Living wills are the principal legal device that individuals can use to formally communicate their end-of-life treatment preferences and exercise precedent autonomy. Until recently, most research suggested that living wills are not very effective in allowing individuals to control their end-of life care and the POLST was specifically designed to overcome barriers that were believed to thwart the effectiveness of living wills. Here, I summarize the research on living wills and discuss some of the perceived weaknesses of those documents
Most studies of advance directives do not differentiate between instruction directives and proxy directives, and many of the earlier studies found that advance directives had little effect on what happens in the hospital and ICU. For example, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) reviewed the care received by 618 patients with advance directives (i.e. proxy directives, instruction directives, and combined forms) and found that such directives “were irrelevant to decision- making” for end-of-life hospital care (Teno et al. 1994). Similarly, Kish Wallace, Martin,
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Shaw, and Price (2001) examined the records of 135 matched pairs of critically ill cancer patients admitted to the ICU of a comprehensive cancer center with and without advance directives. They found that “there were no differences regarding the frequency with which life-supporting interventions were initiated with and without advance directives.” Ditto and Hawkins (2005) probably summarized the consensus view that existed only a few years ago when they said the “institutionalization of advance directives in American law and medical practice….stands in stark contrast to a growing body of research challenging their effectiveness in producing specific improvements in end-of-life medical care.”
Recent research has produced results more favorable to living wills. Teno, Gruneir, Schwartz, Nanda, and Wetle (2007) found that patients with an advance directive (i.e. a proxy directive or an instruction directive) were significantly less likely to die in an ICU and that such directives were “associated with less use of life-sustaining treatment, greater use of hospice and less likelihood of terminal hospitalization.” Degenholtz, Rhee and Arnold (2004) specifically studied instruction directives and found that they “are associated with a lower probability of in-hospital death for people older than 70 years of age, after adjustment for health status and other factors.” Silveira, Kim, and Langa (2010) reviewed data involving more than 3700 deaths in settings that included home, hospice, nursing home and hospital. The researchers found a strong agreement between treatment preferences stated in living wills and care received at the end of life. Nicholas, Langa, Iwashyna, and Weir (2011) reviewed end-of-life care received by 3302 decedents. They found that individuals with a treatment limiting advance directive were less likely to die in a hospital and more likely to use hospice. When the data was adjusted for demographic and socioeconomic factors, these effects persisted, but only in regions of the county that were characterized by higher levels of
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end-of-life spending. Still, the recent research on the effectiveness of living wills is not all favorable. Halpern, Pastores, Chou, Chawla and Thaler (2011) found that neither a living will nor a health care proxy had an effect on clinical care in a cancer center. The best we can say today is living wills may be effective in some circumstances.
At an abstract level it is easy to understand why living wills might be ineffective. Instruction directives try to solve an unsolvable problem – that of directing specific medical care under unknown future circumstances. Living wills are typically drafted months or years in advance of a medical crisis. If the directive is drafted broadly, then it must be interpreted by doctors and the family, and the steps to be taken under it are often unclear. If the directive is drafted narrowly, then the range of circumstances to which it applies is likewise narrow or “its length and complexity would have to be increased” (President’s Commission, 1982, p. 157). Regardless of its breadth, instruction directives can only address “a limited range of medical situations that occur frequently enough to be of general concern to people” (p. 158).
Even if an instruction directive is sufficiently specific to provide meaningful direction for a patient’s particular medical condition, there are numerous procedural obstacles to its implementation. Ditto and Hawkins (2005) set forth a series of distinct hurdles that must be overcome before a patient’s wishes will be honored through a living will. First, the patient must complete the directive. This can be a significant obstacle. Resnick, Schuur, Heineman, Stone, and Weissman (2008) analyzed data from the 2004 National Nursing Home Survey and found only 20% of residents had living wills.
Assuming the patient completes a living will, there are the other barriers to compliance with patient treatment instructions identified by Ditto and Hawkins (2005). The wishes expressed in the directive must be authentic, which means that individuals are able to
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imagine themselves in states of future illness and accurately predict what their preferences will be should they actually experience that state. Surrogates responsible for making decisions when a patient becomes unable to communicate must know of the existence of the living will so it can be retrieved and presented to the patient’s physician. The physicians responsible for the patient’s care must be able to interpret and apply what is written in the directive to the patient’s current condition. Finally, both the patient’s surrogate and the physician must be willing to comply with the directive in the context of the patient’s current medical condition.
It is clear that instruction directives often do not cause doctors to implement end-of- life treatment preferences expressed by patients. As a result, many patients who want to control their care at the end of life are unable to do so. This had led to a search for other legal devices that a patient can use to provide binding instructions that will direct his or her end-of-life medical care. The POLST is one response to that search.16