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11/28/77 SUPERINTENDENT BELCHERTOWN STATE SCHOOL &

November 28, 1977

SUPERINTENDENT OF BELCHERTOWN STATE SCHOOL & ANOTHER
v.
JOSEPH SAIKEWICZ



Hampshire. Petition for guardianship filed in the Probate Court for the county of Hampshire on April 26, 1976. The case was reported to the Appeals Court by Jekanowski, J. The Supreme Judicial Court granted a request for direct review.

Hennessey, C.j., Braucher, Kaplan, Wilkins, & Liacos, JJ.

SYLLABUS BY THE COURT

Constitutional Law, Right to refuse medical treatment. Incompetent Person, Consent to medical treatment, Right to refuse medical treatment. Probate Court, Incompetent person.

The opinion of the court was delivered by: Liacos

Both the doctrine of informed consent and the constitutional right of privacy protect the right of a patient to refuse medical treatment in appropriate circumstances; in the case of an incompetent patient, the right may be asserted by a guardian. [737-740]

Identification of State interests which are to be weighed against a patient's right to refuse medical treatment. [740-744]

A probate Judge's decision that radical chemotherapy should not be administered to a sixty-seven year old severely retarded man suffering from cancer was consistent with a proper balancing of applicable State and individual interests. [744-745]

The right to refuse medical treatment in appropriate circumstances extends to incompetent persons. [745-746]

A decision whether to withhold medical treatment from a mentally incompetent person should conform as closely as possible to the decision which would be made by the incompetent person, if that person were competent, but taking into account his present and future incompetency as one of the factors which would necessarily enter into the decision-making process. [746-747]

A probate Judge's decision that chemotherapy should not be administered to a sixty-seven year old severely retarded man suffering from cancer was based on a regard for his actual interests and preferences and was supported by the evidence. [752-755]

A Probate Court is the appropriate forum for determining whether potentially life-prolonging treatment should be withheld from a person incapable of making his decision. [755-757]

Outline of appropriate procedures for determining whether life-prolonging medical treatment should be given to or withheld from a terminally-ill incompetent person. [757-759]

On April 26, 1976, William E. Jones, superintendent of the Belchertown State School (a facility of the Massachusetts Department of Mental Health), and Paul R. Rogers, a staff attorney at the school, petitioned the Probate Court for Hampshire County for the appointment of a guardian of Joseph Saikewicz, a resident of the State school. Simultaneously they filed a motion for the immediate appointment of a guardian ad litem, with authority to make the necessary decisions concerning the care and treatment of Saikewicz, who was suffering with acute myeloblastic monocytic leukemia. The petition alleged that Saikewicz was a mentally retarded person in urgent need of medical treatment and that he was a person with disability incapable of giving informed consent for such treatment.

On May 5, 1976, the probate Judge appointed a guardian ad litem. On May 6, 1976, the guardian ad litem filed a report with the court. The guardian ad litem's report indicated that Saikewicz's illness was an incurable one, and that although chemotherapy was the medically indicated course of treatment it would cause Saikewicz significant adverse side effects and discomfort. The guardian ad litem concluded that these factors, as well as the inability of the ward to understand the treatment to which he would be subjected and the fear and pain he would suffer as a result, outweighed the limited prospect of any benefit from such treatment, namely, the possibility of some uncertain but limited extension of life. He therefore recommended "that not treating Mr. Saikewicz would be in his best interests."

A hearing on the report was held on May 13, 1976. Present were the petitioners and the guardian ad litem. *fn1 The record before us does not indicate whether a guardian for Saikewicz was ever appointed. After hearing the evidence, the Judge entered findings of fact and an order that in essence agreed with the recommendation of the guardian ad litem. The decision of the Judge appears to be based in part on the testimony of Saikewicz's two attending physicians who recommended against chemotherapy. The Judge then reported to the Appeals Court the two questions set forth in the margin. *fn2 An application for direct appellate review was allowed by this court. On July 9, 1976, this court issued an order answering the questions reported in the affirmative with the notation "rescript and opinion . . . will follow." *fn3 We now issue that opinion.

I.

The Judge below found that Joseph Saikewicz, at the time the matter arose, was sixty-seven years old, with an I.Q. of ten and a mental age of approximately two years and eight months. He was profoundly mentally retarded. The record discloses that, apart from his leukemic condition, Saikewicz enjoyed generally good health. He was physically strong and well built, nutritionally nourished, and ambulatory. He was not, however, able to communicate verbally -- resorting to gestures and grunts to make his wishes known to others and responding only to gestures or physical contacts. In the course of treatment for various medical conditions arising during Saikewicz's residency at the school, he had been unable to respond intelligibly to inquiries such as whether he was experiencing pain. It was the opinion of a consulting psychologist, not contested by the other experts relied on by the Judge below, that Saikewicz was not aware of dangers and was disoriented outside his immediate environment. As a result of his condition, Saikewicz had lived in State institutions since 1923 and had resided at the Belchertown State School since 1928. Two of his sisters, the only members of his family who could be located, were notified of his condition and of the hearing, but they preferred not to attend or otherwise become involved.

On April 19, 1976, Saikewicz was diagnosed as suffering from acute myeloblastic monocytic leukemia. Leukemia is a disease of the blood. It arises when organs of the body produce an excessive number of white blood cells as well as other abnormal cellular structures, in particular undeveloped and immature white cells. Along with these symptoms in the composition of the blood the disease is accompanied by enlargement of the organs which produce the cells, e.g., the spleen, lymph glands, and bone marrow. The disease tends to cause internal bleeding and weakness, and, in the acute form, severe anemia and high susceptibility to infection. Attorneys' Dictionary of Medicine L-37-38 (1977). The particular form of the disease present in this case, acute myeloblastic monocytic leukemia is so defined because the particular cells which increase are the myeloblasts, the youngest form of a cell which at maturity is known as the granulocytes. Id. at M-138. The disease is invariably fatal.

Chemotherapy, as was testified to at the hearing in the Probate Court, involves the administration of drugs over several weeks, the purpose of which is to kill the leukemia cells. This treatment unfortunately affects normal cells as well. One expert testified that the end result, in effect, is to destroy the living vitality of the bone marrow. Because of this effect, the patient becomes very anemic and may bleed or suffer infections -- a condition which requires a number of blood transfusions. In this sense, the patient immediately becomes much "sicker" with the commencement of chemotherapy, and there is a possibility that infections during the initial period of severe anemia will prove fatal. Moreover, while most patients survive chemotherapy, remission of the leukemia is achieved in only thirty to fifty per cent of the cases. Remission is meant here as a temporary return to normal as measured by clinical and laboratory means. If remission does occur, it typically lasts for between two and thirteen months although longer periods of remission are possible. Estimates of the effectiveness of chemotherapy are complicated in cases, such as the one presented here, in which the patient's age becomes a factor. According to the medical testimony before the court below, persons over age sixty have more difficulty tolerating chemotherapy and the treatment is likely to be less successful than in younger patients. *fn4 This prognosis may be compared with the doctors' estimates that, left untreated, a patient in Saikewicz's condition would live for a matter of weeks or, perhaps, several months. According to the testimony, a decision to allow the disease to run its natural course would not result in pain for the patient, and death would probably come without discomfort.

An important facet of the chemotherapy process, to which the Judge below directed careful attention, is the problem of serious adverse side effects caused by the treating drugs. Among these side effects are severe nausea, bladder irritation, numbness and tingling of the extremities, and loss of hair. The bladder irritation can be avoided, however, if the patient drinks fluids, and the nausea can be treated by drugs. It was the opinion of the guardian ad litem, as well as the doctors who testified before the probate Judge, that most people elect to suffer the side effects of chemotherapy rather than to allow their leukemia to run its natural course.

Drawing on the evidence before him including the testimony of the medical experts, and the report of the guardian ad litem, the probate Judge issued detailed findings with regard to the costs and benefits of allowing Saikewicz to undergo chemotherapy. The Judge's findings are reproduced in part here because of the importance of clearly delimiting the issues presented in this case. The Judge below found:

"5. That the majority of persons suffering from leukemia who are faced with a choice of receiving or foregoing such chemotherapy, and who are able to make an informed judgment thereon, choose to receive treatment in spite of its toxic side effects and risks of failure.

"6. That such toxic side effects of chemotherapy include pain and discomfort, depressed bone marrow, pronounced anemia, increased chance of infection, possible bladder irritation, and possible loss of hair.

"7. That administration of such chemotherapy requires cooperation from the patient over several weeks of time, which cooperation said JOSEPH SAIKEWICZ is unable to give due to his profound retardation. *fn5

"8. That, considering the age and general state of health of said JOSEPH SAIKEWICZ, there is only a 30-40 percent chance that chemotherapy will produce a remission of said leukemia, which remission would probably be for a period of time of from 2 to 13 months, but that said chemotherapy will certainly not completely cure such leukemia.

" 9. That if such chemotherapy is to be administered at all, it should be administered immediately, inasmuch as the risks involved will increase and the chances of successfully ...


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