For two decades, doctors have followed an ethically-established agreement about the appropriate use of artificial nutrition and hydration (ANH) for patients who are seriously ill or in a persistent vegetative state. Generally, patients or their surrogates have been able to accept or refuse ANH based upon considerations that guide most treatment decisions, i.e., potential benefits, risks, burden, religious and cultural beliefs. The Terri Schiavo case – which included very open, dramatic disagreements among family members over such considerations – publicly challenged long-held agreements about ANH and caused many to question its proper use.
In response to such challenges, researchers from the University of Pennsylvania’s Institute on Aging and Center for Bioethics, and the Philadelphia VA’s Center for Health Equity Research and Promotion review and clarify ethical principles regarding the use of ANH. According to the authors, the five ethical principles that should guide decisions about ANH are:
* Decisions about the use of ANH should be made in the same way that decisions about other medical treatment are made.
* The same ethical reasoning applies whether withholding or withdrawing ANH.
* Decisions on the patient’s behalf require the same evidence of the patient’s preferences as is required for other significant treatment decisions.
* Decisions about ANH may be made without any evidence of the patient’s preferences.
* All Patients should receive high quality palliative care regardless of whether they receive ANH.
These recommendations are the result of a national conference held at the University of Pennsylvania in early 2005, and appear in the December 15th, 2005 issue of the New England Journal of Medicine.
“Re-examining the guiding principles of decisions to use ANH right now is essential.” asserts David Casarett, MA, MD, Assistant Professor of Geriatrics, University of Pennsylvania School of Medicine, and an investigator with the VA Center for Health Equity Research and Promotion. “It is not possible to prevent all disagreements about difficult decisions at the end of life. I guarantee that there will be another Schiavo case, or something very similar. But it is possible, and indeed it is essential, to clearly articulate the principles that should underlie decisions about ANH and to ensure that these principles guide decisions in clinical practice. Our paper was inspired by the Schiavo case,” says Casarett. “That case was the ethical equivalent of an airplane crash—a highly visible tragedy that spurs investigation, analysis, and hopefully improvements and safeguards to prevent a recurrence.”
Casarett and colleagues Jennifer Kapo, MD, Assistant Professor of Geriatric Medicine, and Arthur Caplan, PhD, Director of Penn’s Center for Bioethics, argue that because ANH is associated with uncertain benefits and significant risks, it is essential to ensure that decisions are consistent with the patient’s medical condition, prognosis, and goals for care. According to Casarett, “Artificial nutrition is generally not the life-saving treatment that people believe it to be. Unlike food and water, ANH is a medical therapy with substantial risks and burdens, which must be administered using technical medical procedures. In addition, it has no role in palliative care, since it does not promote patient comfort or ease suffering.”
The article recommends five fundamental principles for clinicians to follow and a thorough discussion of the ethical and legal justification of the decision to use ANH. The authors also review the potential obstacles to ethical decision-making in the use of ANH, including cultural beliefs, patient education, and institutional financial and regulatory pressure that might affect the care that patients receive.
“The real tragedy of the Terri Schiavo’s death” Casarett says, “was not that her family disagreed about her treatment, but rather that our politicians inserted themselves into that disagreement, like unwelcome neighbors at a private family gathering. A patient’s and family’s right to make independent decisions about ANH and other medical treatment should be defended against legal, financial, and administrative challenges at the bedside,” says Casarett. “Compassionate, ethically sound, and clinically reasonable efforts to facilitate decisions about ANH need to be part of a larger agenda to improve care for all patients with serious illness.”
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