child_mother Futility The Case of Rachel B

Introduction:

Today we will focus our discussion on the case of Rachel, a two year old girl who presented to the University Hospital in January, 1997, with what appeared to be an acute illness, then subsequently became febrile, lethargic, and eventually, comatose. She showed no signs of recovery over her subsequent days in the hospital. We will focus on the following issues: the definition of brain death, the testing needed to determine whether it is present, and the decision of what care to provide -- and how to reach that decision when there is a conflict between the medical staff, the hospital, and the parents. Of particular interest in this case is the varying acceptance of brain death on the part of certain religious groups, and the extent to which the medical community can or must accommodate these views.

Objectives:

  1. Describe the difference between various states of impaired consciousness - in particular, coma, persistent vegetative state and brain death - and how they are diagnosed
  2. State the meaning and relevance of "futile care," "medically inappropriate care," and the "best interests" of a severely neurologically impaired child.
  3. Enumerate the options in the care and treatment of Rachel, and list the criteria used to choose among them.
  4. Outline the ways in which religious beliefs and expectations might be "reasonably accommodated" in reaching a decision on Rachel’s care.

Preparation:

  1. Read the Case of Rachel B. along with the medical, legal, and ethical information contained on the resources page.
  2. Since this case occurs in New York, a pivotal issue is the New York directive that healthcare providers ought to give “reasonable accommodation” to religious belief. Think about how that statement might actually be quantified in a given clinical situation.
  3. Suggestions for a Written Assignment:
    • One obvious possibility would be a position paper on how you think the case of Rachel should be resolved.
    • Articles for review cover a wide range of possibilities from Law, to Medical Futility, to Medicine and Religious Values.  All these are apt topics for a review or for a position paper based on a particular side of the argument (ethical / legal / religious)
    • You might imagine that the case was decided one way or the other and write a letter to the editor critiquing the decision.

Process:

  1. Today's class begins in lecture, with an introduction to the case and a discussion of the issues by a physician, hospital administrator, nurse, social worker, and chaplain. Their discussion will take the form of a dialogue with one and with the student leaders for the day who will be seated in the first row. In effect the entire class will function as an ethics committee trying to decide what permissible choices are open to the hospital and medical staff.
  2. In section, you will discuss the case as an ethics committee might, weighing the information provided by the various participants, the meaning of “reasonable accommodation of religious views,” and the medical data itself.
  3. Your task will be:
    • To decide what the hospital should do.
    • To write a press release which will explain your decision in such a way that the issues and reasons will be accessible to a wide range or readers and listeners beyond the medical and ethical community.  The press release is strictly limited to 100 words.
    • The leader should send the press release to the MCS office: mikevetrano@notes.cc.sunysb.edu These will be distributed to the entire class.
  4. Faculty will be provided with a description of what actually happened in the case of Rachel B. They can share this with you at the end.

Study Questions:

  1. Stedman's Medical Dictionary defines "coma" as "a state of profound unconsciousness from which one cannot be roused; may be due to the action of an ingested toxic substance or of one formed in the body, to trauma, or to disease." Using this definition, explain the difference between "being in a coma," "being in a persistent vegetative state (PVS)," and "being brain-dead." How does a child's neurological condition influence a determination of what is in her "best interest"?
  2. In New York State, what criteria are used to determine brain-death?
  3. Are any of the interventions done or proposed in this case "futile" or otherwise "medically inappropriate?" By what criteria?
  4. Why do New York State regulations for determining brain death (1987 NYSDOH regulations (10NYCRR400.16)) require that hospitals have "a procedure for the reasonable accommodation of the individual's religious or moral objection to the determination?"
  5. Why do you think New York is the ONLY state in the union with such a requirement?