LETTER TO EDTOR: Care over research

By | Tuesday, August 26, 2008

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I, and every reader, can feel the pain and anguish of the family chronicled in The Times article "Hospital released vet who refused study" (Page 1, Friday). The disease mentioned, Creutzfeldt-Jakob disease, is devastating, unremitting and, as yet, without cure.

It is also difficult to sort out from other diseases with similar symptoms. Medicine does not know why it progresses more quickly in some people than in others. It is for these reasons that medical research is done - to understand better how to improve the chances of the next veteran who has such a problem.

In this case, a National Institutes of Health (NIH) study in which the Department of Veterans Affairs partnered with Mount Sinai Hospital, a world renowned academic medical center, was offered to the patient. The study was designed, as noted, to observe and to learn more about "conditions affecting memory or thinking, including Alzheimer's disease and related disorders." The research was to study the progression of disease, not to offer an experimental treatment. The study's consent form even states that "this study is not designed to benefit participants."

I can only apologize that Aimee Fitzgerald perceived a sense of callousness or a sense that there were some additional diagnostic or other measures to be offered as she sought answers to unanswerable questions about her ailing husband, Joe. It will renew our emphasis to VA staff about sensitivity in communicating. I and the VA completely share the view of bioethicist Arthur Caplan that the goal of the medical encounter must be first and foremost to provide the latest and best care when care is available, that research must take a secondary role to receiving patient care and that no one should be penalized for failing to volunteer for a study, ever.

It is the VA's policy - clearly stated in our regulations, directives, patient literature and the protocol consent form - that a patient has a right to say no to participating in a research study and that decision will not affect the VA health care or benefits the patient receives.

In serving our veterans, we have an absolute obligation to provide not only the highest quality care and to provide that care with attention and compassion, but to find better ways to care for our patients through research with the highest scientific and ethical standards. It is what we strive for every single day across our system. I can only apologize for the family's perception in this tragic case and to let them know that it will serve as a systemwide reminder about the importance of clear and compassionate communication.

DR. JAMES B. PEAKE

Secretary of veterans affairs

Washington

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