Amendments to the Health Care Surrogate Act, effective January 1, 1998, substantially alter the advice that attorneys now must give clients who are making advance directives. Prior to the amendments, the Health Care Surrogate Act only applied to decisions concerning life-sustaining treatment when a patient had a qualifying condition, i.e., the patient was terminally ill and death was imminent; the patient was permanently unconscious; or the patient had an incurable or irreversible condition (a) for which there was no reasonable prospect of cure or recovery, (b) the condition would ultimately cause the patient’s death even if life-sustaining treatment was initiated or continued, (c) that imposed severe pain or an inhumane burden on the patient, and (d) for which initiating life-sustaining treatment, in light of the patient’s medical condition, provided only minimal medical benefits. (755 ILCS 40/10) The Act did not apply if the patient had an operative or unrevoked living will or an agent under a power of attorney for health care. (755 ILCS 40/15) The Act now applies to a patient who lacks capacity to understand and appreciate the nature and consequences of any medical treatment decision and who does not have an advance directive covering the patient’s condition. Thus, the present act substantially expands times when "default" surrogates can make medical decisions.
The amendments to the Health Care Surrogate Act are, in part, as follows:
(1) "Decisional capacity" now means "the ability to understand and appreciate the nature and consequences of a decision regarding medical treatment or forgoing life-sustaining treatment and the ability to reach and communicate an informed decision in the matter as determined by the attending physician. (755 ILCS 40/10)
(2) The act "applies to patients who lack decisional capacity or who have a qualifying condition." (755 ILCS 40/15) Despite this new language, upon further reading of the statute it is clear that a person with a qualifying condition must also lack decisional capacity before the act applies. The Act also does not apply if the patient has an advance directive that covers the patient’s condition.
(3) The Act now provides:
Decisions concerning medical treatment on behalf of a patient without decisional capacity are lawful, without resort to the courts or legal process, if the patient does not have a qualifying condition and if decisions are made in accordance with one of the following paragraphs in this subsection and otherwise meet the requirements of this Act:
(1) Decisions concerning medical treatment on behalf of a minor or adult patient who lacks decisional capacity may be made by a surrogate decision maker or makers in consultation with the attending physician, in the order of priority provided in Section 25 with the exception that decisions to forgo life-sustaining treatment may be made only when a patient has a qualifying condition.
The amendments provide that the surrogate decision maker shall first use a substituted judgment analysis and make decisions for the adult patient conforming as closely as possible to what the patient would have done or intended under the circumstances. If the adult patient’s wishes are unknown and remain unknown after reasonable efforts to discern them or if the patient is a minor, the decision shall be made on the basis of the patient’s best interests as determined by the surrogate decision maker. " In determining the patient’s best interests, the surrogate shall weigh the burdens on and benefits to the patient of the treatment against the burdens and benefits of that treatment and shall take into account any other information including the views of family and friends that the surrogate decision maker believes the patient would have consider if able to act for herself or himself." If there is no surrogate available, a court appointed guardian shall be treated as a surrogate under the act. (755 ILCS 40/20 (b)(5)).
(4) Only one physician, the attending physician, is needed to make the decision that the patient lacks decisional capacity to make medical decisions that do not pertain to life-sustaining treatment before a surrogate has authority to make decisions for the patient. (755 ILCS 40/10). The amendments do not require the physician to inform the patient that he has been determined to lack decisional capacity, nor do the amendments require the physician to inform the patient that a surrogate decision maker will be making medical decisions for the patient nor inform the patient of the medical decision that has been made by the surrogate.
III. Legislative History of Amendments
The 1998 amendments to the Health Care Surrogate Act were clearly designed to remove the judiciary from the decision making process for those who lack capacity to make health care decisions for themselves, and who did not have the foresight or opportunity to execute a medical advance directive. The original Health Care Surrogate Act was also predicated on a desire to relieve individuals and their families from the time, expense and burden of judicial involvement in the decision regarding the initiation or continuation of life sustaining treatment and to allow the decision to be made privately between the family and physician. (A Review of the Illinois Health Care Surrogate Act, Fatum, Kane and LeBlang, Illinois Bar Journal, Vol. 80, March 1992). It must be remembered, however, that the initial Act was limited to allowing a substituted decision for the single, final act of withdrawing life support from an incompetent person with a qualifying condition highlighted by the Illinois Supreme Court in In Re Estate of Longeway, 133 Ill. 3d 33, 549 N.E.2d 292 (1990) and In Re Estate of Greenspan, 137 Ill. 2d 1, 558 N.E.2d 1194 (1990). The amendments to the Act do more than expand an already existing statutory right. Indeed, the amendments substantially restrict the accepted common law notion of an individual’s right to control all aspects of his medical care and the constitutional right to privacy.
The amendments to the Health Care Surrogate Act originated in a Health Care Legislation class at Southern Illinois University School of Law in the spring of 1997. The student drafted legislation, as modified by the Illinois State Medical Society, was sponsored by Rep. Phelps (D-118) and introduced in the Illinois House on February 27, 1997, as the Health Care Surrogate Decisions Act, HB 1066. (Legislative Informational Services, Bill Tracking (West), accessed February 10, 1998). The bill, which was opposed by Illinois Citizens for Life and the Illinois Catholic Conference, saw no further action after being referred to the House Committee on Rules on March 21, 1997. (Legislative Informational Services, Bill Tracking (West), accessed February 10, 1998). New language, drafted by the Illinois State Medical Society, pro-life groups and the Catholic Conference was resubmitted as an amendment to HB 725, sponsored by Rep. Burke (D-23), which had been introduced February 19, 1997, to amend the Right of Conscience Act. (Legislative Informational Services, Bill Tracking (West), accessed February 10, 1998).
On April 17, 1997, HB 725 passed in the House of Representatives with little debate. The bill proceeded to the Senate on April 23, 1997, where it passed the Senate Health and Welfare Committee on May 6, 1997, with one amendment. It passed the Senate, again with little debate, on May 15, 1997, and returned to the House for a vote of concurrence. On May 22, 1997, the House voted to concur with the Senate and the bill was sent to Governor Edgar, (Legislative Informational Services, Bill Tracking (West), accessed February 10, 1998), who signed the legislation, Public Act 90-246, on July 29, 1997. (Legislative Synopsis and Digest, the 90th General Assembly, No.1, at 269 (Ill. 1998)).
Public Act 90-246 broadens the Health Care Surrogate Act "..to fill the coverage gap for persons who do not have a qualifying condition, but who have lost their decisional capacity.." quoting ISBA Director of Legislative Affairs, Illinois Bar Journal, Vol. 86, Pp. 47-48, Jan. 1998. The amending legislation provides it "will bring improved clarity and certainty to the process for implementing decisions concerning medical treatment.." 755 ILCS 40/5 (a).
Contrary to these expressed intentions, Public Act 90-246 has confused the role of the surrogate and the physician in making medical treatment decisions, and has gone far beyond expanding what was a narrow application of the Health Care Surrogate Act such that the Act’s constitutionality is now suspect.
IV. Problems Created by the Amendments
A. Problems for Patients/Clients
The legislation amending the Surrogate Health Care Act is particularly problematic in its failure to define "medical treatment". Consequently, it is unclear whether the legislature intended this phrase to be applied expansively or limitedly. For instance, the other part of P.A. 90-246 which amended the Health Care Right of Conscience Act, 745 ILCS 70/3 (a), defines "health care" as:. . . any phase of patient care, including but not limited to, testing; diagnosis; prognosis; ancillary research; instructions; family planning, counseling, referrals, or any other advice in connection with the use or procurement of contraceptives and sterilization or abortion procedures; medication; or surgery or other care or treatment rendered by a physician or physicians, nurses, paraprofessionals or health care facility, intended for the physical, emotional, and mental well-being of persons;
745 ILCS 70/3 (a).
Consider an unwed seventeen year old who is pregnant and has made a decision to have an abortion. Under the amended Act, medical decisions by a surrogate on behalf of a minor are to be made in the best interest of the minor as determined by the surrogate decision maker. (755 ILCS 40/20 (b-5)). The parents could obtain a doctor’s determination that the minor lacks decisional capacity and make a surrogate decision to prevent the abortion. Lack of decisional capacity is triggered by the doctor determining that the seventeen year old lacks the ability to understand and appreciate the nature and consequences of the abortion. On the other hand, the pregnant minor might choose to give birth to the child. Arguably, using the Health Care Surrogate Act, her parents could force her to instead have an abortion. While these cases seem unlikely, they nonetheless could occur unless legislation clarifying or limiting the authority of surrogate decision makers is enacted.
Under the new Act, the patient is not provided an opportunity to reject the surrogate nor the surrogate’s decision concerning medical treatment. Nor is the patient allowed to contest the physician’s determination that the patient lacks capacity to make a medical treatment decision. Under the original Act, a patient had to be informed that he lacked decisional capacity and that a surrogate would be making a life-sustaining treatment decision on his behalf. The patient had to be informed of the surrogate’s decision. If the patient objected to the surrogate or the surrogate’s decision, then the Act would not apply.
Under the new Act, it is unclear whether a patient, once deemed by his physician to lack decisional capacity, can return to a state of capacity or whether the determination by a treating physician is equivalent to the judicial adjudication of disability in a guardianship proceeding. Once adjudicated a disabled adult in a guardianship proceeding, the adult remains a disabled adult unless the adjudication is terminated by the court. (755 ILCS 5/11a-20)
The new Act now makes it very convenient for physicians and family members to place patients in nursing homes. The physician may believe that it is in the best interest of the patient to go to a nursing home after hospital discharge. The family members, who are not available to provide twenty-four hour care, may also want the patient to be released to the nursing home. The patient may refuse. How convenient it would be for the doctor to find that the patient does not understand and appreciate the nature and consequences of nursing home placement. How convenient it would be for the family to justify its "substituted" judgment, saying, "If mom were of clear mind, she would obviously choose nursing home placement at this time."
It is unclear under the new Act, whether a patient’s advance directive will be honored when the principal limits the agent’s authority by not delegating the agent the power to consent to a particular treatment rather than expressing what treatment that patient chooses to forego. The language of the new Act makes it applicable in those situations where the patient’s condition does not fall within the coverage of his advance directive. If the advance directive is silent about a particular treatment, i.e., the principal did not want the treatment and, therefore, did not delegate the agent power to consent to the treatment, then arguably, the medical treatment does not fall within the coverage of the advance directive, and, the surrogate can make the decision for the patient.
B. Problems for Physicians
Prior to the amendments to the Act, it was clear that the default surrogates could only make decisions on life-sustaining treatment if a patient had a qualifying condition and lacked capacity to make decisions. Health care providers were required to obtain informed consent from the patient for any non-emergency medical treatment before the treatment was rendered. If the patient lacked decisional capacity and the patient did not have an agent under an advance directive, then guardianship was required. The health care provider then had to have consent from the guardian before providing the medical treatment. This process allowed a judicial determination of the patient’s incapacity. Once the guardianship order was entered and the guardian’s powers specifically delegated under the court order, the health care providers knew when the guardian’s consent was needed as opposed to the patient’s consent.(See Rebecca J. O’Neill, Surrogate Health Care Decisions for Adults in Illinois-Answers to the Legal Questions that Health Care Providers Face on a Daily Basis, 29 Loy. U. Chi. L.J. (1998)) Under the new amendments, the burden of making the determination of lack of capacity to make medical decisions rests with the attending physician. Because different minds may vary on the interpretation of the patient’s level of capacity, a patient may later challenge the physician’s determination of his incapacity, especially if the patient feels that unwanted treatment has been forced upon him or if the patient is unhappy with the outcome of the treatment. This opens the door for more law suits for damages against doctors for assault or battery for treatment that was provided without the patient’s consent. Had the judiciary made the decision on the patient’s capacity, the doctor would not face this risk.
Because the statute does not define "medical treatment", it is unclear how broadly the statute is to be applied. For example, under the new act, can a surrogate consent to a patient’s abortion, sterilization, psychosurgery, electro-convulsive treatment, or admission to a mental institution?
Once a physician determines that the patient lacks capacity to make medical decisions, does this mean the physician must consult with the surrogate(s) each time a medical decision must be made and obtain informed consent from the surrogate(s) before rendering the treatment? Imagine how cumbersome this would be for a physician whose patient has ten children who fall in the same class as surrogates. What if the physician fails to obtain consent from one of the surrogates? Will the physician be faced with a liability suit after providing the treatment? What if the patient dies during surgery? Will the physician be faced with a wrongful death case for operating on the patient without first obtaining consent from all surrogates?
What happens when the physician knows that the patient, who is now a widow, had at one time executed a durable power of attorney for health care naming her only child as her agent, but has since revoked the agency because her child abused her? The Act provides that the physician is to rely on that child’s decision as surrogate decision maker. Will the physician refuse to honor the child’s decision and instead transfer the patient to another health care provider using The Right of Conscience Act, (745 ILCS 70/1) as an excuse to refuse the surrogate’s decision?
What happens when the physician feels that greed taints the judgment of the surrogate decision maker or that the decision is made out of convenience for the surrogate rather than as a substituted judgment for the patient? Is the physician to become a judge and discern the motives of the surrogates before making a conscience decision to follow the surrogate’s directive? Does the physician risk substituting his judgment for patient’s if the physician becomes involved in determining motives for surrogate decisions. By refusing to honor a surrogate’s decision and forcing the patient’s transfer, does a physician strong arm the decision that he feels is appropriate for the patient as opposed to what the patient may instead desire as expressed by the surrogate?
Despite the legislatures intent "to improve clarity and certainty to the process for implementing decisions concerning medical treatment", the resulting statute now is ambiguous and creates a Pandora’s box of problems for health care providers and patients.
V. The Continuing Need for Guardianship
Despite the legislature’s attempt to take the judiciary out of private decision making on health care issues, the need for guardianship is still pervasive.
Cases of elder abuse, particularly physical abuse, present a situation where a guardianship would be necessary to protect the person from future abuse, especially where the abuser would be the first in line to act as surrogate decision maker under the Health Care Surrogate Act. Consider a case where an alcoholic is neglecting and abusing the his spouse. The abused and neglected spouse does not have an advance directive and now lacks capacity to execute one. The neglected and abused spouse indicates she prefers to go back to the home with the abusive spouse even though she is presently hospitalized as a result of her spouse’s the neglect and abuse. When she was hospitalized she was dehydrated, suffered from malnutrition, and, had a decubitus with gangrene developing. A child is willing to intervene, but, the spouse has the statutory right to make the discharge arrangements. He will not agree to continued hospital care nor nursing home placement. In such a situation, a guardianship is necessary to protect the patient. If the guardianship is not pursued, the new Health Care Surrogate Act, has empowered the abusive spouse to bring his spouse home to an atrocious setting.
Consider a situation where an elderly person executes a Health Care Power of Attorney naming her sister as agent. She later has a conflict with her sister and executes a written revocation of the agency. She now has diminished capacity, and the only available surrogate is the same sister who had her authority revoked. In such a situation, should the sister be allowed to act as surrogate decision maker? Is it better to seek a court order appointing her or a public guardian as guardian? Would the attorney who drafted the original power of attorney have a conflict in handling either of these proceedings? Moreover, could the sister argue that the availability of a surrogate decision maker makes the appointment of a personal guardian unnecessary?
Guardianship is still warranted when a person lacks capacity to manage his finances or when the person is the victim of financial exploitation. Based upon the amendments to the Health Care Surrogate Act, it is possible that the court could determine that a guardian of person is unnecessary, since the new medical treatment provisions of the surrogate act could be implemented. In the event that only an estate guardian is ordered, or a limited personal guardian appointed, a physician, employing the decision of a surrogate under the Health Care Surrogate Act, could circumvent the judicial ruling, or make decisions such as a nursing home placement, without the oversight of the judicial process. Whereas, the guardian would be required to obtain authority from the court before making nursing home placement and the patient would have the opportunity to contest nursing home placement. The powers now granted to a surrogate under the Act, are in direct conflict with Illinois court decisions which have judicially limited the authority of a court appointed guardian to make a medical decision for mental health treatment, In re Gardner, 121 Ill.App.3d 7, 459 N.E.2d 17 (4th Dist. 1984) or to consent to an abortion, In re Estate of D.W., 134 Ill.App.3d 788, 481 N.E.2d 355 (1st Dist. 1985).
A guardian of the person will be necessary when there is no one available or qualified to act as surrogate or where the potential surrogates cannot agree on a plan of treatment. The new Act provides that a court appointed guardian can make medical treatment decisions on behalf of a patient without differentiating between a guardian of the person and the guardian of the estate, who, in conflict, are given a much different surrogate hierarchy in other parts of the Act.
VI. Constitutionality of Statute Questioned
If the right to privacy means anything, it means an individual’s right to control all aspects of his or her own personal care and medical treatment, including the right to decline medical treatment. The State of Illinois has codified this right under the Illinois Power of Attorney Act, (755 ILCS 45/4-1) and the Illinois Supreme Court has recognized the common law right to refuse medical treatment in In re Estate of Longeway, 133 Ill. 2d 33, 549 N.E.2d 292 (1989). The United State Supreme Court has stated that "[n]o right is held more sacred, or is more carefully guarded, by the common law, than the right of every individual to the possession and control of his owner person, free from all restraint or interference of others, unless by clear and unquestionable authority of law." Union Pacific r. co. v. Botsford, 141 U. S. 250, 251, 11 S.Ct. 1000, 1001, 35 L. Ed. 734 (1891). More recently, the United States Supreme Court has recognized that competent patients have the right to refuse medical treatment as a liberty interest under the Fourteenth Amendment to the United States Constitution, which provides that no State shall "deprive any person life, liberty, or property, without due process of law." Cruzan v. Director, Missouri Dept. of Health, 497 U.S. 261, 110 S. Ct. 2841, 111 L. Ed. 2d 224 (1990). The right to make medical decisions for oneself clearly is a liberty interest protected by the United States Constitution. Before the state can deprive an individual of a liberty interest, the state must afford the individual due process of law.
The Health Care Surrogate Act provides no due process of law. It takes the judiciary completely out of the private decision making process to the point that the individual’s right to make private decisions concerning health care decisions is now at risk of being usurped when one physician determines that the patient does not have the ability to reach and communicate an informed decision in the matter as determined by the physician. The law does not require the physician to inform the patient that it has been determined that the patient lacks decisional capacity or that a surrogate will be making the treatment decisions for the patient. Nor does the law require the physician to tell the patient what treatment will be rendered under the surrogate’s decision. Clearly, the law deprives the patient of his liberty interest to make personal medical care decisions without due process of law and should be held unconstitutional.
VII. Advice to Clients
The revisions to the Health Care Surrogate Act should signal estate planning attorneys that counseling clients about advance directives is critical to inform patients how to protect their rights to make medical decisions. Clients should be informed that unless the Act is amended or found unconstitutional, that they risk invasion of the their right to make medical decisions by "default" surrogates. By executing a Durable Power of Attorney for Health Care and Declaration for Mental Health Treatment, the client is able to choose his primary and successor surrogate decision makers and may also limit or tailor the power of those decision makers. By failing to execute a power of attorney, the person may ultimately allow the "default" surrogate to make more decisions than he is willing to delegate to a specified agent. It is important for the client to choose someone who will likely be available to serve as his primary agent, and name sufficient successor agents to ensure that the power of attorney does not lapse or become inoperative. Under the language of the Health Care Surrogate Act, an inoperative advance directive will trigger the applicability of the Act. It is also important for the client’s advance directive to expressly state what medical treatment the client would choose to forego rather than simply limiting the agent’s authority by not delegating the agent specific power.
Although the intent of the drafters of the legislation amending the Health Care Surrogate Act was good, what has resulted is a statute that allows a patient’s right to make medical decisions to be delegated to a surrogate without any procedural protection for the patient. In a perfect world, this law could serve many useful purposes. Unfortunately, in our society the frail and elderly and those who lack capacity are frequently victimized by the family members that will be their surrogates under the Health Care Surrogate Act. The law provides too much opportunity for abuse and too little due process to protect individuals from the overreaching of others—it must be changed.
Rebecca J. O’Neill is an Associate Clinical Professor at Southern Illinois University School of Law. She teaches family law and serves as a clinical professor in a clinic that serves the elderly. She received her Undergraduate Degree in 1985 and her Law Degree in 1988 from Southern Illinois University.
John F. Erbes is an Assistant Clinical Professor at Southern Illinois University School of Law. He teaches Pretrial Advocacy and serves as a clinical professor in a clinic that serves the elderly. He received his Undergraduate Degree in 1976 from Western Illinois University and his Law Degree in 1979 from Southern Illinois University.