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Document 1 of 1.
Superintendent of Belchertown State School
& another v. Joseph Saikewicz
[NO NUMBER IN ORIGINAL]
Supreme Judicial Court of Massachusetts
373 Mass. 728;
370 N.E.2d 417;
1977 Mass. LEXIS 1129
July 2, 1976, Argued
November 28, 1977, Decided
PRIOR HISTORY:
[***1]
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.
The case was submitted on briefs.
HEADNOTES:
Constitutional Law, Right to refuse medical treatment.
Incompetent Person, Consent to medical treatment, Right to refuse medical treatment.
Probate Court, Incompetent person.
SYLLABUS: 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
[***2] 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]
COUNSEL:
Robert M. Bonin, First Assistant Attorney General,
Stephen Schulz, Assistant Attorney General,
Paul R. Rogers, Special Assistant Attorney
[***3] General,
Judith Applebaum
& William Swartz, for the plaintiffs.
Patrick J. Melnik, guardian ad litem, for the defendant.
Jonathan Brant,
L. Scott Harshbarger
& Robert H. Bohn, Jr., Assistant Attorneys General, for Civil Rights and Liberties Division of the
Department of the Attorney General, amicus curiae.
William J. O'Neil, for the Mental Health Legal Advisors Committee, amicus curiae.
John C. Vincent, Jr.,
for Massachusetts Association for Retarded Citizens, Inc., amicus curiae.
Robert L. Burgdorf, Jr., David M. Simonson, Nancy B. Shuger
& Frank Laski, for Developmental Disabilities Law Project of the University of Maryland Law
School, amicus curiae.
JUDGES: Hennessey, C.J., Braucher, Kaplan, Wilkins,
& Liacos, JJ.
OPINIONBY: LIACOS
OPINION:
[*729]
[**419] 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
[***4] 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
[*730] 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."
[***5]
A hearing on the report was held on May 13, 1976. Present were the petitioners
and the guardian ad litem. n1 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. n2 An application for direct
appellate review was allowed by this court. On July 9, 1976,
[**420] this court issued an order answering the questions reported in the affirmative
with the notation
"rescript and
opinion . . . will follow." n3 We now issue that opinion.
- - - - - - - - - - - - - - - - - -Footnotes- - - - - - - - - - - - - - - - - -
n1 In addition to the report of the guardian ad litem, the probate judge had
before him the clinical team reports of a physician, a psychologist, and a
social worker, as required by G. L. c. 201,
§
6A. Expert testimony was taken from a staff physician of the Belchertown State
School and two consulting physicians from the Baystate Medical Center, formerly
Springfield Hospital.
[***6]
n2
"(1) Does the Probate Court under its general or any special jurisdiction have
the authority to order, in circumstances it deems appropriate, the withholding
of medical
treatment from a person even though such withholding of treatment might
contribute to a shortening of the life of such person?
"(2) On the facts reported in this case, is the Court correct in ordering that
no treatment be administered to said JOSEPH SAIKEWICZ now or at any time for
his condition of acute myeloblastic monocetic leukemia
except by further order of the Court?"
n3 After briefly reviewing the facts of the case, we stated in that order:
"Upon consideration, based upon the findings of the probate judge, we answer the
first question in the affirmative, and a majority of the Court answer the
second question in the affirmative. However, we emphasize that
upon receiving evidence of a significant change either in the medical condition
of Saikewicz or in the medical treatment available to him for successful
treatment of his condition, the probate judge may issue a further order."
- - - - - - - - - - - - - - - - -End Footnotes- - - - - - - - - - - - - - - - -
[*731] I.
The judge below found
[***7] 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,
[***8] 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.,
[*732] 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
[***9] 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
[***10]
[**421] below, persons over age sixty have more difficulty tolerating chemotherapy and
the treatment is likely to be less successful than in younger patients. n4
[*733] 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.
- - - - - - - - - - - - - - - - - -Footnotes- - - - - - - - - - - - - - - - - -
n4 On appeal, the petitioners have collected in their brief a number of recent
empirical
studies which cast doubt on the view that patients over sixty are less
successfully treated by chemotherapy. E.g., Bloomfield
& Theologides, Acute Granulocytic Leukemia in Elderly Patients,
226 J.A.M.A. 1190, 1192 (1973); Grann
& others, The Therapy of Acute Granulocytic Leukemia in Patients More Than Fifty
Years Old, 80 Annals Internal Med. 15, 16 (1974). (Acute myeloblastic
monocytic leukemia is a subcategory of acute granulocytic leukemia.) Other
experts maintain that older patients have lower remission rates and are more
vulnerable to the toxic effects of the administered drugs. E.g., Crosby,
Grounds for
Optimism in Treating Acute Granulocytic Leukemia, 134 Archives Internal Med.
177 (1974). None of these authorities was brought to the consideration of the
probate judge. We accept the judge's conclusion, based on the expert testimony
before him and in accordance with substantial medical evidence, that the
patient's age weighed against the successful
administration of chemotherapy. See note 17
infra.
- - - - - - - - - - - - - - - - -End Footnotes- - - - - - - - - - - - - - - - -
[***11]
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
[*734] who are faced with a choice of receiving or foregoing such
[***12] 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. n5
"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.
"
[**422] 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 bringing about remission will decrease as time goes by.
"10. That, at present, said JOSEPH SAIKEWICZ's
[***13] leukemia condition is stable and is not deteriorating.
"11. That said JOSEPH
SAIKEWICZ is not now in pain and will probably die within a matter of weeks or
months a relatively painless death due to the leukemia unless other factors
should intervene to themselves cause death.
[*735]
"12. That it is impossible to predict how long said JOSEPH SAIKEWICZ will
probably
live without chemotherapy or how long he will probably live with chemotherapy,
but it is to a very high degree medically likely that he will die sooner
without treatment than with it."
- - - - - - - - - - - - - - - - - -Footnotes- - - - - - - - - - - - - - - - - -
n5 There was testimony as to the importance of having the full cooperation of
the patient during the initial weeks of the chemotherapy process as well as
during follow-up visits. For example, the evidence was that it would be necessary to
administer drugs intravenously for extended periods of time -- twelve or
twenty-four hours a day for up to five days. The inability of Saikewicz to
comprehend the purpose of the treatment, combined with his physical strength,
led the doctors to testify that Saikewicz would
probably have to be restrained to prevent him from tampering with the
intravenous devices. Such forcible restraint could, in addition to increasing
the patient's discomfort, lead to complications such as pneumonia.
- - - - - - - - - - - - - - - - -End Footnotes- - - - - - - - - - - - - - - - -
[***14]
Balancing these various factors, the judge concluded that the following
considerations weighed
against administering chemotherapy to Saikewicz:
"(1) his age, (2) his inability to cooperate with the
treatment, (3) probable adverse side effects of treatment, (4) low chance of
producing remission, (5) the certainty that treatment will cause immediate
suffering, and (6) the quality of life possible for him even if the treatment
does bring about remission."
The following considerations were determined to weigh in
favor of
chemotherapy:
"(1) the chance that his life may be lengthened thereby, and (2) the fact that
most people in his situation when given a chance to do so elect to take the
gamble of treatment."
Concluding that, in this case, the negative factors of treatment exceeded the
benefits, the probate judge ordered on May 13, 1976, that no treatment be
administered to Saikewicz for his condition of acute myeloblastic monocytic
leukemia except by further order of the court. The judge further ordered that
all reasonable and necessary supportive measures be taken, medical or
otherwise, to safeguard the well-being of Saikewicz in all other respects and
to reduce as far as
[***15] possible any suffering or discomfort which he
might experience.
It is within this factual context that we issued our order of July 9, 1976.
Saikewicz died on September 4, 1976, at the Belchertown State School hospital.
Death was due to bronchial pneumonia, a complication of the leukemia.
Saikewicz died without pain or discomfort. n6
- - - - - - - - - - - - - - - - - -Footnotes- - - - - - - - - - - - - - - - - -
n6 This information
comes to us from the supplemental briefs of the parties.
- - - - - - - - - - - - - - - - -End Footnotes- - - - - - - - - - - - - - - - -
[*736] II.
We recognize at the outset that this case presents novel issues of fundamental
importance that should not be resolved by mechanical reliance on legal
doctrine. Our task of establishing a framework in the law on which the
activities of health care personnel and other persons can
find support is furthered by seeking the collective guidance of those in health
care, moral ethics, philosophy, and other disciplines. Our attempt to bring
such insights to bear in the legal context has been advanced by the diligent
efforts of the guardian ad litem and the probate judge, as well as the excellent
[***16] briefs of the parties and
amici curiae. n7 As thus illuminated, the principal areas of determination are:
A. The nature of the right of any person, competent or incompetent, to decline
potentially life-prolonging treatment.
B. The legal standards that control the course of decision whether or not
potentially life-prolonging, but not life-saving, treatment should be
administered to a
person who is not competent to make the choice.
[**423] C. The procedures that must be followed in arriving at that decision.
- - - - - - - - - - - - - - - - - -Footnotes- - - - - - - - - - - - - - - - - -
n7 Submitting the brief for the defendant was the guardian ad litem, Patrick J.
Melnik. The Attorney General submitted the brief for the plaintiffs. The
Civil Rights and Liberties Division of the Department of the
Attorney General prepared a brief amicus curiae on behalf of the defendant.
Briefs amicus curiae were also submitted by the Mental Health Legal Advisors
Committee, the Massachusetts Association for Retarded Citizens, Inc., and the
Developmental Disabilities Law Project of the University of Maryland Law School.
- - - - - - - - - - - - - - - - -End Footnotes- - - - - - - - - - - - - - - - -
[***17]
For reasons we develop in the body of this opinion, it becomes apparent that
the questions to be discussed in the first two areas are closely interrelated.
We take the view that the substantive rights of the competent and the
incompetent person are the same in regard to the right to decline potentially
life-prolonging treatment. The factors which distinguish the two
types of persons are found only in the area of how the State should approach
the preservation and implementation of the rights of an incompetent
[*737] person and in the procedures necessary to that process of preservation and
implementation. We treat the matter in the sequence above stated because we
think it helpful to set forth our views on (A) what the rights of all persons
in this
area are and (B) the issue of how an incompetent person is to be afforded the
status in law of a competent person with respect to such rights. Only then can
we proceed to (C) the particular procedures to be followed to ensure the rights
of the incompetent person.
A.
1. It has been said that
"[t]he law always lags behind the most advanced
thinking in every area. It must wait until the theologians and the moral
leaders and events
[***18] have created some common ground, some consensus." Burger, The Law and Medical Advances, 67 Annals Internal Med. Supp. 7, 15, 17
(1967), quoted in Elkinton, The Dying Patient, the Doctor, and the Law,
13 Vill. L. Rev. 740 (1968). We therefore think it advisable to consider the framework of medical ethics
which influences a doctor's decision as to how to deal with the terminally ill
patient. While these considerations are not controlling, they ought to be
considered for the insights they give us.
Advances in medical science have given
doctors greater control over the time and nature of death. Chemotherapy is, as
evident from our previous discussion, one of these advances. Prior to the
development of such new techniques the physician perceived his duty as that of
making every conceivable effort to prolong life. On the other hand, the
context in which such an ethos prevailed did not provide the range of
options available to the physician today in terms of taking steps to postpone
death irrespective of the effect on the patient. With the development of the
new techniques, serious questions as to what may constitute acting in the best
interests of the patient have arisen.
The nature
[***19] of the choice has become more difficult because physicians have begun to
realize that in
many cases the effect of using extraordinary measures to prolong life is to
"only prolong suffering, isolate the family from their
[*738] loved one at a time when they may be close at hand or result in economic ruin
for the family." Lewis, Machine Medicine and Its Relation to the Fatally Ill,
206 J.A.M.A. 387 (1968).
Recognition of these factors led the Supreme Court of New Jersey to observe
"that physicians distinguish between curing the ill and comforting and easing
the dying; that they refuse to treat the curable as if they were dying or ought
to die, and that they have sometimes refused to treat the hopeless and dying as
if they were curable."
In re Quinlan, 70 N.J. 10, 47 (1976).
The essence of this distinction in defining the medical role is to draw the
sometimes subtle distinction between those situations in which the withholding
of extraordinary measures may be viewed as allowing the disease to take its
natural course and those in which the same actions may be deemed to have been
the cause of death. See Elkinton,
supra at
743. Recent literature suggests that health care
[***20] institutions are drawing such a distinction, at least with regard to
respecting the decision of competent patients to refuse such measures. Rabkin,
Gillerman
& Rice, Orders Not to Resuscitate, 293 N.E.J. of Med. 364 (1976). Cf. Beecher,
Ethical Problems Created by the
Hopelessly Unconscious Patient, 278 N.E.J. of Med. 1425 (1968).
[**424] The current state of medical ethics in this area is expressed by one
commentator who states that:
"we should not use
extraordinary means of prolonging life or its semblance when, after careful consideration,
consultation and the application of the most well conceived therapy it
becomes apparent that there is no hope for the recovery of the patient.
Recovery should not be defined simply as the ability to remain alive; it should
mean life without intolerable suffering." Lewis,
supra. See Collins, Limits of Medical Responsibility in Prolonging Life,
206 J.A.M.A. 389 (1968); Williamson, Life or
Death -- Whose Decision?
197 J.A.M.A. 793 (1966).
Our decision in this case is consistent with the current medical ethos in this
area.
2. There is implicit recognition in the law of the Commonwealth,
[*739] as elsewhere, that a person has
[***21] a strong interest in being free from nonconsensual invasion of his bodily
integrity.
Thibault v. Lalumiere, 318 Mass. 72 (1945).
Commonwealth v. Clark, 2 Met. 23 (1840).
Union Pac. Ry. v. Botsford, 141 U.S. 250, 251 (1891). In short, the law recognizes the individual interest in preserving
"the inviolability of his person."
Pratt v. Davis, 118 Ill. App. 161, 166 (1905), aff'd,
224 Ill. 300 (1906). One means by which the law has developed in a manner consistent with the
protection of this interest is through the development of the doctrine of
informed consent. While the doctrine to the extent it may justify recovery in
tort for the breach of a physician's duty has not been formally recognized by
this court,
Schroeder v. Lawrence, 372 Mass. 1 (1977); see
Baird v. Attorney Gen., 371 Mass. 741 (1977);
Reddington v. Clayman, 334 Mass. 244 (1956); G.
L. c. 112,
§ 12F, it is one of widespread recognition. Capron, Informed Consent in
Catastrophic Disease Research and Treatment,
123 U. Pa. L. Rev. 340, 365 (1975); Cantor, A Patient's Decision to Decline Life-Saving Medical Treatment: Bodily
Integrity
Versus the Preservation of Life,
[***22]
26 Rutgers L. Rev. 228, 236-238 (1973). W. Prosser, Torts
§ 18 (4th ed. 1971). As previously suggested, one of the foundations of the
doctrine is that it protects the patient's status as a human being. Capron,
supra at 366-367.
Of even
broader import, but arising from the same regard for human dignity and
self-determination, is the unwritten constitutional right of privacy found in
the penumbra of specific guaranties of the Bill of Rights.
Griswold v. Connecticut, 381 U.S. 479, 484 (1965). As this constitutional guaranty reaches out to protect the
freedom of a woman to terminate pregnancy under certain conditions,
Roe v. Wade, 410 U.S. 113, 153 (1973), so it encompasses the right of a patient to preserve his or her right to
privacy against unwanted infringements of bodily integrity in appropriate
circumstances.
In re Quinlan, supra at 38-39. In the case of a person incompetent to assert this constitutional right of
privacy, it may be asserted by that person's guardian in conformance with the
standards and procedures
[*740] set forth in sections II (B) and II (C) of this opinion. See
Quinlan at 39.
3. The question when the circumstances are
appropriate
[***23] for the exercise of this privacy right depends on the proper identification of
State interests. It is not surprising that courts have, in the course of
investigating State interests in various medical contexts and under various
formulations of the individual rights involved, reached differing views on the
nature and the extent of State interests. We have
undertaken a survey of some of the leading cases to help in identifying the
range of State interests potentially applicable to cases of medical
intervention.
In a number of cases, no applicable State interest, or combination of such
interests, was found sufficient to outweigh the individual's interests in
exercising the choice of
[**425] refusing
medical treatment. To this effect are
Erickson v. Dilgard, 44 Misc. 2d 27 (N.Y. Sup. Ct. 1962) (scheme of liberty puts highest priority on free individual choice);
In re Estate of Brooks, 32 Ill. 2d 361 (1965) (patient may elect to pursue
religious beliefs by refusing life-saving blood transfusion provided the
decision did not endanger public health, safety or morals); see
In re Osborne, 294 A.2d 372 (D.C. Ct. App. 1972);
Holmes v. Silver Cross Hosp., 340 F.
[***24] Supp. 125 (D. Ill. 1972); Byrn, Compulsory Lifesaving Treatment for the Competent Adult,
44 Fordham L. Rev. 1 (1975). See also
In re Guardianship of Pescinski, 67 Wis. 2d 4 (1975).
Subordination of State interests to individual interests has not been
universal, however.
In a leading case,
Application of the President & Directors of Georgetown College, Inc., 331 F.2d 1000 (D.C. Cir.), cert. denied,
377 U.S. 978 (1964), a hospital sought permission to perform a blood transfusion necessary to save
the patient's life where the person was
unwilling to consent due to religious beliefs. The court held that it had the
power to allow the action to be taken despite the previously expressed contrary
sentiments of the patient. The court justified its decision by reasoning that
its purpose was to protect three State interests, the protection of which was
viewed as having
[*741] greater import than the individual right: (1) the State
interest in preventing suicide, (2) a parens patriae interest in protecting the
patient's minor children from
"abandonment" by their parent, and (3) the protection of the medical profession's desire to
act affirmatively to save life without fear of
[***25] civil liability. In
John F. Kennedy Memorial Hosp. v. Heston, 58 N.J. 576 (1971), a case involving a fact situation similar to
Georgetown, the New Jersey Supreme Court also allowed a transfusion. It based its
decision on
Georgetown, as well as its prior decisions. See
Raleigh Fitkin-Paul Morgan Memorial Hosp. v. Anderson, 42 N.J. 421, cert. denied,
377 U.S. 985 (1964); n8
State v. Perricone, 37 N.J. 463, cert. denied,
371 U.S. 890 (1962). The New Jersey court held that the State's paramount interest in preserving
life and the hospital's
interest in fully caring for a patient under its custody and control outweighed
the individual decision to decline the necessary measures. See
United States v. George, 239 F. Supp. 752 (D. Conn. 1965);
Long Island Jewish-Hillside Medical Center v. Levitt, 73 Misc. 2d 395 (N.Y. Sup. Ct. 1973);
In re Sampson, 65 Misc. 2d 658 (Fam. Ct. 1970), aff'd
37 App. Div. 2d 668 (1971), aff'd per curiam,
29 N.Y.2d 900 (1972);
In re Weberlist, 79 Misc. 2d 753 (N.Y. Sup. Ct. 1974);
In re Karwath, 199 N.W.2d 147 (Iowa 1972).
- - - - - - - - - - - - - - - - - -Footnotes- - - - - - - - - - - - - - - - - -
n8 While
Quinlan would seem to limit the effect of these decisions, the opinion therein does
not make clear the extent to which this is so.
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[***26]
This survey of
recent decisions involving the difficult question of the right of an individual
to refuse medical intervention or treatment indicates that a relatively concise
statement of countervailing State interests may be made. As distilled from the
cases, the State has claimed interest in: (1) the preservation of life; (2) the
protection of the interests of innocent third
parties; (3) the prevention of suicide; and (4) maintaining the ethical
integrity of the medical profession.
It is clear that the most significant of the asserted State interests is that
of the preservation of human life. Recognition of such an interest, however,
does not necessarily
[*742] resolve the problem where the affliction or disease clearly indicates that
life will soon, and inevitably, be extinguished. The interest of the
State in prolonging a life must be reconciled with the interest of an
individual to reject the traumatic cost of that prolongation. There is a
substantial distinction in the State's insistence that human life be saved
where the
[**426] affliction is curable, as opposed to the State interest where, as here, the
issue is not whether, but when, for how long, and at what
[***27] cost to the individual that
life may be briefly extended. Even if we assume that the State has an
additional interest in seeing to it that individual decisions on the
prolongation of life do not in any way tend to
"cheapen" the value which is placed in the concept of living, see
Roe v. Wade, supra, we believe it is not inconsistent to recognize a
right to decline medical treatment in a situation of incurable illness. The
constitutional right to privacy, as we conceive it, is an expression of the
sanctity of individual free choice and self-determination as fundamental
constituents of life. The value of life as so perceived is lessened not by a
decision to refuse treatment, but by the
failure to allow a competent human being the right of choice. n9
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n9
Commonwealth v. O'Neal, 367 Mass. 440 (1975), does not compel a different result. That case considered the magnitude of the
State interest in preserving life in the context of an intentional State
deprivation. It does not apply to a situation where an individual, without
State involvement, may make a decision resulting in the shortening of life by
natural causes.
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[***28]
A second interest of considerable magnitude, which the State may have some
interest in asserting, is that of protecting third parties,
particularly minor children, from the emotional and financial damage which may
occur as a result of the decision of a competent adult to refuse lifesaving or
life-prolonging treatment. Thus, in
Holmes v. Silver Cross Hosp., 340 F. Supp. 125 (D. Ill. 1972), the court held that, while the
State's interest in preserving an individual's life was not sufficient, by
itself, to outweigh the individual's interest in the exercise of free choice,
the possible impact on minor children would be a factor which
[*743] might have a critical effect on the outcome of the balancing process.
Similarly, in the
Georgetown case the court
held that one of the interests requiring protection was that of the minor child
in order to avoid the effect of
"abandonment" on that child as a result of the parent's decision to refuse the necessary
medical measures. See Byrn,
supra at 33;
United States v. George, supra. n10 We need not reach this aspect of
claimed State interest as it is not in issue on the facts of this case.
- - - - - - - - - - - - - - - - - -Footnotes- - - - - - - - - - - - - - - - - -
n10 The nature of the third-party interest discussed here is not one where the
decision has clear, immediate, and adverse effects on the third party such as
in
Raleigh Fitkin-Paul Morgan Memorial Hosp., supra, where a blood transfusion was
necessary to preserve the life of a child in utero, as well as the mother.
Clearly, different considerations are presented in such a case.
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[***29]
The last State interest requiring discussion n11 is that of the maintenance of
the ethical integrity of the medical profession as well as allowing hospitals
the full opportunity to care
for people under their control. See
Georgetown, supra;
United States v. George, supra;
John F. Kennedy Memorial Hosp. v. Heston, supra. The force and impact of this interest is lessened by the prevailing medical
ethical standards, see Byrn,
supra at 31. Prevailing medical
ethical practice does not, without exception, demand that all efforts toward
life prolongation be made in all circumstances. Rather, as indicated in
Quinlan, the prevailing ethical practice seems to be to recognize that the dying are
more often in need of comfort than treatment. Recognition of the right to
refuse necessary treatment in
appropriate
[*744] circumstances is consistent with existing medical mores; such a doctrine does
not threaten either the integrity of the
[**427] medical profession, the proper role of hospitals in caring for such patients
or the State's interest in protecting the same. It is not necessary to deny a
right of self-determination to a patient
in order to recognize the
[***30] interests of doctors, hospitals, and medical personnel in attendance on the
patient. Also, if the doctrines of informed consent and right of privacy have
as their foundations the right to bodily integrity, see
Union Pac. Ry. v. Botsford, 141 U.S. 250 (1891), and control of one's own fate, then those rights are
superior to the institutional considerations. n12
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n11 The interest in protecting against suicide seems to require little if any
discussion. In the case of the competent adult's refusing medical treatment
such an act does not necessarily constitute suicide since (1) in refusing
treatment the patient may not have the
specific intent to die, and (2) even if he did, to the extent that the cause of
death was from natural causes the patient did not set the death producing agent
in motion with the intent of causing his own death. Byrn,
supra at 17-18. Cantor,
supra at 255. Furthermore, the underlying State interest in this area
lies in the prevention of irrational self-destruction. What we consider here
is a competent, rational decision to refuse treatment when death is inevitable
and the treatment offers no hope of cure or preservation of life. There is no
connection between the conduct here in issue and any State concern to prevent
suicide. Cantor,
supra at 258.
[***31]
n12 Any threats of civil liability may be removed by a valid giving or
withholding of consent by an informed patient. See generally Note, Statutory
Recognition of the Right to Die: The California Natural Death Act,
57 B.U.L. Rev. 148 (1977), for a comprehensive discussion of the
common law foundations of physicians' duties and patients' rights, one
legislative attempt to modernize the law, and an analysis of the ramifications
for doctors and patients of recognizing the option of withholding
life-sustaining procedures from a patient incapable of indicating his or her
wishes.
- - - - - - - - - - - - - - - - -End Footnotes- - - - - - - - - - - - - - - - -
Applying the considerations discussed in this subsection to the
decision made by the probate judge in the circumstances of the case before us,
we are satisfied that his decision was consistent with a proper balancing of
applicable State and individual interests. Two of the four categories of State
interests that we have identified, the protection of third parties and the
prevention of suicide, are inapplicable to this case. The third, involving the
protection of the
ethical integrity of the medical profession was satisfied
[***32] on two grounds. The probate judge's decision was in accord with the testimony
of the attending physicians of the patient. The decision is in accord with the
generally accepted views of the medical profession, as set forth in this
opinion. The fourth State interest -- the preservation of life -- has been
viewed with proper
regard for the heavy physical and emotional burdens on the patient if a
vigorous regimen of drug therapy were to be imposed to effect a brief and
uncertain delay in the natural process of death. To be balanced against these
State interests was the individual's
[*745] interest in the freedom to choose to reject, or refuse to consent to,
intrusions of his
bodily integrity and privacy. We cannot say that the facts of this case
required a result contrary to that reached by the probate judge with regard to
the right of any person, competent or incompetent, to be spared the deleterious
consequences of life-prolonging treatment. We therefore turn to consider the
unique considerations arising in this case by virtue of the
patient's inability to appreciate his predicament and articulate his desires.
B.
The question what legal standards govern the decision whether
[***33] to administer potentially life-prolonging treatment to an incompetent person
encompasses two distinct and important subissues. First, does a choice exist?
That is, is it the unvarying responsibility of the State to order medical
treatment in all
circumstances involving the care of an incompetent person? Second, if a choice
does exist under certain conditions, what considerations enter into the
decision-making process?
We think that principles of equality and respect for all individuals require
the conclusion that a choice exists. For reasons discussed at some length in
subsection A,
supra, we recognize a general right in all persons to refuse medical treatment in
appropriate circumstances. The recognition of that right must extend to the
case of an incompetent, as well as a competent, patient because the value of
human dignity extends to both.
This is not to deny that the State has a traditional power and responsibility,
under the doctrine of parens patriae, to care for and protect the
"best interests" of the incompetent person. Indeed, the existence of this power and
responsibility has impelled a number of courts to hold that the
"best interests" of such a person mandate
[***34] an unvarying responsibility by the courts to order necessary medical treatment
for an incompetent
person facing an immediate
[**428] and severe danger to life.
Application of the President & Directors of Georgetown College, Inc., 331 F.2d 1000
[*746] (D.C. Cir.), cert. denied,
377 U.S. 978 (1964).
Long Island Jewish-Hillside Medical Center v. Levitt, 73 Misc. 2d 395 (N.Y. Sup. Ct. 1973). Cf.
In re Weberlist, 79 Misc. 2d 753 (N.Y. Sup. Ct. 1974). Whatever the merits of such a policy where life-saving treatment is available
-- a situation unfortunately not presented by this case -- a more flexible
view of the
"best interests" of the incompetent patient is not precluded under other conditions. For
example, other courts have refused to take it on themselves to order certain
forms of treatment or therapy which are not immediately required although
concededly beneficial to the innocent person.
In re CFB, 497 S.W.2d 831 (Mo. App. 1973).
Green's Appeal, 448 Pa. 338 (1972).
In re Frank, 41 Wash. 2d 294 (1952). Cf.
In re Rotkowitz, 175 Misc. 948 (N.Y. Dom. Rel. Ct. 1941);
Mitchell v. Davis, 205 S.W.2d 812 (Tex. App. 1947). While some of these
[***35] cases involve children who might eventually be competent to make the necessary
decisions without judicial interference, it is also clear that the additional
period of waiting might make the task of correction more difficult. See, e.g.,
In re Frank, supra. These cases
stand for the proposition that, even in the exercise of the parens patriae
power, there must be respect for the bodily integrity of the child or respect
for the rational decision of those parties, usually the parents, who for one
reason or another are seeking to protect the bodily integrity or other personal
interest of the child. See
In re Hudson, 13 Wash. 2d 673 (1942).
The
"best interests" of an incompetent person are not necessarily served by imposing on such
persons results not mandated as to competent persons similarly situated. It
does not advance the interest of the State or the ward to treat the ward as a
person of lesser
status or dignity than others. To protect the incompetent person within its
power, the State must recognize the dignity and worth of such a person and
afford to that person the same panoply of rights and choices it recognizes in
competent persons. If a competent person faced with
[***36] death may choose to decline treatment which not
only will not cure the person but
[*747] which substantially may increase suffering in exchange for a possible yet
brief prolongation of life, then it cannot be said that it is always in the
"best interests" of the ward to require submission to such treatment. Nor do statistical
factors indicating that a majority of competent persons
similarly situated choose treatment resolve the issue. The significant
decisions of life are more complex than statistical determinations. Individual
choice is determined not by the vote of the majority but by the complexities of
the singular situation viewed from the unique perspective of the person called
on to make the decision. To presume that the incompetent person
must always be subjected to what many rational and intelligent persons may
decline is to downgrade the status of the incompetent person by placing a
lesser value on his intrinsic human worth and vitality.
The trend in the law has been to give incompetent persons the same rights as
other individuals.
Boyd v. Registrars of Voters of Belchertown, 368 Mass. 631 (1975). Recognition of this principle of equality requires understanding
[***37] that in certain circumstances it may be appropriate for a court to consent to
the withholding of treatment from an incompetent individual. This leads us to
the question of how the right of an incompetent person to decline treatment
might best be exercised so as to
give the fullest possible expression to the character and circumstances of that
individual.
The problem of decision-making presented in this case is one of first
impression before this court, and we know of no decision in other jurisdictions
squarely on point. The well publicized decision of the New Jersey Court in
In re Quinlan, 70 N.J. 10
[**429] (1976), provides a helpful starting point for analysis, however.
Karen Ann Quinlan, then age twenty-one, stopped breathing for reasons not
clearly identified for at least two fifteen-minute periods on the night of
April 15, 1975. As
a result, this formerly healthy individual suffered severe brain damage to the
extent that medical experts characterized her as being in a
"chronic persistent vegetative
[*748] state."
Id. at 24. Although her brain was capable of a certain degree of primitive reflex-level
functioning, she had no cognitive function or
awareness
[***38] of her surroundings. Karen Quinlan did not, however, exhibit any of the signs
of
"brain death" as identified by the Ad Hoc Committee of the Harvard Medical School. n13 She
was thus
"alive" under controlling legal and medical standards.
Id. at 25. Nonetheless, it was the opinion of the experts and conclusion of the court
that there was no reasonable possibility that she would ever be restored to
cognitive or sapient life.
Id. at 26. Her breathing was assisted by a respirator, without which the experts believed
she could not survive. It was for the purpose of getting authority to order
the disconnection of the respirator that Quinlan's father petitioned the lower
New Jersey court.
- - - - - - - - - - - - - - - - - -Footnotes- - - - - - - - - - - - - - - - - -
n13 The brain death criteria developed
by the Ad Hoc Committee was recently recognized by this court as a medically
and legally acceptable definition of death.
Commonwealth
v. Golston, ante, 249, 251-255 (1977).
- - - - - - - - - - - - - - - - -End Footnotes- - - - - - - - - - - - - - - - -
The Supreme Court of New Jersey, in a unanimous opinion written by Chief
Justice Hughes, held that the
[***39] father, as guardian, could, subject to certain qualifications, n14 exercise
his daughter's right to privacy by authorizing removal of the artificial
life-support systems.
Id. at 55. The court thus recognized that the preservation of the personal right to
privacy against bodily intrusions, not exercisable directly due to the
incompetence of the rightholder, depended on its indirect exercise by one
acting on behalf of the incompetent person. The exposition by the New Jersey
court of the principle of substituted judgment, and of the legal standards that
were to be applied by the guardian in making this decision, bears repetition
here.
- - - - - - - - - - - - - - - - - -Footnotes- - - - - - - - - - - - - - - - - -
n14 The mandatory involvement of the family, attending
doctors, and the hospital
"ethics committee" was also provided for by the court. See note 20
infra.
- - - - - - - - - - - - - - - - -End Footnotes- - - - - - - - - - - - - - - - -
"If a putative decision by Karen to permit this noncognitive, vegetative
existence to terminate by natural forces is regarded as a valuable incident of
her right of privacy, as we believe it to be, then it should not be
[***40]
discarded
[*749] solely on the basis that her condition prevents her conscious exercise of the
choice. The only practical way to prevent destruction of the right is to
permit the guardian and family of Karen to render their best judgment, subject to the qualifications [regarding consultation with attending
physicians and hospital 'Ethics Committee'] hereinafter stated,
as to whether she would exercise it in these circumstances. If their
conclusion is in the affirmative this decision should be accepted by a society
the overwhelming majority of whose members would, we think, in similar
circumstances, exercise such a choice in the same way for themselves or for
those closest to them. It is for this reason that we determine that Karen's
right of privacy may be asserted in her behalf,
in this respect, by her guardian and family under the particular circumstances
presented by this record" (emphasis supplied).
Id. at 41-42.
The court's observation that most people in like circumstances would choose a
natural death does not, we believe, detract from or modify the central concern
that the guardian's decision
conform, to the extent possible, to the decision that would
[***41] have been made by Karen Quinlan herself. Evidence that most people would or
would not act in a certain way is certainly an important consideration in
attempting to ascertain the predilections of any individual, but care must be
taken, as in any analogy, to ensure that operative factors are
similar or at least to take notice of the dissimilarities. With this in mind,
it is profitable to compare the situations presented in the
[**430]
Quinlan case and the case presently before us. Karen Quinlan, subsequent to her
accident, was totally incapable of knowing or appreciating life, was physically
debilitated, and was pathetically reliant on sophisticated machinery to nourish
and clean her body. Any
other person suffering from similar massive brain damage would be in a similar
state of total incapacity, and thus it is not unreasonable to give weight to a
supposed general, and widespread, response to the situation.
Karen Quinlan's situation, however, must be distinguished
[*750] from that of Joseph Saikewicz. Saikewicz was profoundly mentally retarded.
His mental
state was a cognitive one but limited in his capacity to comprehend and
communicate. Evidence that most people
[***42] choose to accept the rigors of chemotherapy has no direct bearing on the
likely choice that Joseph Saikewicz would have made. Unlike most people,
Saikewicz had no capacity to understand his present situation or his prognosis.
The
guardian ad litem gave expression to this important distinction in coming to
grips with this
"most troubling aspect" of withholding treatment from Saikewicz:
"If he is treated with toxic drugs he will be involuntarily immersed in a state
of painful suffering, the reason for which he will never understand. Patients
who request treatment
know the risks involved and can appreciate the painful side-effects when they
arrive. They know the reason for the pain and their hope makes it tolerable." To make a worthwhile comparison, one would have to ask whether a majority of
people would choose chemotherapy if they were told merely that something
outside of their previous experience was going to be done to them, that this
something would cause them pain and discomfort, that they would be removed to
strange surroundings and possibly restrained for extended periods of time, and
that the advantages of this course of action were measured by concepts of time
and mortality
[***43] beyond their ability to comprehend.
To put the above discussion in proper perspective, we realize that an inquiry
into what a majority of people would do
in circumstances that truly were similar assumes an objective viewpoint not far
removed from a
"reasonable person" inquiry. While we recognize the value of this kind of indirect evidence, we
should make it plain that the primary test is subjective in nature -- that is,
the goal is to determine with as much accuracy as possible the wants and needs
of the individual
involved. n15 This may or may
[*751] not conform to what is thought wise or prudent by most people. The problems
of arriving at an accurate substituted judgment in matters of life and death
vary greatly in degree, if not in kind, in different circumstances. For
example, the responsibility of Karen
Quinlan's father to act as she would have wanted could be discharged by drawing
on many years of what was apparently an affectionate and close relationship.
In contrast, Joseph Saikewicz was profoundly retarded and noncommunicative his
entire life, which was spent largely in the highly restrictive atmosphere of an
institution. While it may thus be necessary to rely to
[***44] a greater
degree on objective criteria, such as the supposed inability of profoundly
retarded persons to conceptualize or fear death, the effort to bring the
[**431] substituted judgment into step with the values and desires of the affected
individual must not, and need not, be abandoned.
- - - - - - - - - - - - - - - - - -Footnotes- - - - - - - - - - - - - - - - - -
n15 In arriving at a philosophical rationale in support of a
theory of substituted judgment in the context of organ transplants from
incompetent persons, Professor Robertson of the University of Wisconsin Law
School argued that
"maintaining the integrity of the person means that we act toward him 'as we
have reason to believe [he] would choose for [himself] if [he] were [capable]
of reason and deciding rationally.' It does not provide a license to
impute to him preferences he never had or to ignore previous preferences. . . .
If preferences are unknown, we must act with respect to the preferences a
reasonable, competent person in the incompetent's situation would have." Robertson, Organ Donations by Incompetents and the Substituted Judgment
Doctrine,
76 Colum. L. Rev. 48, 63 (1976), quoting
J. Rawls, A Theory of Justice, 209 (1971). In this way, the
"free choice and moral dignity" of the incompetent person would be recognized.
"Even if we were mistaken in ascertaining his preferences, the person [if he
somehow became competent] could still agree that he had been fairly treated, if
we had a good reason for thinking he would have made the
choices imputed to him." Robertson,
supra at 63.
- - - - - - - - - - - - - - - - -End Footnotes- - - - - - - - - - - - - - - - -
[***45]
The
"substituted judgment" standard which we have described commends itself simply because of its
straightforward respect for the integrity and autonomy of the individual. We
need not, however, ignore the substantial pedigree that accompanies this
phrase. The doctrine of substituted judgment had its origin over 150 years ago
in the area of the administration of the estate of an incompetent person.
Ex parte Whitbread in
re Hinde, a Lunatic, 35 Eng. Rep. 878 (1816). The doctrine was utilized to authorize a gift from the estate of an
incompetent person
[*752] to an individual when the incompetent owed no duty of support. The English
court
accomplished this purpose by substituting itself as nearly as possible for the
incompetent, and acting on the same motives and considerations as would have
moved him.
City Bank Farmers Trust Co. v. McGowan, 323 U.S. 594, 599 (1945). In essence, the doctrine in its inception called on the court to
"don the mental
mantle of the incompetent."
In re Carson, 39 Misc. 2d 544, 545 (N.Y. Sup. Ct. 1962). Cf.
Strange v. Powers, 358 Mass. 126 (1970).
In modern times the doctrine of substituted judgment has been applied as a
vehicle
[***46] of decision in cases more
analogous to the situation presented in this case. In a leading decision on
this point,
Strunk v. Strunk, 445 S.W.2d 145 (Ky. Ct. App. 1969), the court held that a court of equity had the power to permit removal of a
kidney from an incompetent donor for purposes of
effectuating a transplant. The court concluded that, due to the nature of
their relationship, both parties would benefit from the completion of the
procedure, and hence the court could presume that the prospective donor would,
if competent, assent to the procedure. Accord,
Hart v. Brown, 29 Conn. Supp. 368 (1972). But see
In re Guardianship of Pescinski, 67 Wis. 2d 4 (1975). See generally Baron and others, Life Organ and Tissue Transplants from Minor
Donors in Massachusetts,
55 B.U.L. Rev. 159 (1975). n16
- - - - - - - - - - - - - - - - - -Footnotes- - - - - - - - - - - - - - - - - -
n16 In a similar matter before a single justice of this court,
Nathan
v. Farinelli, Suffolk Eq. 74-87, use of the doctrine was rejected, but primarily because
the facts of the case involved potential conflicts of interest and made it
inapplicable.
- - - - - - - - - - - - - - - - -End Footnotes- - - - - - - - - - - - - - - - -
[***47]
With this historical perspective, we now reiterate the substituted judgment
doctrine as we apply it in the instant case. We believe that both the guardian
ad litem in his recommendation and the judge in his decision should have
attempted (as they did) to ascertain the incompetent person's actual interests
and preferences. In short, the decision in cases such as this should be that
which would be made by the incompetent person, if that person were competent,
but taking into account the present and
[*753] future incompetency of the individual as one of the factors which would
necessarily
enter into the decision-making process of the competent person. Having
recognized the right of a competent person to make for himself the same
decision as the court made in this case, the question is, do the facts on the
record support the proposition that Saikewicz himself would have made the
decision under the standard set forth. We believe they do.
The two
factors considered by the probate judge to weigh in favor of administering
chemotherapy were: (1) the fact that most people elect chemotherapy and (2) the
chance of a longer life. Both are appropriate indicators of what Saikewicz
himself
[***48] would have wanted, provided that due allowance is taken for this individual's
present and future
incompetency. We have already discussed the perspective this brings to the
fact that most people choose to undergo chemotherapy. With regard to the
second factor, the chance of a longer life carries the same weight for
Saikewicz as for any other person, the value of life under the law having no
relation to intelligence or social position.
Intertwined with this consideration is the hope that a cure, temporary or
permanent, will be discovered during the period of extra weeks or months
[**432] potentially made available by chemotherapy. The guardian ad litem
investigated this possibility and found no reason to hope for a dramatic
breakthrough in the time frame
relevant to the decision.
The probate judge identified six factors weighing against administration of
chemotherapy. Four of these -- Saikewicz's age, n17 the probable side effects
of treatment, the low chance of producing remission, and the certainty that
treatment will cause immediate suffering -- were clearly established by the
medical testimony to be considerations
[*754] that any
individual would weigh carefully. A
[***49] fifth factor -- Saikewicz's inability to cooperate with the treatment --
introduces those considerations that are unique to this individual and which
therefore are essential to the proper exercise of substituted judgment. The
judge heard testimony that Saikewicz would have no comprehension of the reasons
for the severe disruption of his formerly secure and stable environment
occasioned by the
chemotherapy. He therefore would experience fear without the understanding
from which other patients draw strength. The inability to anticipate and
prepare for the severe side effects of the drugs leaves room only for confusion
and disorientation. The possibility that such a naturally uncooperative
patient would have to be physically restrained to allow the slow intravenous
administration of drugs could
only compound his pain and fear, as well as possibly jeopardize the ability of
his body to withstand the toxic effects of the drugs.
- - - - - - - - - - - - - - - - - -Footnotes- - - - - - - - - - - - - - - - - -
n17 This factor is relevant because of the medical evidence in the record that
people of Saikewicz's age do not tolerate the chemotherapy as well as younger
people and that the chance of a remission is decreased. Age is
irrelevant, of course, to the question of the value or quality of life.
- - - - - - - - - - - - - - - - -End Footnotes- - - - - - - - - - - - - - - - -
[***50]
The sixth factor identified by the judge as weighing against chemotherapy was
"the quality of life possible for him even if the treatment does bring about
remission." To the extent that this formulation equates the value of life with any measure
of the quality of life, we firmly reject it.
A reading of the entire record clearly reveals, however, the judge's concern
that special care be taken to respect the dignity and worth of Saikewicz's life
precisely because of his vulnerable position. The judge, as well as all the
parties, was keenly aware that the supposed inability of Saikewicz, by virtue
of his mental retardation, to appreciate or experience life had no
place in the decision before them. Rather than reading the judge's formulation
in a manner that demeans the value of the life of one who is mentally retarded,
the vague, and perhaps ill-chosen, term
"quality of life" should be understood as a reference to the continuing state of pain and
disorientation precipitated by the chemotherapy treatment.
Viewing the term in this manner, together with the other factors properly
considered by the judge, we are satisfied that the decision to withhold
treatment from Saikewicz was based
[***51]
[*755] on a regard for his actual interests and preferences and that the facts
supported this decision.
C.
We turn now to a consideration of the procedures appropriate for reaching
a decision where a person allegedly incompetent is in a position in which a
decision as to the giving or withholding of life-prolonging treatment must be
made. n18 As a preliminary matter, we briefly inquire into the powers of the
Probate Court in this context.
- - - - - - - - - - - - - - - - - -Footnotes- - - - - - - - - - - - - - - - - -
n18 We decline the invitation of several of the
amicus and party briefs to formulate a comprehensive set of guidelines
applicable generally to emergency medical situations involving incompetent
persons. Such a wide-ranging effort is better left to the legislative branch
after appropriate study.
- - - - - - - - - - - - - - - - -End Footnotes- - - - - - - - - - - - - - - - -
The Probate Court is a court of superior and general
jurisdiction. G. L. c. 215,
§ 2.
Wilder v. Orcutt, 257 Mass. 100 (1926). The Probate Court is given equity jurisdiction by statute. G. L. c. 215,
§ 6. It has been given the specific grant of equitable powers to
[***52] act in all matters
relating to guardianship. G. L. c. 215,
§ 6.
Buckingham v. Alden, 315 Mass. 383, 387 (1944). The Probate
[**433] Court has the power to appoint a guardian for a retarded person. G. L. c.
201,
§ 6A. It may also appoint a
temporary guardian of such a person where immediate action is required. G. L.
c. 201,
§ 14. Additionally, the Probate Court may appoint a guardian ad litem whenever
the court believes it necessary to protect the interests of a person in a
proceeding before it.
Buckingham v. Alden, supra. This power is inherent in the court even apart from statutory authorization,
and its exercise at times becomes necessary for the proper function of the
court.
Lynde v. Vose, 326 Mass. 621 (1951).
Buckingham v. Alden, supra.
In dealing with matters concerning a
person properly under the court's protective jurisdiction,
"[t]he court's action . . . is not limited by any narrow bounds, but it is
empowered to stretch forth its arm in whatever direction its aid and protection
may be needed."
In re Quinlan, 70 N.J. 10, 45 (1976), quoting from
27 Am. Jur. 2d Equity
[*756]
§ 69 (1966). In essence the powers of the
[***53] court to act in the best interests of a person under its jurisdiction,
Petition of the Dep't of Pub. Welfare to Dispense with
Consent to Adoption, 371 Mass. 651 (1976), must be broad and flexible enough
"to afford
whatever relief may be necessary to protect his interests."
Strunk v. Strunk, 445 S.W.2d 145, 147 (Ky. Ct. App. 1969), quoting from 27 Am. Jur. 2d Equity
§ 69, at 592 (1966). The Probate Court is the proper forum in which to
determine the need for the
appointment of a guardian or a guardian ad litem. It is also the proper
tribunal to determine the best interests of a ward.
In this case, a ward of a State institution was discovered to have an
invariably fatal illness, the only effective -- in the sense of life-prolonging
-- treatment for which involved serious and
painful intrusions on the patient's body. While an emergency existed with
regard to taking action to begin treatment, it was not a case in which
immediate action was required. Nor was this a case in which life-saving, as
distinguished from life-prolonging, procedures were available. Because the
individual involved was thought to be incompetent to make the necessary
decisions, the officials of the
[***54] State institutions properly initiated proceedings in the Probate Court.
The course of proceedings in such a case is readily determined by reference to
the applicable statutes. The first step is to petition the court for the
appointment of a guardian (G. L. c. 201,
§ 6A) or
a temporary guardian (G. L. c. 201,
§ 14). The decision under which of these two provisions to proceed will be
determined by the circumstances of the case, that is, whether the exigencies of
the situation allow time to comply with the seven-day notice requirement prior
to the hearing on the appointment of a guardian. G. L.
c. 201,
§§ 6A, 7. If appointment of a temporary guardian is sought, the probate judge
will make such orders regarding notice as he deems appropriate. G. L. c. 201,
§ 14. At the hearing on the appointment of a guardian or temporary guardian,
the issues before the court are (1) whether the
person involved is
[*757] mentally retarded within the meaning of the statute (G. L. c. 201,
§ 6A) and (2), if the person is mentally retarded, who shall be appointed
guardian.
Id. As an aid to the judge in reaching these two decisions, it will often be
desirable to appoint a guardian ad litem,
[***55]
sua sponte or on motion, to represent the interests of the person. Moreover,
we think it appropriate, and highly desirable, in cases such as the one before
us to charge the guardian ad litem with an additional responsibility to be
discharged if there is a finding of incompetency. This will be the
responsibility of presenting to the judge, after as thorough an investigation
as time will permit, all
reasonable arguments in favor of administering treatment to prolong the life of
the individual involved. This will ensure that all viewpoints and alternatives
will be aggressively pursued and examined at the subsequent hearing where it
will be determined
[**434] whether treatment should or should not be allowed. The report of the guardian
or temporary guardian will, of course, also be available to the judge at this
hearing on the ultimate
issue of treatment. n19 Should the probate judge then be satisfied that the
incompetent individual would, as determined by the standards previously set
forth, have chosen to forgo potentially life-prolonging treatment, the judge
shall issue the appropriate order. If the judge is not so persuaded, or finds
that the interests of the State require
[***56] it, then treatment shall be ordered.
- - - - - - - - - - - - - - - - - -Footnotes- - - - - - - - - - - - - - - - - -
n19 We note that the probate judge in the instant case would more appropriately
have appointed a temporary guardian under G. L. c. 201,
§ 14, subsequent to an initial determination that Saikewicz was incompetent to
make his own decision regarding treatment. Instead the judge appointed a
guardian ad litem to discharge the duties of a general guardian. In view of
the facts, however, we are of the view that nothing of substance turns on this
distinction in this case. We also note the existence of some confusion and
doubt concerning the power of a probate judge to appoint a temporary guardian
for a mentally retarded
person prior to the amendment in 1976 of G. L. c. 201,
§ 14, by St. 1976, c. 277.
- - - - - - - - - - - - - - - - -End Footnotes- - - - - - - - - - - - - - - - -
Commensurate with the powers of the Probate Court already described, the
probate judge may, at any step in these proceedings, avail himself or herself
of the additional
[*758] advice or
knowledge of any person or group. We note here that many health care
institutions have developed
[***57] medical ethics committees or panels to consider many of the issues touched on
here. Consideration of the findings and advice of such groups as well as the
testimony of the attending physicians and other medical experts ordinarily
would be of great assistance to a probate judge faced with such
a difficult decision. We believe it desirable for a judge to consider such
views wherever available and useful to the court. We do not believe, however,
that this option should be transformed by us into a required procedure. We
take a dim view of any attempt to shift the ultimate decision-making
responsibility away from the duly established
courts of proper jurisdiction to any committee, panel or group, ad hoc or
permanent. Thus, we reject the approach adopted by the New Jersey Supreme
Court in the
Quinlan case of entrusting the decision whether to continue artificial life support to
the patient's guardian, family, attending doctors, and hospital
"ethics committee." n20
70 N.J. at 55. One rationale for such a delegation was expressed by the lower court judge in
the
Quinlan case, and quoted by the New Jersey Supreme Court:
"The nature, extent and duration of care by societal standards
[***58] is the responsibility of a physician. The morality and conscience of our
society
places this responsibility in the hands of the physician. What justification
is there to remove it from the
[*759] control of the medical profession and place it in the hands of the courts?"
Id. at 44. For its part, the New Jersey Supreme Court concluded that
"a practice of applying to a court to confirm such decisions would generally be
inappropriate, not only because that would be a
gratuitous encroachment upon the medical profession's field of competence, but
because it would be impossibly cumbersome. Such a requirement is
distinguishable from the judicial overview traditionally required in other
matters such as the adjudication and commitment of mental incompetents. This
is not to say that in the
[**435] case of an otherwise justiciable controversy access to the courts would be
foreclosed; we speak
rather of a general practice and procedure."
Id. at 50.
- - - - - - - - - - - - - - - - - -Footnotes- - - - - - - - - - - - - - - - - -
n20 Specifically, the court held that
"upon the concurrence of the guardian and family of Karen, should the
responsible attending physicians conclude that there is no reasonable
possibility of Karen's ever emerging from her present comatose condition to a
cognitive, sapient state and that the life-support
apparatus now being administered to Karen should be discontinued, they shall
consult with the hospital 'Ethics Committee' or like body of the institution in
which Karen is then hospitalized. If that consultative body agrees that there
is no reasonable possibility of Karen's ever emerging from her present comatose
condition to a cognitive, sapient state, the present life-support
system may be withdrawn and said action shall be without any civil or criminal
liability therefor, on the part of any participant, whether guardian,
physician, hospital or others.
"By the above ruling we do not intend to be understood as implying that a
proceeding for judicial declaratory relief is necessarily required for the
implementation of comparable decisions
in the field of medical practice."
In re Quinlan, 70 N.J. at 55.
- - - - - - - - - - - - - - - - -End Footnotes- - - - - - - - - - - - - - - - -
[***59]
We do not view the judicial resolution of this most difficult and awesome
question -- whether potentially life-prolonging treatment should be withheld
from a person incapable of making his own decision -- as constituting a
"gratuitous encroachment" on the
domain of medical expertise. Rather, such questions of life and death seem to
us to require the process of detached but passionate investigation and decision
that forms the ideal on which the judicial branch of government was created.
Achieving this ideal is our responsibility and that of the lower court, and is
not to be entrusted to any other group purporting to represent the
"morality and conscience of our society,"
no matter how highly motivated or impressively constituted.
III.
Finding no State interest sufficient to counterbalance a patient's decision to
decline life-prolonging medical treatment in the circumstances of this case, we
conclude that the patient's right to privacy and self-determination is entitled
to enforcement. Because of this conclusion, and in
view of the position of equality of an incompetent person in Joseph Saikewicz's
position, we conclude that the probate judge acted appropriately in this case.
For
[***60] these reasons we issued our order of July 9, 1976, and responded as we did to
the questions of the probate judge.
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