American Journal of Law & Medicine

Foregoing life-sustaining treatment for adult, developmentally disabled, public wards: a proposed statute.

This Article proposes a procedure for making decisions to forego life-sustaining treatment for adult, developmentally disabled, public wards who are not competent to make health care decisions. Few commentators or cases address the special considerations involved in making life-sustaining treatment decisions for this patient population. The proposal attempts to fill this gap with a patient-centered process that allows decisionmakers, without prior judicial approval, to forego lifesustaining treatment for adult, developmentally disabled, public wards who have been reliably diagnosed with specific medical conditions.



This Article proposes a procedure for decisions to forego life-sustaining treatment for adult, developmentally disabled, public wards who are not competent to make health care decisions for themselves. Adults are the Article's focus because most litigation and commentary on decisions to forego life-sustaining treatment have involved adult patients.[1] Further study of or experience with this proposal will indicate whether the proposal can be extended to developmentally disabled children.[2]

Federal law defines a developmental disability as a severe and chronic disability attributable to physical and mental impairments that become manifest before one attains twenty-two years of age.[3] The proposal only covers developmentally disabled individuals who have been adjudicated incompetent to make their own health care decisions. Adults who have not been legally determined incompetent, including developmentally disabled adults, are presumed to have the capacity to make health care decisions and, therefore, would fall beyond the scope of this proposal.[4]

Approximately 3.9 million Americans have developmental disabilities.[5] Improvements in medical care, which result in greater survival rates for infants born with disabling conditions, are increasing the lifespan of this population.[6] This longer lifespan heightens the risk of serious illnesses and chronic conditions that occasion the use of much medical treatment[7] and further emphasizes the need to make end-of-life treatment decisions.[8] No reliable figures indicate how many of these individuals are state wards, but public employees or their agents often make decisions for these individuals.[9] As more developmentally disabled persons outlive their parent guardians, some will inevitably become public wards.[10]

This proposal addresses public wards for three policy reasons. First, designation as a developmentally disabled public ward generally entails a finding of mental incapacity[11] and inability to make health care choices. Hence, a process for making decisions about foregoing life-sustaining treatment in such a case is necessary. Second, the state has a special interest in this population. Whether the wards live in public facilities or private residences, they are still a state responsibility, both legally and ethically. Therefore, the state should provide clear and fair guidance for those involved in decisions to forego life-sustaining treatment. Third, social isolation is a greater problem for public wards than for other developmentally disabled persons. Individuals become public wards either because they have no family or friends or because no one is willing to act as guardian.[12] This absence of traditional, caring relationships emphasizes the need for clear, ethical procedures that govern life-sustaining treatment decisions among this population.

Little treatment of the subject has emerged in commentary or law. While many commentators have examined life-sustaining treatment decisions for previously competent patients,[13] fewer have considered patients who were never competent to consider end-of-life treatment.[14] Further, discussions about the role of the state, as guardian of a developmentally disabled adult, in deciding whether to forego life-sustaining treatment are rare. Case law and statutes offer only limited guidance. Case law generally focuses on decision-making for previously competent patients, and few states have statutory provisions governing life-sustaining treatment decisions for the developmentally disabled.[15] A few states have developed a systematic decisionmaking process for these patients in case law.[16] This proposal attempts to fill the gap.

Under this proposal, a state must choose one of two policies: maximize life-sustaining treatment in all cases involving developmentally disabled public wards or involve state agencies in deciding whether to forego life-sustaining treatment for this population. If a state chooses involvement, clear statutory, administrative, or case law standards must govern the decision. The alternatives to such standards, which include requiring prior judicial authorization in every instance or allowing impromptu decisions by public employees or attending physicians, do not include the consistency, fairness, and accountability that the standards would provide.

This proposal seeks to provide a patient-centered process[17] for decisions to forego life-sustaining treatment for affected patients. It specifies medical conditions for which life-sustaining treatment decisions will be made by unanimous agreement of designated patient surrogates and physicians. It also provides for judicial resolution only where any decisionmaker or the caregiving facility disagrees as to the appropriateness of the life-sustaining treatment decision. Since prior judicial authorization of decisions to forego life-sustaining treatment may harm patients, the proposal permits decisions for patients with specified conditions without prior judicial authority and requires court authorization in other situations.

Part II reviews existing case law on decisions to forego life-sustaining treatment and critiques the current right of developmentally disabled patients to refuse treatment. These cases provide useful illustrations of the general legal issues underlying life-sustaining treatment, though few specifically pertain to the population that is the subject of this Article. Part III reviews public guardianship laws and examines state and federal statutes that address decisions to forego life-sustaining treatment. Because few state laws provide explicit standards for making these treatment decisions for the public ward, this Article proposes that states adopt such statutory procedures or administrative rules. Part IV presents the rationale for each aspect of a proposal governing decisions to forego life-sustaining treatment for these patients. It designates the primary decisionmakers and the determinations they must make for affected patients. It also specifies the court's role if a primary decisionmaker should petition for judicial intervention or if the decisionmakers seek to forego life-sustaining treatment for a patient in a medical condition not specified in the statute. Part V contains the text that would implement the procedure and argues that a statute or administrative rule is preferable to case law development.


"Life-sustaining treatment" is "any medical intervention, technology, procedure, or medication that is administered ... in order to forestall the moment of death, whether or not the treatment is intended to affect the underlying life-threatening disease(s) or biologic processes."[18] Examples include surgery, use of a ventilator or respirator, dialysis, cardiac or respiratory resuscitation, transfusion, artificial nutrition and hydration,[19] and antibiotics or other medications. "Forego" means either to withhold or withdraw a form of treatment. The proposal takes the position established in cases[20] and commentary[21] that withholding and withdrawing treatment are ethically and medically equivalent; therefore, the same criteria properly govern either decision.[22]

This proposal permits a decisionmaker or care provider to forego life-sustaining treatment for an affected patient without prior judicial authorization when the patient is in a persistent vegetative state[23] or is conscious and terminally ill. "Terminal illness" pertains to a condition that has a predictably fatal progression, cannot be stopped by any known treatment,[24] and will likely cause the patient's death within one year.[25] Use of the word "terminal" has been criticized as "creating more confusion than clarity" in decisions about life-sustaining treatment.[26] Nonetheless, this proposal requires a finding of terminal illness so that these patients will not lose life-sustaining treatment that stems from a non-terminal developmental disability rather than a terminal condition.[27]



In holding that the Due Process Clause of the Fourteenth Amendment protects a competent adult's right to choose or decline his or her own medical treatment,[28] the United States Supreme Court has assumed that this right includes the choice to decline life-sustaining treatment.[29] However, legal questions about treatment decisions generally arise when an adult is not competent to make his or her own choices. In some cases, physicians may decide to treat the patient. In emergency situations, for example, the law does not require a physician to obtain actual consent in order to provide emergency care to an incompetent patient; instead, consent is implied.[30] In non-emergency situations, a family member may consent to medical care for an incompetent patient, though some states require that the family member be the patient's legal guardian.[31]

Over the past two decades, situations in which a surrogate seeks to forego life-sustaining treatment on behalf of a patient have joined those in which a surrogate consents to medical treatment for an incompetent patient. In large part, this is due to the increased use of life-sustaining treatment as more medical therapies have been devised or improved,[32] and more patients have been hospitalized near the end of their lives.[33] As a result, life-sustaining treatment is now applied to patients who are either close to death or in a persistent vegetative state and, therefore, cannot make or communicate treatment decisions. In fact, some have suggested that such treatment fails to benefit, and may actually harm or insult, the patient.[34]

When a surrogate decisionmaker seeks to forego life-sustaining treatment on behalf of an incompetent patient who is terminally ill or in a persistent vegetative state, the surrogate and physician often agree without seeking judicial authorization.[35] At other times, medical care providers may be unwilling to comply with such a request, whether for ethical, religious, or legal reasons.[36] These disagreements are often resolved in court[37] and have raised a variety of issues, including: the theoretical basis that supports foregoing life-sustaining treatment in these situations; the definition of the right and how it may be exercised in the case of a particular incompetent; and the requirement of prior judicial authorization of a decision to forego life-sustaining treatment.

Courts deciding whether to authorize foregoing life-sustaining treatment on behalf of an incompetent patient have recognized an incompetent patient's "right to refuse treatment." Some courts have located this right in the common law. For instance, the right of self-determination and the interest in bodily integrity underpin the legal doctrine requiring a physician to obtain informed consent to medical treatment.[38] Accordingly, for informed consent to be meaningful, an individual must have the right to refuse consent, which some courts have found includes the right to refuse life-sustaining treatment.[39] On the other hand, looking at or beyond the common law, other courts have located this right in privacy guarantees of the United States Constitution[40] or state constitution.[41]

Whether based in common law or constitutional theory, a competent patient's right to refuse treatment survives incompetence.[42] Courts in at least two states have extended the right to refuse treatment to patients who were never competent to formulate treatment preferences.[43] One court reasoned that the right to refuse treatment must extend to those who were previously competent and to those who were never competent "because the value of human dignity extends to both."[44]

Courts that recognize a right to refuse treatment that either survives incompetence or exists for those who were never competent differ as to how the patient may exercise that right. A majority allows a surrogate to act on behalf of the patient,[45] though interpretations of the surrogate's role vary. For example, the narrowest interpretation calls for the surrogate to base his or her decision only on statements that the patient, while competent, made during a serious discussion of treatment preferences.[46] This approach does not permit surrogates to forego life-sustaining treatment on behalf of patients who were never competent[47] or who, when previously competent, expressed no preferences about life-sustaining treatment.[48]

A second interpretation, adopted by a larger number of courts, is the substituted judgement standard,[49] which requires a surrogate to make the same choice the patient would have made, if competent. As with reliance on the patient's expressed wishes, substituted judgment respects the patient's integrity and autonomy.[50] However, substituted judgment provides the surrogate of a previously competent patient with a broader range of evidence concerning the patient's previously expressed wishes.[51] In fact, Massachusetts requires a surrogate to follow the substituted judgment standard if the patient was never competent to formulate treatment preferences,[52] and Washington requires a surrogate to follow the standard if the patient, although incompetent, expressed any treatment preferences.[53]

A third approach, based on the best interests standard, has begun to replace substituted judgment, especially in cases in which surrogates must decide whether to forego life-sustaining treatment for patients who were previously competent, but expressed no preferences.[54] It has also been recommended for patients who were never competent.[55] Since it would be impossible for the surrogate to follow the substituted judgment standard in these situations,[56] his or her alternative would be to decide according to the patient's best interests, using "more objective, societally shared criteria," designed solely to promote patient welfare rather than self-determination.[57] Suggested criteria for a surrogate's decision include: relief of suffering, preservation or restoration of functioning, quality[58] and extent of life sustained, satisfaction of present desires, opportunities for future satisfaction, and the possibility of developing or regaining the capacity for self-determination.[59]

Another issue in life-sustaining treatment cases that is relevant to this proposal involves whether a surrogate must obtain prior court authorization to forego treatment for an incompetent patient who is terminally ill or in a persistent vegetative state. The minority rule in cases involving previously competent patients requires prior judicial approval in all cases,[60] or at least when the guardian is a stranger to the patient.[61] Some jurisdictions require judicial determination of incompetence and naming of a guardian, but do not require judicial approval of the specific treatment decision.[62] Others do not require judicial involvement when family members act as surrogates for the patient and the family and physicians agree on the treatment decision.[63] The three jurisdictions that expressly permit foregoing life-sustaining treatment on behalf of patients who were never competent are split on this issue. …

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