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Home PageThe American Philosophical Association
Newsletter on
Philosophy and Medicine
Rosamond Rhodes, editor
Issue no. 95:1 Fall 1995
From the Editor
This issue of the Newsletter is chock full of interesting contributions. You will find creative pieces shedding new light on classical issues, challenging pieces raising troubling questions about new issues, informative notes, reviews, and announcements providing news about developments in the field.
On the classical issues of the doctor/patient relationship, the use of placebos in medical practice, and error in medicine, you will find three insightful and entertaining poems by physician, David Schiedermayer. On the classical issue of coping with illness and the social response to people with disease, we have "A Man by Nothing Is So Well Betrayed as by His Manners," another poignant story by Felicia Ackerman. Newsletter readers should notice that you have been previously introduced to the main characters, Nick in "Applicants" (Spring 1992) and Julie in "Not This Time" (Fall 1994). In their literary life-span their previous appearances pre-date their current roles. Besides being enlightening and amusing, I find the literary contributions to the Newsletter useful in stimulating student discussion. I plan to use "Such a Gas" with medical students in the third year surgical clerkship discussion of truth telling and error and "Strong Medicine" with second year medical students in their discussion of paternalism. If any readers have used this material, please share your experience with the rest of us.
The timely pieces raise hot issues, soon to be hot issues, and still simmering issues. Ken Kipnis' comments in "Clinical Goals and the Concept of Medical Futility" take up two heated debates at once, the controversy over medical futility and the quarrel about whether there are goals of medicine. If you have somehow missed all of the strife, here is your opportunity to catch up and jump into the fray. The issue that is about to catch fire in organ transplantation involves the use of what is being called "extended donor pool" organs. In "Extended Donor Pool Kidneys: Issues of Informed Consent and Access," nurses Mary Panico and Maritza Solomon, and transplant surgeon Lewis Burrows explain this new course in trying to ease the transplant organ shortage problem. They also map out some of the ethical issues that will have to be confronted as the practice becomes adopted by transplant centers and offer their recommendations of ethical safe guards. The paper by Mark Kuczewski, "The Role of Philosophers in HEC Networks" and the paper by lawyer Ruth Dreyfus, "Are Institutional Ethics Committees Working?" present information on how ethics committees are working and take positions in the percolating dialogue about ethics committees. Do they do any good? whom do they serve? who serves? what training do members have? where do academic philosophers fit in? and, is the status quo as it should be? Because the unrelated topics of medical futility, organ donors, and ethics committees all raise questions about policy and procedure, the discussions in this Newsletter issue become somewhat interrelated.
Reviews of two new books, Death and Dignity: Making Choices and Taking Charge by Timothy Quill and Surrogates and Other Mothers: The Debate Over Assisted Reproduction by Ruth Macklin, announcements of two new bioethics groups, and listings of upcoming conferences round out this issue.
Once again I urge you to volunteer your book reviewing services, to keep me informed of activities that should be announced to Newsletter readers, and to send in your shortish papers, comments, notes, or case discussions for publication in these pages. Be sure to include your mailing address, telephone number, fax and email (if you have them). Items for the Newsletter should be sent to:
Rosamond Rhodes
Box #1108
Mount Sinai School of Medicine, CUNY
One Gustave Levy Place
New York, NY 10029
phone: (212) 241- 3757 fax: (212) 427- 7862
email: rhodes@ smtplink.mssm.edu
From the Committee
FROM THE CHAIR
The committee on Philosophy and Medicine is arranging sessions for the 1995 Eastern Division and 1996 Pacific Division, Central Division, and Eastern Division meetings.
EASTERN DIVISION SESSION
December 1995
Topic: Should Physician Assisted Suicide or
Active Euthanasia Be Legalized?
Chair: Don Marquis, University of Kansas
Speakers:
"A Model Statute for Physician-Assisted Suicide"
Dan Brock, Brown University
"Refusing Food and Water as an Alternative to Assisted Suicide" or
"Active Euthanasia"
Bernard Gert, Dartmouth College
"Physician-Assisted Suicide: When is a Doctor Obliged to Help?"
Margaret Battin, University of Utah
"The New York Task Force Report on
Physician-Assisted Suicide and Active Euthanasia"
John Arras, University of Virginia
This session is co-sponsored with the
APA Committee on Philosophy and Law
PACIFIC DIVISION SESSION
April, 1996
Topic: Reproductive Issues
Margaret Battin is organizing this session.
CENTRAL DIVISION SESSION
April, 1996
Topic: Revisioning Bioethical Theory:
Feminist Perspectives
Anne Donchin is organizing this session.
EASTERN DIVISION SESSION
December, 1996
Topic: Issues in Managed Care
Leonard Fleck is organizing this session
We hope that you can attend these programs.
The Committee would like to organize sessions at the division meetings that will interest as many APA members as possible. We would like input concerning topics that you would like to see covered in philosophy and medicine sessions. We would also like to know whether you would like more sessions on "traditional" issues in philosophy and medicine or more sessions on what seem to be "cutting edge" issues. On the one hand, "traditional" issues may seem less interesting because those issues have already been well worked over. On the other hand, "cutting edge" issues often lack a history of careful philosophical work. Therefore, it may be difficult to find philosophical speakers (as opposed to journalists) who have a background in those issues.
If you have views about these matters, feel free to contact me. Also, if you have a recent paper in which you defend some unconventional view on some issue in bioethics and if you are interested in appearing on a philosophy and medicine session, let me know and send me the paper. The Committee will consider your suggestion.
Finally, if you have suggestions concerning the Committee that you wish to convey orally, you will find me at both the next Eastern Division and Central Division meetings.
Don Marquis, Chair
APA Committee on Philosophy and Medicine
Department of Philosophy
University of Kansas
Lawrence, KS 66045
Comments, Notes,
Stories and Poems
Clinical Goals and the Concept of Medical Futility
Kenneth Kipnis, Ph.D.
University of Hawaii at Manoa
The materials below are intended as a survey of current thinking regarding questions of medical futility. As will be clear, the definition of futility and the proper application of the concept in medical decision- making are, at this writing, heatedly contested issues. Nonetheless, there are some areas of agreement and a number of steps physicians can take that will reduce or eliminate conflict and misunderstanding.
Problems of Medical Futility
In the common cases, the problems of medical futility are implicated in the clinician's response to a demand for medical treatment that is judged to be nonbeneficial or insufficiently beneficial under the circumstances. The early years of medical ethics evidenced a gradual acknowledgment that, notwithstanding physicians' traditional paternalism (the tendency to impose their judgments about what was best for the patient, much as parents do for children), doctors instead were ethically required to accept informed refusals of recommended treatments. Respect for patient autonomy eventually won the day. But, ironically, the present problem of medical futility is the mirror image of the earlier issue: the patient or surrogate demands that the clinician "Do everything!" But to what ends and at what costs?
1. A 60- year old male in deteriorating health has failed in several alcohol rehabilitation programs. Although he has requested the replacement of a seriously damaged heart valve, he is unlikely to follow the regimen that would be required after surgery. Notwithstanding his inability/unwillingness to cooperate with medical recommendations, the open heart surgery would probably provide him with some small benefit anyway, but much less than is usually thought to justify the surgery.
2. An elderly woman was in persistent vegetative state. The family (and, formerly, the patient) placed a high value on respect for the sanctity of human life. The family insists the patient would have wanted her life prolonged.
3. An Orthodox Jewish patient, in keeping with what he understood to be the implications of his religion, is known to have repeatedly rejected brain death as death. Although there is ample clinical evidence that he is brain dead, there is also ample evidence that, regardless of the damage to his brain, he would have wanted aggressive measures to be continued until his heart finally stopped beating.
4. An 80- year old comatose patient with no expectation of survival to discharge is occupying a bed in an overcrowded ICU when a new patient presents with an excellent prognosis, provided ICU care is made available.
The Meaning of Medical Futility
The literature on futility centers on medical treatment, although similar questions could equally arise (but don't) with respect to prayer and folk remedies. Nor do they arise with respect to requests for inexpensive, nonburdensome medical remedies. A dying patient who requests a vitamin C tablet will not be refused solely for the reason that the tablet can have no beneficial effect. It should be enough that he has asked for it and that it is not much to ask for.
Nor, in general, is it an issue that medical interventions can have benefits that are entirely distinct from their scientifically validated efficacy. The placebo effect is first on this list. And certainly medical rituals can function symbolically, confirming the seriousness of the situation and the social worth of the patient. But when this symbolic function is all there is, the scientific value of the clinician's art has vanished and we are left instead with a high- tech form of shamanism masquerading as modern medicine.
In a related point, it is sometimes said that intervention, however bereft of the clinician's expectation of physiological benefit, can nonetheless occasionally be of psychological value to the patient. But such efforts can feed into denial and edge into quackery and fraud. Physicians distinguish their methods from those of charlatans in virtue of medicine's scientific basis for believing in beneficial physiological effects. The techniques of quacks are ethically identical to those of a physician who accepts that the treatment being administered cannot be expected to produce any beneficial effect apart from psychological ones. And when medical treatment is administered solely for the psychological benefit of the family, the patient tends to drop out of the equation, abandoned, treated not because of medical need but, rather, as a means of furthering the interests of others. This is the very opposite of medicine, a betrayal of sorts.
To be sure, there are still other goods that can flow from "medical treatment" even when the patient cannot be expected to benefit at all. For example, patients can be used as informal clinical research subjects or as "teaching material" with well- founded expectations of social benefit in each instance. Each of these external benefits of the clinical encounter deserves an independent discussion that is beyond the scope of this essay. But in what follows, discussion will be narrowed to the internal benefits of the clinical encounter: those scientifically validated physiological effects of treatment that are intended to translate into a benefit for the patient.
The Hastings Center's Guidelines on the Termination of Life- Sustaining Treatment and the Care of the Dying set out an early position on futility.
In the event that the patient or surrogate requests a treatment that the responsible health care professional regards as clearly futile in achieving its physiological objective and so offering no physiological benefit to the patient, the professional has no obligation to provide it.
The two phrases, "physiological objective" and "physiological benefit to the patient," call for further discussion. For a measure can be futile only with respect to some specified objective or set of objectives. The term is relational, like "taller than." Thus:
•A medical treatment is futile with respect to some clinical goal if there is no reasonable expectation that that treatment will achieve that clinical goal.
•A medical treatment is medically futile (period) if there is no reasonable expectation that it will achieve any clinical goal.
Thus when we talk about "medical futility" we must be prepared to say something about the goals of clinical practice.
The Goals of Clinical Practice
Happily, there is some perceptive literature on clinical goals. Jonsen, Winslade and Siegler provide the following list:
A. Restoration of health.
B. Relief of symptoms (including physical distress and psychological suffering).
C. Restoration of function of maintenance of compromised function.
D. Saving or prolonging life.
E. Education and counseling of patients regarding their condition and its prognosis.
F. Avoiding harm to the patient in the course of care.
G. Enhancement of the patient's dignity and sense of control regarding his or her disease and life.
H. Minimizing the patient's need for current and future medical intervention.
Brock and Buchanan offer the following:
A. The promotion or restoration of opportunity through the prevention or treatment of disability.
B. The extension of life or the prevention of unwanted death.
C. Prevention or palliation of discomfort, pain and suffering.
D. The provision of valuable information about one's health status.
And, with evident indebtedness to those above, I have worked with this list:
A. Providing information relating to one's health status. (What is happening to me? What can be done about it? What can be expected and hoped for?)
B. Preventing or eliminating opportunity- limiting disability.
1. Preventing or delaying death, especially if unwanted and/or untimely.
2. Restoration or promotion of health: preventing disease and reversing, stopping, or slowing its progression.
3. Restoration of function, maintenance of compromised function, slowing loss of function.
4. Minimizing the need for current / future medical care.
C. Preventing or relieving suffering.
But these goals must be qualified by at least four constraints on their pursuit:
A. Do no harm to the patient. Do not administer treatment that is, on balance, harmful to the patient.
B. Do not administer treatment that the patient refuses or would refuse if decisionally capacitated.
C. Do not waste scarce or valuable resources, especially when the life prospects of others are dependant upon their availability.
D. Do not discriminate unjustly against classes of patients.
Problems involving futility:
Going back to the Hastings Center Guidelines, we can now understand the purest case of medical futility as a case in which:
A. Treatment can not produce a physiological effect furthering any clinical goal.
But in actual practice, the pure case may be rare. More common would be cases B through D in which questions arise about probabilities and about whether the physiological effects constitute on balance a benefit to the patient. Sometimes the problems involve low probabilities.
B. Treatment is very unlikely to produce a physiological effect furthering any clinical goal but does have a low probability of doing so.
As the likelihood of patient benefit declines, one is more likely to hear the term "futile" in describing the proposed regimen. Physicians who say "There is still a hope for recovery" may be more comfortable with extremely low probabilities of success than patients and families are.
Sometimes the problem does not involve the likelihood of a physiological effect. Rather:
C. Treatment will produce a physiological effect but it is unclear whether the effect constitutes a benefit to the patient.
In such cases the right questions to ask are:
1. Does treatment further or secure the patient's known values?
2. Does treatment further or secure the patient's best interests?
There is no guarantee that answers will be forthcoming. In a related situation:
D. Treatment can produce several physiological effects, some of which are negative and some of which are positive, but it is unclear whether the negative effects to the patient outweigh the positive effects to the patient.
In all of these cases, the patient, when decisionally capacitated, is going to provide the clinician with the best information about whether the game is worth the candle. It may be that most futility quagmires can be sidestepped by being scrupulously clear and unambiguous about the outcomes that can reasonably be expected and the outcomes that can not. Often the clinical goal of an intervention and the probability of success are misunderstood by the patient or surrogate. Rich descriptions of what "success" looks like and the clinical record in achieving it can promote responsible decision- making. Other things being equal, the call is the patient's. But, characteristically, in clinical discussions of futility other things are not equal. In the background are often serious concerns about the resources that may be required to give the patient a small chance at a highly questionable benefit, regardless of how much that chance may be desired. This problem arises when:
E. Treatment has some likelihood (the smaller the probability, the more futile the treatment) of producing a beneficial effect upon the patient (the smaller the benefit, the more futile the treatment) but only at the cost of a significant negative effect on community resources and, in particular, on those others whose life prospects are dependant upon the availability of those resources.
It is, I believe, important to note that this is not merely the finance officer's economic reality intruding upon the purity and detachment of the clinician's art. In all of the cases that began this essay, clinicians need to be mindful that society has entrusted to them the disposition of a valuable social resource. Given the value of those resources and the clinician's responsibility for their disposition, it is ethically indefensible to promote or even to tolerate waste. So the question of what counts as a wasteful misuse of a scarce and valuable resource and what counts as proper use is very much at the heart of clinical practice, especially among the elderly. Likewise, in at least two of these cases there are questions about possible unjust discrimination. What weight is to be given to the patient's alcoholism in Case 1? And how do our ideas about religious discrimination bear on groups with different ideas about the nature of death and the sacredness of human life? (Lest the case of the Orthodox Jew be seen as too easy, there are people in the Western Pacific who do not acknowledge the death of a family member until many months after we would.) And, while we are at it, what weight should be given to advanced age and to the "timeliness" of a potentially terminal episode?
It is not an accident that futility questions are most likely to arise in high acuity settings, where the costs of treatment can be prodigious and the effects of being shut out when in need, catastrophic. It would be convenient if somehow questions about the allocation of scarce, expensive resources could be resolved on exclusively medical grounds. But this is not to be. On the horizon is a national debate about the cost- effectiveness of treatment modalities. Informed by outcome studies and aggressive cost- containment measures, the end result will be something like a national Oregon list. The "National Health Board," proposed under President Clinton's Health Security Act, was intended to decide questions about which procedures were "necessary and appropriate" and, therefore, guaranteed as a part of a minimum benefits package. There is no question but that, in the future, the costs of procedures and their effectiveness in significantly furthering clinical goals of health care will be accorded increasing weight in medical decision- making. Futile procedures-procedures which have near- zero probabilities of significantly furthering any clinical goal -are merely the limiting case.
Standards for Futility
A great deal can hang on how futility is defined. For if a responsible determination is made that a treatment is futile, the treatment need not be offered, much less administered. There is no entitlement to it regardless of the urgency of the patient's request. A review of some of the literature on futility suggests three different approaches to the setting of standards.
One approach is simply to list the medical conditions warranting a judgment that treatment is futile. A recent issue of a medical newsletter set out the following list for consideration:
Bedfast with metastasized cancer
Child's class C cirrhosis
AIDS with 2 or more PCP episodes
Dementia requiring nursing home care
Coma, 48 hrs
Multiple organ failure with no improvement after 3 days in ICU
Unsuccessful out- of- hospital CPR
It is unlikely that many would ever enthusiastically drink to this list. We don't know what the criteria are for inclusion of a medical condition, nor what treatments would be regarded as futile and which other ones might nonetheless further some clinical goals: the goal of relieving suffering, for example. Nonetheless it is instructive to consider its form. As with the Oregon list, the definition of medical futility might well take shape in a set of clearly defined medical conditions, especially for high cost treatment modalities. The clinical friendliness of this approach is an advantage.
A second approach focuses on the quantitative probability of success. Schneiderman, Jecker, and Jonsen have argued that when, in the last 100 cases, a medical treatment has been useless, clinicians should regard that treatment as futile. "Only when empirically observed . . . outcomes rise to a level higher than that expected by any placebo effect, can a specific therapy be considered to be "possibly helpful" in rare or occasional cases. . . ."
A third approach seeks to provide a qualitative definition of futility in terms of some minimal threshold of well- being associated with the outcome. Absent an expectation of an outcome above the threshold, medical treatment would be deemed futile. For Schneiderman, Jecker and Jonsen, the minimum benefit index would require the preservation of the patient's ability to achieve at least some life goal separate from preoccupation with medical treatment. Robert Truog sets the benefit threshold to be survival to hospital discharge with consciousness intact, even if long term survival is not expected.
With the right data, it would be possible to piece together a standard for futility that incorporates all three approaches. Given a treatment modality, there would have to be some threshold level of well- being that could be met as a possible outcome of that treatment. This captures the insight of the third approach. There would have to be some specified threshold probability level assigned to the likelihood of that outcome. This captures the insight of the second approach. And finally, drawing upon the standards of the other two approaches and the results of outcome studies on various procedures, lists of specific clinical findings could be developed that would routinely warrant that the standard for the futility of that treatment had been met. For example, when out- of- hospital CPR has been unsuccessful there is less than a 1% chance that the patient will survive to discharge with consciousness intact. Given certain agreed- upon standards, transfer to intensive care could be ruled out in the emergency room for these patients, a waste of an expensive resource.
Who Defines Futility?
If there is any clear consensus in the literature on medical futility, it is to be found in the often repeated maxim that physicians should not practice medical economics at the bedside. In the pure case of futility, when none of the available treatments can produce any potentially beneficial physiological effect, the physician's judgment will certainly suffice. But when a comparative judgment is called for, medical expertise alone is not enough to warrant that the potential benefit is too unlikely and too small to justify allocation of significant social resources. Were the medical treatment free or underwritten wholly by private funds with no burden or scarcity flowing to others, perhaps patient preference could carry great weight. But within the fixed- budget community systems that are the future of health care, there is a social interest in avoiding waste. Accordingly the allocation decision cannot belong exclusively to the patient. The issues are properly raised at the level of social policy.
In a way, the problem of defining futility is similar to the social task of defining death. Certainly when a patient is known to have died, he or she loses entitlement to health care. Medically, few interventions could be more futile than treating a corpse. And yet, as the case of the Orthodox Jewish patient shows, social agreement on the physiological indicia and the clinical determination of death may be hard to come by. As with defining death, it may be that we need to pursue a similar consensus on the definition of non- costworthy care.
The Hastings Center Guidelines also speak to the question of limiting access to non- costworthy treatment modalities:
If explicit and ethical policies are developed by means of procedures that are open, informed, and fair, health care providers might be justified in limiting their treatments to patients in accordance with such policies. This would be in keeping with the long- standing concern of the health care professions with issues of justice and societal well- being, as well as with patient autonomy and well- being.
Though medicine, legal philosophy and ethics have a great deal to contribute to the debate, in the end the community will have to decide on its standards for futility and costworthiness. The questions are difficult and there is a serious danger of unjust discrimination, both in the formulation of policy and in clinical implementation. But, in our collective engagement with issues like these, we must summon our capacity for wisdom as we work to define the quality of our social order and ourselves.
Waiting for the Millenium
Just as the adoption of "brain death" signaled the social acceptance of a medically determinate point at which further treatment was no longer required, so the current social debate over futility may eventually provide physicians and the communities they serve with additional standards for withdrawing and withholding treatment. In the meantime, physicians and other health care professionals will have to continue to muddle through, dealing as best they can with patients and families who demand treatment in ways that physicians judge to be unwise. Nonetheless, there are some steps physicians can take that in most cases will assist in resolving conflicts.
Above all are strategies that rely upon informed consent. It is axiomatic that, in securing informed consent, physicians must inform decision- makers about the patient's condition, the treatment options (including no treatment), and the advantages and disadvantages of each option (including no treatment). In the first place, options that promise no benefit to the patient need not be offered as options. The Hippocratic Oath mandates that whatever physicians do must be intended to benefit the patient. Likewise, "treatments" that impose greater risks and burdens than benefits need not be offered. The maxim, "Above all do no harm," would appear to prohibit such treatment.
Especially when relatives and friends are involved in decision- making, efforts should be made to be scrupulously clear about what is entailed by a decision to treat. In fairness to the patient, the pain, the discomfort, and the indignity should be characterized realistically. Bearing in mind the discussion of clinical goals above, physicians need to be equally clear about what benefits, if any, might flow from the treatment under consideration; what the probability of success is ("Out of 100 similar cases, how many might turn out well?"); and, lastly, what, exactly, does "success" look like? This is a circumstance in which the effort to color the truth out of a misguided solicitude can reap the whirlwind. Where the patient has become decisionally incapacitated, relatives and friends can be assembled in a case conference and reminded that the task at hand is to determine how the patient would have made this decision. Too often relatives worry instead about how to be a good daughter or husband, forgetting what is best for the patient. The question of who should make the decision can usually be set aside: If everyone can agree on what the right decision is, there is no need to settle the issue of who should decide. Only after thoroughly reviewing the patient's present condition, the treatment options, and the likely and possible outcomes (in that order), should discussion be turned to what is known about the patient's values, goals, purposes, and projects. Where this is done well, the patient's values, personality, and lifestyle choices are given vivid expression, almost as if he or she were present in the room and taking responsibility for the choice. In the end, discussion can have the character of a respectful collective acknowledgement of the patient's deepest values and concerns and their implications for treatment. It is not a decision by fiat.
Finally, it is useful to bear in mind the truism that, in the end, death is not a medical problem. It is a milestone for the patient and those who care about the patient. Accordingly, friends and family characteristically require ritual acknowledgement of the importance of the person and the occasion. It is unfortunate that health care institutions are too often predisposed to hear a demand for action as a demand for medical treatment. What friends and family need could be something else: intensive spiritual care, intensive ministrations by the social work staff or intensive counseling. That nothing medical can be done does not entail that nothing can be done. This element of the clinical management of patients for whom medical care is futile may be the most important one of all.
Bibliography of Works Cited
Buchanan, A.E., Brock, D.W., Deciding for Others: The Ethics of Surrogate Decision Making. Cambridge: Cambridge University Press, 1989.
Hastings Center, Guidelines on the Termination of Life- Sustaining Treatment and the Care of the Dying. Bloomington: Indiana University Press, 1987.
Jonsen, A.R., Siegler, M., Winslade, W.J., Clinical Ethics 2nd ed. New York: Macmillan, 1986.
Schneiderman, L.J., Jecker, N.S., Jonsen, A.R., Medical futility: its meaning and ethical implications. Ann Intern Med 1990; 112:949.
Truog, R.D., Triage in the ICU. Hastings Center Report 22, no. 2 (1990): 13- 17.
"The first kindness is competency"
-Ed Pellegrino
After all, it comes down to this:
doctor and patient
door closes, curtain drawn.
Here the ancient art begins;
history unfolds in
spoken word,
ritual touch,
poultice and purge,
a foretaste
of the blade itself.
What have we taught them?
What shall we teach them?
This and nothing less:
The gentle gaze,
the discerning heart,
the healing spirit,
the love which begins
with science and ends
in this room, for all our sakes.
David Schiedermayer, M.D.
Medical College of Wisconsin
Extended Donor Pool Kidneys:
Issues Of Informed Consent And Access
Mary Panico, R.N.; Maritza Solomon, R.N.;
Lewis Burrows, M.D.
The Mount Sinai Medical Center, New York
Department Of Renal Transplant
Technical and scientific developments have increased the advantages of transplantation for patients with end-stage kidney diseases. The resulting increased demand for kidneys and the plateau of the number of available organs, leaves transplant programs struggling to increase the donor pool. In so doing, we have extended the donor pool beyond the margins of conservatism. We are now considering using previously rejected classes of organs. Suspending some of the rejection criteria that have been in place would extend the organ pool. But using organs from an extended donor pool may slightly increase the risk of complications, and so, may put patients at some additional risk. An example of organs from this extended organ pool are kidneys from Hepatitis C virus (HCV) donors which may or may not transmit the disease to the recipient and transmission may not be clinically significant for years after transplantation if it does occur. En-bloc pediatric kidneys, which have a higher incidence of thrombosis and technical problems, yet yield an 83% one year graft survival rate at our institution, are another example. Also, using organs from hypertensive donors whose kidneys may appear adequate for transplantation on biopsy, with insults such as cold ischemic time and rejection, may offer shorter than usual graft survival. Each transplant using an organ from these classes of extended donor pool kidneys (Table 1) brings a slightly higher risk of complications but, also, the assurance of a sooner transplant. We are constantly balancing the risk-benefit quotient to get the best outcome. We are considering the moral principles of beneficence and nonmaleficence in order to improve the health care of our renal transplant patients by trying to make it possible for transplants to occur sooner and to provide them to as many potential recipients as possible.
The short fall of the supply of organs makes a powerful argument for using extended pool kidneys. According to the United Network for Organ Sharing (UNOS) Scientific Registry, the need for solid organs for transplant has grown 115% over the last 5 years. As of May 1994, 25,737 men, women and children were on the UNOS kidney waiting list. Approximately 8,200 cadaveric kidney transplants were performed in 1994. Along with these findings, the total number of deaths reported of people waiting for a kidney transplant in 1993 was 1,275. (1) The gulf between the available kidneys and the need for organs is quite apparent. Along with these findings that demonstrate the inadequacy of the supply of kidneys, the adjusted one year survival probabilities for dialysis patients and kidney transplant recipients is 76% compared to 92%, respectively (refer to graph #1). These statistics provide another strong argument for supporting the use of extended donor pool kidneys. Not only do they impact on the quality of life for the end stage renal disease patient, but using extended pool organs can be a life saving treatment.
Our program's decision to utilize these extended donor pool organs raises several moral questions. Should complete disclosure of the program's policy be made at the initial patient evaluation? Should the availability of extended pool organs be explained to all potential recipients? Or should the availability of extended pool organs be explained only to those who the health care team believes will gain a risk-benefit advantage by accepting one? Do we make decisions without allowing for the autonomous choices of our patients? Do we identify what must be communicated by the rules of informed consent, informed refusal, or truth telling? Do our patients get to rule themselves free from the controlling interference of nurturing physicians and clinicians? Often our patients fail to govern themselves well because of illness, ignorance, or the coercion of a foreseeable extended period on dialysis. Do we persuade in the name of knowing what is best for the patient without disclosing all risks?
As our list for categories of extended donor pool kidneys grows, we must devise a standard for informed consent. We must be introspective and self-scrutizing of our paternalistic tendencies. We must be careful with our language to prevent informational manipulation and to insure autonomous decision-making. We must be aware that those patients who are generally less well-informed receive adequate information about the progressive developments in this field so that all patients have equal access to the option of receiving extended donor pool kidneys.
We propose that at the time of the pre-evaluation interview, a standardized clear, concise, and comprehensive explanation of the kinds of kidneys that are used for transplant be presented to all potential patients. This outline should include benefits and risks, waiting times, and statistical outcomes. Information about organs from high risk donors, not traditionally used in kidney transplantation, should be presented with objective information about shortening the waiting time for the recipient. Finally, written criteria used by the specific transplant center in accepting kidney donors should be given to patients prior to listing them with the specific program.
In conclusion, we must give all the truth, with equal emphasis on the negative as well as the positive, when informing patients of the health care option of using extended pool organs. The information must be disseminated throughout the potential renal recipient community to ensure equal access. This must be done with a focus on effective communication to achieve understanding and so that patients can express true autonomy in their choice of health care.
Table 1
Extended Donor Pool
1. Hepatitis C virus kidneys
2. HBcAb kidneys
3. Hypertensive cadaveric kidneys
4. History of drug abuse
5. Brain tumors with low incidence of metastasis
6. Enbloc kidneys
7. Split small kidneys
8. > 60 year old donor
9. Prolonged cold ischemic time
10. Donor with history of bacteremia during brain death
event
11. Anatomical (i.e., turn capsules, short veins, torn
vessels)
12. High risk donor due to social history
13. VDRL +
14. Donors <1 year of age
15. Donors with marginal creatinine
16. Kidney from donor with agonal event during brain death
Graph 1
References
Arnason, Wayne B. Directed donation: The relevance of race. Hastings Center Report. 1991 Nov. - Dec., 21(6): 13-19.
Caplan, Arthur L. If I were a rich man could I buy a pancreas? Problems in the policies and criteria used to allocate organs for transplantation in the U.S. & other essays on the ethics of health care. Bloomington: Indiana University Press: 1992.
Kleinman, Irwin; Lowy, Frederick H. Ethical considerations in living organ donation and a new approach on advance-directive organ registry. Archives of Internal Medicine. 1992 July; 152(7): 1484-1488.
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Strong Medicine
You call me honey
and thank the Lord for me
so let me tell you
the final diagnosis:
you are simply one amazing lady
one fast healer
a sole survivor
one who
as we doctors say
is doing better than expected.
Ha!
It's more than that.
We need to bottle
what you have and give it to every patient
all us doctors and nurses
should take some too
some of us
are so far gone
we need injections.
I feel better just touching you.
When you have a skin ulcer
you rub kerosene on it
When you have a stomach ulcer
you swallow kerosene
I am hesitant to prescribe
fancy pills
when you are getting better
drinking jet fuel
but I gotta get in on this cure
gotta keep you in my life
Just goes to prove
with spirit, will, and genes like yours
maybe some digoxin and lasix
honey a person can outlive
all the odds
survive atrial fibrillation
and heart failure
blow away all the statistics
My only advice I guess is to
refrain from smoking for at least an hour
after you drink kerosene . . .
David Schiedermayer, M.D.
Medical College of Wisconsin
A Man by Nothing Is So Well
Betrayed as by His Manners*
Felicia Ackerman
Brown University
Julie often thought that the second-worst thing about an unhappy life was that you couldn't talk about it. It annoyed people; she wasn't sure why. Maybe it had to do with the idea that you made your own happiness, as if failure to do so were a character flaw.
As she walked into her building now, she could feel the shakiness coming on and knew she wouldn't make it up the stairs. There were no Life Savers in her handbag. No instant glucose-she had never forgotten it before. And there was no one else in that hall but the disagreeable-looking man who lived below her, Nick Pinault. He was unlocking his mailbox and muttering to himself, looking irritable and exhausted.
"Do you have any orange juice or candy?" Julie asked.
He gave her a startled glance, but she was hardly embarrassed-just another example of that wonderful mature perspective illness is supposed to bring you, she thought dizzily. In the dim light, his face seemed blurred and distorted, as if it were underwater.
"Diabetic," she managed to get out, "I need . . ."
"Yeah." He pulled her into his apartment, kicked the door shut behind him, propelled her over to a sofa with two springs protruding like snakes about to strike, and left the room. In a moment, he returned with a grimy box of sugar and a spoon. At least he knows what to do, was her last coherent thought as she spooned sugar into her mouth.
Ten minutes later, she became aware that she was sitting in a dusty, curtainless room with piles of books and journals everywhere: on the floor, on the chairs, even stacked precariously on a windowsill. Near her were issues of Car and Driver and American Historical Review. Nick was sitting at a rickety table, and unpleasant popping sounds, like the breaking of small bones, were coming from his direction.
"Thanks for the sugar," Julie said, standing up. "I could say I'm sorry I had to bother you, but my diabetes bothers me a lot more, if you see what I mean."
Nick grunted, rubbing his eyes with the backs of his hands. He was a large man of around forty, with a heavy face and coarse black hair. Julie thought he looked like a reject for the part of an aging tough guy in a movie, where even aging toughs had to be attractive. "There was this diabetic kid in my high school, and he always apologized for passing out. I couldn't stand the twerp. Sick people ought to resent it," he said, cracking a knuckle with another ugly little pop.
Julie smiled. "Haven't you heard that even if you're dying of cancer nowadays, anger is supposed to be only a stage?"
"Yeah, and if you get turned down for tenure at a crummy state college like I did, that's a big opportunity for a midlife career change."
She started giggling and found it surprisingly hard to stop. "I have a Ph.D. in philosophy from Stanford, and I never got a teaching job at all," she said.
"Yeah? Sit back down if you want. I went to Berkeley in history. They don't give me the time of day there now. Ever wish all the hotshots would go drown in the Pacific?"
Julie sat down, crossed her legs, and put her hands on her knee. Nick was regarding her expectantly, cracking several knuckles in succession. No one else she knew cracked his knuckles. It looked even worse than it sounded, as though Nick were slowly pulling his fingers out of their sockets. She looked away.
"One of them did drown," she said. "She was an assistant professor at Stanford when I was on the job market. I told her I was only getting interviews at third-rate schools with ferocious teaching loads. She said I should be glad to be getting any interviews at all, with the market so bad, and that I was too concerned with prestige. When she drowned in a canoeing accident," Julie took a deep breath, "well, I know any good psychology disciple would say it was normal for me to feel ambivalent, only I wasn't ambivalent; I was. . . ."
"Thrilled."
"That's right." Julie closed her eyes and could see the woman's serene, lovely face. She'd had glossy red hair and long-lashed green eyes and everything had come to her as readily as a Christmas present, and now she was dead. And Julie was alive. "I broke my diet to celebrate," Julie said, opening her eyes. "I never told anyone this before."
"Why the hell not?"
"Well, it sounds pretty awful, doesn't it?"
"No," said Nick.
• • •
"I met a sort of interesting man yesterday," Julie told Donna in the bakery the next morning.
Donna glanced up from a tray of iced cinnamon buns. She was a comfortable-looking woman, overweight but attractive, with rosy cheeks, a round face and an almost perfect widow's peak. "What do you want to do first, tell me about him or frost some chocolate cakes in the kitchen?" she asked.
"Oh, he wasn't that interesting," Julie said. She walked into the kitchen and inhaled deeply. The air was rich with chocolate. Feed a blindfolded man an apple while having him smell a pear and he'll think he's eating a pear, she had once read, and she'd tried sniffing chocolate while eating cottage cheese. It hadn't worked. Still, frosting chocolate cakes was better than having them out of her life entirely. She made a large bowl of mocha buttercream and swirled it slowly over the cakes, hardly raising her eyes until Donna came in.
"So let's hear about this fascinating man," Donna said, dipping a spoon into the frosting bowl.
"He looks like a slob, and he acts like a slob, and he hates the world."
"Sounds irresistible." Donna was licking the spoon daintily.
"He's refreshing-no, that's a stupid word." It was the kind of word diet book writers used in order to make something sound better than it tasted. "Have a refreshing piece of fruit for dessert," they liked to say. They never called ice cream sodas refreshing, "He's just not like the people at Stanford," Julie went on. "He eats junk food. His idea of outdoor exercise is driving, and he has a red Corvette. He resents academic big shots as much as I do."
"I thought you were getting over that."
Julie didn't answer. She reached for the last of the cakes.
"It doesn't sound like he's going to be good for you," Donna said.
"So I won't keep him in my medicine chest," said Julie. "Do you want me to work late today?"
"Could you?"
"No problem." Julie was swirling the frosting into little peaks. "This is practically my favorite place in Palo Alto."
• • •
Over the following month. Julie fell into the habit of going to Nick's apartment several times a week after her stint at the bakery. He was almost always there, reading, watching television, or working on one of his history papers, which seemed about as likely to be read as bottled messages sent out to sea. His virulence about journal editors was endless: "all those academic liberals who have academic liberal ideas about women and blacks and saving the whales, and who won't give your paper the time of day unless you've got a hotshot job." He was the only person she knew who didn't think resentment was a vice.
"That s the real taboo subject, you know?" he said once as they were driving to Modesto in the Corvette. "Not sex or death or any of that trendy junk it's practically taboo not to talk about, these days. What you really can't say is that you hate and resent people who have what you want and don't deserve it any more than you do."
"You can't even say you're unhappy," said Julie. "It's supposed to be your own fault for having the wrong attitude. Maybe I wouldn't hate the people on top if they weren't so smug."
Nick said of course people on top were smug, and if they weren't he'd hate them anyway. Julie began to laugh.
"What the hell's so funny?"
"Nothing. It's just that I couldn't have this conversation with anyone else." She gazed out the window at the parched fields, faded and dusty as Nick's living room. "You know, I'm not crazy about healthy people, either," she said.
He nodded. "Want to go to Stockton Saturday?"
Julie would have preferred to drive along the coast, but she realized there was no point in mentioning it. Nick despised the ocean. In his mind it was bound up with the glossy side of California and the people he loathed. "Okay," she said. "It'll be my turn to drive."
"I drive better." He was enormously proud of his driving skills, which included the ability to take sharp curves at sixty miles an hour, as he often demonstrated on deserted roads.
"We agreed we'd take turns," Julie said.
"I didn't agree. Your driving stinks. Like your car."
"Well, I can't afford a Corvette," Julie said, not adding that she considered it a car for nineteen-year-olds who played football and weren't very bright.
"So go into the civil service."
"I don't want a job like yours." He was a demographics analyst, a stupid job, he said, but the pay wasn't bad. Julie leaned against the seat and could feel the car rushing forward. She had to admit it gave an exciting ride. But she liked any kind of car, any kind of driving. "The philosophy job I came closest to getting was at a former teachers' college where the chairman's favorite word was 'community' and he wanted to know all about my personal values. That was his second-favorite word, 'values,' " she said.
"When they start talking about community, you can kiss your privacy good-bye," said Nick.
"Exactly, I would have taken it, though. I would have taken anything." She glanced at her watch. "It's time for my shot. You'll have to stop for a minute."
Nick grunted, pulling over to the breakdown lane. Julie hiked up her skirt and gave herself the injection in the thigh, something she would not have done in front of anyone else.
"That hurt?" Nick asked when she winced as the needle went in. She did not reply. He asked again.
Julie put the used syringe away, took out an empty one, and jabbed it into Nick's bare forearm.
"Ow! What the hell?" He jerked his arm away.
"Does that answer your question?"
"Jesus. You do that every day?"
"I do it three times a day and in more sensitive places than the forearm. It doesn't always hurt that much, though. It's partly a matter of luck."
"Christ," Nick muttered, starting the car. He cut ahead of a blue Toyota with a University of California sticker. The driver gave him a venomous look. "You can drive to Stockton," Nick said to Julie.
"I . . . can't believe I stuck you," Julie said. Her face was throbbing. "Nick?"
He shrugged, rubbing his puffy red eyes.
• • •
She met Warren three weeks later. It was at the first party she had been invited to all year; a friend from graduate school was having a housewarming. Standing in a living room with the color scheme of a chocolate cream pie (beige carpet, rich brown furniture, white walls, lampshades and ceiling), Julie wondered whether she had forgotten how to talk with the kind of people she used to know. Then a woman made a remark about her sister's obsession with food.
"An obsession is a strong interest someone disapproves of," Julie said. It was the sort of thing she said when she hoped to be noticed.
"That's great. I'll have to remember it next time someone starts in about my smoking," said a man's voice behind her. She turned around.
Her first thought was that he was too good-looking. Good-looking people rarely bothered with her. He had ruddy skin, regular features and large blue eyes. Smoke from his cigarette wafted in her direction as unerringly as a cat heading for the most allergic person in a room. She fanned with her hand.
"I admire the moral courage of people who smoke, nowadays," she said. "I'd just rather not have their moral courage go up my nose, if you see what I mean."
The man smiled, showing reassuringly uneven teeth. He lowered his cigarette and introduced himself.
His name was Warren Hendrickson. He smoked because he liked it. He taught music history at Stanford and he liked that, too. Before Stanford, he had taught at the University of California at Santa Cruz. He had not liked that at all. The school was a holdover from the sixties, with students who expected academic credit for understanding themselves.
"And a faculty whose favorite word was 'community,' I bet," Julie said.
He grimaced and rolled his eyes.
"When they start talking about community, you can kiss your privacy good-bye," Julie said.
• • •
"I met someone nice at that party, after all," she told Donna the following morning.
Donna was nibbling on some gingerbread. "Nicer than Nick, I hope."
"Well, naturally," Julie said. "Being nice is hardly Nick's strong point."
Donna turned her attention to a thin woman who wanted detailed descriptions of every cake in the display case. Julie rested her elbows on the counter and beamed. She liked hearing the descriptions. She liked everything today.
"He's like Nick after a makeover," she continued as soon as the woman left. "He's just as interesting to talk to, but he isn't in a permanent bad mood and he doesn't look and act like a lout. Nick acts as if being civilized is against his principles or something."
"Everything you say about Nick makes him sound awfully immature."
Julie gazed across the room at the framed photograph of Donna's little girl. "Ever notice how people who get sentimental about kids are the ones who are always calling stuff they don't like 'immature'?" Nick had once said.
I ought to stick up for him, Julie thought, but two teenagers walked into the bakery before she could decide what to say.
• • •
The next months were the best Julie had ever known. She saw Warren every weekend. Early Saturday evening, she would drive to his San Francisco duplex and sit in the kitchen, talking with him and playing with his cat while he prepared dinner. She always brought him something from the bakery. She enjoyed watching him eat dessert.
Once she arrived early and heard music inside. It was a violin solo, elegant and precise, making her think of ladies and gentlemen in powered wigs. She rang the bell and the music stopped.
"What was that record you had on?" she asked when she was seated in the kitchen with the cat in her lap and a newspaper clipping on the table in front of her. "More diabetics switching to insulin infusion pump," was the headline.
He was standing at the stove. She could not see his face. "That wasn't a record. It was me," he said.
"It was? You sounded like a concert violinist."
He had tried to be, Warren said, coming to sit beside her in one of the oak-and-rattan chairs that were less comfortable than they looked. He had trained for years. Finally he'd given up and gone to graduate school in musicology.
His voice was even. She stared at him. "Didn't you mind?
"Yes." A muscle twitched at his temple.
"But what about now?" Julie hesitated. "Don't you, uh, resent the people who actually got to be concert violinists and aren't any better than you are? Don't you ever, even for a minute, wish they'd all go drown in the Pacific?"
"What good would that do?" He smiled with a corner of his mouth. "I'm not like your friend Nick."
"You're . . . not like me, either," she said, and told him about the Stanford woman who had drowned. As she talked, Julie kept her eyes on the cat, now sleeping in a circle in her lap. "And I'm still glad she drowned," she finished, rubbing the cat's ears gently. "It wasn't just an immediate reaction. Do you think that's awful?"
Warren lit a cigarette and held it away from her. "You didn't kill her, did you?"
"What?" It came out almost squeaky.
"Didn't I ever tell you about the feminist fantasy group at Santa Cruz? Some women students decided they had to stop having reactionary daydreams about love and marriage; so they set out to re-educate themselves to have proper feminist fantasies. They kept journals of their daydreams and made progress reports to the group." He blew three smoke rings, not in her direction.
She giggled. "A Girl Scout is pure in thought, word and deed." Warren burst out laughing, making her realize how seldom Nick laughed.
The telephone began ringing, and Warren reached to answer it. "Hello?" He blew another smoke ring. "What number do you want? . . . That's the right number, but there's no Roger Gunderson here." He stubbed out his cigarette. "No, I've had it for two years. Are you calling San Francisco?" He thumbed through the telephone directory. "Well, he's not in the phone book. . . . That's okay."
Julie was watching him mistily, her vision momentarily blurred. He's so nice, she was thinking, nice to everyone. Whether she entirely liked that, she wasn't sure. Maybe each person had a limited supply of niceness; what a waste to use up any on strangers. But this seemed unlikely of Warren. She glanced at the clipping he had saved for her, and felt her spirits rise, although her own experience with the pump had given her continual insulin reactions, and the bulky apparatus bobbing below her waist had made her feel like a kangaroo.
"Anyway," Warren said as he hung up the phone and her vision cleared, "so long as you don't go around killing people, why shouldn't you be glad they're dead if you want?"
"You have to understand," Julie said. "I always thought anyone who knew what I was really like and how I really felt about people like that woman who drowned would think I was dreadful. And then I met Nick, who's the same way, and I was so relieved to have someone I could talk to." She shifted her legs. The cat was so heavy it had made them fall asleep. "Do you remember when I said that when people start talking about community, you can kiss your privacy good-bye?"
"Of course." He touched her cheek. "That was the kind of thing that attracted me in the first place."
"Well," said Julie, "I got that one from Nick. It was his remark, and I used it to attract you, and you're someone he hates."
"But he's never even met me." Warren got up and took the casserole out of the oven. "Why does he hate me? Because of you?"
"Of course not," said Julie. "What have I been telling you? Nick isn't jealous that way. It's just that he'd hate anyone, anyone who had tenure at a good school. No matter how nice that person was, even if he was nothing like that woman who drowned, Nick would hate him."
"Amazing," Warren said and for a moment, Nick's viewpoint did strike Julie as amazing. She felt disoriented as if the room had suddenly tilted, but before she could decide, whether she liked the feeling, it was gone.
• • •
"So you're moving in with that hotshot," Nick said a month later, leaning forward and cracking all his knuckles against one another with a particularly loud and disagreeable pop. "Where'd you say he lives, Frisco?"
No, I said San Francisco. "Yes," said Julie. She was sitting between the protruding springs of Nick's sofa.
"So you still have to come to Palo Alto for the bakery. You could come see me afterwards." He rubbed his eyes and regarded her belligerently. "What's the matter, you think he'd be jealous? You know I don't care about having sex."
"I know," said Julie, who had slept with Nick once, five days before meeting Warren. It had been her idea (she'd had no one to sleep with in years), and he had done it as quickly and unceremoniously as if he had never heard about satisfying his partner. Afterwards, he told her sex didn't interest him much, especially since it had become something there was a right and a wrong way of doing. He'd rather talk. Well, so would Warren, but Warren enjoyed sex too. She smiled dreamily, then forced her mind back to Nick. "Of course, I still want to see you. I'll come over as often as I can."
"You mean as often as you want to, which won't be much." Nick was rubbing his eyes again. They looked swollen, the way they invariably did, as if he never got enough sleep. But he slept ten hours a night, he had told her. He liked sleeping. "Soon as he gets a girl who's prettier and slicker, that hotshot's going to dump you. You can't count on people like that," he said.
"You don't know anything about him." There was no point in mentioning that Warren seemed uninterested in women's appearances. He didn't even try to tell Julie she was beautiful to him. He said that would be as silly as saying she was rich to him; if you really cared for someone, her looks didn't matter.
"He'll dump you so fast you won't know what hit you, and when he does, don't think you'll get the time of day here." Nick hit the top of the desk with his fist, Several sheets of lined yellow paper drifted to the floor, joining the books, dog-eared journals and empty potato-chip bags that would probably stay in the apartment as long as he did.
Julie looked at the floor, then at him. "Nick," she said, "why don't you do something about this place? Why don't you, uh, do something about yourself?"
"You see? You're getting no good already." Nick picked up two journals and hurled them to the floor. "Now get the hell out of here, you little creep. I never want to see you again."
"I didn't mean . . ."
"Get out."
"All right," said Julie and walked out.
• • •
One day nearly two months later, Julie left the bakery early. The afternoon stretched in front of her like an easy obstacle course: buy a copy of the latest P.D. James mystery, get vegetables for the stew she and Warren would be having for dinner, go for her eye examination. The ophthalmologist, a small round man with a swooping mustache like a nineteenth-century villain's, would subject her to complicated procedures that included scrutinizing her eyes with a glass that reflected her retinal vessels before her like tiny, twisted worms. Not too bad, he always said, not bad for such long-standing diabetes, and wasn't she lucky? Julie always replied that lucky people didn't get diabetes in the first place. But this time she just might say yes. She turned on the car radio to a rock music station and pressed her foot on the accelerator, thinking how Nick's driving had ruined ordinary speeds for her. They seemed almost unnatural now, like driving in slow motion.
The bookstore and the supermarket both were crowded, and she reached the eye doctor's office barely in time for her appointment. He had shaved off his mustache, but the change seemed surprisingly trivial. His face wasn't transformed. It was just minus the mustache. As the testing progressed and the familiar masses of vessels appeared before her, Julie thought about mustaches and beards. Warren and Nick had neither, Nick because he associated them, beards especially, with in-groupy academic people, Warren because . . . he just didn't. He wouldn't consider beards and mustaches worth having opinions about. And they weren't, were they? Julie swallowed a yawn. It was oddly tiring to sit still and stare straight ahead. Her thoughts seemed flattened and slowed. Finally the doctor switched off his tiny flashlight and lowered the glass. "Well," Julie said, "are you going to tell me how lucky I am?"
"I'm afraid not," said the doctor. "I'm sorry."
• • •
Fifteen minutes later, fleeing the doctor's office as if it had become radioactive, Julie collided with a man on the sidewalk. One of his shopping bags tore, spilling packages of frozen food onto the pavement, but she did not stop to help. The man wore glasses, didn't he? That meant he could see. He looked about twenty-five and aggressively healthy.
Julie dashed into her car, drove as viciously as she had ever known Nick to, and it was not until she saw his inflamed eyes in the pale light of her old building's hallway that she realized she had come to the wrong place.
"I told you not to come here," he said harshly.
"Oh, did you? Since when do you own the building? I still have an apartment here, in case you've forgotten. I . . . came to pick up some things."
"That hotshot throw you out?"
His face, surly and dispirited as ever, made her want to scream. "Who do you think I am, you?" she screamed. "Some jerk people only bother with as long as there's no one else around? Warren would never throw me out." Nick turned to go out; he was holding a large, thin book under his arm. "Don't worry, I've got a consolation for you!" Julie yelled after him. "Something you can gloat over. I'm going blind."
"What?" He turned around.
"Don't you understand English? I said I'm going blind. It can happen to diabetics, even obedient ones like me, who break their diets maybe once a year and shoot up three times a day; that's over twenty thousand injections I've had in my life. . . ."
Soon she was in his apartment, seated between the protruding springs. He sat in the desk chair turned around to face her. Nothing in the room had altered. Even the stains on the floor were familiar.
"Well, obviously, I'm not blind yet," she was saying. "Don't you know anything? My vision's even still good enough for me to drive; how do you think I got here? It's. . ." But she couldn't bear to repeat the medical details; she had hardly been able to bear hearing them. "Just take my word for it," she said.
"Jesus." He was cracking his knuckles slowly, one by one. It seemed almost magically repellent.
"What a brilliant comment. No wonder you're such a professional success." He looked away. "Oh, what's the matter, am I upsetting you?" she said.
"You're going blind; you're not supposed to act like Rebecca of Sunnybrook Farm."
"I'm-" Julie glanced at the book he had been carrying in the hall. "Beginner's Flight Instruction Manual," was on the cover. "Are you learning to fly?" she asked.
"Yeah." He cracked another knuckle.
"Is that supposed to make you some kind of big adventurer? You? You've barely got the energy to get up in the morning!"
"Christ, anyone can fly a plane."
"Including people who can't see? Even a diabetic who isn't blind can't fly a plane. You can't get a pilot's license if you take insulin. You wouldn't understand, but for the first time in my life I was happy. I was so happy with Warren. You wouldn't know anything about that kind of thing. Oh, why couldn't this have happened to you instead? I've been through enough with twenty years of diabetes, and you've never really been sick, and . . ." She was crying now, harder than she had ever cried before, harder than she had realized it was possible to cry.
"Julie," said Nick, "you want to go for a drive? You can drive. You can drive the Corvette, if you want."
She got up abruptly, and Nick rose, too, as if they were about to leave together. "I wouldn't be caught dead driving your stupid Corvette!" she shrieked, "You look like an idiot in it, do you know that? People probably split their sides laughing at this middle-aged lout trying to drive a flashy car as if he were some sharp teenager. And that's all you'll ever be, a dumb lout. You'll never have another teaching job, do you know that?"
"Yeah." Nick sat down again, slouched, and stared at the floor.
"And no journal's ever going to publish any of those pathetic papers you keep writing, do you know that?"
"Yeah, Julie, I know that." His voice was dull and thick, as if he were talking in his sleep.
Julie sat back down between the springs. "And no one's ever going to like you or want to spend time with you, and you'll spend the rest of your life by yourself in this miserable room, do you know that, too?"
He didn't answer.
"What's the matter," Julie said, "am I making you feel bad?"
He shrugged.
"Well, it's not as bad as going blind, is it? And it's about time someone told you what a complete and permanent loser you are, and I like telling you. I like it, do you understand, and I'm going blind and you're not; so you can just put up with it. Or maybe you think I'm being unfair. Unfair?" She began laughing wildly.
"It's okay," Nick said. "It's like income taxes. Evens things up a little."
"Exactly," said Julie. "So now I'm going back to Warren. He doesn't know yet and I'm going to tell him, but you can be sure I won't treat him like this. I think too much of him. And anyway, I've gotten it out of my system on you. On you!" she flung out again and nearly toppled over when she got up to leave.
• • •
Driving home to Warren, she felt guilty and exhausted. She longed to have him hold her and say he would make it all up to her. At the same time, she could hardly face telling him. It seemed like torturous, interminable labor, the whole account her mind and mouth would have to slog through before she could be comforted. Maybe I won't do it today, she said to herself as she swung off the main highway, but then, just as she had known she would, she told him as soon as she walked into the house.
"Warren, I'm going blind."
"What?"
She repeated it. For a long while, he was just the way she wanted. Then he began talking about seeing-eye dogs and cassettes and how blind people could do almost anything.
Except see. Julie pulled away for him. "Warren," she said, "I do not want to adjust to this."
"Adjust's a disgusting word, but in the long run, what else can you do?"
"I don't know, I'm so tired." She leaned back against him. "Are you going to feel differently about me . . . afterwards?"
"What?" He didn't sound offended, just bewildered. She almost smiled. For a moment.
"I want to go out to dinner," she said restlessly. "Remember I told you about Farley's?"
"Do you think that's a good idea?"
"I'm not expecting it to save my vision," Julie said. "What do you mean, is it a good idea?"
• • •
Farley's, where Julie had gone for special meals as a graduate student, turned out to be unchanged. The waitresses even still wore white blouses and black dirndl skirts. "Nice evening, isn't it?" their waitress said brightly, as she gave them each a menu.
Julie had been staring at the white tablecloth. She looked up. Through the plate-glass window she could see the sun, red-gold on the horizon, sending pink streaks across the sky. The waitress, who looked about twenty, had a smile that was also pink, and her hair was as yellow as lemons. Warren's eyes were the blue of the ocean Nick hated.
When you were blind, you couldn't see.
Julie slammed down the menu, "No," she said, "it's a lousy evening. And you sound like a stupid wind-up doll, anyone ever tell you that?"
The waitress gasped and disappeared from Julie's line of vision almost as if she had been vacuumed away.
Julie glanced at Warren, who was always nice to her. Who was always nice to everyone. "Why did you do that?" he said.
"I'm going blind."
"It's not her fault."
"It's not my fault, either. I did everything I was supposed to, but I'm going blind. If I can stand that, I'm sure she'll survive a five second insult from a stranger."
"You really upset her."
Julie looked back down at the tablecloth, smooth and pearly as the inside of a seashell. She stared at the cloth for a long time. Then she raised her eyes, and everything briefly blurred. Have you noticed intermittent blurring of your vision, Julie? Yes, but I've always had that. I thought it was because I was tired.
"Warren," she said, "can't we please . . ." She broke off. The waitress, approaching from the side with a wary glance at Julie, turned to face him.
"Are you ready to order?" the waitress asked.
They ordered. "I hope you'll excuse what my friend said before." Warren added. "She had a big shock today."
"I can imagine." The waitress looked at Julie curiously and walked away.
Julie was gripping the leg of the table. "I can't believe you said that," she said.
"There's no point in having you both upset."
"Both upset? You mean on a par?"
"Look," Warren said, "maybe we should talk about this later, after you've calmed down a bit."
She closed her eyes loosely. The darkness wasn't really black. It was no color she could name. Just because you're losing your vision is no excuse for losing your manners. The handicapped can be an inspiration to us all.
Her eyes snapped open. She was trembling. "Warren-"
He emptied two sugar packets into her water glass and pushed it into her hand. "You'd better drink this."
"I'm not having an insulin reaction. I'm having a reaction to you. I. . . ." She drank the water.
"Julie," Warren was saying, "I know it's awful for you now, but-"
"It's going to get better when I'm blind?" Her voice, unexpectedly loud, gave her goose pimples.
"Are you planning to act like this from now on?" he asked very quietly.
"I'm not planning anything. That's not what I'm thinking about right now!"
"I don't want to spend the rest of my life listening to you abuse people whenever you feel like it," Warren said.
"The rest of your life? Don't worry." Her fingers made tiny pleats in her napkin. "How many juvenile diabetics do you think even make it into their fifties?"
"I don't want to spend another fifteen years this way, then."
Julie was silent. Her mind seemed paralyzed. "I was wrong," she said finally.
Warren put his hand on hers. "Of course, it's terrible. But I'll do anything I can. . . ."
As long as I'm a good girl and never forget what they taught us in high school. A man by nothing is so well betrayed as by his manners.
Julie pulled her hand away. "That's not what-" She picked up a roll, its crust hard against her fingers. Hard rolls meant a restaurant was trying to be sophisticated, she had read.
"We'll be lucky if there isn't a nuclear war before we can get into our fifties, anyway," he was saying.
Julie bit into the roll.
"If I had ignored what you said to the waitress, it would have been condescension, as if you were some pathetic little creature who couldn't be expected to act like a decent person."
"No," Julie said, "it would have been justice. Can't you understand? If you just found out you're going blind, at least you ought to be exempt from the usual rules of etiquette, for Christ's sake!"
"But-"
"It evens thing up a little. It's like income taxes."
"That's ridiculous," said Warren. "It sounds like something you would have gotten from Nick."
"I did," Julie said.
"Well, I'm not Nick."
"You aren't," Julie said.
______________________________
* Lightly revised from original version published in Mid-American Review 6 (1986: 1-12). I thank Zelda Ackerman, Katrina Avery, Eve Barak, Eugene Davidson, Beverly Greenspan, Donna Harvey, Jincy Kornhauser, Claudia Strauss, and James Van Cleve for helpful discussions of the revisions.
The Role of Philosophers in HEC Networks
or
How I became an "Ethicist"
Mark Kuczewski, Ph.D.
Consortium Ethics Program
University of Pittsburgh Center for Medical Ethics
My twelve year old recently returned from a career day at school dazed by the wide variety of available occupations that are open to her. After talking about some of these, she sheepishly said, "I don't want to make you mad but, what good do philosophers do for the world?" We have all heard this question before from many sources but seldom has anyone waited to hear my answer. Because this was more than a facetious query (although the spot she had me in was not entirely lost on her), I believed I was obligated to answer. Furthermore, I could not pass up a good opportunity to give a lengthy monologue. Seldom do twelve year olds hand an adult such an opportunity. Of course, my answer was different than that of academics in a traditional philosophy department would give.
I work in a medical ethics consortium, an extended version of a Healthcare Ethics Committee (HEC) network. Our program, the Consortium Ethics Program (CEP), brings together representatives of community hospitals throughout the western Pennsylvania region with faculty from the University of Pittsburgh Center for Medical Ethics.1 When I try to answer the question, "What good does a philosopher do?," I naturally tend to talk about very specific kinds of activities. In one way, these activities are not anything new. Philosophers have been giving talks or teaching classes on topics in medical ethics for some time. At university medical centers philosophers even, occasionally, offer consultation on difficult clinical cases. However, academic bioethics centers seldom attempt to meet the needs of their broader healthcare community. At the local community level, however, great strides are being made.
Most faculty believe that they have some obligation to the local community. As a result, bioethics centers have begun to work with hospitals in their region to provide educational programming in medical ethics. They form HEC networks with the community healthcare providers. Typically, HEC networks are centered around a university bioethics center whose faculty conduct a variety of programs for hospitals. Often there is an annual conference in which the faculty present papers and lead case discussions on a variety of topics in medical ethics or devote most of the conference to an in-depth exploration of a particular theme. Usually these networks also function as something of a "speakers bureau" helping the hospitals to obtain lecturers for occasional in-hospital talks. HEC networks have sprung up around the nation and the rise of electronic communications is making information sharing ever easier.2
A particular crisis for the network or need, may generate a flurry of activity. Otherwise, the network activity focuses on education at the hospitals. Sometimes, a faculty member will take on the role of "community representative" on a hospital ethics committee and work with the particular hospital over the long term. Usually this kind of continuing involvement is restricted to the faculty who teach at small colleges or universities. Most do not consider themselves specialists in medical ethics but are happy to offer their knowledge and skills to the local hospital. This work is an important community service and it can be very rewarding. Once an academic becomes involved, however, the subject matter calls for a move beyond philosophical generalities. "The devil is in the details," or as Aristotle said, ". . . the fact is the starting point" of ethical inquiry. As a result, philosophers and other humanists who engage in ethics committee work have a tendency to become more engaged in specifics.
Unfortunately, faculty from major bioethics centers who have acquired more clinically relevant knowledge seldom accept permanent committee work in the community because of time constraints. As a result, the hard work of devising and implementing policy and conducting ethics consultations, is often left primarily to the in house clinicians and administrators. This division of labor is less than satisfactory. Community hospitals have a need for greater ethical expertise than can be supplied by a casual relationship with philosophers and other medical ethicists.
In the late 1980's, community hospitals in our region requested collaboration on many ethical issues. They wanted to discuss policies and often asked whether someone from the Center for Medical Ethics would be willing to sit on their ethics committees. They asked not only for didactic presentations but also for moderators to lead case discussions and to make "ethics rounds" in the clinic with healthcare teams. Furthermore, in the early 1990's, the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) devised a set of guidelines on ethical issues that institutions must meet and has continued to expand these requirements.3 As these needs were assessed, it became clear that they could not be addressed in the spare time of faculty. To meet these needs, ongoing collaboration has become the order of the day.
Our ethics consortium chose to incorporate a "train-the-trainer" model into our network. Our aim is for each hospital in the network to have at least two people on staff who are well-educated in the language and literature of medical ethics. We conduct our training consortium in three-year modules comprising an annual ethics retreat and a series of half-day seminars over the duration of the module. The training we provide includes education in ethical theory and the general principles of biomedical ethics. It also attends to the particular issues that need to be addressed by the community hospital such as policy-making and coordination among the providers on the continuum of care. The ethics training needs of the community hospitals lead people like myself to become specialists in this kind of "community ethics."4 At the same time the volume of the demand and also the benefits of collaboration among a variety of scholars recommended a consortium approach. In our consortium, a director (Rosa Lynn Pinkus, Ph.D., an historian by training) and an associate director (that's me, whose training is in philosophy) who have specialized in the ethical problems and needs of community hospitals and healthcare facilities do a good deal of the on-site teaching and consultation for our member hospitals. We rely on the faculty at the Center for Medical Ethics to do much of the seminar teaching in our "training-the-trainer" retreats and half-day classes. Dr. Pinkus and I coordinate activities of the CEP and also, develop new faculty and teaching materials5 in order to keep the network blossoming.6
To enhance collaboration, we have also enlisted the help of faculty from the local universities and colleges in the area. David Kelly, Ph.D., of Duquesne University is an original member of our "core" consortium faculty but we have added others who play a significant, but more "local" role. Sherrill Begres, Ph.D. (Indiana University of Pennsylvania), Michael Brannigan, Ph.D. (LaRoche College), William Bywater, Ph.D. (Allegheny College), William Omasn, Ph.D. (Slippery Rock University), Jean Rumsey, Ph.D. (Clarion University), and Brad Wilson, Ph.D. (University of Pittsburgh) have all participated in the more traditional roles that philosophers have served in HEC networks, namely, doing occasional talks at their nearby area hospitals and sitting on a hospital ethics committee and/or internal review board. These faculty members also benefit from being part of a consortium rather than working in isolation. For instance, they first participated as observers in the retreats and seminars run by the faculty at the Center for Medical Ethics. This allowed them to build expertise and confidence in subjects that were outside of their specialties. This aspect of the CEP has been most successful since each local faculty member ultimately has became a leader in the activities of the consortium.
The idealism that first led individuals into philosophy can now be expressed in a contribution to the good of the local community. Furthermore, the collegial interaction with other philosophers and professionals from a variety of disciplines engaged in a similar process is very enjoyable.
In conclusion, I would like to invite those trained in philosophy who wish to increase their service to the community to work with an HEC network, ethics consortium, or bioethics center in your region.7 Be advised that such work is likely to change you and the way you see yourself. You will become an "ethicist." You will no longer be simply the outsider whose value is in your naivete about medical matters. When philosophers first entered the clinical setting, simply asking "why" and challenging ingrained professional assumptions was our chief virtue. By now we have become familiar with a large body of literature and so, we are queried for what we know. We are not the same old persons in a new role, but we acquire new skills and perceive things differently as a result of prolonged experience. And this learning leads us back to philosophical reflection on the nature of theory and practice.8
Endnotes
1This article will focus on the cooperative nature of an HEC network, however, I should acknowledge that we live in an era of increasing competition among healthcare organizations. The politics of cooperation among "competitors" in the healthcare market can be touchy. We have been fortunate to be able to overcome many of these problems by working with the sponsorship and assistance of an organizational umbrella group, the Hospital Council of Western Pennsylvania. For further details on setting up this kind of network, see R.L. Pinkus, G.M.E. Aumann, M.G. Kuczewski, et al., "The Consortium Ethics Program: An Approach To Establishing a Permanent Regional Ethics Network," HEC Forum published by Kluwer Academic Publishers.
2The proliferation of such groups and the need for resources to address their specific needs has also resulted in a specialized journal called the HEC Forum published by Kluwer Academic Publishers.
3Joint Commission for the Accreditation of Healthcare Organizations. 1995 Accreditation Manual for Hospitals. Oakbrook Terrace, IL, 1995.
4"Community Ethics" has become the name of our newsletter. It addresses many of these concerns and shares experiences from individual hospitals. This newsletter is available on the World-Wide Web: http:/www.pitt.edu/~caj3/CEP.html
5For instance, see M. Kuczewski, M.R. Wicclair, et. al., "Make My Case: Ethics Teaching and Case Presentations," Journal of Clinical Ethics, 5(4): 310-315, 1994.
6Resources beyond what are available from a university bioethics center are necessary to establish such an extensive program. We have been fortunate to have the generous support of the Vira I. Heinz Endowment in building and developing our program.
7One place to begin looking is in the International Directory of Bioethics Organizations, Anita L. Nolan & Mary Carrington Coutts (eds.), National Reference Center for Bioethics Literature, Kennedy Institute of Ethics, Georgetown University, Washington, DC 20057-1065.
8For more on this topic, see T. L. Beauchamp, "On Eliminating the Distinction Between Applied Ethics and Ethical Theory," Monist, 67(4): 514-532, 1984; A. MacIntyre, "Does Applied Ethics Rest on a Mistake?" Monist, 67(4): 498-513, 1984; L.A. Kopelman, "What Is Applied About "Applied" Philosophy?" Journal of Medicine and Philosophy, 15I(2): 199-218, 1990; A.R. Jonsen, "Of Balloons and Bicycles or The Relationship between Ethical Theory and Practical Judgement," Hastings Center Report, 21(5): 14-16, 1991.
Such a Gas
Doctor, your ego fills my exam room
I hardly know where to begin
the history and physical
what if I miss something?
What if you drop dead
of a heart attack
on your home treadmill
tomorrow morning
after I have pronounced you
fit as a fiddle?
Your chest hair grows
right out of the top of your gray scrubs.
Sure I'm jealous.
You make more money in a year than I make in five
you get in the elevator
and turn around to race everyone
now that's body language
I heard in on good faith
from my resident
that your residents are so frightened of you
they are afraid to speak up when they should.
Once, one of them was farting
particularly odiferous beer farts
while you were doing surgery
and the smell circulated out of control
around the operating theater.
You thought you had perforated the bowel
and continued to search for the hole
running it back and forth in your gloved hands
but it was just your farting resident
who was too scared of you to admit
time passed.
Finally you closed the patient, convinced that
there was a hole in the bowel
started powerful antibiotics
sent the patient to the unit
when all the time it was just flatulence.
And I wouldn't be any more courageous
if I had to work with you
I'd sweat right into the wound
But I am not a surgeon
I hold your hands
look at your tongue
thump on your chest
and order a stress test
careful not to fart
the entire time.
David Schiedermayer, MD
Medical College of Wisconsin
Are Institutional Ethics Committees Working?
Ruth Dreyfus, Attorney
Stanford, Connecticut, and New York City
Introduction
Whether institutional ethics committees, sometimes known as clinical ethics committees or simply "ethics committees," are working can best be answered by asking whether they have satisfied the purpose for which they were established, or at the least made substantial progress in that direction. To ascertain that purpose, the interrogator might study the legislation that created the committee and promulgated its rules, or look to the standards set forth by the professional associations which oversee them, or both.
That can't be done. Extraordinary as it sounds, other than local statutes in Hawaii, Maryland and the District of Columbia, there is no statute anywhere in the United States either requiring the formation or governing the work of institutional ethics committees. Of equal surprise is that no medical or health care facility professional group recommends that such committees exist, or the minimum structure or standards to which they should adhere.
At the federal level, the nearest mandate for the creation of an institutional committee can be found in the original PSDA legislation introduced by Senators Moynihan and Danforth in 1990. Entitled the Patient Self Determination Act, the legislation's purpose was to require that any health care institution receiving Medicaid or Medicare funds be required to inform all its patients of the availability of advance care directives and the right to consent to or refuse treatment. In keeping with the purpose and in recognition of the emergence of high technology health care, the Senators and other supporters of the original act required providers to "implement an institutional ethics committee which would initiate education programs for staff, patients, residents and the community on ethical issues in health care, advise on particular cases, and serve as a forum on such issues."1 By the time the Act emerged from committee, all reference to ethics committees was deleted. The deletion took place partly because of potential costs and partly because of fear of federal control over the health system, concerns which appear still to be with us. While the vacuum thus created has been somewhat reduced through the efforts of the Hastings Center and the American Hospital Association, there is, as yet, no implementation legislation.
In 1992, a new national effort at providing structure and/or instruction to health care providers on advance care directives (and related matters) was made. The Joint Commission on Accreditation of Healthcare Organizations, for the very first time, in its official JCAHO Manual, required institutions to have "mechanisms in place to consider ethical issues arising in the care of patients and to educate care givers and patients in bioethical issues."2 No one, then or now, defined what was meant by "mechanism is place," another missed opportunity to establish goals and provide for accountability. A format for providing caregivers and patients with vital "how to" information again was denied. No one, except possibly the courts, has the authority to expand on "mechanism in place," and the 1995 political climate for the imposition of federal standards is something less than conducive to such effort.
Lacking any direction either from the legislatures or peer organizations, how can the fact that institutional ethics committees have taken off with apparent gusto be explained? In a survey conducted for the President's Commission and released in a 1983 volume entitled, Deciding to Forego Life Sustaining Treatment, it was reported that fewer than 1% of hospitals had ethics committees involved in patient decision making.3 The 1993 treatise Health Care Ethics Committees, the Next Generation, by Judith Wilson Ross and colleagues, sets the current figure as being nearer to 65% to 85%.4 Despite there being no single explanation for what has come to be a national proliferation of institutional ethics committees, not only in hospital settings but in nursing homes, many analysts agree that their ever increasing growth can be attributed to a countrywide, broad political/social/philosophical movement questioning traditional relationships and authority.
In his often cited article in the University of Maryland Law Review, John Fletcher, Professor of Medical Ethics and Director of the Center for Biomedical Ethics at the University of Virginia Health Sciences Center, writes about ethics committees not as isolated phenomena but as integral parts of the bioethics movement, with their emergence a direct result of that movement. "Although bioethics drew some intellectual resources from the ancient discipline of medical ethics, its major themes have their roots in the 1960's movements for civil rights, women rights, and consumer interests. American culture, its institutions, its chronic racism, and the morality of the Vietnam War were under radical criticism."5 He describes the coalescing of a pluralistic/idealistic movement which made the issues facing ethics committees "features on the social and political landscape of bioethics."6
While Professor Fletcher's views on how and why the bioethics movement and institutional ethics committees have become so popular is not the only account, his does make sense. After the promulgation of the Nuremberg Code in 1947, medical authority began to be questioned. The ethical alarms of Henry Beecher and Jay Katz were sounded. Institutional Review Boards, distant first cousins to ethics committees, were being mandated from Washington and details began to leak about the research ethics "megadisaster" known as the Tuskegee Study. The sixties was the perfect time to question how institutions, including health care institutions, might be shaped to reflect reform. Events of other decades also contributed to the formative history. Much can be learned from studying two of the organizational ancestors of the 1995 Institutional Ethics Committees. They provide the subject of the next section of this paper.
Organizational Ancestry
The first mention of an institutional ethics committee appeared in 1976 in the landmark New Jersey case, In re Quinlan.7 The court in Quinlan held that the father of Karen Ann would be immune from suit if the hospital treating her were to convene (emphasis provided) an "ethics committee" and that committee then confirmed the prognosis made concerning Ms. Quinlan, that there was no reasonable chance she would return to a "cognitive and sapient state." If the committee found itself in accord with that view, then the father, acting as her surrogate, could authorize the hospital to "pull the plug." The court's opinion, based largely on an obscure article written by a Texas pediatrician, Karen Teel, just a year before, clearly wanted to give legal weight to a "prognosis committee" validation. Some fifteen years later, George J. Annas, Professor of Health Law and Director of the Law, Medicine and Ethics Program at Boston University Schools of Medicine and Public Health, wrote a piercing article in the Hastings Center Report which he called "Ethics Committees: From Ethical Comfort to Ethical Cover." In the article he used the Quinlan case as his springboard to attack not only the New Jersey Court decision that he had earlier characterized as one to furnish "legal comfort to doctors," but to argue that "the strategy of using ethics committees to provide 'comfort' for physicians and others worried about either legal liability or public reaction has prospered. 'Ethics Committees' have grown from an anomalous entity to provide ethical comfort to a few, to an almost standard entity to provide ethical cover for many."8 Notwithstanding Professor Annas' view, the Quinlan case has come to be regarded as the first patient rights case to give its blessing to the idea of a court obtaining guidance for its decision making from an agency of a hospital which could claim the power to predict the future.
In addition to Quinlan, there is at least one other significant precursor to the modern institutional ethics committee, which pre-dates Quinlan. While it's not possible to provide a specific date to the birth of the ethics committee, it is tempting to set it at 1961. In that year a small group was formed in Seattle to determine entry selection into the chronic hemodialysis program being made possible by Dr. Belding Scribner's invention of the arteriovenous shunt and cannula. Because the invention worked so well, patient demand soon exceeded supply. It became clear that some way to distribute or ration the resource would have to be found. Once the issue was recognized as no longer being medical, a committee consisting principally of non-physicians was established to do what was necessary. Although the group was anonymous, its existence became known through an article in the New York Times. Shana Alexander, then a staff writer for Life magazine, picked it up and wrote her now famous article, "God Committees."9 Fear spread throughout the land that people with less than adequate expertise were rushing in where angels feared to tread. Fortunately, subsequent changes in the delivery of care to patients with end stage renal disease eliminated the dialysis selection committees, committing them to a place in history. Vestiges of concern over the dangers inherent in empowering committees with health care decision authority did not disappear.
Unlike its ancestors, the dialysis committee of 1961 and the prognosis committee of 1976, both of which were created to serve as decision-making agencies, the modern institutional ethics committee was conceived as a means to serve its constituency in an advisory capacity. The committees tried to bring together people with different backgrounds to provide a "forum" for discussion, but not to make binding decisions. While there is no commonality in standards for membership in the thousands of institutional ethics committees now in existence, and "different backgrounds" often means different positions on the staff of the health care institutions, virtually all such committees have agreed upon a three-fold purpose: to provide case consultation, to educate, and to help establish institutional policy and/or guidelines. It is, therefore, possible to review the work of the committees in the light of their own goals.
For the purpose of this paper I analyze four health care facilities in the greater New York City area. The first, the Jewish Home and Hospital for Aged, is the teaching/nursing home partner of Mount Sinai Medical Center. Through its residential housing of more than 1300 beds, and a variety of community based activities, the Home provides services to more than 2500 of the frail elderly of New York City. The second is the New Rochelle Hospital Medical Center, a community based primary care and teaching hospital just outside New York City in Westchester County. The hospital is an affiliate of New York Medical College, SUNY, and Columbia University. The third facility is Memorial Sloan-Kettering Cancer Center, a world renowned institution located in midtown New York City. The fourth provider is the Columbia Presbyterian Hospital Medical Center, a huge complex located in New York City but in essence a medical center whose population and influence reach far beyond its borders. In my study of these four institutions I spoke directly to either the co-chair of the ethics committee or the committee's ethics consultant, read the applicable material pertaining to the institution, and made an on-site field trip.
Form and Function: A Study of Four Committees
Before meeting with the representatives of the chosen health care institutions I set out to establish to my own paradigm of an institutional ethics committee to raise as the standard by which to judge their success. I also determined to read as much as I could of the thick file of literature on clinical ethics committees, a task made less formidable after I became aware of a computer print-out published by the Department of Health and Human Services of the Public Service at the National Institute of Health in Bethesda, a remarkable document known as an Off-line Bibliographic Citation List generated by Medlars II. The print-out claimed to describe every article on the committees from the beginning of time to the date of my inquiry. Having gone through it, I'm certain it did.
Following my reading, I drafted a list of questions to ask the representatives covering: the history of their committee, the reason for its coming into existence, its principal purpose(s), how its members were chosen, who had to serve, and was there a lay representative. Not surprisingly, there were similarities and differences in the answers I received.
In meeting with Eileen Chichin, of the Ethics Consult Committee at the Jewish Home and Hospital for Aged (JHHA), I was struck by the vision and compassion she and others on the consult team, notably Dr. Ellen Olsen, had evidenced in their dealing with the enormous problems they faced each day. The committee at the JHHA has been active for several years in focusing attention on the issue of respect for patient autonomy. In 1987, it created its Center on Ethics and Long Term Care. The center began a program of monthly ethics rounds to provide staff education on ethical issues. These rounds did not, however, provide direct involvement with the resident/patient's primary health care team. A grant from the Kathy and Alan C. Greenberg Center in Geriatrics and Long Term Care allowed the Ethics Consult Committee to be established in 1991 "to assist the primary care team in dealing with dilemmas by facilitating discussion and gathering information."10 Because the educational needs of the staff are addressed through the ongoing ethics rounds, the Ethics Consult Committee sees its task as limited to case consultation. The Consult Committee provides twenty-four hour coverage for any of its staff or its residents who seek ethical consultations. The primary responsibility for health care decision-making rests with the nursing home resident working with her primary health care team at the Home. Nevertheless, patients and their families are encouraged to bring their concerns directly to the Consult Committee.
My single objection to the design of the Ethics Consult Committee is with the restricted composition of its membership. Of the committee members, all nine are members ex officio: the Home's administrator, its assistant administrator, medical director, assistant medical director, director of nursing, associate director of nursing, its director of social services, the doctor who is director of the Home's Center on Ethics and a nurse with a Ph.D. in gerontological social work. In view of the fact that the average resident of the Home will remain there far longer than the average patient would stay at a hospital, it would be a special asset to the committee to find a space for a "resident representative," if not someone from the community.
The New Rochelle Hospital Medical Center has an ethics committee jointly chaired by Cornelia Fleming, R.N.M.P.H., Senior Director of Nursing at the Hospital, and Jeffrey Bransilver, M.D. I was fortunate to have the opportunity to see what can be accomplished through extraordinary effort and great skill. The institutional ethics committee at the New Rochelle Hospital, founded in 1992 by Connie Fleming, is about as good as it gets. The principal reason for its existence is that Connie, who also founded the Nursing Ethics Committee at Calvary Hospital and then the Nursing Ethics Committee at New Rochelle, felt keenly the need for it to come into being and to be of service in education, policy review, and case consultation. While the twenty member committee is appointed by the President of the Hospital, members serve not only because of their official position (President of the Hospital and the Center's Howe nursing home serve ex officio), but at least in the case of one member, because they actively sought involvement. Membership is truly interdisciplinary, including a minimum membership of medical, nursing, and social work staff, two members of the clergy, "a person with training or expertise in bioethics" and one member with no connection to the hospital.
Education, as interpreted by the New Rochelle committee, means reaching out to the hospital staff through medical grand rounds, ethics grand rounds involving a nurse and a medical resident, nursing ethics forums and providing a resource center concerning advanced directives. The committee also reaches out to the community by providing public education programs. The committee's members have spoken on local television and radio stations, written to community groups about a variety of health care issues and spoken to both the local Bar Association and the Lion's Club.
Policy review is an important component of the work of the ethics committee. As stated in its official Statement of Purpose and Functions, "The committee plays an active role in the review and/or development of policy statements that address ethical concerns." It has also developed educational guidelines for its health care professionals which then represent the policy of the New Rochelle Medical Center. To date, papers have been prepared on "The Withholding and Withdrawing of Life Sustaining Treatments," "On the Determination of Decisional Capacity" and "Informed Consent." Others are being prepared on "Confidentiality" and "Clear and Convincing Evidence." The Statement of Purpose and Functions states: "As additional guidelines are developed and approved they will also reflect policy."
Case consultation is available, on call, to patients, families, nurses or doctors. The co-chair is considering whether to notify patients of the availability of direct access to the committee through its brochure entitled, Legal Documents to Assure Future Health Care Choices, which is distributed upon admission. Every Ethics consult is recorded in the patient's file and made a part of the committee's annual report to the hospital administration. From December, 1992, to December, 1994, there were eighteen individual consultations. All but two involved patients over the age of sixty. Fifteen of the patients lacked capacity to act on their own behalf.
The co-chair of the ethics committee at Memorial Sloan-Kettering, Dr. Jimmie Holland, is a psychiatrist who also serves as Chief of the Psychiatry Service at that institution. She is also one of the most well-informed and perceptive people I have ever met. The Committee there was started in 1984, but its growth has come about largely in response to the need created by New York's DNR legislation and concern about how best to implement its guidelines. It has about fifteen members, but no non-staff people other than Joseph Fins, M.D., an Assistant Professor of Medicine at Cornell University Medical College and Director of Medical Ethics at the New York Hospital-Cornell Medical Center. Dr. Fins, who is also an Associate for Medicine at the Hastings Center and a physician-ethicist in residence at the Hospital Chaplaincy in New York, is a paid outside "ethicist" who fills a position on the committee previously held by Susan Wolf, an attorney-ethicist and scholar who was an Associate at the Hastings Center at the time of her appointment. Dr. Holland welcomes trained ethicists and has expressed her wish to have someone fully funded on the ethics committee for the future. Regrettably, there is no non-health care professional on the committee. While homogeneity of background does not by itself mean uniformity of belief or analysis, an approach from someone with a different perspective could enhance the process of consultation.
The ethics committee at Sloan-Kettering sees itself serving in the three important areas of providing education, policy review and case consultation. Most of the consultation referrals still come from the hospital's doctors and nurses, but direct contact by patients is encouraged. Signs are posted in public areas of the hospital telling how to contact the ethics committee. Last year there were about one hundred individual consults for the ethics committee. Not surprisingly, most involved end of life issues. Through medical grand rounds the committee provides in-service seminars to train its members on how to handle a case consultation. Community education programs are not offered by the committee, but such outreach is less needed at Sloan-Kettering than elsewhere since its patients come from around the country and the world. Its Psychiatry Service is a comprehensive resource. In addition to providing a wide variety of informational and counseling services, it offers information on patient's rights, networking, post-treatment programs, and a complete Social Work Department.
The fourth health care institution I visited was the Columbia Presbyterian Medical Center where I met with Dr. Tia Powell, a psychiatrist who serves as ethics consultant to the ethics committee of the Center. She is what some articles on ethics consultancy call a "beeper person." We talked about the ethics committee itself and then moved on to her role as ethics consultant. I learned that the committee which was initiated about twelve years ago was re-constituted approximately three years ago. It serves as a resource for mediation of actual or possible disputes rather than a tribunal with an adjudicatory function. It does not seek to publicize its existence to patients, who have indirect access to the committee by working with the Center's patient representatives who are directly available to the patients. As an ethics consultant, Dr. Powell works directly with patients and reports back to the committee. This "two-tier" system is frequently employed at health care institutions, sometimes taking the form of a sub-group of the ethics committee acting as "ethics consultant" and reporting back to the full committee. Unlike other institutional ethics committees, the Columbia committee does not see itself providing educational programs or policy guidelines for the Center, except in the sense that it has a significant impact by performing its role as ethics consultant. Dr. Powell stressed the committee's strong role as provider of "process" where cases are analyzed in depth by a group of dedicated professional people whose primary concern was fulfilling the needs of patients within an ethical framework.
All the health care institutions ethics committees studied expressed a commitment to act on behalf of the patient in accordance with principles of dignity, compassion and patient autonomy. There is considerable divergence, however, on the particular responsibilities of the ethics committee and how to fulfill them. The problem that I see with their practice involves ethics committee membership. In the institutions I studied there was a close correlation between who served as committee members and the constituency to whom the committee provided direct access. That correlation in turn leads to the issue of whether there can be "process" without due process. There are many knowledgeable authorities in the field who believe that the concept of one without the other is something of an oxymoron. Susan Wolf, in her often cited article in the 1991 Maryland Law Review, writes "The due process obligation should attack whenever an ethics committee becomes involved in an ongoing clinical case in a way that has the potential to exert significant influence over treatment decisions. . . Because of the actual power that ethics committees can wield, their primary mission must be patient protection rather than service to health care professionals."11
What is meant by due process in a health care institution? Do we run the risk of "killing the golden goose" by turning the institutional ethics committee into a court of law? Must a patient be told when her case is the subject of an ethics consult? Must she be present? How intrusive should the committee be in the relationship between doctor and patient? Not surprisingly, ethicists opinions differ, if only in approach. John Fletcher, in an article written largely in response to the Wolf commentary, agrees that due process is important, but stresses the history of ethics committee case review. There is an important difference between "ethics consultation" and "ethics committee case review, and that difference relates directly to due process issues."12 In his view, each serves a distinct role and each should be part of a two stage system, the first informal at the bedside and between the patient and doctor, the second at the level of the institutional ethics committee. While acknowledging the importance of due process at both levels, Fletcher favors flexibility and even questions the need, in every case, for patient access to the committee. Using the two tier approach conflict may be avoided by an effective use of the bedside conference.13 Fletcher's concept is to put the institutional ethics committee in its historical context, and to encourage using it as a place where care givers and care recipients can work together following an agreed upon common institutional ethics program. When Wolf says that the due process obligation arises "whenever an ethics committee becomes involved in an ongoing clinical case," she and Fletcher may have only a semantic quarrel. In his two stage view of clinical case consultations he uses "becomes involved" as taking place at stage two, but not before. It is therefore conceivable that the two views may be quite close.
Conclusion
To answer the question I posed, "Are institutional ethics committees working?," I reply in the affirmative. Balancing the relationship between patient and doctor, and health care institution and society is complex. With ethics committees providing the forum, such issues are being raised and debated. In her book, Ethics on Call, Nancy Dubler, the founder and director of Montefiore's Law and Ethics Consultation Service, refers to a bioethicist's job as "one of the newest ways of working for social reform."14 I agree with that interpretation of the office, and extend it to include the role of institutional ethics committees.
Looking Ahead
Praise for how far we have come does not preclude planning for the future. There are a few caveats as well as suggestions for the continued successful evolution of the committees that I wish to offer. The first caveat is that the committees strengthen themselves to avoid being co-opted by individuals and groups whose principal concerns are risk management and cost containment. Bioethical issues rest on a moral foundation that should not be jettisoned in the name of budget cuts, at least not by the ethics committee. The second caveat is that ethics committees avoid choosing too narrow an agenda, and instead speak out on issues of bioethics before they become media events. Policy papers reflecting the views of the institution should be available to the public for reference as needed. Additionally, the institution should inform the public whether it has an ethics committee and how it is accessed. If health care institutions are in the market place (as their advertising implies), why not compete in the market place of ideas?
In addition, I would also urge ethics committees to expand their lay membership and to include more people with non-medical backgrounds. The composition of the committee should be broad enough to reflect the diversity of the community served and, where appropriate, patient representation. Whether their input is in the area of education, policy guideline making, or case consulting, such "outsiders" can become effective "insiders." Philip J. Boyle, talking about doctors who are on ethics committees writes, "Many doctors feel they must be moral experts. They are merely asked to work in an interdisciplinary fashion and contribute to an ethical decision."15Non-medical committee members need not be "moral experts" either, but simply people who have the head and heart to reach such decisions. Elitism in the selection of Institutional Ethics Committee members should be discouraged. If jurors who decide on life-death issues are not required to be members of a "chosen class," there ought to be ample room for a truly diverse group on institutional ethics committees, all the more so, since their function is not judicatory but advisory.
My final recommendation concerning institutional ethics committees, and probably the most important one, is that they look inward and examine not only their membership, but their mission. Are we doing enough? To what policies and principles are we dedicated? Are there due process procedures we must follow? Are there aspects of our operation which need to be re-assessed? Many ethics committees are still in their infancy, others have reached adolescence, and still others are in young adulthood, but self-evaluation is always timely. As Ross et al., wrote, "If they are to justify the commitment of institutional resources the institution has a right (if not an obligation) to ask whether it is receiving anything for its investment other than good public relations for having an ethics committee."16The design of an evaluation instrument is undoubtedly difficult, but that should provide a challenge and not an excuse.
Because institutional ethics committees serve as the conscience of their institutions, I hope that if they do nothing else, they examine who they are and what they might become. The question to be asked is simply, "Is our institutional ethics committee working?"
Acknowledgment
I want to express my appreciation to the representatives of the health care institutions with whom I met, all of whom generously shared their insights. I also want to thank Marna Howarth, librarian at the Hastings Center, and Philip J. Boyle, who opened many doors.
Endnotes
1. Medical Health Advisor. 1990, Jan. Vol. 6:1, p. 8. This issue contains a brief summary of the "Patient Self Determination Act of 1989," in its bill stage.
2. Fry-Revere Sigrid. Some suggestion for holding bioethics committees and consultants accountable. Cambridge Quarterly for Health Care Ethics. 1992; vol 2:4, p. 449.
3. Judith Wilso
