The First Decade by dffhrtcv3


									Health Care with Compassion

                              The First Decade

                              Where Healing Teaching and Discovery Come Together

    Center for Ethics in Health Care

    Director                            Senior Scholars                   Our Mission, Our Vision and Challenges for the Future
    Susan W. Tolle, M.D.*               Ralph Crawshaw, M.D.
                                                                          The Center for Ethics in Health Care: A Decade of
                                        Carey Critchlow, J.D.
                                                                          Accomplishments … A Future of Challenges .................................. 3
    Associate Directors                 Martin T. Donohoe, M.D.
    Gary T Chiodo, D.M.D.               Patrick M. Dunn, M.D.
                                                                          National Leadership in Change
    Michael Garland, D.Sc.Rel.*         Linda Ganzini, M.D.
                                                                          Program of Research on Ethics and End-of-Life Care ....................... 5
    Virginia P Tilden, R.N., D.N.Sc.*   Marian O. Hodges, M.D., M.P.H.
                                        Daniel Labby, M.D.                Task Force on Care of Terminally-Ill Oregonians:
    Assistant Director and              Dennis Mazur, M.D., Ph.D.         Triumph Over “Impossible” Task ................................................... 8
    Community Liaison                   Max Metcalf, S.T.M.
                                                                          Pink “POLST” Works in Oregon: Use Spreading Across U.S. ............ 10
    Robert H. Richardson, M.D.          Glenn A. Olds, Ph.D., M.A.
                                        Molly Osborne, M.D. Ph.D.         Ethics Center’s Chiodo and Tolle Offer American Dentists
    Administrative Director             Anne Rosenfeld, R.N., Ph.D.       Leadership and Thought-Provoking Column ................................ 12
    Elizabeth Mitchell, M.S.W.          Catherine Salveson, R.N., Ph.D.
                                                                          Melissa Buchan, M.D. 1934-1998:
                                        Terri A. Schmidt, M.D.
                                                                          Brought Soul to the Ethics Center .............................................. 14
    Assistant Directors                              .
                                        (Rev.) John F Tuohey, Ph.D.
    Patricia Backlar                                                      Miles Edwards, M.D., Embodies Health Care With Compassion ....... 16
    John A. Benson, Jr., M.D.           Community Advisory Council
    Nancy Press. Ph.D.                  Tina Castañares, M.D.             Outreach and Education
    Leslie N. Ray, R.N., Ph.D.          Theodore C. Falk, J.D., Ph.D.
                                                                          Daniel Labby Senior Clinicians’ Seminars ..................................... 17
    Ted Rubach, M.S.                    Betty Foxley, M.D.
    Mary Denise Smith, R.N., M.S.*      Amy Klare                         Kinsman Investment in The Center for Ethics
    Gloria J. Tuma, M.S.W.              Caroline Lobitz, M.D              One of His Best; Kinsman Conferences a Big Success ..................... 19
                                        Ellen Lowe
                                                                          The Coalition of Oregon Ethics Resources
    Clinical Consultants                Joanne McAdam
                                                                          Highlights Ethics Center Role as Convener ................................... 20
    Karen E. Adams, M.D.                Mary Radtke Klein
    Nancy Binder, M.D.                  Rabbi Emanuel Rose, DHL, D.D.     Ethics Education Makes Ethics Talk Priceless ................................. 22

    Miles J. Edwards, M.D.              Cornelia H. Stevens
    Barbara Glidewell, M.B.S.                                             Challenges for the Future
    Mark Merkens, M.D.                  Administrative Staff              Medical Confidentiality: Sacred Trust or Illusion? ......................... 24
    Margaret Allee, R.N., M.S., J.D.    Anne-Marie Jones
                                                                          Ethics Center Helps Find Balance in Biomedical Research ............... 26
    Peg Shepherd, R.N., Ph.D.           Marina Rios-Daley

                                                                          Ethics Center Presses for Universal Access to Health Care .............. 28
    Research Associates                 *also clinical consultant
                                                                          Ethicists Examine the Incentives of Managed Care ........................ 30
    Susan E. Hickman, Ph.D.
    Christine A. Nelson, R.N., M.S.
                                                                          The Satisfaction of Giving

    Assistant Project Director                                            Cornie Stevens: A Woman of Action ........................................... 32
    Christie Bernklau-Halvor,
                      Our Mission, Our Vision and Challenges for the Future

                          On the occasion of the 10-year anniversary of the OHSU Center for Ethics in Health Care, we are pleased to have the opportunity

                          to present this decade report. In writing this report, we reflect on our accomplishments and take pleasure in examining the ways

                          we have exceeded our initial goals. We then turn our attention to the tremendous challenges facing the Center as we respond to

                          the ethical issues of the new millennium.

                                                                                                                          Susan Tolle, M.D., Director

The Center for Ethics in Health Care:
A Decade of Accomplishments …
A Future of Challenges
 T     he leaders of the Center had a
       vision back in the late 1980s:
 create a center without walls that
                                                  school faculty who had just finished
                                                  up an ethics training program at the
                                                  University of Chicago. Michael
                                                                                                        highly effective over the years. With
                                                                                                        initial support from the Meyer
                                                                                                        Memorial Trust, the Center flour-
 would bring people with diverse                  Garland, D.Sc.Rel., was a philoso-                    ished, growing from a small cadre of
 talents and interests into a cohesive            pher on the medical school faculty                    academicians to a statewide network
 force to solve ethical dilemmas                  devoted to social ethics. Virginia                    with a $2 million endowment and a
 through teaching, research, and                  Tilden, D.N.Sc., was a researcher at                  national reputation for reform,
 clinical collaboration, and influence            the nursing school with a particular                  especially in end-of-life care.
 health policy. Together they would be            interest in family and end-of-life                          Not only did the Center evolve
 greater than the sum of their parts.             issues. And Gary Chiodo, D.M.D., a                    into a powerful voice for compassion
      Their timing was perfect. Many              public health dentist on the faculty of               in health care, but it earned itself a
 hospitals had created ethics commit-             the dental school, worried about such                 national reputation for compassion-
 tees to arbitrate conflicts arising from         troubling ethical issues as HIV-                      ate care of the dying. “When we
 the use of life-prolonging technology            positive patients having difficulty                   started out in ’89,” says Tolle, “we
 against patient wishes. “A lot of                accessing dental care and patient                     had no idea our work would attract
 people in the region were doing good             autonomy in managed care systems.                     national attention so soon.”
 work but they were doing it in                   All four were teachers at OHSU but                          The Center’s work in the arenas
 isolation,” says Susan Tolle, M.D.,              each brought a unique perspective to                  of ethics education, research, policy,
 the Center’s director from its                   the Center — giving it a true                         and practical issues has ensured that
 inception. “We thought that if we                multidisciplinary footing. This group                 its “products” are of practical
 could link arms, we could create a               now serves as the center’s executive                  significance for all in health care. Its
 powerful force for sharing and                   committee.                                            interdisciplinary approach to doing
 collaborating, and have better vision                 That interdisciplinary approach,                 this work is unique. In fact, during
 than if we each worked alone.”                   which was extended to include                         the Center’s first year, a number of
      The four leaders exemplify this             community leaders, social workers,                    national ethics experts from impres-
 notion perfectly. Tolle was an internal          allied health professionals, chaplains,               sive ethics centers around the United
 medicine physician on the medical                lawyers and social scientists, proved                 States warned that such an interdisci-
Our Mission, Our Vision and Challenges for the Future / 4

“Many of the challenges in the future, relating to issues such as genetic
testing, managed care and electronic medical records, will require greater skill
in effecting systems reform.”
                                                                                               — Susan Tolle, M.D.

  plinary approach was doomed to fail.       Convene, Talk, Test,                      step how we’re going to help people
  Ten years of interdisciplinary success     Revise — The Center’s                     with what we’ve learned.”
  later, the Center is proud to have                                                        The ethics center’s first decade
                                             Hallmark for Success
  proved them wrong.                                                                   energies have been directed to
        “Under Dr. Susan Tolle’s                  “On each issue we tackled, we        changes that would bene•t individual
  outstanding leadership, the ethics         attempted to put representatives of all   patients. While it will continue its
  center at Oregon Health Sciences           the stakeholders in one room,” says       work in these areas, it also has begun
  University has become nationally           Tolle. “Our goal was to create an         to look more intensively at such
  recognized for its work in end-of-life     atmosphere where listening could          issues as privacy and managed care,
  care,” says Myra Christopher,              occur and where everyone’s voice          which need to be addressed at a
  executive director, Midwest Bioethics      could be heard.” She continued: “To       systems level. “Sometimes it’s a
  Center in Kansas City. “Our efforts        solve any problem, we first need to       systems change that’s needed to help
  are bolstered by our relationship with     understand it — not just one aspect,      individual patients,” says Garland.
  the Oregon center.”                        but all its complexities. Once a group    “Many of the challenges in the
        Tolle attributes part of the         has a rich and detailed understanding     future, relating to issues such as
  Center’s success to strong community       of the problem, then it can begin to      genetic testing, managed care and
  and donor support. “Cornie Stevens         pilot some innovations and develop        electronic medical records, will
  and all those who so generously            policy.” This model of first studying a   require greater skill in effecting
  supported the Center’s work made           problem, developing ideas, testing a      systems reform,” Tolle adds.
  our national success possible — and        solution, and then making revisions            The Center’s leaders and its
  faster than I ever dreamed,” says          and testing again is the Center’s         founding donors believe they can
  Tolle. “With the donors as our             hallmark.                                 make significant new contributions to
  partners, we were able to corral all the        Several task forces convened and     health care ethics of the future. The
  right ingredients: a deeply committed      staffed by the Center have moved          Center will continue to function as a
  and talented faculty, the tireless         through this deliberative and             convener of groups where people can
  energy of Cornie Stevens and others        sometimes slow process. Over time,        share their successes and struggles in
  who chose to financially support the       trust and a shared history of problem     the hope of finding a way around the
  Center, and health care leaders in the     solving develops among group              obstacle.
  community who were willing to              members. Members can return to                 For individuals who would like
  collaborate.”                              their individual organizations and say,   to get involved with the ethics center,
        The donor support is critical in     “I understand the problem, here’s a       Tolle emphasizes that the door is
  another way: it allows the Center to       solution we came up with that takes       wide open. “There are new problems,
  remain neutral, and therefore              our view into consideration.” This        new challenges, and we need to build
  credible, on many issues. “We can be       history of problem solving and trust      new teams to deal with these issues.
  very honest and uncompromised              also makes these task forces ideal for    In our second decade, we need to
  about controversial issues because our     tackling new ethical issues.              grow, adapt and bring in new faces. If
  donor support comes without                     Tolle emphasizes that this           we don’t keep changing, adapting and
  strings,” says Tolle.                      practical approach to problem solving     responding, we won’t be able to meet
                                             makes the Oregon ethics center            the rapidly evolving issues of our
                                             different. “We want to know step-by-      time.”
                                            National Leadership in Change

Program of Research on
Ethics and End-of-Life Care

A        s an ethicist, Virginia Tilden,
         D.N.Sc., R.N., will say that
she is lucky to be doing end-of-life
research in Oregon. “Oregon is
different.” It has the lowest rate of in-
hospital deaths in the United States
(and also fewer hospital beds per
person than most states), expansive
advance directive legislation, thriving
hospice and home health services, a
high level of respect from practitio-
ners for patient preferences regarding
death, and aggressive pain manage-
      Oregon has presented Tilden,
her colleagues and some 15 to 20
graduate students with a rich
environment for study. They’ve used
this advantage of place and time to
tell the world about improving care
of the dying.
                                               families play a key role in helping      Virginia Tilden, D.N.Sc., R.N., Center for
      During the 1990s, a
                                               patients (or their loved ones) receive   Ethics associate director, leads the
multidisciplinary team of researchers
                                               the level of care or aggressive treat-   Center’s Program of Research on Ethics
in the Program of Research on Ethics
                                               ment wanted at the end of life.”         and End-of-Life Care.
and End-of-Life Care built a body of
                                                    In 1996, the program published
work, published in major scientific
                                               a widely reported study on physician
journals, on family decision-making
                                               attitudes on assisted suicide, finding
and ethical dilemmas.
                                               back then that while a majority of
      In one of their first studies they
                                               physicians favored the practice, many
learned that advance directives reduce
                                               were morally opposed.
family conflict and that clinician
                                                    Another study points to a
behavior can affect the stress level of
                                               disturbing fact about pain control in
families having to make decisions
                                               dying patients. “Although practitio-
about treatment, such as withdrawing
                                               ners in our study had a high respect
life support. A later study examined
                                               for patient preferences, 34 percent of
how people of different ethnic, age,
                                               patients reported moderate to severe
and cultural make-up might ap-
                                               pain in their last week of life,” said
proach the same decisions. Christine
                                               Anne Rosenfeld, R.N., Ph.D., project
Nelson, R.N., MS, project director
                                               director of the study. According to
for both those studies, notes … “that
National Leadership in Change / 6

“We’re taking all that we’ve learned to this point in time and will use that data
to facilitate or trigger systems changes.”
                                                                                 — Virginia Tilden, D.N.Sc., R.N.

  Tilden, this amount of patient pain is     Institutes of Health has given the          innovative research in end-of-life care
  too high. “Physician’s fear that if they   nursing institute the lead in directing     soon attracted national attention with
  over-prescribe, they may come under        the national agenda on improving            grants from The Greenwall Founda-
  the scrutiny of a medical board.           end-of-life care and on helping             tion (New York), the Project on
  Nurses worry about missing indirect        patients determine the kind of death        Death in America (New York), The
  cues of pain, and both groups have a       that best fits their cultural, family and   Robert Wood Johnson Foundation
  ‘leftover mythology of addiction.’”        social values.                              (New Jersey), and The Nathan
        Being at the front of new trends          Patricia A. Grady, R.N., Ph.D.,        Cummings Foundation (New York).
  in better care of the dying has meant      director of NINR, says that improv-         Recent grants call for the program to
  a high profile in the national media       ing end-of-life care is an important        disseminate previous findings and
  and the lecture circuit. Tilden,           research emphasis at NIH. “We are           facilitate policy and systems change
  associate dean for research at the         supporting investigators like Dr.           on end-of-life care.
  nursing school, distinguished              Tilden and others who can improve                 “We’re taking all that we’ve
  professor, and associate director of       decision-making procedures for dying        learned to this point in time and will
  the ethics center; Susan Tolle, M.D.,      patients and their families,” said          use that data to facilitate or trigger
  director of the ethics center and          Grady. “Nurse researchers also are          systems changes,” reports Tilden. In
  professor of medicine; and other           studying ways to improve health care        other words, she says, “We’re trying
  members of the team have become            delivery in hospitals, hospices and         to fix problems.” Although the ethics
  sought-after speakers at national and      homes, and to provide better                center can take no credit for it, she
  even international forums. Tilden          management of pain and of the               applauds a system change that
  alone has made three trips in the past     constellation of symptoms that are          recently occurred in the Veterans
  two years to Washington, D.C., to          commonly experienced by patients at         Affairs medical care system. Health
  help educate members of Congress           the end of life.”                           providers in VA hospitals will
  on the importance of end-of-life                According to Tilden, the ethics        measure a patient’s pain as a “fifth
  research. A recent congressional           center’s successful publishing record       vital sign” (along with pulse, respira-
  briefing put on by the National            has allowed it to compete for and win       tion, temperature, and blood
  Institute of Nursing Research              coveted research dollars. The program       pressure).
  showcased two programs of research,        currently has about $2 million in                 Susan Hickman, Ph.D., serves as
  including OHSU’s. The National             research contracts and grants — an          a project director for the ethics center
                                             impressive amount for behavioral            on the program’s dissemination grant.
                                             research.                                   Her mission is to carry the program’s
                                                  Initial funding for the Program        research findings and the momentum
                                             of Research came from the Meyer             that exists in end-of-life initiatives to
                                             Memorial Trust, the Medical                 key decision-making personnel, such
                                             Research Foundation of Oregon, the
                                             Denison Family Fund of the Oregon
                                             Community Foundation, and The
                                             Collins Medical Trust. The Center’s
                                                                                            National Leadership in Change / 7

“Although we’ve made huge strides in improving care of the dying, we still
have work to do.”
                                                                                                — Susan Tolle, M.D.

 as hospital, hospice and nursing            Medicare requires for patients to          moderate to severe pain in their final
 home administrators, nursing and            qualify for hospice care. Therefore,       days. “Although this rate of pain is
 medical staffs, and patient advocacy        many patients don’t get into hospice       lower than that reported by other
 groups.                                     care or have it only for a short while.    studies, we have to do better,” says
      “Everyone agrees that it’s time to     And, because they don’t recognize the      Tolle. “We need to get past the
 change what they’re doing for dying         gravity of their illness, some people      simplistic notion that if we teach
 patients,” says Tolle, principal investi-   don’t make an advance directive. “We       physicians and nurses about pain
 gator of current foundation-funded          need to do a better job of reaching        management, patients will suffer
 research. “People want a better way of      these patients.”                           less.”
 doing things. A recent grant will                Another area for work includes              Tilden says that more research is
 bring together key decision-makers in       logistics and communication for            needed to understand what factors
 townhall-style meetings where we can        dying patients. A common scenario is       contribute to patient reports of pain.
 present data. They can then use this        this: an elderly patient who is living     “Pain is complex and many factors
 information to effect change within         alone at home suffers a stroke and         can affect the reports of pain … for
 their organizations.”                       goes to the hospital for emergency         example, a family’s worry for the
                                             treatment. She survives the stroke but     patient tends to increase the family’s
 Despite Improvements,                       has devastating impairment. When it        perception of the patient’s pain.
 We Face Future                              becomes obvious that she’s dying, the      Careful research is needed to sort out
                                             hospital transfers her to a long-term      these factors,” says Tilden.
 Challenges and Barriers
                                             care facility, where she later dies.             Finally, a vital part of the
 to End-of-Life Care                         Meanwhile, her family physician            research program is to train tomorrow’s
      “Although we’ve made huge              doesn’t know that she was transferred      investigators. The program has
 strides in improving care of the            and may not even know when she             employed many research assistants —
 dying, we still have work to do,” Tolle     dies. Because her health spiraled          mostly graduate students working
 says. She cites three focus areas:          downward so fast, her medical              toward their master’s or doctoral
 advance directives for people with          records didn’t accompany her from          degrees. They’ve come from nursing,
 chronic lung disease and heart failure,     the hospital to the nursing home, and      social work, public health, psychol-
 enhanced communication and                  there are gaps in communication            ogy, medicine and the basic sciences.
 logistics for patients who receive care     among her various health care              “This opportunity mentors them in a
 in multiple settings at the end of life,    providers. On top of everything, the       research team,” says Tilden. Training
 and better end-of-life pain manage-         family has to tell her story over and      the researchers of the future meets
 ment. She adds that it’s difficult for      over again, and receives different bills   another of the Center’s goals to serve
 practitioners to give a six-month-          from different health systems, leaving     as an agent of change.
 until-death prediction, which               them confused and discouraged.
                                                  In addition, there’s the worri-
                                             some news that one-third of patients
                                             who die in Oregon hospitals suffer
National Leadership in Change / 8

Task Force on Care of Terminally-Ill
Oregonians: Triumph Over “Impossible” Task

  I magine having to write the world’s
    •rst guidebook on physician–
  assisted suicide. And imagine that
                                           lous. In the big picture, it not only
                                           developed a thoughtful and thorough
                                           guidebook for health providers on
                                                                                    ers” that chapter authorship does not
                                                                                    represent endorsement by the
                                                                                    author’s organizations and the
  you had to do this with people on        physician–assisted suicide, but the      appendix contains disclaimers from
  both sides of the debate and still       group’s work in this and other areas,    task force member groups such as the
  maintain absolute neutrality through-    it might be argued, has led to many      Catholic Health Systems, Oregon
  out the guidebook. The Task Force to     improvements and reforms in end–         State Bar Association, and others.
  Improve the Care of Terminally-Ill       of–life care.                            The publication devotes an entire
  Oregonians took on this formidable            “This was a very interesting        chapter to conscientious practice —
  task just months after Oregonians        time,” says Pat Dunn, M.D., chair of     which means allowing practitioners
  passed the Death with Dignity Act in     the task force and a master of the       and health systems to be true to their
  1994.                                    understatement. “The representatives     own moral and ethical beliefs and not

  “Our intent in developing the guidebook has been to carefully think
  through scenarios in detail and to recommend actions that will optimize
  care and minimize harm, no matter where the provider sets the limit of
  involvement along the spectrum of possible scenarios.”
                  — The Task Force to Improve the Care of Terminally-Ill Oregonians

       Convened by the OHSU Center         worked very hard. We came to trust       having to act contrary to those.
  for Ethics in Health Care and not        each other and knew what to do.               The project took three years to
  mandated by the law, the voluntary       Each could go to his or her organiza-    complete. A quick read of the
  task force (with support from the        tion and advocate for the group’s        guidebook shows that it’s anything
  Greenwall Foundation) stepped            progress.”                               but a step–by–step guide on how to
  forward to provide the state with             Task force members represent        help a patient commit suicide.
  solid, credible leadership and           state health care professional organi-   Instead, it offers a thorough and
  expertise on this thorny, emotional      zations, state agencies involved in      studied review of the law and its
  issue. That it accomplished anything,    health care, and health systems in the   practical applications. The message
  given the wide diversity of strongly     Portland metro area — 25 altogether.     one gets after reading it is that these
  held beliefs, is just short of miracu-   Task force members were quick to         often–disparate groups have one
                                           point out in the preface of “The
                                           Oregon Death with Dignity Act: A
                                           Guidebook for Health Care Provid-
                                                                                            National Leadership in Change / 9

“The representatives worked very hard. We came to trust each other and knew
what to do. Each could go to his or her organization and advocate for the
group’s progress.”
                                                                                                   — Pat Dunn, M.D.

 common goal: to promote excellent          of comfort needs, and respect for          been an uncommon event since the
 and compassionate care of the dying.       divergent views are necessary              law went into effect in late 1997.
 The sub–message might be this: if we       components of care.”                            The group, which continues to
 can accomplish our •rst goal through            The book further states, “Our         meet, also published “The Final
 statewide education and systems            intent in developing the guidebook         Months of Life: A Guide to Oregon
 reform, far fewer patients will seek to    has been to carefully think through        Resources.” This booklet lists
 use this law.                              scenarios in detail and to recommend       resources for all aspects of the care of
      The book states it this way:          actions that will optimize care and        terminally-ill Oregonians, county–
 “Underlying this work is the assump-       minimize harm, no matter where the         by–county. First published in 1997
 tion that regardless of the health care    provider sets the limit of involvement     and revised in 1998, the book can be
 provider’s personal view on physi-         along the spectrum of possible             used by physicians, other health care
 cian–assisted suicide or the act itself,   scenarios.”                                professionals and families to counter
 open communication, consideration                 The ethics center has member-       the pain, isolation and loneliness that
                                               ship on the task force; the Center      dying patients face by listing re-
                                                also provides staff support and        sources for a broad range of needs.
                                                 distributes publications of the       These resources have been widely
                                                  group. It sold copies at cost to     used and now are available on the
                                                   organizations and health            Center’s Web site,
                                                    systems to help them formu-        ethics.
                                                     late policy regarding physi-           Dunn says that publishing these
                                                      cian–assisted suicide. The       books is not enough — the group
                                                       Center also sells the guide     continues to meet to facilitate
                                                                   to physicians who   education and to offer input on
                                                                       request it.     public policy. Although the group
                                                                       Says Dunn,      does no lobbying, it offers its
                                                                       “It usually     considerable expertise to Oregon’s
                                                                      comes up         state and federal lawmakers on
                                                                      when a           compassionate care of the dying.
                                                                     physician is      “Our major push right now,” says
                                                                     asked and who     Dunn, “is advocating for improving
                                                                    then says, ‘What   access to hospice care in Oregon. In a
                                                                    am I going to      state with assisted suicide as policy, it
                                                                   do?’” He points     seems like hospice care should be
                                                                   out that comply-    available to all citizens.”
                                                                  ing with requests
                                                                 for a lethal
                                                                prescription from
                                                                dying patients has
National Leadership in Change / 10

Pink “POLST” Works in Oregon:

  T     he bright pink form called
        “POLST” (Physician Orders for
  Life-Sustaining Treatment) is perhaps
                                              which had a stake in caring for
                                              patients across settings — hospice,
                                              legal authorities, acute care hospitals,
                                                                                         1995, but the group today continues
                                                                                         to make improvements. “With each
                                                                                         revision, we better meet the needs of
  the ethics center’s most visible,           emergency medical services, nursing        additional groups of people,” says
  literally, of its many •rst decade          homes and others. This group of            Tolle.
  accomplishments. This simple, two-          about 40 disparate individuals •rst             Center personnel played other
  sided form gives dying patients,            tackled the problem of do-not-             key roles in getting the POLST into
  especially those in nursing homes, a        resuscitate orders that go unheeded        practice. Terri Schmidt, M.D., senior
  venue to express their wishes regard-       when patients are transferred from a       scholar with the Center, physician-
  ing life support and comfort care. It       nursing home to a hospital.                supervisor for a number of EMS
  also may be contributing to Oregon’s             Says Susan Tolle, M.D., ethics        agencies in Clackamas County, and
  small number of deaths inside               center director, “This was a formi-        vice-chair, Department of Emergency
  hospitals — the lowest rate in the          dable task. We’re talking about people     Medicine, led the way in educating
  United States (in 1996, 33 percent          who traditionally didn’t talk with one     emergency medical personnel

  “POLST encourages health care providers to understand and communicate
  the wishes of their patients — a worthy and essential goal.”
                                                                                           — Patrick Dunn, M.D.

  compared to 56 percent nationally).         another. As soon as you got a patient      statewide in using POLST.
       POLST is not an advance                into an ambulance, any doctor’s                 “POLST has promoted advance
  directive, like a living will, but rather   orders before then didn’t matter. The      care planning for Oregonians with
  a form that sets limits now, not in the     ambulance service had to follow EMS        serious illness,” says Dunn. “It honors
  future, for medical treatment. It           protocols. Once the patient reached        patient wishes for life-sustaining
  spells out the exact types of treatment     the emergency room, only the               treatments and preferences about
  a terminally-ill person would want if,      hospital’s protocols mattered.”            hospital transfer.” He added that,
  for example, he or she stops breathing           Under Dunn’s expert facilitation,     “POLST allows making it possible
  or has no pulse.                            the group came up with the idea of a       for people to stay in their care setting,
       It was the desire to give dying        portable set of physician’s orders that    ensuring good symptom manage-
  patients a voice — in urgent medical        would accompany patients during a          ment.”
  situations and when they are inca-          transfer between settings. The group            Tolle, Dunn, Virginia Tilden,
  pable of expressing their wishes —          devised a form, and the ethics center’s    D.N.Sc., and Christine Nelson, M.S.,
  which led to the creation of POLST.         researchers, with support from The         proved that things are better in
  In 1991, the ethics center, with            Greenwall Foundation, went to work         Oregon in a study published in the
  leadership from Patrick Dunn, M.D.,         testing and re•ning it. The •rst           September 1998 Journal of the
  brought together all the entities           POLST forms went into practice in          American Geriatrics Society. The
                                                                                                         National Leadership in Change / 11

“The form … takes patient wishes and converts them to a medical order.
The physician signature means that everyone from nursing home staff to
emergency medical personnel have legal authority to honor a patient’s desires.”
                                                                                                              — Susan Tolle, M.D.

 researchers prospectively studied 180            authority to honor a patient’s desires.”               Because of its success in Oregon,
 nursing home residents who had                        The authors concluded that                   use of the form is spreading across
 POLST forms designating “do not                  POLST orders regarding CPR in                     the United States. So far, the ethics
 resuscitate” and stipulating a desire            nursing home residents were univer-               center has distributed 220,000 of
 for transfer only if comfort care                sally respected. Furthermore, study               them.
 measures failed. Results showed that             subjects received remarkably high                      For the ethics center, POLST is
 no study subject received CPR, ICU               levels of comfort care and low rates of           more than a form, it’s a program of
 care or ventilator support, and only             transfer for aggressive life-extending            education, scienti•c research and
 four patients (2 percent) were                   treatments.                                       support for families. POLST Task
 hospitalized to extend life.                          “For those who wish to give the              Force leaders feel that the POLST
      “The form directs attention to              message, ‘I want the primary focus of             program has done well in Oregon
 palliative versus life-extending care,”          my care to be on my comfort, rather               because of the state’s strong interest
 says Tolle. “It takes patient wishes and         than on extending my life,’ the most              in enhancing end-of-life care. Dunn
 converts them to a medical order. The            powerful thing about POLST is that                says, “POLST encourages health care
 physician signature means that every-            their wishes will not be ignored, as              providers to understand and commu-
 one from nursing home staff to emer-             often occurs in other parts of the                nicate the wishes of their patients —
 gency medical personnel have legal               country,” says Tolle.                             a worthy and essential goal.”

 POLST Task Force members, front row (left to right): Susan Tolle, Trudy Schidleman, Pat Dunn, Terri Schmidt. Back row (left to right): Mark
 Bonanno, Ann Jackson, Dan McFarling, Tim Hennigan, Jerry Andrews, Chris Nelson (standing behind Pat Dunn), Dan Field, Holly Robinson
 and Anne-Marie Jones.
National Leadership in Change / 12

Ethics Center’s Chiodo and Tolle
Offer American Dentists Leadership
and Thought-Provoking Column

  Case 1 — A general dentist is examining a new patient with a toothache. The tooth is badly infected so the dentist explains the

  diagnosis and the patient consents to extraction. He quickly realizes that he has pulled the wrong tooth. Fearing a lawsuit and dam-

  age to his reputation, the dentist covers his mistake by telling the patient that an adjacent tooth (the one that should be have been

  extracted) also needs to be removed. The patient agrees and actually feels grateful that the dentist has identi•ed the “additional


  Case 2 — A woman shows up at her dentist’s of•ce with a damaged tooth, swollen lip and bruises on her face and neck. He asks her

  how she was injured; she says that she fell against a corner of the wall as she chased one of her children. The dentist notes from her

  chart that she has sought emergency treatment three times in the past two years. His growing suspicion is that her attorney-husband

  may be beating her; this bothers him but he wants to respect her privacy. He wants to say something to her but doesn’t know how. He

  can’t believe that a woman being beaten to this degree would stay in the situation.

                                                 E     very other month, two Oregon
                                                       ethicists present patient scenarios
                                                  like these and provocative ethical
                                                                                                  dentist and the other a physician,
                                                                                                  serve up such thorny issues as the
                                                                                                  pitfalls of treating family members,
                                                  issues, such as a dentist’s duty to treat       what to do about chemically depen-
                                                  HIV-infected patients, to 66,000                dent practitioners, getting consent for
                                                  American dentists. Gary T. Chiodo,              treatment among non-English-
                                                  D.M.D., and Susan W. Tolle, M.D.,               speaking immigrants, dealing with
                                                  write a dental ethics column that               sexual advances of patients and the
                                                  appears six times a year in General             wisdom of accepting gifts from drug
                                                  Dentistry, the peer-reviewed,                   companies or wealthy widows.
                                                  scientific journal of the Academy of                  Managing Editor Ellen Paul
                                                  General Dentistry, which is oriented            Odehnal says that the ethics column
                                                  to practicing dentists.                         is “the most letter-generating feature”
  Gary T. Chiodo, DM.D.                                The two OHSU doctors, one a                at the journal. “It stirs up a number
                                                                                        National Leadership in Change / 13

“This column has brought national attention to ethics as a discipline that is the
foundation for good patient care”
                                                                                     — Gary T. Chiodo, D.M.D.

 of issues that otherwise would be         widespread bereavement support was        shared belief that an interdisciplinary
 untouched,” she says. Until recently,     among general dentists. He took as        approach to ethics could be a
 she added, dental ethics had largely      his example a 1984 groundbreaking         powerful force, Chiodo and Tolle,
 been untapped, and “this column           study by his colleague Susan Tolle,       along with many others across
 speaks to that need and our readers’      who surveyed 100 family members           campus, formed the Center for Ethics
 desire to learn more about ethics.”       one year after the death of a spouse to   in Health Care. The column seemed
       Chiodo and Tolle have been          find out how physicians expressed         to arise naturally from this collabora-
 writing the popular column since          condolences and support. Chiodo           tion.
 1992. (The column originally              teamed up with Tolle to do a similar            Tolle says that their two disci-
 appeared in another national dental       study among Oregon dentists, who          plines — medicine and dentistry —
 journal; the authors switched to          lose an average of five patients a year   complement one another. She says
 General Dentistry because it offered      to death.                                 that dentistry has been ahead of
 them more space.) In 1997, it won              They asked whether the dentist       medicine in defining ethical business
 first place for editorial excellence      had attended the patient’s funeral,       practices. Conversely, she says,
 from the West/Midwestern Chapter          sent the family a card or telephoned.     medicine has led dentistry in probing
 of the American Society of Business       They found that dentists had a            the ethics of the doctor/patient
 Press Editors 19th Annual Awards          remarkably high level of contact with     relationship. “We are learning from
 Competition.                              families after a death. They also         each other,” says Tolle.
        Chiodo’s ethical perspective was   learned that bereavement support                Journal Editor Odehnal says that
 sharpened during 21 years of caring       from the family dentist is very           it’s the authors’ unique perspective,
 for patients at Portland’s Russell        appreciated by surviving loved ones.      not only as academics, but also as
 Street Clinic. An off-campus dental       “Surviving family members need            involved members of the national
 clinic owned and operated by OHSU,        some reassurance that the patient was     ethics community, that makes the
 its staff cares for people with AIDS,     important to all his or her health care   column so compelling. “It elicits
 the elderly, the disabled and others      providers,” Chiodo states.                from readers a bond of trust and
 who have difficulty accessing care.            As a public health dentist and a     belief. They look to them (Chiodo
       Because of his work with AIDS       faculty member of the dental school       and Tolle) for leadership. This doesn’t
 patients and the elderly — many in        since 1978, Chiodo used the results       happen with other features. It is
 their 80s and 90s, he came to realize     of the survey to press for national-      consistently one of our top-rated
 that bereavement support had a place      level curriculum changes that would       features in readership surveys.”
 in dental practice. As an academic        teach students about bereavement
 dentist interested in death and dying     support.
 issues, he wanted to learn how                 The two colleagues continued
                                           their collaborations. In 1989, based
                                           on many mutual interests, and the
                                          Individuals Making a Difference

Melissa Buchan, M.D., 1934–1998:
Brought Soul to the Ethics Center

 W         hen Melissa Buchan, M.D.,
           left this world, exactly 64
 years from the day she entered it, the
                                             idea for giving new physicians actual
                                             training in the humanistic side of
                                             medicine. They devised role-playing
                                                                                       family needs at that moment, rather
                                                                                       than on such details as arranging an
                                                                                       autopsy or asking about organ
 Center for Ethics in Health Care lost       sessions in which resident physicians     donation. For instance, does the
 a piece of its soul.                        could learn compassionate and             family need to make phone calls to
      Says her longtime colleague and        sensitive ways to deal with families at   others? Does the wife want a private
 friend Susan Tolle, M.D., director of       the time of a loved one’s death.          visit with her dead husband?
 the center, “Melissa had a deep                  Buchan recruited community                 Faculty members trained in
 interest in the spirituality of medi-       volunteers — many of whom had             ethics observe the role–playing and
 cine, where you treat the patient as a      some experience with death, either in     later offer the residents a constructive
 whole person.” As a family physician        their own families or as professional     critique of how well they managed
 who practiced at the OHSU student           counselors — to role-play with the        the situation. Tolle says the method

 “Melissa had a deep interest in the spirituality of medicine, where you treat
 the patient as a whole person.” Buchan worried that the medical
 profession was becoming too enamored with techniques and procedures,
 resulting in less time spent talking with patients. “She was concerned that
 medicine was losing the art as it became better at the science.”
                                                                                            — Susan Tolle, M.D.

 health service, Buchan worried that         new physicians. Together they             helps young physicians get over being
 the medical profession was becoming         designed language that they could         nervous and gives them language that
 too enamored with techniques and            give physicians for helping bereaved      makes families comfortable.
 procedures, resulting in less time          families.                                      The role–play program became
 spent talking with patients. “She was            During the role-play, the            so successful that the departments of
 concerned that medicine was losing          resident acts the part of a physician     internal medicine, family practice
 the art as it became better at the          who must break the news to a              and emergency medicine incorpo-
 science.”                                   woman, for example, whose husband         rated it as a required part of residency
      About 14 years ago, to provide a       has suddenly died of a heart attack.      orientation. The first afternoon of
 counterbalance, Buchan and a couple         The focus of the session is to get        orientation, residents receive training
 of other colleagues came up with an         residents to think about what the         in how to notify relatives of a death.
                                                                                        Individuals Making a Difference / 15

“When Melissa entered the room, you could feel her caring, that everything
would be OK because she was there … She had a presence, and she was not
afraid of people’s feelings. She didn’t pull back because someone was dying.”
                                                                                              — Susan Tolle, M.D.

 The next afternoon they get informa-       It was her way of thanking the ethics          Her spirituality also led her to
 tion about talking with their future       center for giving her a venue to          the Unitarian Universalist Church,
 healthy clinic patients about advance      express her spirituality and compas-      which ordained her as a lay minister
 directives.                                sion for dying patients.                  in February 1998.
       Says Tolle, “It’s a very powerful,         Buchan spent many hours                  The role–playing program may
 real experience for house staff. After     comforting patients at the end of         be Melissa Buchan’s greatest legacy to
 two days of role-playing, they go          their lives.                              the university, but her friends and
 home drained but better prepared.”              “When Melissa entered the            colleagues will remember that she
       The first of its kind in the         room, you could feel her caring, that     brought heart and soul to the ethics
 United States, the training method         everything would be OK because she        center.
 has now spread to other residency          was there,” says Tolle. “She had a             Husband Colin Buchan, M.D.,
 programs across the country.               presence, and she was not afraid of       two daughters and two sons-in-law,
       Buchan, of course, left more         people’s feelings. She didn’t pull back   three sisters and two grandchildren
 than a training program as her legacy.     because someone was                                             survive her.
 Her fighting spirit and unflagging         dying.”
 enthusiasm touched everyone she
 met. While fighting colon cancer, she
 earned a black belt in karate. “It
 (karate) has taught me a lot about
 myself,” Buchan said in an Orego-
 nian newspaper article about her.
 “It’s given me patience, courage and
 focus. It’s taught me the Eastern
 philosophy of what’s important is
 right now.”
       In the summer of ’97, a year
 before her death and on chemo-
 therapy, Buchan competed in the
 Nike World Masters Games in
 Eugene. She won a silver medal in
 the discus and a bronze in the shot
 put. “Her participation in those
 games symbolized that even as the
 odds get difficult, you can still mount
 an incredible fight,” says Tolle.
 Hanging in Tolle’s office is the first
 track medal Buchan won after her
 diagnosis of colon cancer in 1997.
Individuals Making a Difference / 16

Miles Edwards, M.D.,
Embodies Health Care With Compassion

  T     he old adage that the more
        things change, the more they
  stay the same seems apt at this
                                            once again be spending time in that
                                            space — now as a clinical consultant
                                            for the ethics center.
                                                                                            “Some will think it’s time to quit
                                                                                       while others don’t. Maybe it’s doctors
                                                                                       wanting to quit while the family
  moment in Miles Edwards’ life. The              Edwards’ interest in ethics          doesn’t, or visa versa. Maybe it’s
  70-year-old former chief of pulmo-        actually evolved from the high-tech        nurses concerned about a patient’s
  nary medicine in the medical school       side of medicine when he took care of      suffering while the doctors plow
  is back in the exact space where he       sick and dying patients in the             ahead.” He says the scenarios vary
  saw patients 43 years ago as an intern.   hospital’s critical care unit. “We had     from one situation to another.
        “At night and on weekends,          to make frequent decisions regarding            How does the team resolve these
  people would wander into the old          continuation or discontinuation of         differences? Edwards says, “by getting
  hospital,” says Edwards. He means         life support,” he says. “This led to       people to talk in a patient care
  Multnomah (County) Hospital, one          many complicated issues of ‘How do         conference. We get everyone together
  of OHSU’s oldest buildings and the        you make that judgment? and ‘Is            — the people whose ethical princi-
  new home for the Center for Ethics        there a systematic way to do so? We        pals are bumping up against one
  in Health Care. “There wasn’t an          had to face problems without any           another. We put them with the
  emergency room on Marquam Hill in         formal ethics training; we did it          consult team, which always includes
  those days, but the county hospital       intuitively. But it would have been        at least one M.D. and one non-
  served that function,” he says. “It was   nice to have had some ethical              physician, such as a nurse or social
  low-tech, low-volume care. Everyone       training,” he says. As he got closer to    worker.” We don’t always reach a full
  we saw was poor.”                         giving up direct intensive care            consensus but generally we’re able to
        After 27 years as a lung and        responsibilities, he thought about         come up with a medical plan.” The
  critical care specialist, Edwards will    turning his focus toward ethics. He        service is provided free of charge by
                                            spoke with Susan Tolle who suggested       the ethics center.
                                            he take formal training. He took her            With most of his clinical and
                                            advice and, in 1991, completed the         teaching duties behind him, Edwards,
                                            Oregon arm of the University of            now professor emeritus, devotes his
                                            Washington certi•cate program in           professional efforts to medical ethics.
                                            medical ethics.                            He researches and writes articles on
                                                  For the past several years, he has   various topics for publication in
                                            been part of a group of physicians,        medical journals. “My favorite
                                            nurses, social workers and lawyers         subject is how managed care affects
                                            who arbitrate differences between the      relationships between patients and
                                            hospital and its patients or among         doctors … When I see my colleagues,
                                            groups of employees. Many of the           under intense economic pressure,
                                            consult team’s cases involve clashing      continuing to put the legitimate
                                            ethical values between people, such as     needs of the patient •rst in their
                                            continuing or discontinuing kidney         motivations and •rst in their hearts, I
                                            dialysis, mechanical ventilation or        feel pride in being a physician,” he
                                            other life support.                        said in a recent interview. “That’s
                                                                                                          continued on page 18
                                          Outreach and Education

Daniel Labby

“W         hat does a retired doctor
           do with all his wonderful
experience — maybe 40 or even 50
years of it?” Daniel Labby, M.D.,
asked himself. “I’ve always thought
that the retired physician was one of
society’s greatest losses of manpower.”
      Approaching his own retirement
— an odd term for a man of 84 who
still spends two days a week seeing
patients, teaching psychiatry residents
and putting on a popular seminar
series — Labby sought the advice of
retired colleagues. They realized that
they’d all been forced to make
difficult judgments during their many
years in practice. Perhaps they could
share their hard-earned wisdom with
each other and a younger generation       Daniel Labby, M.D. discusses upcoming seminars with senior clinician, Harry Irvine, M.D.,
of practitioners.                         (left) and John Benson, Jr., M.D., assistant director of the Center (right).

      Labby put a handful of these
retired practitioners in a room for a     now called the Daniel Labby Senior                  each invited guest. The ethics center,
couple of hours in 1989, and in           Clinicians’ Seminars, averages 50                   which sponsors the series, sometimes
doing so, tapped into a great brain       participants, but has drawn as many                 sends as many as 150 invitations for a
trust. Group members dedicated            as 90 in a single session.                          seminar. “We never refuse anyone in
themselves to open discussions about           What’s the secret to his success?              a caring profession who wants to
vexing ethical problem cases they’d       It may be, in part, due to maintain-                come,” says Labby. The audience is
encountered in practice. At the first     ing confidentiality during the closed-              usually a mix of senior and younger
seminar, Labby, now professor             door seminar discussions. He allows                 psychiatrists, internists, surgeons,
emeritus of medicine and psychiatry       no reporters and discourages note                   family practitioners, anesthesiologists,
in the OHSU School of Medicine,           taking. He asks participants to keep                and even lawyers, principally from
presented two cases of his own. Both      the discussions to themselves or                    the community and faculty. Some
concerned the dilemma of what to do       among professional colleagues. This                 attend for only one seminar because
with unsolicited, secret information      way, he says, members of the                        the topic is of special interest to
that someone gives you about a            audience have the freedom to speak                  them, but there’s also a core group
patient.                                  openly.                                             that attends regularly.
      Ten years later, the twice-annual        The audience is there by                            The semiretired internist-turned-
seminar series is thriving. The series,   invitation only, and the energetic                  psychiatrist serves as moderator
                                          founder writes a personal note to                   during discussions. Usually a speaker
Outreach and Education / 18

“I’ve always thought that the retired physician was one of society’s greatest
losses of manpower.”
                                                                                          — Daniel Labby, M.D.

  with a special interest and skills in a   medical literature for mention of a      helped with curriculum design.
  topic presents a case; and often a        similar format devoted to medical             The seminars also are a way for
  panel of experts offers insights on a     ethics and found nothing. They later     alumni to stay in touch with the
  subject. With all the rapid advances      published an article in the spring       schools, and some have become
  in technology and medical science,        1997 issue of Pharos, a journal of       contributors to the ethics center.
  there’s never a shortage of topics. The   Alpha Omega Alpha (the medical                What’s next for Labby, who has
  most recent seminar covered threats       honor society), explaining the series’   already received a life time achieve-
  to privacy, and access to patient         purpose to a national audience of        ment award from Reed College
  records by insurance companies and        physicians who graduated at the top      (he was graduated in the class of ’35)
  others with access to electronic          of their medical school class. “(Our     and a Preuss Award for Outstanding
  records. Other subjects over the years    goal has been) to produce informa-       Alumni from the OHSU School of
  have included issues of confidentiality   tion, attitudes and viewpoints that      Medicine (class of ’39), and whose
  and secrets, the futility of treatment    can be channeled into teaching,          seminar series now bears his name?
  for seriously ill newborns, care of       policy guidance, and research … ,”            He says longevity runs in his
  patients who refuse treatment, the        they wrote.                              family and he’ll probably just keep
  privacy and rights of patients, ethical        They also said, “the discussions    going — “as long as I’m doing
  issues during end-of-life care, and       could be used to enrich and expand       something useful.”
  even doctors’ errors — confess or         contemporary teaching and training
  keep secret? “Our basic tenents are       needs in our institution if they were
  how to preserve the patients’ au-         designed in such a way that the
  tonomy and their sense of self-           mature experience and good judg-         Miles Edwards, M.D.,
  determination as a partner in their       ment of the seasoned clinician could     continued from page 16
  health care decision, and to respect      be salvaged and channeled.”              what we’re here for; that’s the core of
  privileged information and confiden-           That is indeed what has hap-        our profession.”
  tiality, while maintaining a sense of     pened at OHSU. Seminar partici-               In recognition of his many
  fairness to the community in public       pants have become a valuable source      accomplishments, the School of
  health matters,” he says.                 of volunteer teachers and consultants    Medicine in 1998 honored him (class
        As far as anyone can tell, the      for the medical school. Some are         of ’56) with the Charles Preuss,
  senior clinicians’ seminars are unique.   helping to teach the Principles of       M.D., Distinguished Alumni Award.
  Labby and Susan Tolle, M.D.,              Clinical Medicine course for first-           Says Tolle, who nominated
  director of the ethics center, searched   and second-year medical students and     Edwards for the Preuss award, “Miles
                                            the Transition to Residency course for   personi•es humanism and compas-
                                            fourth-year students, and some have      sion. The Center’s whole thrust is
                                                                                     health care with compassion; Miles
                                                                                     embodies that.”
                                                                                               Outreach and Education / 19

Kinsman Investment in The Center for
Ethics One of His Best; Kinsman
T     he Center for Ethics and one of
      its chief sponsors have at least
one thing in common: they’re both
                                                 “John Kinsman has given
                                           generously to the Center in several
                                           ways, including funding an endow-
                                                                                    conferences is the sharing that
                                                                                    happens,” says Tolle. “Something is
                                                                                    brought from every part of the state.”
self-made.                                 ment to support the Kinsman              She uses the example of St. Charles
     John Kinsman, who sponsors            Conference Series,” says Tolle. “This    Hospital in Bend. The hospital’s
conferences including the annual           has enabled the Center to perma-         catchment area has the country’s
statewide ethics conference that           nently co-sponsor regional ethics        lowest in-hospital death rate among
carries his name, didn’t always have       conferences.”                            Medicare patients and the highest
money to give away. He says he was               The conferences are held around    rate of hospice care in Oregon. She
born “in a house or a grain elevator”      the state and always are jointly spon-   says everyone is learning from this
in Darmody Saskatchewan, Canada,           sored by local health systems or other   example. She adds that, “So much
and as a young man did farm chores         entities. Topics, which can vary wide-   more is possible when we build
for room and board.                        ly, are unified by an ethical theme.     networks.”
     His strong work ethic, along          For the 20-some conferences held in           Due to John Kinsman’s foresight
with a bit of luck and an evident          the past, topics have included ethical   and willingness to take a risk, health
knack for spotting a good investment       concerns in managed care, poverty        care ethicists are getting together and
eventually led to Kinsman Enter-           and access to care, emergency room       working out solutions to many vex-
prises, a private company that has         decision-making, special concerns in     ing problems. As he has said before,
been involved in a variety of interests.   pediatrics and much more.                “The Center for Ethics has been one
His early business success came from             “The wonderful thing about the     of my most worthwhile investments.”
buying property in an area that
eventually grew to be Wilsonville. He
also invested in bank stocks, and as
his portfolio grew, he became a
director of First State Bank, Pacific
Western and most recently Key Bank
from which he retired. He was also a
member of the board of Columbia
Funds for twenty-five years after
having played a part in the formation
of the Funds.
     When he met Susan Tolle, he
saw another good investment — of
the personal variety. “I was so
impressed with Susan’s dedication for
bereavement care that I put my
money on her. No one else would do
so at the time. Of course, she has
shown all those non-believers how
important a good investment can be.”
Outreach and Education / 20

The Coalition of Oregon Ethics Resources
Highlights Ethics Center Role as Convener

  P    erhaps nothing illustrates the
       Center for Ethics in Health
  Care’s role as facilitator better than
                                           nication link for four regional
                                           networks — all separate from the
                                           ethics center but sharing common
                                                                                        The coalition has its roots in the
                                                                                   Health Ethics Network of Oregon
                                                                                   (HENO), which began in the mid-
  “COER” — the Coalition of Oregon         ethical concerns.                       1980s as a way to share experiences
  Ethics Resources. Think of it as the          “The ethics center has been        across care settings. Says Dunn, “I
  statewide umbrella for several highly    wonderfully supportive as the           started talking with Mike Garland,
  productive task forces and a commu-      convener,” says Patrick M. Dunn,        D.Sc.Rel., about whether he thought

  “I started talking with Mike Garland, D.Sc.Rel., about whether he thought
  it would be helpful to have a group of professional ethicists in Portland get
  together on a regular basis. We both thought it would, and so we came up
  with a list of people from diverse clinical care settings. We met and asked,
  ‘Is there an interest?’”
                                                                                  — Patrick M. Dunn, M.D.

                                           M.D., senior scholar and founder of     it would be helpful to have a group of
           Regional                        COER.                                   professional ethicists in Portland get
        Representatives                         As a loosely structured, volun-    together on a regular basis. We both
                                           tary organization without walls,        thought it would, and so we came up
      Central Oregon Network
                                           COER has succeeded in building          with a list of people from diverse
            Dorothy Gowdy                                                          clinical care settings. We met and
                                           trusting relationships among diverse
      Health Ethics Network of             individuals and entities. With ideas    asked, ‘Is there an interest?’”
        Northern Oregon and                from COER, the ethics center                 Garland, associate director of the
       Southwest Washington                spawned the Task Force to Improve       Center, and Dunn got an enthusiastic
            Mary Ann Dickey                Care of Terminally-Ill Oregonians,      response from the early participants.
                                           the POLST Task Force and the            At the time, many of them were
     Southern Oregon Coalition             Kinsman Conferences. COER’s main        struggling with the issue of patients
        of Ethics Resources                thrust is to share information and      who had been resuscitated against
             Patrick Gillette              resources, improve the knowledge        their wishes. The group began to
                                           and skills of health care providers,    meet quarterly, and membership
      Willamette Region Ethics                                                     increased.
                                           propose public policy and provide
             Network                       opportunities for ethicists to share
               Barry Heath                 common experiences.
                                                                                                Outreach and Education / 21

“The beauty of COER is that it’s not ‘owned’ by a single institution nor is it
dominated by the Portland area or by any particular group”
                                                                                    — Patrick M. Dunn, M.D.

      In early 1991, with assistance      interest or stake
 from the two-year-old Center for         in health care
 Ethics in Health Care at OHSU and        ethics comes
 Legacy Good Samaritan Hospital and       together at one
 Medical Center, HENO sponsored a         place and time.
 statewide meeting. “There was a lot            “The beauty
 of energy and excitement at that first   of COER is that
 convention,” says Dunn. “We did a        it’s not ‘owned’
 needs assessment and from that initial   by a single insti-
 prototype of ethics networking built     tution nor is it
 the foundation for COER. It was          dominated by
 among the first such networks in the     the Portland area
 United States.” This meeting led to a    or by any partic-
 statewide consensus on the need for a    ular group,” says
 system to better communicate patient     Dunn.
 wishes about life-sustaining treatment         After a
 when transferred across settings.        decade of shep-
 With this strong mandate from            herding COER,
 COER, the ethics center convened         Dunn stepped
 the Physician Orders for Life-           aside last year.
 Sustaining Treatment Task Force.         His successor, Robert H. Richardson,      Robert H. Richardson, M.D., current state-
      In addition to the statewide        M.D., assistant director and commu-       wide COER leader, welcomes participants
 coalition, COER members divided          nity liaison for the Center, says their   to the COER/Kinsman Conference in
 themselves into four geographic          next major task includes developing a     Medford, Oregon this past April.
 networks (HENNO for the Health           comprehensive program, which
 Ethics Network of Northern Oregon,       guarantees a decent level of health
 CONET for Central Oregon                 care for all Oregonians. “We’re
 Network, SOCOER for Southern             looking at disadvantaged groups of
 Oregon Coalition of Ethics Resources     people with limited access to health
 and WREN for Willamette Region           care, such as immigrants, women,
 Ethics Network). These networks          children, and the working poor.”
 collaborate on local issues and also           Richardson says COER will
 take turns hosting the annual            continue to be active in end-of-life
 Kinsman Conferences. The result is       care, the ethics of managed care and
 that once a year, anyone with an         they will be looking at how to achieve
                                          better mental health care. “When
                                          multiple disciplines from around the
                                          state strive for a common goal, real
                                          change is possible.”
Outreach and Education / 22


“T      alk is cheap,” the saying goes.
        But the talk that lives at the
  heart of ethics education is anything
                                            wins at all costs.’”
                                                 The challenge of ethics talk
                                            arises every day in OHSU classrooms,
                                                                                     spiritual needs of seriously ill
                                                                                     patients. Martin Donohoe, M.D.,
                                                                                     uses literature, history and philoso-
  but cheap. This talk is a difficult art   resident lounges, staff and conference   phy to draw resident physicians into
  that connects people in trust,            rooms — just about anywhere people       deeper explorations of humanistic
  compassion, justice, solidarity, and      congregate on campus. Faculty of the     values in health care.
  even in profound disagreement.            Center for Ethics in Health Care              Faculty in the School of Medi-
  Ethics teaching at OHSU challenges        regularly share resources, ideas, and    cine invite students to engage in
  professional students to open             methods for nurturing this talk across   ethics talk right from the beginning
  themselves to others’ values and to       a wide array of topics. Catherine        of their studies, helping them explore
  trust others enough to speak of their     Salveson, Ph.D., challenges under-       a continuous stream of questions
  own deeply held values. One student       graduate and graduate level nurses to    from privacy to pain management,
  recently shared these reflections on      explore gray zones of patient care,      cost control to experimental proce-
  finding herself alone in her convic-      community health issues, access to       dures, abortion to physician-assisted
  tion among a group of colleagues:         care, and patient rights. Gary           suicide. Who owns genetic informa-
  “Suddenly I felt a need to defend         Chiodo, D.M.D., and Susan Tolle,         tion? Should the diagnosis of depres-
  myself, a need to say significant         M.D., challenge dental students with     sion go in the medical record? Are we
  things. But of course, my mind went       cases like the following: Should a       keeping our commitments to patients
  almost blank at this point and I was      dentist treat a patient who needs        when we limit tests or eliminate
  only left with an emotional response      immediate care for extensive dental      return visits or discourage bedside
  that I had not even known was             disease then post-date the insurance     counseling in the name of efficiency?
  within me.”                               claim to get beyond her required         Are we doing our fair share of caring
       Ethics talk takes colleagues to      waiting period for dental coverage at    for uninsured patients?
  places where fundamental moral            her new job?                                  When the Center for Ethics was
  disagreement requires them to find             Virginia Tilden, D.N.Sc., and       initiated, its founding members
  words that honor the others’ convic-      Michael Garland, D.Sc.Rel., bring        understood that moral responsibility
  tions without betraying their own. A      research ethics questions to graduate    is shared and that ethics talk has to
  student gave this description of the      students in the Schools of Nursing       occur among a wide array of health
  power of ethics talk to transform his     and Medicine. Leslie Ray, Ph.D.,         care professionals. The future of
  thinking about moral disagreement         introduces nursing students to           ethics education at OHSU will go
  with colleagues. “I think that in the     organizational ethics to aid their       beyond merely sharing methods
  future I will have a resolve to first     capacity to engage in ethics talk in     among faculty from different
  think, ‘how can I work TOGETHER           the committees, unit meetings and        disciplines, who then return to their
  with this person whom I really            work teams of modern health care         separate schools and work with their
  disagree with to resolve this issue as    institutions. Molly Osborne, M.D.,       students. Ethics talk in interdiscipli-
  much as possible,’ rather than ‘I need    Ph.D., helps resident physicians to      nary groups of students at all levels is
  to keep silent and avoid this topic       explore the ethical significance of      the path that OHSU educators need
  because it is uncomfortable,’ or ‘I       comfort care, hospice, advanced care     to pursue. For example, nurses,
  need to make sure that my agenda          planning, and the psychosocial and       physicians, social workers, chaplains
                                                                                            Outreach and Education / 23

“Mike Garland has been a guiding force in student education. From the
time I was a student in the 1970s until the present, I have valued Mike’s skill
in inspiring each of us to become a better physician, nurse or dentist.”
                                                                                     — Susan Tolle, M.D.

all have to explore together what to   to borrow the thoughts and ideas of      taken away; and in its place was a
do when they encounter a patient       authors before even trying to find an    new desire to help others understand
who refuses to undergo life-saving     answer within myself. And it became      me — to see my heart not my
surgery.                               a ‘defeat’ because when I saw my         arguments.”
     The challenge of ethics educa-    values being tested, I ran for cover
tion continues to be the same.         under published arguments rather
Faculty must find ways to create       than going first to establish my own
occasions where ethics talk can pro-   values … Slowly, as I became more        Michael Garland, D.Sc.Rel., (center left)
duce insight like the one described    firm on knowing why I believed what      leads a seminar discussion on ethics with
by this OHSU student: “I had tried     I believed, the defensive attitude was   OHSU students.
                                           Challenges for the Future

Medical ConŽdentiality:

W          eeks before Joe DiMaggio
           died and while he was
critically ill and comatose, journalists
                                           the most private information about
                                           our lives and bodies may be posted to
                                           a lifetime electronic medical record
                                                                                      of managed care, providers had to
                                                                                      manage both patient care and the
                                                                                      costs of care, making the medical
fed the public hourly updates from         by a large health care system.             record also a financial record. OHSU
the hospital on his impending death.             At a recent Daniel Labby Senior      Hospital, for example, must show
DiMaggio defied his doctors’               Clinicians’ Seminar sponsored by the       medical records to government
prognosis and lived long enough to         ethics center, John Benson, M.D.,          insurers to prove that the services
complain about his loss of privacy. Of     assistant director of the ethics center    billed for were actually rendered. And
course, it’s not just baseball Hall of     and dean emeritus of the School of         because managed care and large
Famers who suffer public intrusion         Medicine, raised this question: Is         health care systems are inherently
into their lives. Public voyeurism at      medical privacy an illusion or a           about providing cost effective, quality
the most private moments of our lives      sacred trust?                              care, it means they must often use
has been going on for years. This                Patient confidentiality used to be   patient data for outcomes research.

The issue of who has access to medical records worries patients and
practitioners alike. In decades past, a solo practitioner could simply store
the records behind a locked door. Today, providers who post information to
electronic records must institute a new set of procedures and protocols to
prevent unauthorized access.

year, TV executives allowed us to          a relatively simple matter. A person            The sharing of information
witness a terminally ill person’s          would see his or her physician or          across settings is not necessarily bad.
suicide live.                              nurse practitioner, who would make         As Roy Magnuson, M.D., medical
     With mass media, electronic           notations to the medical record —          director of OHSU Hospital, points
communication, advances in genetics,       often as a memory aid. As group            out, hospitals and their systems need
and managed health care, a person’s        practice and third-party reimburse-        aggregate data to determine whether
right to privacy is harder than ever to    ment evolved, patient records became       they’re doing a good job and whether
protect. Our genes can render us           part of a central file bank with access    they have the right patient mix to
vulnerable to discrimination in            by clinicians, office workers, and         maintain the viability of teaching and
insurability and employment;               sometimes —with the patient’s              research programs. The sharing of
pharmaceutical companies rush to           consent — outside entities, such as        information can also help patients
patent segments of our DNA; and            insurers or lawyers. With the growth       through better coordination of care,
                                                                                              Challenges for the Future / 25

“We need to remember that the database is someone’s personal medical
record story. With Web-based electronic records, the challenge is to make
them secure but also make them available to the 1,400 physicians in the
                                                                                   — Roy Magnuson, M.D.

avoidance of dangerous drug interac-      Today, providers who post information         The loss of privacy and confi-
tions and duplication of services.        to electronic records must institute a   dentiality are big issues that ethicists
     Magnuson, however, offers this       new set of procedures and protocols      and the public must face in the
caution: “We need to remember that        to prevent unauthorized access.          coming decade. The OHSU Center
the database is someone’s personal             Patient confidentiality is          for Ethics hopes to find ways to
medical record story. With Web-           challenged by not only who has           balance non-practitioners’ need to
based electronic records, the chal-       access, but by limits on the informa-    know what’s in a medical record with
lenge is to make them secure but also     tion providers incorporate into the      a patient’s right to privacy. Large
make them available to the 1,400          record. Providers may be reluctant to    health systems will need guidance in
physicians in the system.”                add such sensitive information as        setting standards for granting access
     The issue of who has access to       drug addiction, sexual history or        to persons not directly involved in
medical records worries patients and      orientation, or mental health            the patient’s health care and in
practitioners alike. In decades past, a   problems. Yet all these matters may      deciding what, if any thing, is
solo practitioner could simply store      affect a person’s on-going treatment     transferred to large databases. The
the records behind a locked door.         for other ailments.                      tradeoffs are challenging.

                                                                                   Future challenges for the Center include
                                                                                   protecting the dignity and privacy of
Challenges for the Future / 26

Ethics Center Helps Find Balance in

  B    iomedical research on humans is
       essential if society is to alleviate
  suffering from today’s ills. Yet, in
                                              research studies while ensuring
                                              increased protections for them. The
                                              question they raise is, how do you
                                                                                       research that are available to other
                                                                                       disease populations.” Backlar, adds,
                                                                                       “the concept of protection for
  early to mid-20th century, some             test a drug to treat Alzheimer’s or      research subjects need no longer
  governments and institutions took           schizophrenia, for example, if you       mean that vulnerable subjects must
  advantage of people who couldn’t            can’t give it to the patients it’s       be excluded from research participa-
  give their consent because they lived       designed to treat?                       tion. Rather it should signify a
  in mental institutions and prisons.              Where the pendulum stops now        constellation of safeguards provided
  When these abuses came to light, the        is a matter for public debate. To help   to guarantee the rights and welfare of
  U.S. Congress passed strict laws            find the balance, President Bill         all subjects enrolled in studies.”
  protecting vulnerable populations           Clinton created a National Bioethics           Through her seat on the
  from further exploitation. In fact,         Advisory Commission in 1996 and          presidential commission, Backlar is
  federal guidelines governing research       appointed Patricia Backlar, Center for   able to bring her concerns to a
  at most universities and research           Ethics assistant director, to the        national forum and influence

  “ … an overly protectionist stance that shields certain groups from research
  participation may deny such populations the bene•ts garnered from
  scienti•c research that are available to other disease populations.”
                                                                                               — Patricia Backlar

  centers provided so many safeguards         prestigious panel.                       national policy. She says that being
  that many groups, such as those with             Vulnerable populations, particu-    on the commission has put her in a
  severe dementia, children and others        larly those with mental illness, have    position to do more for the popula-
  who could not consent were excluded         found a strong voice nationally          tion she cares about. “This is a
  from clinical trials.                       through Backlar, whose son has           precious opportunity to improve the
       During this time, medical              schizophrenia. She is the author of      lives of people who may be unable to
  science made little headway in              the book, The Family Face of Schizo-     look after their own interests.” She
  treating disorders that affected these      phrenia (G. P. Putnam’s Sons, 1994),     credits the ethics centers’ leaders for
  populations, especially the chroni-         and many published articles on           successfully lobbying the White
  cally mentally ill. However, in the         mental illness and ethics.               House for her appointment.
  past 20 years, and especially since the          She says that “an overly protec-         Gary Chiodo, D.M.D, associate
  advent of AIDS, patient advocates           tionist stance that shields certain      director of the Center, chairs the
  have lobbied for guidelines that are        groups from research participation       OHSU Institutional Review Board,
  more flexible in allowing those who         may deny such populations the            which oversees human research at the
  may be vulnerable to participate in         benefits garnered from scientific        university. His training as an ethicist
                                                                                              Challenges for the Future / 27

“Clearly it is ‘high-noon’ for the ethical reform of human subjects research.”
                                                                                       — Gary Chiodo, D.M.D.

 makes him ideal to head this key         that men not bear the entire burden        do we need laws to protect untested
 board, which he has been a member        of such trials.                            family members from discrimination?
 of since 1992. In addition to                 A particularly thorny area for        It really boils down to this: If a
 ensuring the university’s compliance     research ethics relates to genetic         person is genetically predisposed to
 with federal regulations on human        privacy. Can researchers test stored       illness and you can therefore predict
 research, the group must wrestle with    tissue and blood samples and, if they      his or her future health, how do you
 such topics as obtaining consent from    find something interesting, can they       protect this individual’s privacy?
 subjects with reduced or fluctuating     find out who you are and read your              In August 2000, OHSU and the
 capacity to consent; research with       medical record or contact you?             Center for Ethics will co-host with
 children; genetic research; use of       Probably one of the stickiest issues       the federal Office for the Protection
 placebo controls in studies where the    now facing physicians is how to            from Research Risks a conference on
 subjects have existing disease;          handle the results of genetic testing.     “Ethical Research in the New
 deferred consent in emergency            While drug companies and patient           Millennium: What the Belmont
 protocol research; under-representa-     rights advocates battle in court and in    Report did not Anticipate.” It will
 tion of minorities in research; and      the legislative arena over ownership of    deal with contemporary ethical
 many others. All of these issues form    genes, health care providers and           dilemmas in human subjects research.
 the calculus for a current national      genetic counselors face these practical         As co-chairs of the Center for
 atmosphere in research reform. Dr.       concerns every day. For example, if a      Ethics’ Research Task Force, Backlar
 Chiodo adds, “Clearly it is ‘high-       person learns that he or she has a         and Chiodo work together in
 noon’ for the ethical reform of          devastating genetic condition, is the      assisting OHSU to deal with the
 human subjects research.”                counselor bound by traditional             most difficult ethical issues impacting
      Dr. Chiodo raises the issue of      providers doctor/patient relationships     human subjects research. As we cross
 women in research — a hot topic in       to withhold this information from          into the next millennium, Backlar,
 Oregon and nationally. “Some             blood relatives who also may be at         Chiodo and others at the center will
 pharmaceutical companies prefer to       risk? Or, does the counselor have a        be among those defining biomedical
 exclude women of childbearing            moral obligation to warn other family      research practices that give vulnerable
 potential from studies of new drugs      members, especially if treatment for       populations and women more
 because of the possibility of these      the disorder is available?                 freedom to participate and yet
 drugs causing birth defects. On the           Brad Popovich, Ph.D., medical         provide adequate safeguards. They
 other hand, women are able to            geneticist, asks this: Should clinicians   anticipate many new challenges –
 understand and appreciate these risks    treat genetic information differently      human stem cell research, embryonic
 and utilize effective contraception.     from other medical information in a        and fetal tissue research, cloning and
 “The principle of respect for au-        patient’s record? Should genetic           many new directions in genetics. The
 tonomy would seem to require that        information go into the medical            key is to ensure that all human
 women not be excluded from the           record where insurers or even              subjects, and especially those who
 potential benefits of such trials, and   employers may gain access to it? Will      may be disadvantaged or vulnerable,
 the principle of justice would require   this exclude people from insurance         can participate safely.
                                          and jobs? And if one person’s
                                          inherited condition becomes known,
Challenges for the Future / 28


  A       big message coming from
          community advisors to the
  ethics center is this: pay more
                                                  take a clear stand in favor of universal
                                                  coverage and, with assistance from
                                                  the advisory council, wrote a
                                                                                                   Chiodo, D.M.D., Michael Garland,
                                                                                                   D.Sc.Rel, Virginia Tilden, R.N.,
                                                                                                   D.N.Sc., Susan Tolle, M.D., and
  attention to access to health care.             commentary published in The                      Gloria Tuma, M.S.W., calls for health
       The community advisory council             Oregonian on December 26, 1998,                  insurance coverage for all Oregonians
  includes representatives from the               pushing for health insurance coverage            by 2003. “We call on colleagues and
  Oregon Health Plan, Oregon Health               for every Oregonian. The authors                 fellow Oregonians to join in ac-
  Decisions, migrant health clinics, the          note that 40 million Americans lack              knowledging our social responsibility
  Ecumenical Ministries, the Jewish               coverage for health care and 150                 to identify and take the steps
  community and community health                  million have no insurance for dental             necessary to finish the task. Let us
  activists. This group believes the              care. They call that “an ethical                 value the social solidarity of universal
  Center should urgently press the                shortcoming in the richest nation on             health coverage. What is beneficial to
  argument that all citizens should have          Earth.”                                          individuals can benefit society.”
  access to health care.                               The strongly worded piece,                       They state that managed care,
       The Center’s leaders agreed to             written by John Benson, M.D., Gary               practice guidelines, utilization review

  Community Advisory Council and Center leaders: •rst row (left to right) Joanne McAdam, Susan Tolle, Betty Foxley; Second row (left to
  right), John Benson, Jr., Gary Chiodo, Michael Garland, Tina Castañares, Ted Falk, Cornelia Hayes Stevens, Mary Radke-Klein, Gloria Tuma.
                                                                                             Challenges for the Future / 29

“In our •rst decade, we tended to focus on ethical issues of individual
patients, such as improving care at the end of life … Now we need to
increase our focus on systems issues where social policy and organizational
ethics affect whole populations of people. The Center for Ethics in Health
Care should be a voice for universal access to health care as a matter of
justice and the common good. We need to pay attention to ethics as a
social process, not merely an intellectual puzzle.”
                                                                              — Michael Garland, D.Sc.Rel

and other part-way measures have         care as a matter of justice and the              In addition to taking a stand on
failed to stem the steadily increasing   common good. We need to pay                universal coverage and making it
costs of health care or the unaccept-    attention to ethics as a social process,   public, the Center’s most recent
ably high number of uninsured            not merely an intellectual puzzle.”        Kinsman Conference was devoted to
individuals. The authors cite the             Garland says the Center’s efforts     managed care and access. Participants
Oregon Health Plan as a good             should keep connecting abstractions        looked at such issues as access in
beginning but note that it has failed    like access to care with visible human     underserved regions, serving the
to achieve universal coverage.           realities. Fixing a single person’s        uninsured working poor, low-income,
     “In our first decade, we tended     problem leaves the source of the           mentally ill and elderly populations.
to focus on ethical issues of indi-      problem intact. “When we see a                   The authors conclude in the
vidual patients, such as improving       young boy die because his family           Oregonian piece that “achieving the
care at the end of life,” says Center    can’t afford an organ transplant, we       goal (of universal access) will require
associate director Garland. “Now we      need to see that the cause is society’s    widespread community support,
need to increase our focus on systems    failure to guarantee universal             business commitment and political
issues where social policy and           coverage. He says the Oregon Health        will. Because of the fundamental
organizational ethics affect whole       Plan has improved access to care for       fairness of this goal, we Oregonians
populations of people. The Center        Oregon’s poorest citizens, but that        must demand of ourselves its early
for Ethics in Health Care should be a    too many other people are still            fulfillment.”
voice for universal access to health     without coverage.
Challenges for the Future / 30

Incentives of Managed Care

  M        anaged health care came
           riding into the 1990s full of
  the promise to reign in the ever-
                                             care ethicists is whether the •nancial
                                             incentives of managed care have
                                             bene•ted or harmed patients. Has it
                                                                                        reimbursement as it affects decision-
                                                                                        making as well as access to health
                                                                                        services by such groups as the unin-
  increasing costs of health care. It also   been good for society?                     sured working poor, the mentally ill
  gave policymakers hope that they                Even before the era of managed        and the elderly. Smith cites the prob-
  could minimize the new costs of pro-       care, Michael Garland, D.Sc.Rel,           lem of the chronically mentally ill
  viding coverage to 40 million unin-        ethics center associate director, taught   getting access to care. “It takes many
  sured citizens. Managed care could         medical students about cost-con-           resources to assist these individuals to
  also reward wellness and discourage        scious health care. Garland believes       live in communities and not require
  over use of expensive and sometimes        that managed care has the potential,       re-hospitalization — community
  futile high-tech care. “Gatekeepers”       if well designed, to promote preven-       support systems, costly drugs, time-
  would coordinate care, and providers       tion. “When people complain about          consuming interventions by provid-
  would reap •nancial bene•ts if they        managed care, they are really              ers, on-going crisis management.”
  could keep their patients healthy and      complaining about badly managed                  Gary Chiodo, D.M.D., associate
  out of the hospital.                       care. The solution isn’t unmanaged         director for the Center cites another,

   “It’s easy to demonize managed care … But managed care can be used for
   good. It has made us better stewards of our resources — it forces us to look
   at our practices differently and come up with new solutions.”
                                                                           — Mary Denise Smith, R.N., M.S.

       In 10 short years, managed care       care. Finding a solution requires us to    often overlooked problem in health
  restructured the health care industry.     think ethically about management.”         care access — a problem that
  Anywhere from 50 to 70 percent of               Mary Denise Smith, R.N., M.S.,        managed care also holds potential to
  the population is now in some type         assistant director of the ethics center,   address. Chiodo explains that “ the
  of managed care system — an                concedes that “we’re making the            often quoted number of 40 million
  astonishing feat. In Oregon, 85            initial steps in looking at the ethics     Americans without medical insurance
  percent of those who have insurance        issues in managed care,” and that like     pales by comparison to the 150
  are in managed care. Whether               any reimbursement system with a            million Americans without dental
  managed care has achieved its goals is     pro•t margin associated with it, the       insurance. Most of these individuals
  a matter of debate for policymakers        risk for abuse exists.                     do not seek oral health care until
  and the public. What concerns health            She and other ethicists have          small problems that are inexpensive
                                             begun to focus more on the matter of       to prevent or cure have escalated to
                                                                                              Challenges for the Future / 31

“Economic incentives are not new in health care. In the fee-for-service
model, the more treatments and procedures we did, the more money we
made. Sometimes procedures were done that were of little bene•t. The
tide has changed. In some managed care plans, the more treatments and
referrals a doctor provides, the less he or she makes”
                                                                                          — Susan Tolle, M.D.

major infections with pain and poor       Do some plans “skim” off the healthy       of little bene•t. The tide has changed.
prognosis. For some reason, we have       patients, leaving the sick without         In some managed care plans, the
a tradition in this country of separat-   access? Because managed care makes         more treatments and referrals a
ing medical insurance from oral           it harder for hospitals to “cost shift,”   doctor provides, the less he or she
health insurance. Its as though your      are they downsizing to the point of        makes,” says Tolle. “At times, these
mouth is not part of your body and        endangering patients? Do providers         new incentives encourage doctors to
your oral health has no effect on your    have a moral obligation to reveal their    provide less treatment than patients
systemic health. People are just not      own self-interest in a plan that           need. The key is •nding the right
put together that way.” Clearly, the      rewards them for not ordering tests or     balance of incentives. This leaves a
health care dollars that could be         not referring patients to more             vital role for ethics in exploring the
conserved by well-managed care            expensive specialty care? Do limits on     details of each incentive.”
could be used, in part, to expand the     hospital stays compromise quality                “It’s easy to demonize managed
availability of oral health services.     patient care?                              care,” Smith says. “But managed care
Similarly, the delivery of oral health         Susan Tolle, M.D., director of        can be used for good. It has made us
care through a well-managed plan can      the OHSU Center for Ethics in              better stewards of our resources — it
be an effective method for reducing       Health Care believes that managed          forces us to look at our practices
the number of Americans with no           care will be the center’s greatest area    differently and come up with new
oral health insurance.                    of future growth. “Economic                solutions.”
     Ethicists everywhere are asking      incentives are not new in health care.           Smith and others agree that the
these questions: Do some managed          In the fee-for-service model, the more     ethics center has the wisdom and
care strategies maintain or erode         treatments and procedures we did,          experience to tease out solutions and
quality by cutting too many corners?      the more money we made. Some-              help design the future.
                                          times procedures were done that were
                                                         The Satisfaction of Giving

Compassion in health care, especially at the end of life, touches everyone. As the Center for Ethics enters its second decade, it is still evocative and rewarding for

me to support the Center’s commitment to practical or applied ethics. The Center does more than just debate today’s moral dilemmas; it is offering real solutions

that impact individual patients. The Center’s work affects people not just in Oregon but throughout the entire country. There is much work remaining to be done.

We can all feel proud of the Center’s accomplishments. Please think of the challenges ahead of us as you read this report of our first decade.

                                                                                                                                    Cornelia (“Cornie”) Hayes Stevens

Cornie Stevens: A Woman of Action
                                                            Gold Headed Cane Award. The grad-                       medical problem in his or her back-
                                                            uating senior class selects a classmate                 ground. She adds that, “People
                                                            to receive the prestigious award for                    responded most generously and for
                                                            compassion in health care.)                             that I am most grateful.”
                                                                 It was at an OHSU commence-                             She adds: “When we started,
                                                            ment ceremony where Stevens was                         Susan was always saying that she
                                                            presenting that year’s Gold Headed                      couldn’t get national foundation
                                                            Cane Award that she met Susan Tolle,                    funding until we could show very
                                                            M.D.. “We hit it off right away,” she                   strong support locally. We did that
                                                            recalls. Tolle and Stevens realized that                and now national foundations have
                                                            they could each help the other: Tolle                   taken an interest in the center’s
                                                            by putting together a stellar panel of                  work.” Impressive national organiza-
                                                            ethicists from disciplines across                       tions, such as the Robert Wood
                                                            diverse fields of health care, law, soc-                Johnson Foundation, have provided
                                                            ial work, and religion, and Stevens by                  substantial grants for the center’s

   O       ver a cup of tea at Vista
           Springs Cafe in Portland’s
   West Hills, Cornelia (“Cornie”)
                                                            raising money to bring these people
                                                            together into a cohesive, formal unit.
                                                                 The two women combined
                                                                                                                    work in end-of-life care.
                                                                                                                         “When I first met Susan Tolle,
                                                                                                                    the Center was just taking off,” says
   Hayes Stevens explains her involve-                      forces and within three years had in                    Stevens. “It has grown faster than
   ment with the ethics center this way:                    raised $2 million for an endowment                      anyone anticipated.” As the Center’s
   “Compassion in health care, especial-                    to support the center’s core opera-                     chief fundraiser and to keep donors
   ly at the end of life, touches everyone.”                tions. “While we had a few very                         and others informed on the center’s
         This universal truth and a family                  generous donors, there were more                        progress, she writes a quarterly
   history of advocating for compassion-                    than 300 people who gave to the                         “Cornie” letter, — a pithy, “insiders”
   ate health care gave the Portland                        center — many in the $25 to $50                         account of the center.
   philanthropist a natural interest in                     bracket,” says Stevens. “Our methods                         She’s particularly proud of the
   helping fund an ethics center at                         were not the usual glitzy fund-raisers;                 fact that the Center is “unbesmirched
   OHSU. (Her father, the late Edmund                       some small luncheons and letters                        with any political overtones.” She
   Hayes, provided funding to the                           raised most of the funds.” She relied                   says the center’s leadership carefully
   OHSU medical school to support the                       on the fact that everyone has a                         screens prospective large donors to
                                                                                                          The Satisfaction of Giving / 33

                                           of Giving …

ensure that they don’t have a political         You have read throughout this booklet of the great array of issues addressed by the
agenda. “We’re not compromised in
any way by our funding sources —           Center in just ten years, and of the intense spotlight through the media of international
no HMOs, no pharmaceutical com-
panies, for example,” she says. The        attention that this steadfast and unwavering concentration on patient comfort has brought.
advantage of this approach confers on
the Center freedom from political          There is one fact that has made this success story possible: its financial support comes from
in•uence and hence, greater credibil-
ity. “We are believed,” she says.          individuals who have no political or financial axe to grind. This has been by design. There
      Another reason for her unqual-
ified support is the ethics center’s       are very few, if any, ethics centers around the country, who are not politically beholden to an
commitment to practical or applied
ethics. “They do more than debate          industry or an institution. So our Center, in a state of small population, tucked off in the
today’s moral dilemmas; they are
committed to doing something               remoteness of the American West, is now the foremost spokesman for patient comfort in
concrete for patients. I’ve never seen
people spend so much of their profes-      every field of medicine nationally, and increasingly, internationally. This publication has
sional time carefully working with
individuals to see that they are well      been produced courtesy of an anonymous gift.
represented and cared for.” And, she
adds, “They figure out how to make              Our original founders listed on the board at the entrance to the Center
change happen so patients can bene-
fit.” She says that the Center’s work      have been most generous. Often they have given far more than once. Also, I
affects people not just in Oregon but
throughout the entire country. “People     must thank each and every person who has sent in donations of any size.
in Oregon don’t realize how well
known the Center is outside the state,     Perhaps it was in direct response to our original Endowment Fund drive: and
especially for its advocacy of more
compassionate care at the end of life.”    now many times it is a memorial, and often unsolicited. You are the riches of
      As she finishes her cup of tea,
Stevens acknowledges that the ethics       our community and validation of the Center’s work.
center has much work remaining.
There’s managed care, genetic screen-                                                                          Cornelia Hayes Stevens
ing, privacy and electronic medical
records, and a host of other issues.                                                                  Chair, Endowment Campaign
And it’s clear that as the Center starts
its second decade, Cornie Stevens will
be there, raising money, writing
letters, and doing what she can to
ensure the Center’s continued success.
The Satisfaction of Giving / 34

   Gifts to the Center            Gifts and grants            Leroy S. Caspersen         Arlene D. Schnitzer
   for Ethics — Our First         up to $25,000               Alyce R. Cheatham Fund     John Selling
   Decade July 1, 1989            Charles D. Allis                at Oregon Community    Joel Leonard Seres
   to June 30, 1999               Berg Family Charitable          Foundation             Leslie Sherman
                                     Foundation               Evelyn S. Cooper           William T.C. Stevens
   Original Founders
                                  James Bisenius              Jean C. Cory               Ernest C. Swigert
   John Kinsman
                                  Cynthia Jackson Ford        Mickey and Paul DeVore     Elizabeth A. Swindells
   Margaret Watt Edwards
                                  Madalena G. Fox             Alma H. DeWeese            Ann and William
   Meyer Memorial Trust
                                  A. Wheeler Hayes Fund at    Richard F. Drake              Swindells
   The Collins Foundation
                                     Oregon Community         Leah and Stuart            Tektronix Foundation
   Madeline B. Nelson
                                     Foundation                   Durkheimer             Virginia P. Tilden
   Cornelia Hayes Stevens
                                  H.W. & D.I. Irwin           Miles John Edwards         Donald E. Tykeson
   Maribeth W. Collins
                                     Foundation               First Interstate Bank      U.S. Bank
   Cherida Collins Smith
                                  Joanne F. McAdam                Foundation             William B. Webber
   Dr. Glenn Stuart
                                  Joan L. Shipley             Nancy and Raymond          Elizabeth M. Wessinger
      Campbell Memorial
                                  Swigert Foundation              Friedman               Bruce G. Willison
   Summerville Fund at
                                  Susan Hawes Swindells       Alice and Anthony Gallo    Meredith G. Wilson
      Oregon Community
                                  Rose Tucker Charitable      Bingham Trust              Janet Wolf
                                     Trust                    Clarence H. Hagmeier
   Alyce R. Cheatham                                                                     Gifts up to $1,000
                                                              Halton Foundation
   Celia Bast Young               Gifts up to $10,000                                    Edwin M. Baker
                                                              Elizabeth B. Hirsch
   Denison Family Fund at         Anonymous                                              John Bascom
                                                              H & E Hirsch Fund at
      Oregon Community            Melissa L. Buchan                                      Paul Benjamin Bascom
                                                                  Oregon Community
      Foundation                  Sue Cameron                                            Beverly T. Black
   Anonymous                      Jean B. Coughlin                                       John A. Bruce
                                                              Jean Irwin Hoffman
   The Arthur Vining Davis        Patrick M. Dunn                                        James and Jane Bryson
                                                              Anne G. Holtz
      Foundations                 Elizabeth and John Gray                                   Fund
                                                              The Jackson Foundation
   Project on Death in            Edmund Hayes, Jr.                                      George E. Chamberlain
                                                              Peter Ogden Kohler
      America/Open Society        Ronna & Eric Hoffman                                   Gary T. Chiodo
                                                              Helen H. Lindgren
      Institute                   Mary D. Hughes                                         Michael J. Garland
                                                              George B. Long
   Dr. R. Blaine Bramble          The Samuel S. Johnson                                  William A. Gittelsohn
                                                              Maybelle Clark
      Medical Research               Foundation                                          Marcia I. Johnson
      Foundation                  The Kinsman Foundation                                 Robert D. Koler
                                                              Carolyn and Charles
                                  Caroline R. Lobitz                                     Kriag W. Kramers
   Grants up to $500,000                                          McMurchie
                                  McGraw Family                                          Arnold M. Labby
   The Greenwall Foundation                                   Laurie and Gilbert Meigs
                                     Foundation                                          Robert S. Labby
   The Robert Wood                                            Alice-Ann and Burke
                                  David A. Pugh                                          Robert R. Mitchell
     Johnson Foundation                                           Morden
                                  Ralph L. Smith Foundation                              Victor D. Menashe
                                                              Ann Morgenstern
   Grants up to $100,000          Susan Willis Tolle                                     Kent E. Neff
                                                              Northwest Natural Gas
   The Nathan Cummings            Wheeler Foundation                                     Roscoe C. Nelson
                                                              Beverly and Milo Ormseth
     Foundation                                                                          Maurine B. Neuberger
                                  Gifts up to $5,000          Joseph F. Paquet
                                                                                         Richard L. Rosenberg
   Gifts and grants               M. Mehdi Akhavein           Wilma Jane Perlman
                                                                                         Arnold Rustin
   up to $50,000                  Emily W. Baines             Price Waterhouse Founda-
                                                                                         Mildred Schnitzer
   Anonymous                      Grace White Ball                tion
                                                                                         Dorothy F. Sherman
   Collins Medical Trust          Shelia and Hugh Barton      J. Richard Raines
                                                                                         Benjamin V. Siegel
   Margaret and Daniel Labby      Mary C. Becker              Daniel C. Regis
                                                                                         Milton R. Smith
   Carol and Elton Lovitt         John A. Benson              Robert H. Richardson
                                                                                         Eleanor and John Stern
   PacifiCorp Foundation          Nancy and Harvey Black      Marilyn and Robert
                                                                                         Ralph B. Stratford
   R.B. Pamplin Corporation       Helen W. Bledsoe                Ridgley
                                                                                         Betty Jo Ward
                                  Boller-Thomas Foundation    Deanne and Richard
                                                                                         Mary Winch
                                  Mario J. Campagna               Rubinstein
                                                                                  The Satisfaction of Giving / 35

Gifts up to $500             Marian D. Jaffe            Betty J. Wade               Marcia M. Nielsen
Jayne A. Ackerman            Joanne Jene                Linda D. Ward               Deborah S. Novak
Thomas P. Almy               Murray L. Johnson          Marjorie Willis             Janice Orloff
Sue and John Alstadt         Russell L. Johnsrud        Joanna S. Wilson            P.E.O. Sisterhood
Melvin W. Anderson           Anne-Marie Jones                                       Jimmy A. Pizzolato
                                                        Gifts up to $100
Patricia and Byron Backlar   Timothy L. Keenan                                      Clifford Ponsness
                                                        Ted Bates
Rodney Kenneth Beals         Jane R. Kendall                                        Edward Press
                                                        Malcoln Bauer
Clarissa and John Beatty     John I. Krenowicz                                      Joanne Rader
                                                        Ralph C. Benson
Siegfried R. Berthelsdorf    Marion L. Krippaehne                                   Jack Radow
                                                        Mary Jean Bey
Lawrence S. Black            David Labby                                            Bonnie Reagan
                                                        Joseph D. Bloom
Harold Irwin Boverman        Melisssa Lehman                                        Ruth Richmond
                                                        Nancy and Paul Bragdon
Nan M. Brewster              Mary Ann A. Lockwood                                   Beatrice Kartus Rose
                                                        Miriam Brown Lea
John David Bristow           E. Kimbark MacColl                                     Edward A. Rosenfeld
                                                        Marianne Buchwalter
E.C. Brown Foundation        David W. MacFarlane                                    Terri Ann Schmidt
                                                        Paul Buschman
John L. Butler               John B. Marks                                          Herbert Schwab
                                                        Camilla D. Camburn
John Richard Campbell        Herbert E. Mason                                       Eleanor Selling
                                                        Ransom Carpenter
Bernard Carr                 Joseph D. Matarazzo                                    William R. Senders
                                                        Judy Lee Colligan
Louise Labby Carroll         Paul N. McCracken                                      Milton Singer
                                                        Joan D. Cook
Marjorie and Robert          William Richey Miller                                  Douglas Speedie
                                                        Gwynn B. Dockery
   Clarke                    Alan L. Morgenstern                                    Dorothy F. Stafford
                                                        Rita and James
William Elliott Connor       Anne P. Myers                                          James T. Stewart
Kay and Henry Corbett        Joseph W. Nadal                                        Phyllis M. Swett
                                                        Julie H. Durkheimer
Ralph S. Crawshaw            David H. Newhall                                       Anita D. Taylor
                                                        Pamela Jean Edwards
Alice B. Davies              Sally Newlands                                         Lucian W. Taylor
                                                        Lester H. Eisendorf
Martha and Allen Denison     OB-GYN Professors                                      Robert Brown Taylor
                                                        Larry Gibbons
John W. Derbyshire           Mary H. Oldshue                                        Ernie Thiessen
                                                        David Norman Gilbert
Maude E. Dickinson           Donald E. Olson                                        Katherine H. Thomas
                                                        Marshall C. Goldberg
Robert Stone Dow             Mary Peterson                                          Irvin L. Tilden
                                                        Frank J. Hammel
Martin Fishel                Jean G. Pierce                                         Mary Ausplund Tooze
                                                        Shannon Harrigan
Eugene Frederick Fuchs       George Alvin Porter                                    Mildred and John Tuhy
                                                        Hazel Hauge
Evelyn and Thomas            Allen E. Priest                                        Gloria J. Tuma
                                                        Ronald Terrance Heintz
   Georges                   Barbara K. Rice                                        Carl G. Vraspir
                                                        John Hofer
Barbara Lee Glidewell        Mary B. Rogness                                        John Vraspir
                                                        William G. Holford
Timothy M. Goldfarb          William W. Rosenfeld                                   June V. Vraspir
                                                        Harry S. Irvine
Bobby and Alan Gold-         Keith P. Russell                                       Sabine Artaud Wild
                                                        Willis J. Irvine
   smith                     Marjorie Saltzman                                      Mark A. Young
                                                        Bruce M. Kaye
Douglas Goodman              George Saslow                                          Mary Zehrung
                                                        Geraldine C. Kern
Lila Goodman                 Edward M. Scott
                                                        Beverly M. Kilpatrick
Morton J. Goodman            Ben Selling                                            The Center for Ethics
                                                        Joan Labby
Jane and Alan Goudy          Maxine Selling                                         gratefully acknowledges the
                                                        Patti Lahn
Mary Jane Gray               Share-It-Now Foundation                                contributors who have made
                                                        Walter C. Lobitz
Myron Roberts Grover         Eloise D. Spiegel                                      gifts to the Center since the
                                                        Peggy Loveless
John P. Hammerstad           Helen Blomquist Stern                                  founding in 1989. We have
                                                        Leland H. Lowenson
Fritz Hayes                  Robert Stone                                           made every effort to compile
                                                        Milton R. Marks
Philip S. Hayes              Russell J. Tat                                         a complete list of donors. We
                                                        Marina E. McCollam
The Holzman Foundation       Harriet B. Tegart                                      offer our apologies for any
                                                        Bentson Hayes McFarland
Harvey D. Horne              Betty Blomquist Thompson                               omissions, and would
                                                        Frances Dwane McGill
E. Lew Hurd                  Thompson/Rubenstein                                    appreciate your bringing
                                                        Robert Allen Mendelson
William S. Ito                  Invest.                                             them to our attention.
                                                        Elizabeth R. Mitchell
Arvid E. Iverson             Harry L. Turtledove
                                                        Katsumi James Nakadate
     The Center for Ethics in Health Care
  Oregon Health Sciences University, UHN-86
      3181 S.W. Sam Jackson Park Road
          Portland, OR 97201-3098

             Phone: (503) 494-4466
              Fax: (503) 494-1260
      Web site: http//

                    Report Production

                   Susan W. Tolle, M.D.
                   Gary Chiodo, D.M.D.

                    Project Coordinator
               Elizabeth R. Mitchell, M.S.W.

                      Lee Lewis-Husk
                Michael Garland, D. Sc.Rel.

                      Graphic Design
                   Charlotte Woodward

                        Dan Carter
                 Elizabeth Mitchell (p. 21)

OHSU is an equal opportunity, af•rmative action institution.
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