Health Care Directives
Historical Overview
Since the early 1970s, Americans have been encouraged to complete advance directives to ensure that physicians and family members will know their end-of-life treatment wishes in the event that they become unable to participate in decision making.
Many Americans fear becoming trapped in a dehumanizing medical system that ignores their personal goals and wishes, robs them of privacy and dignity, and prolongs their dying with painful and ineffective technological interventions.
Health care providers, educators, and those involved in health care policy maintainer that, in order to avoid unwanted end-of-life situations , decisional capable adults can extend their current autonomy into the future by participating in advance care planning and completing advance directives (ADs).
Advance Health Care Directives and Their Forms
Although each state stipulates and defines the conditions under which ADs become operational, honoring the instructions in living wills is invariably contingent upon a clinician's determination that the patient has lost decisional capacity and that he or she has a "terminal" or "incurable" condition . Both of these qualifying conditions require a medical judgment to be made.
Decision Making And Judgemental Aspects
Treatment decisions made by the surrogate are expected to be consistent with those that would have been made by the now incompetent patient, a standard of decision making known as "substituted judgment." Some state statutes combine written and appointment directions in one document.
A decision not to attempt cardiopulmonary resuscitation is another form of ADs and is usually made by a surrogate following a physician recommendation, when the physician determines that a resuscitation attempt would e i there be medically futile or extraordinarily burdensome in light of the patient's current condition.
Right To Die
Since 1976, when the first so-called "right- to die" case involving Karen Ann Quinlan was decided, members of the public, religious groups, and health care professionals have. engaged in a vigorous debate about the acceptability of stopping life-prolonging treatment and allowing death to occur .
The individual at the center of these early "right-to - die" cases were almost always young adults who had lost decisional capacity, often as a result of a traumatic injury, and left no written ten documentation or clear verbal instructions about their end of life treatment wishes.
Their family members had to petition the courts in order to stop unwanted life-prolonging treatments. In 1990, the United States Supreme Court upheld Missouri's evidentiary standard that required "clear and convincing evidence" of the then vegetative Nancy Cruzan 's wishes before permitting her family to discontinue the tube feedings that were sustaining her life.
Self Determination In Philosophical View
Individual state legislatures have provided additional support for ADs; all 50 states have completed some form of statutory recognition of these documents.
Despite a great deal of effort and subsequent publicity that included syndicated newspaper columns by Ann Landers and "Dear Abby" among other attempts to educate and motivate the public about these documents, completion rates for advance directives continue to range from 4% to 25% (Perkins, 2000).
Even when patients have completed an AD, clinicians observe that they are often unavailable, or not applicable in many situations involving critically ill adults (Tonelli, 1996). Researchers are now examining how ADs actually function in various clinical settings, and are exploring whether the presence of an AD ensures compliance with patients' end-of-life treatment wishes.
Others are questioning the very relevance of ADs to advance care planning (Perkins, 2000; Drought & Koenig, 2002). Nonetheless, surveys of patients and health care professionals have consistently demonstrated widespread support for the idea of ADs as an effective means to ensure that end-of-life interventions conform with patients' wishes.
Studies have found that while ADs are reassuring to patients who complete them, they do not ensure that a patient's end-of-life wishes will be followed. In a study by Tierney et al. (2001), investigators found that discussions about ADs improved the care satisfaction of elderly patients.
With chronic illnesses, but a second study found that having an 'instructional AD did not increase the likelihood that family decision makers would make treatment choices that accurately reflected the patient's end-of-life wishes as stipulated in the AD (Ditto et al., 2001).
Ditto and colleagues also found that family members' predictions of what the patient would want were correct less than 70% of the time, and families were two to three times as likely to make errors of over-treatment as under-treatment-eg, approving life-sustaining treatments the patient would not have wanted under the circumstances.
Health Care Providers Contributions
In a study by geriatric nurse researchers that aimed to explore advance care planning (ACP) and end-of-life care for nursing home residents who were hospitalized during the last 6 weeks of life, Happening and colleagues (2002) found that the primary focus of ACP in the nursing home was on cardiopulmonary resuscitation preferences.
By so limiting ACP discussions, end-of-life treatment choices were inappropriately constrained and oversimplified, with the result that the benefits of palliative or hospice end-of-life interventions were underutilized. In another study, researchers aimed to evaluate the effect of an ACP intervention on the completion of ADs and patient satisfaction among persons with HIV/AIDS.
Although the rate of completion for ADs went from 16.4% to 40.7% following three face to face counseling sessions about ADs, it was subsequently noted that 23% of the completed ADs were deemed legally invalid (Ho, Thiel, Rubin , & Singer, 2000).
Research Outcomes & Comparison
Another group of researchers compared. the accuracy of substituted judgments made by primary care physicians, hospital-based physicians, and family surrogates on behalf of elderly outpatients, and explored the effectiveness of ADs in improving the accuracy of those judgments.
Coppola, Ditto, Danks , and Smucker (2001) found that familiarity with the patient's AD did not improve the accuracy of substituted judgments for primary care physicians or family surrogates; it did increase the accuracy of the judgments made by hospital based physicians.
Drought and Koenig (2002), nurse ethicists , conducted an ethnographic, longitudinal study of terminally ill patients with solid tumor cancer or AIDS that explored the difficult - cult medical decisions each patient faced in the course of their illness and treatment, these researchers concluded that shared decision making is illusory, terminal patients frequently resist advance care planning, and hold values other than autonomy as important .
They cited substantial support for their observations that no studies to date have shown that ADs significantly facilitated end-of-life decision making, truly direct care, or saved resources at the end of life.
Many commentators noted the following difficulties associated with use of instructive directives: incomplete information, the in ability to anticipate future medical conditions , and uncertainty regarding the meaning and intent of written instructions.
These problems of interpretation require clinicians to seek information from others in the attempt to determine what the patient "really meant" (Tonelli, 1996).
Tonelli and others concluded that, because of the limitations associated with the use of instructive directives, proxy directives are the preferred form of AD (Dexter, Wolinsky , Gramelspachar , Eckert , & Tierney, 2003; Perkins, 2000; Tonelli).
Clearly, there is a need for further research to explore whether ADs facilitate good end- of-life care, and nurses are ideally situated to direct and participate in furthering understanding of these documents.
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