Joseph Saikewicz was a 67-year-old resident of the Belchertown State School in Massachusetts who had been profoundly intellectually disabled since early childhood, with an IQ in the range of 10 and no capacity to communicate treatment preferences or understand complex medical information. In 1976 he was diagnosed with acute myeloblastic leukemia, a rapidly progressing and almost uniformly fatal cancer in elderly patients. Treating physicians testified that without chemotherapy he would likely die within a relatively short period, but with chemotherapy the possibility was only temporary remission of limited duration with significant, painful, and debilitating side effects (including severe nausea, mucositis, infection, bleeding, and the need for isolation and invasive monitoring). Because of his lifelong inability to comprehend or cooperate, meaningful consent or participation in treatment was impossible, and sedation and restraints might be necessary to administer therapy. Unsure whether to initiate chemotherapy, the superintendent of the state school filed a petition in the Probate Court for instructions. After appointing a guardian ad litem, hearing medical testimony, and weighing the burdens and prospects of treatment, the Probate Court authorized withholding chemotherapy and providing palliative care. The matter reached the Massachusetts Supreme Judicial Court for review and guidance on the governing legal standards and procedures.
Does the right to refuse life-prolonging medical treatment extend to an incompetent, terminally ill adult, and if so, by what standard and through what decision-making process should that right be exercised?
The common-law and constitutional rights of bodily integrity and privacy protect a person from unwanted medical treatment and extend to incompetent individuals. Decisions for an incompetent patient must be made under the substituted judgment standard: the decisionmaker should attempt to determine, based on the patient's values, condition, prognosis, and all relevant circumstances, what the patient would choose if competent. In extraordinary, life-and-death treatment decisions, judicial involvement is appropriate to ensure that the patient's rights are protected and that the state's interests (preserving life, preventing suicide, maintaining the integrity of the medical profession, and protecting third parties) are carefully balanced against the individual's autonomy interests.
Yes. The right to refuse medical treatment extends to incompetent individuals and should be exercised through substituted judgment. Applying that standard, the court affirmed the order authorizing the withholding of chemotherapy from Mr. Saikewicz and the provision of palliative care.
The court began from the common-law principle that every person has a right to bodily integrity and to be free from nonconsensual medical treatment, a right also grounded in constitutional privacy. Incompetency does not extinguish this right; it necessitates a surrogate process that respects patient autonomy. The court rejected a strictly paternalistic "best interests" approach as insufficiently protective of individual self-determination. Instead, it adopted the substituted judgment standard from equity and guardianship jurisprudence: the decisionmaker should attempt to reflect, as faithfully as possible, the decision the patient would have made if competent, considering factors such as the patient's medical condition and prognosis, the likely benefits and burdens of treatment, the patient's known values and preferences (if any), and the impact of treatment on the patient's experience of life. Applying that framework, the court emphasized the evidence that aggressive chemotherapy in a 67-year-old with acute myeloblastic leukemia offered, at best, a short-lived remission, while imposing severe and incomprehensible suffering on someone incapable of understanding the reasons for the pain or cooperating with treatment. In such circumstances, the court reasoned, a person in Mr. Saikewicz's position—if competent—would likely decline treatment that promised only marginal extension of life at the cost of substantial torment. The court balanced the state's interests and found none sufficient to override the patient's autonomy: preserving life did not compel the imposition of highly burdensome, low-benefit therapy; the decision did not constitute suicide but rather a refusal of extraordinary medical intervention; no third parties depended on the patient; and the integrity of the medical profession would not be compromised by honoring a patient's (substituted) refusal. Finally, the court underscored the desirability of judicial involvement in such extraordinary cases to ensure a neutral, evidence-based application of substituted judgment and to provide procedural protections through appointment of a guardian ad litem and adversarial testing of medical evidence.
Saikewicz is a foundational case for end-of-life decision-making, establishing that incompetent adults retain the right to refuse life-sustaining treatment and that such refusals should be evaluated under the substituted judgment standard. It also marks a distinctive procedural stance: in extraordinary, life-and-death treatment choices, courts should be involved to safeguard patient rights. For law students, the case is essential for understanding the interaction of common-law consent, constitutional privacy, state interests, and guardianship principles; it also sets the stage for later decisions (state and federal) refining evidentiary standards and the role of families, physicians, ethics committees, and courts in end-of-life care.
Superintendent of Belchertown v. Saikewicz crystallizes two enduring propositions: the right to refuse medical treatment persists despite incompetency, and the law's paramount concern is to honor, as closely as possible, the patient's own values and choices through substituted judgment. By affirming the decision to withhold chemotherapy from a terminally ill, profoundly incapacitated adult, the court prioritized autonomy and dignity over reflexive life prolongation.