The Role of a Training Protocol in Formulating Patient Instructions as to Terminal Care Choices

Harold Bursztajn

Mr. Bursztajn is a fourth-year student at Harvard Medical School. Boston. This manuscript was prepared during a special fellowship year (1975-76) supported by Harvard Medical School.

The wide discussion generated by the case of Karen Anne Quinlan has added to the growing interest in means by which individuals may choose not to have their lives prolonged under certain conditions. In both public and professional sectors it has been suggested that patients' instructions to their physicians regarding terminal care choices be facilitated through signing a statement called "the Living Will." On Jan. 1, 1977, California became the first state to recognize, through legislation, a certain class of "Living Wills."

Given such interest, physicians may expect increasingly frequent patient requests for help in drawing up a document setting forth their choices about terminal care. In order that the patient may be benefited by such a document, the physician must be trained to respond to such requests in a manner which minimizes its risks. The risks involved are located in both the uncertainty inherent in making choices prior to the actual terminal care situation and the uncertainty in interpretation of such documents [1-3] stemming from vagueness of wording, disregard of variation among patients, and lack of mechanism for resolution of conflict regarding intent.

A central task of medical education has been described as training for uncertainty [4]. In this task various skills are employed in obtaining, using, and communicating information. Among these skills is the ability to ask a minimum set of standard questions, which screen for the presence of symptoms as found in the traditional review of systems. An extension of this method, elaborated in protocols for training paramedical personnel [5], is the common symptom guides [6] designed to ensure that certain crucial questions are asked whenever a patient presents with a particular complaint (for example, abdominal pain) or request (for example, for pain relief). What is proposed here is to initiate training of physicians in use of a protocol to help a patient draw up a Living Will. The successful use of such a training protocol could begin to meet the existing need for a more structured education in the care of the terminally ill [7], and to minimize uncertainty by achieving standards of uniformity and reproducibility in this aspect of medical care while leaving room for individual variation.


The Training Protocol for Formulating Patient Instructions [*] consists of six stages, and in the clinical setting involves a student working with an assigned patient. In Stage I the patient states in his own words instructions regarding terminal care choices. A review is then conducted which obtains, as a minimum, information which answers the following questions: (a) Why make explicit a guide to terminal care choices prior to the terminal care situation arising? (b) When (that is, under what circumstances) should the choices expressed in this document become operative? (c) Who should carry out such choices? (d) What should such choices be? (e) Where (for example, in which hospital or home setting) should such choices become operative? (f) How ought conflict regarding intent be resolved, if it arises? (g) Are there other points the patient wishes to include?

In Stage II a case study of a patient's responses is read by both the student and his assigned patient. The case study involves a model Living Will in a question (that is, those of Stage I) and answer format. In Stage III both the patient and the trainee are asked: With which answers to the questions outlined in the case study do they (a) agree with as choices they would make for themselves; (b) disagree with but believe that others in this society, if they wish, ought to be able to make; (c) disagree, and believe that no one in this society should be so able to choose? Stage IV involves a review of various existing versions of a Living Will [1-3]. Stage V is a discussion of the risks attendant on Living Will documents. In Stage VI a Living Will document is drawn up. A minimum document should include information which answers the questions asked in Stage I, be signed by the patient and whoever is designated to carry out patient choices (for example, family physician), and contain provisions for annual review.


The process of ascertaining a person's values by review of case studies involving the value choices in question has been previously described [8]. The application of a protocol offers physicians a structured approach to helping patients make informed choices about their terminal care. The end product is a tailor-made document designed to fit the needs of a particular doctor-patient relationship and yet a document having the certain minimal uniformity and reproducibility which would be necessary for standard use.

Possible benefits of such protocol use extend beyond terminal care. Involving the student and patient in making explicit choices under ambiguous conditions may lead both to accept the fact that clinical judgment is no more exempt from uncertainty than is physics [9]. The range of what may be facilitated by such acceptance extends from personal growth [10] to a decrease in the current rate of malpractice litigation. Moreover, the protocol, suitably modified, can be used in health promotion and presentation. For example. with hypertension and obesity the protocol can serve as a formal aid to eliciting a patient's values and encouraging his participation in the regimen, whereas the physician now must rely on informal methods such as setting treatment goals.

The alternatives to such a protocol are adopting a simple variant of the Living Will [1] or rejecting the possibility of documenting the patient's terminal care choices. Both alternatives avoid the costs of the protocol's length, complexity, and need for curricular revision. However, these alternatives, insofar as they leave the present situation of high uncertainty unaltered, have costs all their own.

[*] Abbreviated. For full training protocol, send stamped, self-addressed envelope to author.


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