specific directives highly useful
So far, the AIDS-specific advance directive has been the most widely used in Canada, Singer says. The disease is a good example of how this type of directive succeeds where the generic advance directives fails, says Pauline Chantler, RN, a staff nurse in the immunodeficiency clinic at Toronto Hospital. The instructive part of the directive gives the patient relevant information that helps alleviate decision-making conflicts, she says. "This directive spells out what the patient wants so there is no guessing and no guilt."
Surrogate decision-makers feel comfortable knowing they have asked caregivers to provide exactly the care the patient wanted.
The AIDS-specific directives also do not include some choices found in a general directive. Patients with AIDS rarely encounter a persistent vegetative state, for example. Rather, major decisions for AIDS patients include whether to have antibiotics, blood transfusions, and life-saving surgery. These patients predictably can suffer from dementia, central nervous system toxoplasmosis, meningitis, and pneumocystis pneumonia. (See related story, at right.) The HIV living will includes a grid that patients in the early states of the infection can complete. (See grid, inserted in this issue.) To help patients make decisions, the directive also includes information about the prognosis for patients following specific treatment options.
Patients complete the directive in the early course of their disease when they already may have experienced some of the debilitating situations. Singer says this reality is also a major factor in making the disease-specific directive more useful. Patients make fewer hypothetical choices, and the disease information, including possible predictable outcomes, can be tailored to each disease. Information on ventilation in the general patient population is less precise and less useful than in patients with COPD.
"When you have a well-educated and motivated patient, the disease-specific directive is part and parcel with the desire for managing his or her own health care," says Chantler.
References
1. The SUPPORT investigators. A controlled trial to improve care of the seriously ill hospitalized patient: The study to understand prognoses and preferences for outcomes and risks of treatment. JAMA 1995; 274:1,591-1,636.
2. Kaplan RN, Schneiderman LJ, Virmani J. Relationship of advance directives to physician-patient communication. Arch Intern Med 1994; 154:909-913.
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