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Ronald Reagan once said, "The most terrifying words in the English language are: I'm from the government and I'm here to help." President Reagan's quip was intended to amuse, unlike the story I am about to share. With solemnity and with all seriousness, I will borrow from his remark and make a short list of a few more terrifying words in the English language.
My list of terrifying words, after 25 years serving as a professional in the mental health and substance abuse service delivery system and currently as administrator of the federal Substance Abuse and Mental Health Services Administration (SAMHSA), would be seclusion, restraint, and "doctor's standing orders."
Not long ago, I had several hours to think about this list. Toward the end of a recent hospital stay, a medical error was made that left me voiceless in my own recovery, alone in a hospital room, and immobilized by indescribable pain.
I was admitted to a hospital to undergo surgery for a kidney stone. Less invasive procedures were not available to me, because the stone was too large. Throughout most of my hospital stay I received excellent care from the entire medical team assembled around me to oversee my treatment and to help facilitate my recovery. I remain in awe of the advances in medical science that made my health problem less dire than it would have been just a few years ago.
After surgery I worked diligently as a partner in my own recovery to speed up my healing by following the guidance of my physicians and nurses. I endured the discomfort that resulted from walking the hospital halls when they said to walk, eating what they told me to eat, and drinking what they told me to drink. I was pleased with the active part I was playing in my own recovery and was looking forward to being discharged.
On the day I was to be discharged a nurse came into my room before dawn and announced that she was going to "flush out" my healing kidney with a saline solution. I knew this would mimic the pain associated with a kidney stone attack and questioned the procedure immediately. The nurse assured me that she had to perform the procedure and that it was "doctor's standing orders." When I again resisted and expressed my concern, the nurse explained that she had to do it and that she was going to do it. She repeated her mantra of "doctor's standing orders" and added "I must do it because I don't want the doctor coming down on me."
Although concerned and still doubtful that it was either necessary or the correct thing to do, I succumbed. Drained from the surgeries, fatigued from the pain, and still in a fog from painkillers, I simply gave up my right to question any further. I gave up my voice because I was reminded that I didn't have one.
Later the same day, after the nurse had gone, my doctor came to check on me, expecting to find my condition much improved. He was livid when he discovered what had happened and explained that the procedure was certainly not among his standing orders. In fact, it was the last thing he would have ordered for me.
A mistake had been made, and my confidence in the hospital and its staff vaporized. The results of the mistake included an extension of my hospital stay, a delay in my healing, and exposure to the worst pain I had ever felt in my life. It was mind-numbing pain, and the procedure left me in a heap on my hospital bed alone. As time passed, I recalled stories by mental health consumers who had endured the use of seclusion and restraint practices at the hands of hospital staff who were also operating under "doctor's standing orders."
The similarities were too bold and too striking to ignore. As I lay in the bed alone in the sterile, white hospital room, the feeling of seclusion permeated my thoughts. The telephone began to ring, and I knew it was my wife calling to check on me; however, I was weakened and immobilized by the pain, so I couldn't reach to pick up the phone, which further highlighted my sense of isolation. My restraints were not chemical, nor was I bound to the bed by straps or ties. I was restrained by the pain. Unlike the countless mental health consumers who have endured seclusion and restraint, I received inappropriate treatment as the result of an error. At one point in our history, seclusion and restraint were viewed as appropriate treatments. Now, we know better when it comes to seclusion and restraint—they are not treatments at all, but products of treatment failure.
I can say with clarity now that the experience helped me gain a deeper, much more personal understanding of what it may mean to mental health consumers who have endured the practices of seclusion and restraint. I had always felt that I had a level of understanding, and I have always tried to reflect that understanding in my work. Now, the passion I have held for years to eliminate seclusion and restraint practices in mental health settings has been intensified and further crystallized.
At the same time, I realize that this issue is not about me, and I realize that my story pales in comparison with the stories that have been told by consumers, families, and advocates. I am blessed because I am healing and will recover. I had support from my wife, my family, and a physician who advocated on my behalf. Unlike many mental health consumers, I do not have to return over and over again to a hospital to battle a lifelong illness.
I feel more strongly than ever that I must continue the quest to reduce and eliminate such practices in this country. It is my goal for SAMHSA to work with states, providers, and provider organizations and advocates to ultimately eliminate these treatment failures (1). It can be done, and it is the right thing to do. People with mental illness should not be isolated, confined, and retraumatized by the people and services that have been put in place to help them. The use of seclusion and restraint keeps the consumer at the margins, not in the center of care.
Today our nation's mental health system is entering the early stages of a wholesale transformation, which includes meeting the long sought after and sometimes elusive goal of placing consumers squarely at the center of care. Some providers of mental health services incorporated the principles of consumer-driven care years ago, whereas others still practice under the philosophy that providers and staff know best. All too often the voices of consumers remain unheard. Consumers must be given the opportunity to participate in their treatment, make decisions, and learn how to manage their illness and thus manage their lives. That is recovery.
In 2002 President Bush created the New Freedom Commission on Mental Health to conduct a comprehensive study of the United States mental health service delivery system and to advise the President on methods of improving the system to enable adults with serious mental illness and children with serious emotional disturbances to live, work, learn, and participate fully in their communities. Our current system has been studied, and recommendations—along with corresponding goals—have been set and made clear. We are moving forward and making progress toward transforming mental health care delivery in America. However, I am reminded of the words spoken by Gary Tischler, M.D., who participated in the Carter Commission on Mental Health 25 years ago. Dr. Tischler made an observation that many of the recommendations of the Carter Commission on Mental Health and the New Freedom Commission on Mental Health, convened a quarter of a century later, are similar and that, sadly, we still face some of the very same issues. He said something that is very true: "It seems as though the advances of science and technology far exceed our abilities to solve problems related to attitudes, bureaucracies, and the human condition."
I think he is on to something. Attitudes, bureaucracies, and the human condition are what I fear will get most in the way of transforming the mental health system and may keep it from truly becoming a consumer-driven system that is central and critical in many ways to the public health of our nation. Perhaps a short list of a few of the most promising words in the English language for mental health consumers could serve to guide us all. The list, I suspect, would be: hope, dignity, empowerment, and recovery.
Mr. Curie is administrator of the Substance Abuse and Mental Health Services Administration. Send correspondence to him at 1 Choke Cherry Road, Rockville, Maryland 20857 (e-mail, firstname.lastname@example.org). Jeffrey L. Geller, M.D., M.P.H., is editor of this column.
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