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Jeopardy -- More Than a Game for Research Subjects

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  • Earl E. Appleby, Jr.
    During my father s last hospitalization, the hospital advised my mother and me that their bioethics committee was going to discuss his case. We conveyed in no
    Message 1 of 7 , Mar 9 5:55 AM
    • 0 Attachment

      During my father’s last hospitalization, the hospital advised my mother and me that their bioethics committee was going to discuss his case. We conveyed in no uncertain terms our family’s absolute refusal to allow my father’s private medical affairs to be discussed by persons not directly involved in his treatment.

       

      Our motive was that we did not wish the pervasive TAB bias against treating my father, who had been living in coma for several years, to  exploit my father as a case history to indoctrinate others with “quality-of-life” rationalizations for euthanasia.

       

      Before my father began his life in coma on February 26, 1981, he had taped his personal testimony opposing what he called a “right to kill, or rather, right to murder” bill in the New Hampshire State Legislature. Dad had made this tape with considerable difficulty, as he was recovering from recent cancer surgery – the reason that he was unable to testify in person as he had intended.

       

      The result of my mother’s playing this tape before the House committee considering the “right-to-die” bill was their banning of any further legislative testimony by tape. Why hear from those you plan to kill, after all?

       

      But that’s another story. Because of the hospital bioethics committee “right to privacy,” I was unable to confirm whether our refusal to allow them to invade my father’s privacy had been honored. “Privacy” in this context is often the one-way street CURE is accustomed to encountering when defending the rights of patients against the power of providers.

       

      In this regard, you may find the following story of interest. Further information and additional media coverage, including the Chronicles of Higher Education article referenced below, is available at http://www.freesheldon.org. For comprehensive information about protecting the rights of potential research subjects, visit the Alliance for Human Research Protections’ website at http://www.researchprotection.org.

       

      But first read this account from the University of Pennsylvania’s Daily Pennsylvanian. –Earl

       

      Earl E. Appleby, Jr.                    304-258-LIFE/5433

      Director, CURE, Ltd.                  304-258-5420 (fax)

      303 Truman St.                          cureltd@...

      Berkeley Springs, WV 25411     cureltd.home.netcom.com

      ----------------------------------------------------------------------------

                          Caring When Care Is Critical

       

      --cut here—

       

      Anthro notes at center of lawsuit

      Sheldon Zink has refused to turn over notes she took while observing a medical procedure.

      by Lina Shustarovich

       

      Penn medical anthropologist Sheldon Zink has been fighting off subpoenas from local lawyers requesting her to turn over her field notes on an  artificial heart transplant into a man who died following surgery.

       

      Zink, director of transplant policy and ethics at Penn's Center for Bioethics, acted as a researcher observing a clinical trial of artificial heart transplantation starting in February 2001. She was in the operating room at Hahnemann University Hospital on Nov. 5, 2001, when James Quinn, one of the volunteers in the clinical trial, received an artificial heart. She was also the patient's advocate during the last two months of his life.

       

      When Quinn died nine months after the transplant, his widow filed lawsuits against Hahnemann, AbioCor -- the maker of the artificial heart -- and Quinn's original patient advocate, Professor of Geriatrics David Casarett, whom Zink replaced upon the Quinn family's requests, as well as other hospitals.

       

      Hahnemann University Hospital spokesperson Molly Tritt said that the suit against the hospital was filed on Oct. 17, 2002. At that point, the     hospital issued a statement saying, "We are disappointed that Mrs. Quinn decided to sue us. James Quinn was a true American hero. We trust his contribution to the treatment of heart disease will benefit patients for years to come."

       

      Because of Zink's presence throughout the procedure, both Casarett's attorney Thomas Wagner and Hanhemann's attorney Timothy McCann filed subpoenas requesting that Zink turn over her field notes to the court.

          

      However, she refused to do so, arguing that she must protect the patient's rights to privacy.

          

      "I think it's a trust issue with researchers in the field, and [sharing field notes] would impact the way we do our research," Zink said. "It     would put the research subject in jeopardy, and we should protect them as much as we can."

           

      The American Anthropological Association does have a code of ethics stating that "anthropological researchers must do everything in their      power to ensure that their research does not harm the safety, dignity or privacy of the people with whom they work, conduct research or perform other professional activities."

           

      Zink said she believes that she is just following this code.

           

      "There is not a circumstance that I can fathom that I would ever give over my ethnographic notes to anyone," she said.

       

      According to Zink, five subpoenas have been filed. One, filed by Casarett's lawyer, was withdrawn on Monday, and an additional four were     filed by McCann.

       

      Zink said while the deadlines of the subpoenas filed by McCann have all lapsed, "none of them have been withdrawn," and she thinks that McCann will reinstate them.

       

      "I have no reason to believe that even if subpoenas are canceled right now that they won't be reinstated," Zink said.

       

      "None of these guys have ever picked up the phone and talked to me," Zink added, mentioning that McCann had called her once and was "intimidating" and "threatening."

       

      Wagner confirmed that the subpoena against Zink had been withdrawn earlier this week. It originally held a deadline of Wednesday.

       

      "The subpoena on Dr. Zink was to get her notes because she was observing Mr. Quinn's care while my client was working with Mr. Quinn," Wagner said.

       

      Wagner said that the notes might be helpful in the lawsuit against Casarett because Zink "closely observed Mr. Quinn's care," and her notes    might help him defend his client.

       

      However, Wagner said that he withdrew the subpoena "after we learned of Dr. Zink's strong objections."

       

      "I don't want to be hostile," Wagner said. "I want to work the issue out."

       

      "Whether we ever get to the point where we'll serve it again I don't know, but I suspect that we will eventually succeed in working it out," he

      added.

       

      McCann said that he had previously filed a subpoena against Zink but had canceled it.

       

      "We don't anticipate needing her notes or sending her another subpoena," McCann said. But Zink said she expects continued pressure to turn over her notes and believes that the subpoenas had not been canceled.

       

      The case has drawn national attention from anthropologists and others who want to make sure that field notes are kept private. Zink's students and colleagues have started a Web site called FreeSheldon.org, and other anthropologists have signed petitions supporting Zink's decision to go against the subpoenas, The Chronicle of Higher Education reported.

       

      A statement posted on the Web site states, "Forced disclosure of field notes, tapes and transcriptions endangers the academic freedom safeguarded by the First Amendment. This jeopardizes all of academic research, as well as our ability to disseminate information for the public good. All future anthropological research is being threatened."

            

      [Daily Pennsylvanian, March 7, 2003]

        

       

       

       

        

       

       

       

    • Mark Wilson
      Because of the hospital bioethics committee “right to privacy,” I was unable to confirm whether our refusal to allow them to invade my father’s privacy
      Message 2 of 7 , Mar 9 12:19 PM
      • 0 Attachment

        During my father’s last hospitalization, the hospital advised my mother and me that their bioethics committee was going to discuss his case. We conveyed in no uncertain terms our family’s absolute refusal to allow my father’s private medical affairs to be discussed by persons not directly involved in his treatment.

         

        Our motive was that we did not wish the pervasive TAB bias against treating my father, who had been living in coma for several years, to  exploit my father as a case history to indoctrinate others with “quality-of-life” rationalizations for euthanasia.

         

        Before my father began his life in coma on February 26, 1981, he had taped his personal testimony opposing what he called a “right to kill, or rather, right to murder” bill in the New Hampshire State Legislature. Dad had made this tape with considerable difficulty, as he was recovering from recent cancer surgery – the reason that he was unable to testify in person as he had intended.

         

        The result of my mother’s playing this tape before the House committee considering the “right-to-die” bill was their banning of any further legislative testimony by tape. Why hear from those you plan to kill, after all?

         

        But that’s another story. Because of the hospital bioethics committee “right to privacy,” I was unable to confirm whether our refusal to allow them to invade my father’s privacy had been honored. “Privacy” in this context is often the one-way street CURE is accustomed to encountering when defending the rights of patients against the power of providers.

         

        In this regard, you may find the following story of interest. Further information and additional media coverage, including the Chronicles of Higher Education article referenced below, is available at http://www.freesheldon.org. For comprehensive information about protecting the rights of potential research subjects, visit the Alliance for Human Research Protections’ website at http://www.researchprotection.org.

         

        But first read this account from the University of Pennsylvania’s Daily Pennsylvanian. –Earl

         

        Earl E. Appleby, Jr.                    304-258-LIFE/5433

        Director, CURE, Ltd.                  304-258-5420 (fax)

        303 Truman St.                          cureltd@...

        Berkeley Springs, WV 25411     cureltd.home.netcom.com

        ----------------------------------------------------------------------------

                            Caring When Care Is Critical

         

        --cut here—

         

        Anthro notes at center of lawsuit

        Sheldon Zink has refused to turn over notes she took while observing a medical procedure.

        by Lina Shustarovich

         

        Penn medical anthropologist Sheldon Zink has been fighting off subpoenas from local lawyers requesting her to turn over her field notes on an  artificial heart transplant into a man who died following surgery.

         

        Zink, director of transplant policy and ethics at Penn's Center for Bioethics, acted as a researcher observing a clinical trial of artificial heart transplantation starting in February 2001. She was in the operating room at Hahnemann University Hospital on Nov. 5, 2001, when James Quinn, one of the volunteers in the clinical trial, received an artificial heart. She was also the patient's advocate during the last two months of his life.

         

        When Quinn died nine months after the transplant, his widow filed lawsuits against Hahnemann, AbioCor -- the maker of the artificial heart -- and Quinn's original patient advocate, Professor of Geriatrics David Casarett, whom Zink replaced upon the Quinn family's requests, as well as other hospitals.

         

        Hahnemann University Hospital spokesperson Molly Tritt said that the suit against the hospital was filed on Oct. 17, 2002. At that point, the     hospital issued a statement saying, "We are disappointed that Mrs. Quinn decided to sue us. James Quinn was a true American hero. We trust his contribution to the treatment of heart disease will benefit patients for years to come."

         

        Because of Zink's presence throughout the procedure, both Casarett's attorney Thomas Wagner and Hanhemann's attorney Timothy McCann filed subpoenas requesting that Zink turn over her field notes to the court.

            

        However, she refused to do so, arguing that she must protect the patient's rights to privacy.

            

        "I think it's a trust issue with researchers in the field, and [sharing field notes] would impact the way we do our research," Zink said. "It     would put the research subject in jeopardy, and we should protect them as much as we can."

             

        The American Anthropological Association does have a code of ethics stating that "anthropological researchers must do everything in their      power to ensure that their research does not harm the safety, dignity or privacy of the people with whom they work, conduct research or perform other professional activities."

             

        Zink said she believes that she is just following this code.

             

        "There is not a circumstance that I can fathom that I would ever give over my ethnographic notes to anyone," she said.

         

        According to Zink, five subpoenas have been filed. One, filed by Casarett's lawyer, was withdrawn on Monday, and an additional four were     filed by McCann.

         

        Zink said while the deadlines of the subpoenas filed by McCann have all lapsed, "none of them have been withdrawn," and she thinks that McCann will reinstate them.

         

        "I have no reason to believe that even if subpoenas are canceled right now that they won't be reinstated," Zink said.

         

        "None of these guys have ever picked up the phone and talked to me," Zink added, mentioning that McCann had called her once and was "intimidating" and "threatening."

         

        Wagner confirmed that the subpoena against Zink had been withdrawn earlier this week. It originally held a deadline of Wednesday.

         

        "The subpoena on Dr. Zink was to get her notes because she was observing Mr. Quinn's care while my client was working with Mr. Quinn," Wagner said.

         

        Wagner said that the notes might be helpful in the lawsuit against Casarett because Zink "closely observed Mr. Quinn's care," and her notes    might help him defend his client.

         

        However, Wagner said that he withdrew the subpoena "after we learned of Dr. Zink's strong objections."

         

        "I don't want to be hostile," Wagner said. "I want to work the issue out."

         

        "Whether we ever get to the point where we'll serve it again I don't know, but I suspect that we will eventually succeed in working it out," he

        added.

         

        McCann said that he had previously filed a subpoena against Zink but had canceled it.

         

        "We don't anticipate needing her notes or sending her another subpoena," McCann said. But Zink said she expects continued pressure to turn over her notes and believes that the subpoenas had not been canceled.

         

        The case has drawn national attention from anthropologists and others who want to make sure that field notes are kept private. Zink's students and colleagues have started a Web site called FreeSheldon.org, and other anthropologists have signed petitions supporting Zink's decision to go against the subpoenas, The Chronicle of Higher Education reported.

         

        A statement posted on the Web site states, "Forced disclosure of field notes, tapes and transcriptions endangers the academic freedom safeguarded by the First Amendment. This jeopardizes all of academic research, as well as our ability to disseminate information for the public good. All future anthropological research is being threatened."

              

        [Daily Pennsylvanian, March 7, 2003]

          

         

         

         

          

         

         

         



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      • Colin J Moore
        Are the hospital Bioethics Committees you referred to subject to any over - arching legislation or do they act independently? It seems incredible to me that
        Message 3 of 7 , Mar 9 7:11 PM
        • 0 Attachment
          Are the hospital Bioethics Committees you referred to subject to any over - arching legislation or do they act independently? It seems incredible to me that power to determine questions of life and death could be left to such mechanisms. We have a different approach here in sunny Queensland, Australia. Any system is , ipso facto, flawed but ours has produced some positive changes. Euthanasia is outlawed here although artificial life supports can be severed in cases of "brain death". Ouch, that is messy given the number of people so declared who have come back to life. On the other hand prolonged life support has also produced terrible suffering for families. One of the approaches here is to attempt to respect factors such as culture and wishes of the person with impaired decision-making capacity. Here is its website link:   www.justice.qld.gov.au/guardian/gaat/contact.htm

          [Colin J Moore]  -----Original Message-----
          From: Mark Wilson [mailto:wilson_mark@...]
          Sent: Monday, 10 March 2003 6:19 AM
          To: Bioethics@yahoogroups.com
          Subject: Re: [Bioethics] Jeopardy -- More Than a Game for Research Subjects

          During my father’s last hospitalization, the hospital advised my mother and me that their bioethics committee was going to discuss his case. We conveyed in no uncertain terms our family’s absolute refusal to allow my father’s private medical affairs to be discussed by persons not directly involved in his treatment.

           

          Our motive was that we did not wish the pervasive TAB bias against treating my father, who had been living in coma for several years, to  exploit my father as a case history to indoctrinate others with “quality-of-life” rationalizations for euthanasia.

           

          Before my father began his life in coma on February 26, 1981, he had taped his personal testimony opposing what he called a “right to kill, or rather, right to murder” bill in the New Hampshire State Legislature. Dad had made this tape with considerable difficulty, as he was recovering from recent cancer surgery – the reason that he was unable to testify in person as he had intended.

           

          The result of my mother’s playing this tape before the House committee considering the “right-to-die” bill was their banning of any further legislative testimony by tape. Why hear from those you plan to kill, after all?

           

          But that’s another story. Because of the hospital bioethics committee “right to privacy,” I was unable to confirm whether our refusal to allow them to invade my father’s privacy had been honored. “Privacy” in this context is often the one-way street CURE is accustomed to encountering when defending the rights of patients against the power of providers.

           

          In this regard, you may find the following story of interest. Further information and additional media coverage, including the Chronicles of Higher Education article referenced below, is available at http://www.freesheldon.org. For comprehensive information about protecting the rights of potential research subjects, visit the Alliance for Human Research Protections’ website at http://www.researchprotection.org.

           

          But first read this account from the University of Pennsylvania’s Daily Pennsylvanian. –Earl

           

          Earl E. Appleby, Jr.                    304-258-LIFE/5433

          Director, CURE, Ltd.                  304-258-5420 (fax)

          303 Truman St.                          cureltd@...

          Berkeley Springs, WV 25411     cureltd.home.netcom.com

          ----------------------------------------------------------------------------

                              Caring When Care Is Critical

           

          --cut here—

           

          Anthro notes at center of lawsuit

          Sheldon Zink has refused to turn over notes she took while observing a medical procedure.

          by Lina Shustarovich

           

          Penn medical anthropologist Sheldon Zink has been fighting off subpoenas from local lawyers requesting her to turn over her field notes on an  artificial heart transplant into a man who died following surgery.

           

          Zink, director of transplant policy and ethics at Penn's Center for Bioethics, acted as a researcher observing a clinical trial of artificial heart transplantation starting in February 2001. She was in the operating room at Hahnemann University Hospital on Nov. 5, 2001, when James Quinn, one of the volunteers in the clinical trial, received an artificial heart. She was also the patient's advocate during the last two months of his life.

           

          When Quinn died nine months after the transplant, his widow filed lawsuits against Hahnemann, AbioCor -- the maker of the artificial heart -- and Quinn's original patient advocate, Professor of Geriatrics David Casarett, whom Zink replaced upon the Quinn family's requests, as well as other hospitals.

           

          Hahnemann University Hospital spokesperson Molly Tritt said that the suit against the hospital was filed on Oct. 17, 2002. At that point, the     hospital issued a statement saying, "We are disappointed that Mrs. Quinn decided to sue us. James Quinn was a true American hero. We trust his contribution to the treatment of heart disease will benefit patients for years to come."

           

          Because of Zink's presence throughout the procedure, both Casarett's attorney Thomas Wagner and Hanhemann's attorney Timothy McCann filed subpoenas requesting that Zink turn over her field notes to the court.

              

          However, she refused to do so, arguing that she must protect the patient's rights to privacy.

              

          "I think it's a trust issue with researchers in the field, and [sharing field notes] would impact the way we do our research," Zink said. "It     would put the research subject in jeopardy, and we should protect them as much as we can."

               

          The American Anthropological Association does have a code of ethics stating that "anthropological researchers must do everything in their      power to ensure that their research does not harm the safety, dignity or privacy of the people with whom they work, conduct research or perform other professional activities."

               

          Zink said she believes that she is just following this code.

               

          "There is not a circumstance that I can fathom that I would ever give over my ethnographic notes to anyone," she said.

           

          According to Zink, five subpoenas have been filed. One, filed by Casarett's lawyer, was withdrawn on Monday, and an additional four were     filed by McCann.

           

          Zink said while the deadlines of the subpoenas filed by McCann have all lapsed, "none of them have been withdrawn," and she thinks that McCann will reinstate them.

           

          "I have no reason to believe that even if subpoenas are canceled right now that they won't be reinstated," Zink said.

           

          "None of these guys have ever picked up the phone and talked to me," Zink added, mentioning that McCann had called her once and was "intimidating" and "threatening."

           

          Wagner confirmed that the subpoena against Zink had been withdrawn earlier this week. It originally held a deadline of Wednesday.

           

          "The subpoena on Dr. Zink was to get her notes because she was observing Mr. Quinn's care while my client was working with Mr. Quinn," Wagner said.

           

          Wagner said that the notes might be helpful in the lawsuit against Casarett because Zink "closely observed Mr. Quinn's care," and her notes    might help him defend his client.

           

          However, Wagner said that he withdrew the subpoena "after we learned of Dr. Zink's strong objections."

           

          "I don't want to be hostile," Wagner said. "I want to work the issue out."

           

          "Whether we ever get to the point where we'll serve it again I don't know, but I suspect that we will eventually succeed in working it out," he

          added.

           

          McCann said that he had previously filed a subpoena against Zink but had canceled it.

           

          "We don't anticipate needing her notes or sending her another subpoena," McCann said. But Zink said she expects continued pressure to turn over her notes and believes that the subpoenas had not been canceled.

           

          The case has drawn national attention from anthropologists and others who want to make sure that field notes are kept private. Zink's students and colleagues have started a Web site called FreeSheldon.org, and other anthropologists have signed petitions supporting Zink's decision to go against the subpoenas, The Chronicle of Higher Education reported.

           

          A statement posted on the Web site states, "Forced disclosure of field notes, tapes and transcriptions endangers the academic freedom safeguarded by the First Amendment. This jeopardizes all of academic research, as well as our ability to disseminate information for the public good. All future anthropological research is being threatened."

                

          [Daily Pennsylvanian, March 7, 2003]

            

           

           

           

            

           

           

           



          Community email addresses:gwolbrin@...
            Post message: Bioethics@egroups.com
            Subscribe:    Bioethics-subscribe@egroups.com
            Unsubscribe:  Bioethics-unsubscribe@egroups.com
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        • mkuczew@lumc.edu
          Perhaps I can clarify a little. Ethics committees are not usually seen as decision-making bodies in American hospitals. Most often, they are viewed as quality
          Message 4 of 7 , Mar 10 11:25 AM
          • 0 Attachment
            Perhaps I can clarify a little. Ethics committees are not usually seen as decision-making bodies in American hospitals. Most often, they are viewed as quality assurance mechanisms. So, a physician may meet with a committee and review options, hear summaries of the literature on an issue, etc. In other words, the process would aim at clarifying options. In the end, the physician is the medical decision maker and writes the physician orders in the chart. The"chart," i.e., the patient's medical record, is a document open to the patient.
             
            The theory of quality assurance is that patients will receive better quality care if there are mechanisms of review in which mistakes can be parsed, etc, without fear. Most quality assurance mechanisms in a hospital are retrospective, e.g., an M & M conference is the quintessential example. This is where you see it gets a little sticky. 
             
            If members of the committee are acting as part of an ethics consultation service that is doing concurrent case review, usually they end the process by placing their recommendations in the medical record and the patient can see them. As with all medical consultation recommendations, these are recommendations, not decisions. Again, the physician must decide whether to take the recs or not.
             
            But, I understand the problem--it's a pretty fine line between simply clarifying options and making recommendations. In the former case, in principle, records need not be made available. In the latter, they should result in a chart note. Either way, though, we are talking about options and recommendations, not decisions that anyone has to carry out - that belongs to the attending physician.
             
            Mark K.
             
             
             
            Mark G. Kuczewski,PhD
            Director, Neiswanger Institute for
            Bioethics & Health Policy
            Stritch School of Medicine
            Loyola University Chicago
            2160 S. First Avenue
            Bldg 120, Room 280
            Maywood, IL 60153
            mailto: mkuczew@...
             
            Learn about our new online MA Program:
            http://bioethics.lumc.edu

            >>>
            cjmoore52@... 03/09/03 09:11PM >>>
            Are the hospital Bioethics Committees you referred to subject to any over - arching legislation or do they act independently? It seems incredible to me that power to determine questions of life and death could be left to such mechanisms. We have a different approach here in sunny Queensland, Australia. Any system is , ipso facto, flawed but ours has produced some positive changes. Euthanasia is outlawed here although artificial life supports can be severed in cases of "brain death". Ouch, that is messy given the number of people so declared who have come back to life. On the other hand prolonged life support has also produced terrible suffering for families. One of the approaches here is to attempt to respect factors such as culture and wishes of the person with impaired decision-making capacity. Here is its website link:   www.justice.qld.gov.au/guardian/gaat/contact.htm

            [Colin J Moore]  -----Original Message-----
            From: Mark Wilson [mailto:wilson_mark@...]
            Sent: Monday, 10 March 2003 6:19 AM
            To: Bioethics@yahoogroups.com
            Subject: Re: [Bioethics] Jeopardy -- More Than a Game for Research Subjects

            During my father’s last hospitalization, the hospital advised my mother and me that their bioethics committee was going to discuss his case. We conveyed in no uncertain terms our family’s absolute refusal to allow my father’s private medical affairs to be discussed by persons not directly involved in his treatment.

             

            Our motive was that we did not wish the pervasive TAB bias against treating my father, who had been living in coma for several years, to  exploit my father as a case history to indoctrinate others with “quality-of-life” rationalizations for euthanasia.

             

            Before my father began his life in coma on February 26, 1981, he had taped his personal testimony opposing what he called a “right to kill, or rather, right to murder” bill in the New Hampshire State Legislature. Dad had made this tape with considerable difficulty, as he was recovering from recent cancer surgery – the reason that he was unable to testify in person as he had intended.

             

            The result of my mother’s playing this tape before the House committee considering the “right-to-die” bill was their banning of any further legislative testimony by tape. Why hear from those you plan to kill, after all?

             

            But that’s another story. Because of the hospital bioethics committee “right to privacy,” I was unable to confirm whether our refusal to allow them to invade my father’s privacy had been honored. “Privacy” in this context is often the one-way street CURE is accustomed to encountering when defending the rights of patients against the power of providers.

             

            In this regard, you may find the following story of interest. Further information and additional media coverage, including the Chronicles of Higher Education article referenced below, is available at http://www.freesheldon.org. For comprehensive information about protecting the rights of potential research subjects, visit the Alliance for Human Research Protections’ website at http://www.researchprotectionorg.

             

            But first read this account from the University of Pennsylvania’s Daily Pennsylvanian. –Earl

             

            Earl E. Appleby, Jr.                    304-258-LIFE/5433

            Director, CURE, Ltd.                  304-258-5420 (fax)

            303 Truman St.                          cureltd@...

            Berkeley Springs, WV 25411     cureltd.home.netcom.com

            ----------------------------------------------------------------------------

                                Caring When Care Is Critical

             

            --cut here—

             

            Anthro notes at center of lawsuit

            Sheldon Zink has refused to turn over notes she took while observing a medical procedure.

            by Lina Shustarovich

             

            Penn medical anthropologist Sheldon Zink has been fighting off subpoenas from local lawyers requesting her to turn over her field notes on an  artificial heart transplant into a man who died following surgery.

             

            Zink, director of transplant policy and ethics at Penn's Center for Bioethics, acted as a researcher observing a clinical trial of artificial heart transplantation starting in February 2001. She was in the operating room at Hahnemann University Hospital on Nov. 5, 2001, when James Quinn, one of the volunteers in the clinical trial, received an artificial heart. She was also the patient's advocate during the last two months of his life.

             

            When Quinn died nine months after the transplant, his widow filed lawsuits against Hahnemann, AbioCor -- the maker of the artificial heart -- and Quinn's original patient advocate, Professor of Geriatrics David Casarett, whom Zink replaced upon the Quinn family's requests, as well as other hospitals.

             

            Hahnemann University Hospital spokesperson Molly Tritt said that the suit against the hospital was filed on Oct. 17, 2002. At that point, the     hospital issued a statement saying, "We are disappointed that Mrs. Quinn decided to sue us. James Quinn was a true American hero. We trust his contribution to the treatment of heart disease will benefit patients for years to come."

             

            Because of Zink's presence throughout the procedure, both Casarett's attorney Thomas Wagner and Hanhemann's attorney Timothy McCann filed subpoenas requesting that Zink turn over her field notes to the court.

                

            However, she refused to do so, arguing that she must protect the patient's rights to privacy.

                

            "I think it's a trust issue with researchers in the field, and [sharing field notes] would impact the way we do our research," Zink said. "It     would put the research subject in jeopardy, and we should protect them as much as we can."

                 

            The American Anthropological Association does have a code of ethics stating that "anthropological researchers must do everything in their      power to ensure that their research does not harm the safety, dignity or privacy of the people with whom they work, conduct research or perform other professional activities."

                 

            Zink said she believes that she is just following this code.

                 

            "There is not a circumstance that I can fathom that I would ever give over my ethnographic notes to anyone," she said.

             

            According to Zink, five subpoenas have been filed. One, filed by Casarett's lawyer, was withdrawn on Monday, and an additional four were     filed by McCann.

             

            Zink said while the deadlines of the subpoenas filed by McCann have all lapsed, "none of them have been withdrawn," and she thinks that McCann will reinstate them.

             

            "I have no reason to believe that even if subpoenas are canceled right now that they won't be reinstated," Zink said.

             

            "None of these guys have ever picked up the phone and talked to me," Zink added, mentioning that McCann had called her once and was "intimidating" and "threatening."

             

            Wagner confirmed that the subpoena against Zink had been withdrawn earlier this week. It originally held a deadline of Wednesday.

             

            "The subpoena on Dr. Zink was to get her notes because she was observing Mr. Quinn's care while my client was working with Mr. Quinn," Wagner said.

             

            Wagner said that the notes might be helpful in the lawsuit against Casarett because Zink "closely observed Mr. Quinn's care," and her notes    might help him defend his client.

             

            However, Wagner said that he withdrew the subpoena "after we learned of Dr. Zink's strong objections."

             

            "I don't want to be hostile," Wagner said. "I want to work the issue out."

             

            "Whether we ever get to the point where we'll serve it again I don't know, but I suspect that we will eventually succeed in working it out," he

            added.

             

            McCann said that he had previously filed a subpoena against Zink but had canceled it.

             

            "We don't anticipate needing her notes or sending her another subpoena," McCann said. But Zink said she expects continued pressure to turn over her notes and believes that the subpoenas had not been canceled.

             

            The case has drawn national attention from anthropologists and others who want to make sure that field notes are kept private. Zink's students and colleagues have started a Web site called FreeSheldon.org, and other anthropologists have signed petitions supporting Zink's decision to go against the subpoenas, The Chronicle of Higher Education reported.

             

            A statement posted on the Web site states, "Forced disclosure of field notes, tapes and transcriptions endangers the academic freedom safeguarded by the First Amendment. This jeopardizes all of academic research, as well as our ability to disseminate information for the public good. All future anthropological research is being threatened."

                  

            [Daily Pennsylvanian, March 7, 2003]

              

             

             

             

              

             

             

             



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          • Mark Wilson
            Hi Colin For some reason you have attributed the original message below to which you responded to me-Mark Wilson. The source of the message you quoted is not
            Message 5 of 7 , Mar 11 8:41 AM
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              Perhaps I can clarify a little. Ethics committees are not usually seen as decision-making bodies in American hospitals. Most often, they are viewed as quality assurance mechanisms. So, a physician may meet with a committee and review options, hear summaries of the literature on an issue, etc. In other words, the process would aim at clarifying options. In the end, the physician is the medical decision maker and writes the physician orders in the chart. The"chart," i.e., the patient's medical record, is a document open to the patient.
               
              The theory of quality assurance is that patients will receive better quality care if there are mechanisms of review in which mistakes can be parsed, etc, without fear. Most quality assurance mechanisms in a hospital are retrospective, e.g., an M & M conference is the quintessential example. This is where you see it gets a little sticky. 
               
              If members of the committee are acting as part of an ethics consultation service that is doing concurrent case review, usually they end the process by placing their recommendations in the medical record and the patient can see them. As with all medical consultation recommendations, these are recommendations, not decisions. Again, the physician must decide whether to take the recs or not.
               
              But, I understand the problem--it's a pretty fine line between simply clarifying options and making recommendations. In the former case, in principle, records need not be made available. In the latter, they should result in a chart note. Either way, though, we are talking about options and recommendations, not decisions that anyone has to carry out - that belongs to the attending physician.
               
              Mark K.
               
               
               
              Mark G. Kuczewski,PhD
              Director, Neiswanger Institute for
              Bioethics & Health Policy
              Stritch School of Medicine
              Loyola University Chicago
              2160 S. First Avenue
              Bldg 120, Room 280
              Maywood, IL 60153
              mailto: mkuczew@...
               
              Learn about our new online MA Program:
              http://bioethics.lumc.edu

              >>>
              cjmoore52@... 03/09/03 09:11PM >>>
              Are the hospital Bioethics Committees you referred to subject to any over - arching legislation or do they act independently? It seems incredible to me that power to determine questions of life and death could be left to such mechanisms. We have a different approach here in sunny Queensland, Australia. Any system is , ipso facto, flawed but ours has produced some positive changes. Euthanasia is outlawed here although artificial life supports can be severed in cases of "brain death". Ouch, that is messy given the number of people so declared who have come back to life. On the other hand prolonged life support has also produced terrible suffering for families. One of the approaches here is to attempt to respect factors such as culture and wishes of the person with impaired decision-making capacity. Here is its website link:   www.justice.qld.gov.au/guardian/gaat/contact.htm

              [Colin J Moore]  -----Original Message-----
              From: Mark Wilson [mailto:wilson_mark@...]
              Sent: Monday, 10 March 2003 6:19 AM
              To: Bioethics@yahoogroups.com
              Subject: Re: [Bioethics] Jeopardy -- More Than a Game for Research Subjects

              During my father�s last hospitalization, the hospital advised my mother and me that their bioethics committee was going to discuss his case. We conveyed in no uncertain terms our family�s absolute refusal to allow my father�s private medical affairs to be discussed by persons not directly involved in his treatment.

               

              Our motive was that we did not wish the pervasive TAB bias against treating my father, who had been living in coma for several years, to  exploit my father as a case history to indoctrinate others with �quality-of-life� rationalizations for euthanasia.

               

              Before my father began his life in coma on February 26, 1981, he had taped his personal testimony opposing what he called a �right to kill, or rather, right to murder� bill in the New Hampshire State Legislature. Dad had made this tape with considerable difficulty, as he was recovering from recent cancer surgery � the reason that he was unable to testify in person as he had intended.

               

              The result of my mother�s playing this tape before the House committee considering the �right-to-die� bill was their banning of any further legislative testimony by tape. Why hear from those you plan to kill, after all?

               

              But that�s another story. Because of the hospital bioethics committee �right to privacy,� I was unable to confirm whether our refusal to allow them to invade my father�s privacy had been honored. �Privacy� in this context is often the one-way street CURE is accustomed to encountering when defending the rights of patients against the power of providers.

               

              In this regard, you may find the following story of interest. Further information and additional media coverage, including the Chronicles of Higher Education article referenced below, is available at http://www.freesheldon.org. For comprehensive information about protecting the rights of potential research subjects, visit the Alliance for Human Research Protections� website at http://www.researchprotectionorg.

               

              But first read this account from the University of Pennsylvania�s Daily Pennsylvanian. �Earl

               

              Earl E. Appleby, Jr.                    304-258-LIFE/5433

              Director, CURE, Ltd.                  304-258-5420 (fax)

              303 Truman St.                          cureltd@...

              Berkeley Springs, WV 25411     cureltd.home.netcom.com

              ----------------------------------------------------------------------------

                                  Caring When Care Is Critical

               

              --cut here�

               

              Anthro notes at center of lawsuit

              Sheldon Zink has refused to turn over notes she took while observing a medical procedure.

              by Lina Shustarovich

               

              Penn medical anthropologist Sheldon Zink has been fighting off subpoenas from local lawyers requesting her to turn over her field notes on an  artificial heart transplant into a man who died following surgery.

               

              Zink, director of transplant policy and ethics at Penn's Center for Bioethics, acted as a researcher observing a clinical trial of artificial heart transplantation starting in February 2001. She was in the operating room at Hahnemann University Hospital on Nov. 5, 2001, when James Quinn, one of the volunteers in the clinical trial, received an artificial heart. She was also the patient's advocate during the last two months of his life.

               

              When Quinn died nine months after the transplant, his widow filed lawsuits against Hahnemann, AbioCor -- the maker of the artificial heart -- and Quinn's original patient advocate, Professor of Geriatrics David Casarett, whom Zink replaced upon the Quinn family's requests, as well as other hospitals.

               

              Hahnemann University Hospital spokesperson Molly Tritt said that the suit against the hospital was filed on Oct. 17, 2002. At that point, the     hospital issued a statement saying, "We are disappointed that Mrs. Quinn decided to sue us. James Quinn was a true American hero. We trust his contribution to the treatment of heart disease will benefit patients for years to come."

               

              Because of Zink's presence throughout the procedure, both Casarett's attorney Thomas Wagner and Hanhemann's attorney Timothy McCann filed subpoenas requesting that Zink turn over her field notes to the court.

                  

              However, she refused to do so, arguing that she must protect the patient's rights to privacy.

                  

              "I think it's a trust issue with researchers in the field, and [sharing field notes] would impact the way we do our research," Zink said. "It     would put the research subject in jeopardy, and we should protect them as much as we can."

                   

              The American Anthropological Association does have a code of ethics stating that "anthropological researchers must do everything in their      power to ensure that their research does not harm the safety, dignity or privacy of the people with whom they work, conduct research or perform other professional activities."

                   

              Zink said she believes that she is just following this code.

                   

              "There is not a circumstance that I can fathom that I would ever give over my ethnographic notes to anyone," she said.

               

              According to Zink, five subpoenas have been filed. One, filed by Casarett's lawyer, was withdrawn on Monday, and an additional four were     filed by McCann.

               

              Zink said while the deadlines of the subpoenas filed by McCann have all lapsed, "none of them have been withdrawn," and she thinks that McCann will reinstate them.

               

              "I have no reason to believe that even if subpoenas are canceled right now that they won't be reinstated," Zink said.

               

              "None of these guys have ever picked up the phone and talked to me," Zink added, mentioning that McCann had called her once and was "intimidating" and "threatening."

               

              Wagner confirmed that the subpoena against Zink had been withdrawn earlier this week. It originally held a deadline of Wednesday.

               

              "The subpoena on Dr. Zink was to get her notes because she was observing Mr. Quinn's care while my client was working with Mr. Quinn," Wagner said.

               

              Wagner said that the notes might be helpful in the lawsuit against Casarett because Zink "closely observed Mr. Quinn's care," and her notes    might help him defend his client.

               

              However, Wagner said that he withdrew the subpoena "after we learned of Dr. Zink's strong objections."

               

              "I don't want to be hostile," Wagner said. "I want to work the issue out."

               

              "Whether we ever get to the point where we'll serve it again I don't know, but I suspect that we will eventually succeed in working it out," he

              added.

               

              McCann said that he had previously filed a subpoena against Zink but had canceled it.

               

              "We don't anticipate needing her notes or sending her another subpoena," McCann said. But Zink said she expects continued pressure to turn over her notes and believes that the subpoenas had not been canceled.

               

              The case has drawn national attention from anthropologists and others who want to make sure that field notes are kept private. Zink's students and colleagues have started a Web site called FreeSheldon.org, and other anthropologists have signed petitions supporting Zink's decision to go against the subpoenas, The Chronicle of Higher Education reported.

               

              A statement posted on the Web site states, "Forced disclosure of field notes, tapes and transcriptions endangers the academic freedom safeguarded by the First Amendment. This jeopardizes all of academic research, as well as our ability to disseminate information for the public good. All future anthropological research is being threatened."

                    

              [Daily Pennsylvanian, March 7, 2003]

                

               

               

               

                

               

               

               



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            • Earl E. Appleby, Jr.
              I appreciate the comments shared by fellow List members on my original post and offer a few further reflections of my own. -Earl --cut here-- Mark Wilson
              Message 6 of 7 , Mar 15 10:03 PM
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                I appreciate the comments shared by fellow List members on my original post and offer a few further reflections of my own. –Earl

                 

                --cut here--

                 

                Mark Wilson kindly calls the List’s attention to two articles on privacy abuses by ethics committees: “Ethics behind closed doors: do research ethics committees need secrecy?” British Medical Journal 2001; 322:1294-96 and “Ethics Committees and Due Process: Nesting Rights in a Community of Caring,” Maryland Law Review 50: 1991, 798-858.

                 

                I have read the first article and concur entirely in Mark’s characterization of the research as “on target.”  As the authors, Richard Ashcroft, a lecturer in medical ethics, and Naomi Pfeffer, a professor of social and historical studies of health, observe at the onset of their review of research ethics committees and the guidelines that regulate them: “An important reason for the contention surrounding research ethics committees is the secrecy that surrounds them and their decision making. We argue that this secrecy is rarely justified.”

                 

                From the experience I noted in my original post with a hospital ethics committee – and other encounters with ethics committees over the years through my service with CURE, I would simply add that secrecy that denies the subject and his family the right to know what was said about them amply justifies their prudent suspicions of the committee’s motives.

                 

                 

                 

                Colin Moore asks, “Are the hospital Bioethics Committees you referred to subject to any overarching legislation or do they act independently?” 

                 

                I do not have an authoritative answer to this question but I suspect any legislation governing these committees would be at the state level. I am unaware of any specific laws of this nature, but if other List members could answer Colin’s query more knowledgeably. I would appreciate their enlightening us.

                 

                 

                Dr. Mark Kuczewski offers the following observations in the hope of promoting clarity, a commendable goal: “Ethics committees are not usually seen as decision-making bodies in American hospitals.… In other words, the process would aim at clarifying options. In the end, the physician is the medical decision maker and writes the physician orders in the chart. The ‘chart,’ i.e., the patient's medical record, is a document open to the patient.”

                 

                I cannot speak to how others may perceive these committees, but I can attest to CURE’s view based on years of experience in defending the lives of patients endangered by their role. While hospital ethics committees do not make the decision of record, as Dr. Kuczewski points out, they do, however, strongly influence that decision in a manner often adverse to the patient’s welfare and generally provide a cover to life-threatening and life-ending nontreatment decisions by the attending physician, i.e.., epivalothanasia.

                 

                A few words are in order about the medical record.  First, I commend and share Dr. Kuczewski’s conviction that the medical record should be open to the patient. Indeed this should be a matter of law and not mere hospital whim. Despite the fact that my mother had been appointed by the court as “committee” for my father, i.e., West Virginia’s equivalent of guardianship in such cases, however, during my father’s last and ultimately fatal hospitalization – he died within a day of being discharged -- the hospital administrator restricted her to just five minutes a day to review my father’s records in the presence of his designated agent. Still, that was sufficient time to confirm the glaring omissions, misstatements, and “inaccuracies” – I use the term prudentially – in that so-called “record.”

                 

                I trust, by now, that it is clear that my father’s case is not unique but rather a microcosm of the world of post-Hippocratic medicine encountered by CURE and the patients we are privileged to defend.

                 

                 

                Finally, in follow-up comments, Mark Wilson does an insightful job of summarizing my concerns: “Earl's point - as I take it - is what right do these people on the committee have to view information about his father but also why is this happening behind closed institutional doors -- the culture of secrecy.”    

                 

                Precisely, we objected vigorously – and, alas, I suspect in vain -- on both counts. Here -- more or less verbatim -- is what my mother said.

                 

                “As my husband’s guardian, I object to anyone not involved in providing him medical treatment, in particular and expressly members of the so-called ‘hospitals ethics committee,’ invading the privacy of Earl’s medical records to discuss his case, as my husband would do if only he  were able to do so.” To which I added my strenuous objections and those of my brother and sister, i.e., the unanimous opposition of every member of my father’s immediate family.

                 

                Of course, we know quite well why this is happening behind closed doors. It is because evil cannot stand the light of day.

                 

                 

                I thank all three of the above gentlemen for the courtesy of their comments and you, dear reader, for your kind consideration of these thoughts.

                 

                Earl

                 

                Earl E. Appleby, Jr.

                Director, CURE, Ltd.

                 

                Earl E. Appleby, Jr.                    304-258-LIFE/5433

                Director, CURE, Ltd.                  304-258-5420 (fax)

                303 Truman St.                          cureltd@...

                Berkeley Springs, WV 25411     cureltd.home.netcom.com

                ----------------------------------------------------------------------------

                                    Caring When Care Is Critical

                 

              • Jack Noble
                Earl, Thank you for your nice summary of the articles accompanied with your own probing of their practical implications. --JHN ... From: Earl E. Appleby, Jr.
                Message 7 of 7 , Mar 16 8:19 AM
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                  Earl,
                      Thank you for your nice summary of the articles accompanied with your own probing of their practical implications.
                      --JHN
                  ----- Original Message -----
                  Sent: Sunday, March 16, 2003 1:03 AM
                  Subject: [Bioethics] Re: Jeopardy -- More Than a Game for Research Subjects

                  I appreciate the comments shared by fellow List members on my original post and offer a few further reflections of my own. –Earl

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