Pediatric Annals

Ethical Dilemmas: The Dark Side of Medical Progress

Carl Pochedly, MD

Abstract

During the past two decades, many important discoveries have been made in treating cancer in children. "Cure" for these children, once believed to be impossible, is now a common occurrence. But, this success has forced us to confront troublesome new dilemmas and conflicts. These dilemmas are inherent in the following situations:

1. There are too many choices in therapy. Often two or more regimens of therapy yield similar results. Which regimen should be used.7

2. Because of the statistical and scientific rigor and precision required by clinical research protocols, conflicts may develop between clinical research and patient care. The physician may be torn between giving his patient what he thinks is the best (or safest) treatment, or giving the treatment prescribed according to the clinical research protocol.

3. Treatment of certain cancers (such as acute lymphoblastic leukemia or Wilms' tumor) has become so effective that to withhold therapy is to permit death when a child could otherwise have the opportunity for prolonged survival or cure if the treatment were given. What pressure or coercion should be exerted on parents who refuse to have lifesaving treatment given to theij child or who do not comply in carrying out the prescribed treatment program?

4. For bone marrow transplant donors, usually only a single person is judged to be histocompatible with the patient. Transplant of bone marrow donated by this individual provides greatest safety from possible complications (such as graft-versus-host disease) and is most likely to produce the desired therapeutic effect in the recipient. What if this potential donor decides not to donate his marrow? What is the ethical and legal redress of the patient who is likely to die if a marrow transplant is not given?

5. The laboratory gives us too much information. Modern biochemistry, electronics, and computer technology have joined to produce the recent phenomenon of the multiple biochemical profiles that provide 20 or more biochemical determinations on one blood specimen. Likewise, the radiologist often overwhelms us with scans and sophisticated images. We frequently get biochemical and anatomic information that we didn't ask for, sometimes more data than we want, and information about our patients for which we are not able to give a rational explanation. The original orderly and organized plan of treatment may be upset by this glut of information. In the past, our failings may sometimes have been due to lack of laboratory information, but no more.

6. In these litigious times, we need to inform parents and patients about all of the various aspects of a new cancer treatment program. This includes detailing all the potential benefits plus all possible complications and adverse side effects. Here, informed consent is often difficult, impractical or impossible. Families cannot always be made fully-informed equal partners in clinical decision-making. This situation creates a troublesome ethical dilemma, and may leave the physician in legal jeopardy.

7. With the sophisticated computerized laboratory and medical records, and the need for numerous individuals to review each patient's chart, another dilemma arises. People who need to read the charts are interns and residents, medical students, nurses, nursing assistants, student nurses, social workers, qualityassurance personnel, billing personnel, etc. All these people need access to the charts to satisfy educational, peer review, or financial/billing needs. As a result, confidentiality of clinical information (medical records) has become only an illusion, and often not a practical or achievable reality.

These dilemmas are felt in many medical specialties, but they especially affect those who treat cancer in children. They are the dark side of the success of modern medicine.…

During the past two decades, many important discoveries have been made in treating cancer in children. "Cure" for these children, once believed to be impossible, is now a common occurrence. But, this success has forced us to confront troublesome new dilemmas and conflicts. These dilemmas are inherent in the following situations:

1. There are too many choices in therapy. Often two or more regimens of therapy yield similar results. Which regimen should be used.7

2. Because of the statistical and scientific rigor and precision required by clinical research protocols, conflicts may develop between clinical research and patient care. The physician may be torn between giving his patient what he thinks is the best (or safest) treatment, or giving the treatment prescribed according to the clinical research protocol.

3. Treatment of certain cancers (such as acute lymphoblastic leukemia or Wilms' tumor) has become so effective that to withhold therapy is to permit death when a child could otherwise have the opportunity for prolonged survival or cure if the treatment were given. What pressure or coercion should be exerted on parents who refuse to have lifesaving treatment given to theij child or who do not comply in carrying out the prescribed treatment program?

4. For bone marrow transplant donors, usually only a single person is judged to be histocompatible with the patient. Transplant of bone marrow donated by this individual provides greatest safety from possible complications (such as graft-versus-host disease) and is most likely to produce the desired therapeutic effect in the recipient. What if this potential donor decides not to donate his marrow? What is the ethical and legal redress of the patient who is likely to die if a marrow transplant is not given?

5. The laboratory gives us too much information. Modern biochemistry, electronics, and computer technology have joined to produce the recent phenomenon of the multiple biochemical profiles that provide 20 or more biochemical determinations on one blood specimen. Likewise, the radiologist often overwhelms us with scans and sophisticated images. We frequently get biochemical and anatomic information that we didn't ask for, sometimes more data than we want, and information about our patients for which we are not able to give a rational explanation. The original orderly and organized plan of treatment may be upset by this glut of information. In the past, our failings may sometimes have been due to lack of laboratory information, but no more.

6. In these litigious times, we need to inform parents and patients about all of the various aspects of a new cancer treatment program. This includes detailing all the potential benefits plus all possible complications and adverse side effects. Here, informed consent is often difficult, impractical or impossible. Families cannot always be made fully-informed equal partners in clinical decision-making. This situation creates a troublesome ethical dilemma, and may leave the physician in legal jeopardy.

7. With the sophisticated computerized laboratory and medical records, and the need for numerous individuals to review each patient's chart, another dilemma arises. People who need to read the charts are interns and residents, medical students, nurses, nursing assistants, student nurses, social workers, qualityassurance personnel, billing personnel, etc. All these people need access to the charts to satisfy educational, peer review, or financial/billing needs. As a result, confidentiality of clinical information (medical records) has become only an illusion, and often not a practical or achievable reality.

These dilemmas are felt in many medical specialties, but they especially affect those who treat cancer in children. They are the dark side of the success of modern medicine.

10.3928/0090-4481-19880401-09

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