Advance Directives - Are Advance Directives Effective?

Some people are skeptical about the effectiveness of living wills. They claim that many living wills say very little about real-life clinical situations. Others feel that the average person cannot be expected to know the ramifications of different medical treatments, much less name them. The National Conference of State Legislatures (NCSL) and the Center to Improve Care of the Dying (CICD) agree. In State Initiatives in End of Life Care: Policy Guide for State Legislators (Washington, DC, June 1998) these groups reported that the standard forms used by most states do not encompass the wide range of scenarios that a patient may face, nor would it be realistic to try to do so. Many states use living will FIGURE 7.3
Advance health-care directive, 1995 forms that contain vague language requiring a subjective interpretation.

The NCSL and the CICD believe that a written advance directive should ideally include both a living will and a durable power of attorney. Rather than having separate laws for these two documents, the NCSL and the CICD suggest that states should combine different right-to-die laws into a single statute. By the year 2002, 18 states had done just that. (See Table 7.1. The data in this table was still accurate as of May 2004.) Of these states, Alabama, Delaware, Hawaii, Maine, Mississippi, and New Mexico had adopted the Uniform Health-Care Decisions Act (UHCDA) as a model.

The UHCDA has been recommended by the NCSL and the CICD as a model law because it is simple and comprehensive. It contains provisions governing living wills and durable powers of attorney, as well as limits on an agent's powers. The law permits instructions regarding one's future health care to be either written or oral. States using the law as a model may adopt the optional combined directive, which does not require witnesses to the document. It further enables individuals to express their preferences about organ donation and to designate a primary physician. (See Figure 7.3, Parts 3 and 4.)

Along with showing the type of health care power of attorney and combined advance directive legislation in each state, Table 7.1 shows other related information, including the comity provision. If a state has a comity provision, it has legislation specifically requiring that another state's living will, a health care power of attorney, or both be honored within their borders.

Little Impact on End-of-Life Decision Making

In its publication Seven Deadly Myths: Uncovering the Facts about the High Cost of the Last Year of Life (Washington, DC, 1997), the Alliance for Aging Research found that even when patients have completed advance FIGURE 7.4
State statutes governing decision-making by surrogates for terminally ill patients, 2004 directives, these often have little influence on end-of-life decision-making. The Alliance observed that physicians often cannot predict with certainty that a given patient is at the end of his or her life. "Most advance directives embody the concept of not using life-sustaining measures when they would be futile. When physicians cannot predict futility, however, such instructions offer little guidance."

Advance Directives Lack Specificity

Joan M. Teno, et al., in "Do Advance Directives Provide Instructions that Direct Care?" (Journal of the American Geriatrics Society, vol. 45, no. 4, April 1997), investigated whether the content of advance directives contributes to their ineffectiveness. The researchers analyzed 688 advance directives collected from five hospitals.

Teno and her colleagues found that only 13 percent (90 advance directives) contained additional instructions beyond the general statement—not wanting treatments that would prolong death—found in standard living wills. Just 5 percent (36) gave specific instructions about the use of life-sustaining treatments, while 3 percent (22) mentioned foregoing life-sustaining treatments in the patient's current situation. The researchers pointed out that what is ordinarily at stake for very seriously or terminally ill patients is not whether efforts to prolong life should cease, but exactly which efforts and when.

The NCSL and CICD have recommended to state legislators that any advance directive form adopted be modifiable. As the health care environment continues to evolve, standard advance directives may not be applicable to specific medical conditions. Not only should advance directives be flexible enough to allow for changes in a patient's medical condition, but states should also educate FIGURE 7.5
Artificial nutrition and hydration in living will statutes, 2004 the public, as was initially intended in the Patient Self-Determination Act of 1990.