I esteem it the office of a physician not only to restore health, but to mitigate pain and dolours; and not only when such mitigation may conduce to recovery, but when it may serve to make a fair and easy passage.
—Francis Bacon, New Atlantis (1623)
The Office of the Cook County Public Guardian (Public Guardian’s Office) in Chicago is one of the largest guardianship offices in the country. It serves as guardian of the person and/or estate for more than 800 persons with disabilities. Most of its wards are elderly and have age-related dementia, such as Alzheimer’s disease, although it also serves some younger wards with disabilities. Many of the wards also have physical disabilities and are medically fragile. The wards come from all walks of life and from every corner of Cook County, which is one of the largest and most diverse counties in the country. The Public Guardian’s Office serves as the guardian of last resort, so its wards either have no family to act as guardian or have family members who are abusive, financially exploitative, or otherwise inappropriate. In its capacity as guardian, the Public Guardian’s Office has authority to make health care surrogate decisions for most of its wards.
Due to the number of wards served, their diverse backgrounds, the fact that the wards have no family at all or family members who are problematic decision makers, the wards’ cognitive disabilities, their advanced ages, and often medically frail conditions, the Public Guardian’s Office is frequently faced with complex and difficult health care surrogate decisions, especially in the area of end-of-life decisions, such as do not resuscitate (DNR) orders and removal of life support orders. As one state supreme court noted, this is a realm in which law, medicine, and religion intersect. As another state supreme court observed:
[These cases] raise profoundly disturbing questions that do not lend themselves to easy answers or ideal solutions…. To err either way — to keep a person alive under circumstances under which he would rather have been allowed to die, or to allow that person to die when he would have chosen to cling to life — would be deeply unfortunate. We thus approach this case with caution, conscious that life-and-death decisions like these are an awesome responsibility that can be undertaken only with a profound sense of humility and reserve. [These cases] raise moral, social, technological, philosophical, and legal questions involving the interplay of many disciplines. No one person or profession has all the answers.
This article will use three particularly complex case studies to illustrate some of the challenges and ethical dilemmas that arise when making health care surrogate decisions. The studies are based on actual health care surrogate decisions that the Public Guardian’s Office was called upon to make on behalf of its wards. The facts of the studies are true; only minor identifying information has been changed to preserve privacy.
Section II will provide legal context. The section will discuss the Uniform Health Care Decisions Act (UHCDA), which has been adopted by eight states and introduced in the General Assembly of a ninth state. This section will also discuss the health care surrogacy laws of Illinois, New York, Oregon and Texas. Finally, the section will discuss the influential case of In re Conroy, decided by the Supreme Court of New Jersey, which provides a thoughtful discussion of the factors that a surrogate decision maker should consider when making a substituted judgment or best interest determination.
As a general matter, the law of most jurisdictions entails a three-step analysis. First, does the person have decisional capacity to make the health care decision at issue and the ability to communicate the decision? If so, the person’s decision will be followed.
If the person lacks decisional capacity, the analysis will continue to the second inquiry: What would the person have wanted if able to make and communicate a decision? This is known as substituted judgment. This step entails searching for advance directives, attempting to ascertain the person’s religious convictions and ethical values, interviewing family members and significant others, and the like. This inquiry can be fraught with all kinds of challenges. For example, what if two sons give conflicting accounts of their mother’s views about end-of-life decisions? What if one of the sons abused and financially exploited the parent, appears overly eager to enjoy his inheritance, and is advocating withdrawal of life support? What weight should be given to an advance directive signed when the person was beginning to lose capacity, or under circumstances suggesting that a family member may have been exerting undue influence? What weight should be given an advance directive signed many years earlier under different circumstances? What if the person’s views changed frequently and widely over her lifetime? How should the surrogate decision maker take into account the person’s religious values? When are consults with clergy appropriate?
If the person’s wishes cannot be ascertained, the analysis will continue to the third step, which is determining what is in the person’s best interest. Again, this can be a difficult inquiry. Medical care providers sometimes disagree about what is best for a patient. Likewise, family members acting in the best of faith can passionately disagree about what is best for a loved one.
With this legal framework in place, Sections III – V will discuss the actual case histories of three wards of the Public Guardian’s Office: Bonnie T., Sarah W., and Eula W. In the process of discussing these wards’ cases, the article will highlight and analyze some of the difficult dilemmas that arise in making health care surrogate decisions.
In Section VI, the author offers some concluding thoughts. This section will discuss the importance of counseling clients to sign thoughtful and detailed advance directives in order to avoid the difficult dilemmas discussed in this article. This section will also emphasize the importance of seeking consults with interdisciplinary professionals in working through these hard issues. Finally, the section will discuss the need to put aside personal values when making a substituted judgment decision on behalf of another, in order to preserve that person’s fundamental rights to personal autonomy and bodily integrity.
II. Legal Framework
A. Uniform Health Care Decisions Act
The Uniform Health Care Decisions Act (UHCDA) was approved by the Uniform Law Commission in 1993 and has been adopted by eight states: Alabama, Alaska, Delaware, Hawaii, Maine, Mississippi, New Mexico, and Wyoming. It also has been introduced in the General Assembly of Kansas.
The UHCDA allows the surrogate to make health care decisions for a patient when it has been determined by the primary physician that the patient lacks capacity. “Health care” is defined as any care, treatment, service, or procedure to maintain, diagnose, or otherwise affect an individual’s physical or mental condition. “Health care decision” is defined as a decision regarding health care, including selection and discharge of health care providers and institutions; approval or disapproval of diagnostic tests, surgical procedures, programs of medication, and orders not to resuscitate; and directions to provide, withhold, or withdraw artificial nutrition and hydration and all other forms of health care. “Capacity” is defined as the ability to understand the significant benefits, risks, and alternatives to proposed health care and to make and communicate a health care decision.If the patient lacks capacity as defined above, the surrogate is to make health care decisions in accordance with the patient’s instructions, if any, and other wishes to the extent known to the surrogate. Otherwise, the surrogate shall make the decision in accordance with the surrogate’s determination of the patient’s best interest. In determining best interest, the surrogate shall consider the patient’s personal values to the extent known. The UHCDA does not attempt to define “best interest.”
The Preamble to the UHCDA states that it is built around several concepts, including the right of a competent individual to decide all aspects of his or her own health care in all circumstances, which includes the right to decline health care or to direct that health care be discontinued, even if death ensues. The UHCDA also seeks to ensure, to the extent possible, that decisions about an individual’s health care are governed by the individual’s own desires. The Comments to UHDCA § 1, which is the definitional section, state that the definition of “health care” is to be given the broadest possible construction.
The Illinois Health Care Surrogate Act (Illinois Act) was enacted in 1991. The Illinois Act applies only to patients who lack decisional capacity, which must be determined by the attending physician to a reasonable degree of medical certainty. “Decisional capacity” is defined as the ability to understand and appreciate the nature and consequences of a decision regarding medical treatment or the forgoing of life-sustaining treatment, and the ability to reach and communicate an informed decision. A patient is presumed to have decisional capacity in the absence of actual notice to the contrary, without regard to advanced age. Moreover, a diagnosis of mental illness or mental retardation, of itself, is not a bar to a determination of decisional capacity. The determination that a patient lacks decisional capacity must be in writing and placed in the patient’s medical record.
If the patient lacks decisional capacity, the surrogate shall make decisions for the patient as closely as possible to what the patient would have done or intended under the circumstances. In making this determination, the surrogate must take into account evidence that includes, but is not limited to, the patient’s personal, philosophical, religious and moral beliefs, and ethical values.
If the patient’s wishes are unknown and remain unknown after reasonable efforts to discern them, 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. The surrogate shall take into account any other information, including the views of family and friends, that the surrogate believes the patient would have considered if able to act for himself or herself.
If the decision at issue is whether to forgo life-sustaining treatment, the Illinois Act provides two additional protections for the patient. To “forgo life-sustaining treatment” is defined as to withhold, withdraw, or terminate all or any portion of life-sustaining treatment with knowledge that death is likely to result. “Life-sustaining treatment” is defined as any medical treatment, procedure or intervention that, in the judgment of the attending physician, when applied to a patient with a qualifying condition, would not be effective to remove the qualifying condition or would serve only to prolong the dying process. Such procedures can include, but are not limited to, assisted ventilation, renal dialysis, surgical procedures, blood transfusion, and the administration of drugs, antibiotics, and artificial nutrition and hydration.
The first extra protection is that the patient’s lack of decisional capacity must be certified in writing by a concurring physician and placed in the patient’s medical record. The second additional protection is that the patient must have a qualifying condition, documented in writing in the medical record by the patient’s attending physician and a concurring physician. A qualifying condition is one or more of the following three conditions:
1. Terminal condition, which is defined as an illness or injury for which there is no reasonable prospect of cure or recovery, death is imminent, and the application of life-sustaining treatment would only prolong the dying process;
2. Permanent unconsciousness, which is defined as a condition that, to a high degree of medical certainty, (1) will last permanently, without improvement, (2) in which thought, sensation, purposeful action, social interaction, and awareness of self and environment are absent, and (3) for which initiating or continuing life-sustaining treatment, in light of the patient’s medical condition, provides only minimal medical benefit; or
3. Incurable or irreversible condition, which is defined as an illness or injury (1) for which there is no reasonable prospect of cure or recovery, (2) that ultimately will cause the patient’s death even if life-sustaining treatment is initiated or continued, (3) that imposes severe pain or otherwise imposes an inhumane burden on the patient, and (4) for which initiating or continuing life-sustaining treatment, in light of the patient’s medical condition, provides only minimal medical benefit.
Under the Illinois Act, all health care decisions made by the surrogate must be in consultation with the patient’s attending physician.
The Illinois Act enumerates a number of legislative findings. First, the legislature recognizes that all persons have a fundamental right to make decisions relating to their own medical treatment, including the right to forgo life-sustaining treatment. Moreover, lack of decisional capacity, alone, should not prevent decisions to forgo life-sustaining treatment from being made on behalf of persons who lack decisional capacity. Finally, statutory guidelines for decision making will bring improved clarity and certainty to the process of implementing decisions concerning medical treatment and to forgo life-sustaining treatment and will reduce the associated emotional distress for involved parties. The Illinois Act states its intent that health care surrogate decisions be made, whenever possible, without the need for judicial involvement.
C. New York
New York’s health care surrogacy laws became effective in 1991. A surrogate decision maker’s authority commences upon a determination that the patient lacks capacity to make health care decisions. “Capacity to make health care decisions” is defined as the ability to understand and appreciate the nature and consequences of health care decisions, including the benefits and risks of and alternatives to any proposed health care, and to reach an informed decision. “Health care” is defined as any treatment, service, or procedure to diagnose or treat an individual’s physical or mental condition. “Health care decision” is defined as any decision to consent or refuse to consent to health care.
The patient’s attending physician must make the determination of lack of decisional capacity to a reasonable degree of medical certainty and put it in writing. The determination must include the attending physician’s opinion regarding the cause and nature of the patient’s incapacity, as well as its extent and probable duration, and must be placed in the patient’s medical record. If the decision is to withdraw or withhold life-sustaining treatment, the attending physician must consult with another physician to confirm the determination of lack of decisional capacity, and the consultation is also included in the medical record. If the basis for the determination of lack of decisional capacity is mental illness, the attending physician must consult with a qualified psychiatrist and documentation of the consultation must be included in the medical record. If the basis for the determination of lack of decisional capacity is developmental disability, the attending physician must consult with a physician or clinical psychologist with qualifications as set forth in the statute and a record of the consultation included in the medical record.
The attending physician is under a continuing obligation to confirm the patient’s continued incapacity before complying with an agent’s health care decisions, other than those made at or about the time of the initial determination. The confirmation must be in writing and included in the patient’s medical record. Notwithstanding a determination of lack of decisional capacity, when a patient objects to the determination of incapacity or to a health care decision made by a surrogate, the patient’s objection or decision shall prevail unless the patient is determined by a court of competent jurisdiction to lack capacity to make health care decisions.
If lack of decisional capacity has been established as set forth above, the surrogate shall make health care decisions in accordance with the patient’s wishes, including his or her religious beliefs. If the patient’s wishes are not reasonably known and cannot with reasonable diligence be ascertained, the decision shall be made in accordance with the patient’s best interests. However, when the patient’s wishes regarding administration of artificial nutrition and hydration are not reasonably known and cannot with reasonable diligence be ascertained, the surrogate decision maker shall have no authority to make decisions regarding these measures.
New York allows family members and others to initiate a judicial proceeding to address disputes that arise under the health care surrogacy laws. Such proceedings may be initiated, among other purposes, (1) to determine the validity of a health care proxy; (2) to remove an agent for bad faith or due to unavailability, unwillingness or incompetence to fulfill his or her obligations; and (3) to override the agent’s decisions made in bad faith or contrary to the standards set forth in the health care surrogacy statute.
Oregon enacted its Health Care Decisions Act (Oregon Act) in 1993. Under the Oregon Act, a surrogate decision maker has authority to make a health care decision for a patient only when the patient is incapable. “Health care decision” is defined as consent, refusal of consent, or withholding or withdrawal of consent to health care. “Health care” is defined as the diagnosis, treatment or care of disease, injury and congenital or degenerative conditions, including the use, maintenance, withdrawal or withholding of life-sustaining procedures and the use, maintenance, withdrawal or withholding of artificially administered nutrition and hydration. “Incapable” is defined as (in the opinion of the court in a proceeding to appoint or confirm authority of a health care representative, or in the opinion of the patient’s attending physician) the patient’s lack of the ability to make and communicate health care decisions to health care providers, including communication through persons familiar with the patient’s manner of communicating if those persons are available.
In making health care decisions, the surrogate has the duty to act consistently with the desires of the patient as expressed in an advance directive, or as otherwise made known by the patient to the surrogate at any time. If the patient’s desires are unknown, the surrogate has a duty to act in what the surrogate in good faith believes to be in the patient’s best interests.
A surrogate does not have authority to make a health care decision on behalf of the principal with respect to admission to or retention in a health care facility for care or treatment of mental illness, convulsive treatment, psychosurgery, sterilization, or abortion.
The Oregon Act provides extra protections if the decision involves withholding or withdrawing a life-sustaining procedure. “Life-sustaining procedure” is defined as any medical procedure, pharmaceutical, medical device or medical intervention that maintains life by sustaining, restoring or supplanting a vital function. “Life-sustaining procedure” does not include routine care necessary to sustain patient cleanliness and comfort. The first extra protection is that the health care surrogate is not authorized to withhold or withdraw life-sustaining procedures if the patient manifests an objection. In addition, the surrogate may not consent to withholding or withdrawing of a life-sustaining procedure unless the surrogate has been given authority to make such a decision, or the patient has one of the following conditions:
1. Terminal condition, which is defined as a health condition in which death is imminent irrespective of treatment, and when the application of life-sustaining procedures or the artificial administration of nutrition and hydration serves only to postpone the moment of death;
2. Permanently unconscious, which is defined as completely lacking an awareness of self and external environment, with no reasonable possibility of a return to a conscious state, and that condition has been medically confirmed by a neurological specialist who is an expert in the examination of unresponsive individuals;
3. A condition in which the administration of life-sustaining procedures would not benefit the patient’s medical condition and would cause permanent and severe pain; or
4. A progressive, debilitating illness that will be fatal and is in its advanced stages, and the patient is consistently and permanently unable to communicate, swallow food and water safely, care for himself or herself, recognize his or her family and other people, and there is no reasonable chance that the patient’s underlying condition will improve.
Oregon’s Act also provides additional protections if the decision is to withhold or withdraw artificially administered nutrition and hydration, other than hyperalimentation, necessary to sustain life. “Artificially administered nutrition and hydration” is defined as a medical intervention to provide food and water by tube, mechanical device or other medically assisted method. The term does not include the usual and typical provision of nutrition and hydration, such as the provision of nutrition and hydration by cup, hand, bottle, drinking straw, or eating utensil. The first extra protection is that the health care surrogate is not authorized to withhold or withdraw artificially administered nutrition and hydration if the patient manifests an objection. In addition, it is presumed that the patient has consented to artificially administered nutrition and hydration, other than hyperalimentation, necessary to sustain life, except in one or more of the following circumstances:
1. The patient while a capable adult clearly and specifically stated that he or she would have refused artificially administered nutrition and hydration;
2. Administration of such nutrition and hydration is not medically feasible or would itself cause severe, intractable, or long-lasting pain;
3. An appointed surrogate has been given authority to make decisions on the use, maintenance, withholding or withdrawing of artificially administered nutrition and hydration;
4. The patient does not have an appointed surrogate or an advance directive that clearly states that the person did not want artificially administered nutrition and hydration, and the patient is permanently unconscious;
5. The patient does not have an appointed surrogate or an advance directive that clearly states that the person did not want artificially administered nutrition and hydration, and the patient has a terminal condition;
6. The patient has a progressive illness that will be fatal and is in an advanced stage, the patient is consistently and permanently unable to communicate by any means, swallow food and water safely, care for himself or herself, and recognize his or her family and other people, and it is very unlikely that the patient’s condition will substantially improve.
The conditions specified in paragraphs 2, 4, 5, and 6 must be medically confirmed to overcome the presumption that the patient has consented to artificially administered nutrition and hydration. When life-sustaining procedures or artificially administered nutrition and hydration are withheld, care must be provided to insure comfort and cleanliness, including but not limited to oral and body hygiene; reasonable efforts to offer food and fluids orally; medication, positioning, warmth, appropriate lighting, and other measures to relieve pain and suffering; and privacy and respect for the patient’s dignity and humanity. The Oregon Act provides for judicial review of a surrogate decision pursuant to petition filed by an interested person.
E. Texas: A Different Approach — No Best Interest Analysis
Texas enacted its Advance Directives Act (Texas Act) in 1999. Under the Texas Act, a surrogate is authorized to make decisions for the patient only when the patient is incompetent or incapable of communication. “Incompetent” is defined as lacking the ability, based on reasonable medical judgment, to understand and appreciate the nature and consequences of a treatment decision, including the significant benefits and harms of and reasonable alternatives to a proposed treatment decision.
If the patient is a qualified patient who is incompetent or incapable of communication, and the patient has executed an advance directive, the health care surrogate shall make a treatment decision in accordance with the patient’s directions. “Qualified patient” is defined as a patient with a terminal or irreversible condition that has been diagnosed and certified in writing by the attending physician. “Terminal condition” is defined as an incurable condition caused by injury, disease, or illness that according to reasonable medical judgment will produce death within six months, even with available life-sustaining treatment provided in accordance with the prevailing standard of medical care. A patient in a qualified hospice program is presumed to have a terminal condition. “Irreversible condition” is defined as a condition, injury, or illness that may be treated but is never cured or eliminated; that leaves a person unable to care for or make decisions for the person’s own self; and that, without life-sustaining treatment provided in accordance with the prevailing standard of medical care, is fatal. The attending physician must certify that a patient is a “qualified patient,” based on a diagnosis of a terminal or irreversible condition. “Treatment decision or health care” is defined as consent, refusal to consent, or withdrawal of consent to health care, treatment, service, or a procedure to maintain, diagnose, or treat an individual’s physical or mental condition.
When a qualified patient who is incompetent or incapable of communication has not executed an advance directive, the attending physician and the surrogate decision maker may make a treatment decision on behalf of the patient that includes a decision to withhold or withdraw life-sustaining treatment. “Life-sustaining treatment” is defined as treatment that, based on reasonable medical judgment, sustains the life of a patient and without which the patient will die. The term includes both life-sustaining medications and artificial life support, such as mechanical breathing machines, kidney dialysis treatment, and artificial nutrition and hydration. The term does not include the administration of pain management medication or the performance of a medical procedure considered to be necessary to provide comfort care, or any other medical care provided to alleviate pain.
The Texas statute provides that the fact that an adult qualified patient has not executed an advance directive does not create a presumption that the patient does not want a treatment decision to be made to withhold or withdraw life-sustaining treatment. However, the Texas statute also requires that surrogate treatment decisions made when the patient has not executed an advance directive must be based on knowledge of what the patient would desire, if known. Moreover, before withholding or withdrawing life-sustaining treatment, the attending physician must determine that the steps proposed are in accord with the patient’s desires. Texas has no provision for decision making based on the patient’s best interests, or pursuant to any other standard, when there is no advance directive and the patient’s wishes are unknown.
Another peculiarity of the Texas statute is its handling of judicial challenges to surrogate decisions. Under the Texas statute, an interested person who wishes to challenge a treatment decision must petition for temporary guardianship under the Texas Probate Code.
The Texas statute explicitly recognizes the validity of advance directives executed in other states, and provides that such directives shall be given the same effect as a directive validly executed under Texas law. Under Texas law, life-sustaining treatment may not be withheld or withdrawn from a pregnant patient.
F. In re Conroy
As shown above, most states employ a three-step inquiry, or a variation thereof, in their health care surrogacy laws:
1. Does the person have capacity to make and communicate the health care decision? If so, the person’s decision will control.
2. If the person does not have decisional capacity, the second inquiry is substituted judgment: What would the person have wanted?
3. If the person’s wishes cannot be determined, the analysis will continue to the third inquiry: What is in the person’s best interest?
As the case studies below will show, these inquiries can be difficult. An influential case from the Supreme Court of New Jersey, In re Conroy, provides valuable discussion of the factors that a surrogate decision maker should consider when making a substituted judgment or best interest determination.
Clair Conroy was adjudicated disabled and her only living relative, her nephew, was appointed her guardian. Ms. Conroy, who resided in a nursing home, had organic brain syndrome, was severely demented, and was unable to speak or respond to verbal stimuli. She was non-ambulatory and confined to her bed, unable to move from a semi-fetal position. She was unable to swallow and had a nasogastric tube to provide food and medicine. She had a urinary catheter and could not control her bowels. Ms. Conroy had necrotic gangrenous ulcers on her left foot and necrotic decubitus ulcers on her legs and hip. She suffered from arteriosclerotic heart disease, hypertension, and diabetes mellitus.
In re Conroy was decided in 1985, before New Jersey enacted its health care surrogacy law. The nephew therefore moved the court in the guardianship case to remove his aunt’s feeding tube. After an evidentiary hearing, the trial court granted the nephew’s motion, but the appellate court reversed. In affirming the trial court and reversing the appellate court, the New Jersey Supreme Court found that Ms. Conway had constitutional and common law rights to privacy and bodily integrity that encompassed the right to refuse treatment, including artificial nutrition and hydration, through a substitute decision maker.
The Court’s decision has a thoughtful and substantive discussion of factors the surrogate decision maker should consider when engaged in an analysis of substituted judgment and best interest. Regarding substituted judgment, the Court emphasized that the inquiry is not what a reasonable or average person would have chosen under the circumstances, but what the particular patient would have done if able to choose for himself. To answer this question, the surrogate decision maker should investigate the existence of written documents such as a living will, power of attorney, or other advance directive. The decision maker should also investigate whether the patient gave an oral directive to a family member, friend, or health care provider, or whether the patient voiced a reaction regarding medical treatment administered to others. Evidence might also be deduced from the person’s religious beliefs and the tenets of that religion, or from a pattern of conduct with respect to prior decisions about his or her own medical care.
The Court then discussed the relative probative value of various pieces of evidence. Although all evidence tending to demonstrate a person’s intent should be considered by a surrogate decision maker, the probative value may vary depending on factors such as the remoteness, consistency, and thoughtfulness of the prior statements and actions and the maturity of the person at the time of the statements or acts. For example, the Court explained, an offhand remark about not wanting to live under certain circumstances made by a person when young and in the peak of health would not, in itself, constitute proof 20 years later that he or she would want life-sustaining treatment withheld under those circumstances. In contrast, a carefully considered position, especially if written, that a person maintained over a number of years or that he had acted upon in comparable circumstances might be strong evidence of intent. Another factor impacting the probative value of prior statements is their specificity. While one cannot accurately predict the precise medical circumstances he may face in the future, any details about the level of impaired functioning and the forms of medical treatment that one would find tolerable are of value.
The Court emphasized that, since the goal is to effectuate the patient’s right of informed consent, the surrogate decision maker must have at least as much medical information upon which to base a decision as one would expect a competent patient to have before consenting to or rejecting treatment. Depending on the case, such information might include evidence about the patient’s level of physical, sensory, emotional, and cognitive functioning; the degree of physical pain resulting from the medical condition, treatment, and termination of treatment; the degree of humiliation, dependence, and loss of dignity likely resulting from the condition and treatment; the life expectancy and prognosis for recovery with and without treatment; the various treatment options; and the risks, side effects, and benefits of each of those options. Care should be taken not to base a decision on a premature diagnosis or prognosis.
In the event that the patient’s wishes cannot be ascertained, the Conroy Court discussed factors that the surrogate decision maker should take into account when determining what is in the patient’s best interest. These include whether the burdens of the patient’s continued life outweigh the benefits of that life. The Court explained that this means that the patient is suffering and will continue to suffer throughout the expected duration of his or her life, and the net burdens of his or her prolonged life outweigh any physical pleasure, emotional enjoyment, or intellectual satisfaction that the patient may still be able to derive from life. As with the substituted judgment inquiry, medical evidence must be considered when determining what is in the patient’s best interest. Medical information is particularly important with respect to the degree, expected duration, and constancy of pain with and without treatment, and the possibility that the pain could be reduced by drugs or other means short of terminating the life-sustaining treatment. Medical information about the patient’s life expectancy, prognosis, level of functioning, degree of humiliation and dependency, and treatment options, should also be considered.
Finally, the Court emphasized that although the surrogate decision maker should consider factors such as pain, suffering, and enjoyment of life, the inquiry is not based on an assessment of personal worth or social utility of the person’s life or the value of that life to others. The mere fact that a person’s functioning is limited or the prognosis is dim does not mean that it is in his or her best interests to die.
III. Bonnie T.
Bonnie T., who was 57 years old when the Public Guardian’s Office was called upon to make an end-of-life decision on her behalf, was one of the Office’s younger wards. Nonetheless, she was extremely medically fragile and complex.
Ms. T. worked as a registered nurse until her health deteriorated when she was in her 40s. She had a history of brain cancer, having had a tumor removed when she was 45. In her late 40s and early 50s, Ms. T. had a series of strokes and resultant seizure disorder, which caused a cognitive decline. When she was 54, Ms. T.’s left leg was amputated above the knee due to gangrenous decubitus ulcers that she developed at a nursing home. She had other decubitus ulcers, including a Stage IV sacral wound. In addition, Ms. T. had chronic encephalopathy and sepsis, as well as hypertension, hypothyroidism, diabetes, degenerative joint disease, and peripheral vascular disease. She was on 16 different medications.
Ms. T. was completely unresponsive to both verbal and tactile stimuli. She suffered from respiratory failure and was on a ventilator. She was unable to eat, and was being supplied nourishment and medicine through a nasogastric tube. Nonetheless, her health care providers were having difficulty administering sufficient nutrition due to malabsorption syndrome and poor circulation.
The Public Guardian’s Office obtained a written certification from Ms. T.’s attending physician and a concurring physician documenting the above medical conditions. The doctors also certified Ms. T.’s lack of decisional capacity. In addition, the doctors certified all three qualifying conditions, any one of which is required under Illinois law to forgo life-sustaining treatment: terminal condition, permanent unconsciousness, and an incurable or irreversible condition. The doctors also certified that Ms. T.’s condition was poor, chronic, and guarded. She had multi-system failure with no hope of recovery. They likewise certified that Ms. T. was in a chronic debilitative state with no quality of life. No alternative treatments were available to improve her condition; to the contrary, she would only suffer more with more medical intervention. As a result, both physicians strongly recommended a DNR order and withdrawal of life support with only the provision of comfort care.
Interviews were conducted with Ms. T.’s family, consisting of her mother, sister, two brothers, and a daughter. Ms. T.’s mother and her brothers reported that they had no specific discussions with Ms. T. about end-of-life issues. However, they emphasized that Ms. T. was a nurse by profession and believed that she would not want to remain alive under the circumstances. They strongly urged the Public Guardian’s Office to withdraw the life support. The sister said that she had a specific discussion with Ms. T. approximately 12 years earlier, shortly before the surgery to remove the brain tumor, about life-sustaining treatment including specifically remaining on a ventilator. During the discussion, Ms. T. was clear that she would not want to be on life support if she had only minimal prospects for recovery. The sister, like the other family members, urged that life support be removed. Ms. T.’s daughter could not be interviewed because her whereabouts were unknown. Moreover, it is alleged that seven years earlier the daughter had used a power of attorney for property to help herself to $35,000 of her mother’s funds.
On occasion I lecture on surrogate decision making to attorneys and health care providers, and I use this case study. I typically stop at this point, and ask the attendees if they would be comfortable ordering withdrawal of life support based on the above information. The overwhelming consensus is “yes.” Applying the three-step analysis, the necessary certifications showed that Ms. T. lacked decisional capacity, being able to neither make nor communicate a decision about her care. Therefore, one can move on to the second step, substituted judgment. The available evidence suggests that Ms. T. would want life support withdrawn. This evidence consists of the generalized beliefs of Ms. T.’s mother and brothers, the specific discussion about life support with her sister, and the lack of contrary evidence. Even if one were to deem this evidence insufficiently strong to make a substituted judgment decision with confidence, the same outcome — withdrawal of life support — results under step three, best interest.
But then I tell the audience about Ms. T.’s husband. He is alleged to have been physically and verbally abusive to Ms. T. during their marriage. He had a criminal history that included a felony conviction for bank robbery. Much of the time he did not work, relying on Ms. T.’s income as a nurse. Instead, he would be gone from the house for extended periods. It was reported that he had a drinking problem. He resented that the Court selected the Public Guardian’s Office over him to be Ms. T.’s guardian and was verbally abusive and threatening to our staff. As just one of many examples, the attorney from the Public Guardian’s Office assigned to this case was a quadriplegic in a wheelchair. The husband once left this attorney a threatening voice mail message to the effect that when he (the husband) was done with the attorney, the attorney would wish that being in a wheelchair was the worst of his problems. The husband was also verbally abusive and threatening to the staff at Ms. T.’s nursing home.
When I present this case study, I stop again at this point and ask whether the husband should be contacted. A few people in the audience opine that there is no reason to contact him, that whatever information he has to offer would be suspect and could not overcome the evidence above. Some go so far as to opine that, due to his behavior, the husband has no “right” to have input in the decision. However, the majority state that all possible evidence should be considered. They also point out that the inquiry has nothing to do with the husband’s rights; instead it must focus on Ms. T.: what she would have wanted and what is in her best interest. There is no way of knowing whether the husband has information probative on these points without talking with him.
The Public Guardian’s Office typically takes the latter approach. It wants to err in favor of obtaining all possible evidence even if it might be of limited evidentiary value. Therefore, the Office attempted to contact the husband. Because he did not have a telephone, the Office sent letters to him explaining the situation, and stating that it was going to be making a decision about withdrawal of life support and that it was urgent that he call if he had input to provide. The letters were sent by mail and by messenger, and a letter was also posted on his door. The husband responded with several expletive-laden voice mails to the effect that the Public Guardian’s Office had better not kill his wife.
When I present this case study, I stop here and ask whether this changes anyone’s decision about withdrawal of life support. The overwhelming response is “no.” Regarding step one of the inquiry, the husband’s messages did not change the fact that Ms. T. lacks decisional capacity. Regarding step two, substituted judgment, the husband’s messages shed no light on what Ms. T. would want. In fact, his messages were about himself, and what he wanted, and provided no evidence about what Ms. T. would want. Likewise, regarding step three, the husband’s messages had no relevance as to what was in Ms. T.’s best interest.
Then I relate a final fact. Recall that Ms. T. had a daughter, whereabouts unknown, who had abused a power of attorney for property approximately seven years earlier to help herself to $35,000 of her mother’s funds. At approximately the same time that Ms. T. signed the power of attorney for property, she also signed a power of attorney for health care naming her daughter as agent. In the power of attorney for health care, Ms. T. initialed a box stating that she wanted her life to be prolonged to the greatest extent possible without regard to her condition, the chances for recovery, or the cost of the procedure. Although the court in the guardianship case had revoked both powers of attorney when it appointed the Public Guardian’s Office as Ms. T.’s guardian, this is obviously an important piece of evidence of Ms. T.’s wishes.
Ms. T. signed this power of attorney seven years earlier, when she was 50 years old. This was around the time that she was suffering the series of strokes with resultant seizure disorder causing her cognitive decline. Therefore, there were questions about her capacity at that time. The Public Guardian’s Office was able to track down and interview the attorney who prepared the document and who was present when Ms. T. signed it. The attorney did not recall his discussions with Ms. T. about the power of attorney. However, he said that it is his practice to determine the client’s competence before the client signs such a document. It is his routine to ask questions to confirm that the person is oriented as to time and current events, such as the name of the President, the year, and home address. It is also his practice to review the power of attorney with the client, focusing on the choice regarding life-sustaining treatment.
When we interviewed Ms. T.’s family, none of them had any idea about this power of attorney. They were highly surprised that Ms. T. would sign such a statement, and were also surprised that she would sign a health care directive and not tell anyone about it. They also questioned whether Ms. T. would have had cognitive capacity when she signed the document.
Here I again stop, and ask the audience what they would do. At this point most people are unsure about what to do. The overwhelming consensus is that it would be in Ms. T.’s best interest to remove support, but her best interest comes into play only if her wishes cannot be ascertained, and there is a written instrument that purports to express her wishes. Yet this instrument is inconsistent with her expressed wishes as reported by a close family member, the instrument is also inconsistent with what others in the family believe she would have wanted, and there are multiple red flags about the circumstances under which the instrument was executed.
So what did the Public Guardian’s Office do? It filed an emergency report to the court that set forth the facts, including the doctors’ certifications and affidavits, and asked the court for direction. The court, however, declined to provide direction, and entered an order directing the Public Guardian’s Office to make an end-of-life decision for the ward in accordance with the Health Care Surrogate Act.
At that point, the Public Guardian’s Office arranged a consult with Professor Katie Watson, a bioethicist at the Northwestern University Feinberg School of Medicine. Professor Watson agreed that there was little question about lack of decisional capacity. She also agreed that, under a best interest determination, life support should be withdrawn, but this inquiry comes into play only if Ms. T.’s wishes cannot be ascertained. As far as the substituted judgment inquiry, the question is what respective weight to give the written and more recent power of attorney versus the discussion with the sister, and the other family members’ beliefs as to what Ms. T. would have wanted.
Professor Watson offered an insight that the Office had not thought of with regard to the evidentiary value of the power of attorney. The professor suggested that the context of Ms. T.’s relationship with her abusive husband should be included in the interpretation of the power of attorney. Specifically, given the abusive and dysfunctional relationship with the husband, it is possible Ms. T. believed that such an advance directive might be necessary to ensure that she received the medical care she might need in the future.
Professor Watson opined that the power of attorney was not dispositive and constituted but one piece of evidence to be considered with all of the other evidence, which included that:
1. The power of attorney for health care named the daughter as agent, was signed around the same time as the power of attorney for property that also named the daughter as agent, and the daughter was alleged to have used the latter power of attorney to steal her mother’s funds;
2. The power of attorney for health care was inconsistent with Ms. T.’s oral directive to her sister that she did not want to be on life support, including specifically a ventilator if she had only minimal prospects for recovery;
3. Ms. T.’s mother, sister, and brothers believed that Ms. T. would not want to continue to be kept alive on a ventilator under the circumstances;
4. Ms. T. did not tell her mother, sister, or brothers about the power of attorney;
5. The power of attorney was signed years earlier and under circumstances that were very different than Ms. T.’s current medical situation; and
6. There are at least some questions about Ms. T.’s capacity when she signed the document.
When all of the conflicting evidence is considered together, Ms. T.’s wishes are unclear and cannot be reasonably ascertained. Therefore, it was appropriate to move on to the third inquiry, best interest. The professor agreed with the Public Guardian’s Office, the medical providers, and the family members that it would be in Ms. T.’s best interest to remove life support.
The Public Guardian’s Office authorized withdrawal of the ventilator and put in place a DNR order. Ms. T. died shortly after the ventilator was removed. Her health care providers reported that she died peacefully and in comfort, surrounded by family members.
The following week the Public Guardian’s Office received beautiful, thoughtful cards from Ms. T.’s family members expressing their appreciation for the care provided to Ms. T. during the time the Public Guardian’s Office was her guardian and thanking the Office for reaching the decision to allow her to die peacefully and in comfort.
When I present this case study, I am sometimes asked why the Public Guardian’s Office, which is limited to serving as guardian of last resort, was appointed guardian over the various family members. The court was uncomfortable appointing the husband due to his criminal history, including a felony conviction for bank robbery, as well as his abusive history. Ms. T.’s mother, while loving and concerned, was elderly and lived out of state. As for the siblings, they feared that the husband would oppose anything they would attempt to do for Ms. T. as guardian, and also expressed fear of his violent and abusive background. Under the circumstances, the court felt that the Public Guardian’s Office was the most appropriate guardian for Ms. T., and the Office accepted appointment.
IV. Sarah W.
Immediately upon being appointed as Sarah W.’s guardian, the Public Guardian’s Office was called upon to make a decision about withdrawal of life support and a DNR order. Another public guardianship office, the Office of the State Guardian (OSG), had been Ms. W.’s guardian for approximately three weeks when it was discovered that she had more than $25,000 in assets, and guardianship was transferred to the Public Guardian’s Office.
A hospital referred Ms. W. for guardianship when its ethics committee concluded that she was appropriate for a DNR order and withdrawal of life support, but she had no known family or significant others to provide consent. Ms. W. was hospitalized when concerned neighbors found her on the floor of her apartment after not being seen or heard from for several days. Ms. W. was 82 years old.
The hospital determined that Ms. W. had suffered a stroke causing left-side hemiplegia and significant brain damage. She also had advanced congestive heart failure and acute renal failure. The hospital diagnosed end-stage renal disease and implemented dialysis three times weekly. Dialysis had to be discontinued when Ms. W. developed respiratory distress and was placed on a ventilator. Ms. W. also had stage II decubitus ulcers on her sacrum, mid-back and left hip. She had a Foley urinary catheter and a gastrostomy tube. Ms. W. was totally unresponsive, unable to communicate even in non-verbal ways.
The hospital and the predecessor guardian, OSG, had searched for family members and significant others and found none. When she was able to communicate, Ms. W. had indicated that she had no family or friends. Her neighbors and landlord were unaware of any family or friends, and reported that Ms. W. kept to herself and had no visitors. Upon its appointment as guardian, OSG searched Ms. W.’s apartment for clues as to family and friends, but found no leads. Nor did OSG discover any advance directives or evidence as to Ms. W.’s wishes regarding end-of-life decisions. Upon its appointment, the Public Guardian’s Office searched the apartment for a second time and investigated for family members, but also could find no living family members or significant others.
Ms. W.’s physicians recommended a DNR order and withdrawal of life support. She clearly lacked decisional capacity, her wishes were unknown after diligent inquiry and investigation by the hospital and by two public guardianship offices, and it was in Ms. W.’s best interest to withdraw life support. She had no quality of life and was suffering as toxins developed in her body without the possibility of dialysis due to her respiratory distress.
The Public Guardian’s Office was appointed on a Thursday, and had already completed much of its investigation and due diligence during the process of transferring the guardianship from the OSG. The Public Guardian’s Office was therefore prepared to consent to withdrawal of support and a DNR order as of the next afternoon, a Friday. It wanted to implement these measures before the weekend. However, as it was about to do so, the Office received a voice mail message from a caller who identified himself as a rabbi. The caller stated that Ms. W. was a religious Jew, and that withdrawal of life support is contrary to Jewish law. He left a cell phone number and requested that we call him as soon as possible before sunset, when the Jewish Sabbath begins.
At the outset, there are many red flags and questions raised by this message. Who is the rabbi? How does he know Ms. W.? How long has he known her? What is the basis of his belief that she is religious? From our investigation we knew that Ms. W. was Jewish, but there was no evidence that she was observant. There was no evidence that she belonged to a synagogue. Her apartment was devoid of religious articles such as a Passover plate, menorah, or mezuzah. Moreover, the statement that withdrawal of life support is contrary to Jewish law is, at best, simplistic and lacking in nuance. In fact, our office has consented to withdrawal of life support on behalf of wards who were observant Jews, after consultation with orthodox rabbinical authorities on bioethics.
We called the rabbi. He had first met Ms. W. a few weeks earlier at the hospital. When he has spare time, this rabbi makes the rounds of the local hospitals to minister to Jewish patients. When I asked the rabbi the basis of his belief that Ms. W. was religious, he stated that he sensed that Ms. W. had religious conviction, even though she was unable to communicate. I then explained that there were no religious items in Ms. W.’s home. The rabbi replied that many people who are not religious during their lives become religious when they are near death. The rabbi advocated that we not withdraw life support until a Beit Din, or Jewish Council of Law, could be assembled. This likely could not occur, at the earliest, until after the Jewish Sabbath ended on Saturday night.
The role of religion can be critical in step two of the analysis: substituted judgment. In cases in which the evidence shows that a ward would have wanted to abide by the tenets of their faith, the Public Guardian’s Office does so. In such cases, the Office often consults with clergy, in particular clergy who have a relationship with the ward and his or her family as well as clergy in the faith who are knowledgeable of bioethics issues. However, when the evidence shows that the person was uninvolved in their religion or lived a secular life, and their wishes cannot be determined, the Office moves on to the best interest determination. This was explained to the rabbi, and he was appreciative of the need to follow the requirements of the guardianship and health care surrogacy laws.
The Office consented to withdrawal of life support and a DNR order late in the day that Friday. Ms. W. died peacefully in her sleep the next day.
In addition to the role of religion, this case implicates the tension between the sometimes competing objectives of making medical decisions in a timely manner for the comfort and dignity of the patient, versus obtaining all possible relevant information. Because Ms. W. was suffering from renal failure but could not continue dialysis, especially when considered in combination with her other medical conditions, her doctors considered keeping Ms. W. alive as a form of suffering. They urged the Public Guardian’s Office not to go into the weekend without appropriate orders. At the same time, however, the Office had only been Ms. W.’s guardian for a short time, and did not want to make an irreversible decision without the benefit of as much information as possible. While the rabbi’s information ultimately did not change its position, the Office would have viewed it as irresponsible not to have tried to reach him. But what if it was unable to reach the rabbi before the Sabbath started at sunset? Should the Office have delayed a decision by at least 24 hours when there was no evidence that Ms. W. was religious or would want religious law to guide the decision? When there was such limited time to gather information and little was known about the ward? Fortunately it did not come to that.
As a postscript, as a courtesy the Public Guardian’s Office called the rabbi on Saturday night to inform him that Ms. W. had passed away earlier in the day. The rabbi stated that he felt a connection to her, and offered to perform the burial service without compensation. He even arranged to have members of his congregation bussed to the service and burial so that Ms. W. would not leave this world alone. The assigned attorney from the Public Guardian’s Office and I also attended the service and burial, at which the rabbi officiated.
V. Eula W.
Eula W., age 84, was extremely medically fragile. She had advanced Alzheimer’s disease, infective endocarditis (infection to the lining of her heart), encephalopathy, and multiple infections resistant to medications. Ms. W. had multiple additional diagnoses, including coronary artery disease, congestive heart failure, diabetes, seizure disorder, renal insufficiency, hypertension, multiple non-healing decubitus ulcers, anemia, and latent syphilis. She suffered from respiratory failure and was on a ventilator. Ms. W. also had a gastrostomy tube because she was unable to swallow. Her doctors certified lack of decisional capacity, and were strongly advocating for withdrawal of life support and a DNR order.
Ms. W.’s only family was a stepdaughter who lived out of state and had limited involvement. The stepdaughter and Ms. W. were estranged and did not get along. Their differences became exacerbated when Ms. W.’s husband (the stepdaughter’s father) died, and the stepdaughter believed that Ms. W. had wrongfully received the inheritance.
Nonetheless, the Public Guardian’s Office called the stepdaughter to determine whether she had any relevant information. As discussed above, when in doubt the Office would rather err on the side of obtaining all possible information, and then determine its appropriate weight.
When the Public Guardian’s Office called, the stepdaughter said that she needed to speak with her husband and would call back. When she did not call back, the Office called her again. The stepdaughter stated that she did not want life support withdrawn or a DNR order put in place for Ms. W. When asked whether she ever had any specific conversations with Ms. W. about a DNR order or withdrawal of life support, the stepdaughter stated that “she wouldn’t want that.” When again asked whether she ever had any specific discussions with Ms. W., the stepdaughter said that they had discussed these issues many times, and Ms. W. would not want a DNR order. The attorney and case manager who interviewed the stepdaughter were unsure whether the stepdaughter had actually discussed end-of-life issues with Ms. W. The attorney and case manager believed that the stepdaughter was reporting her own desires, rather than Ms. W.’s.
Ms. W. had two friends, although neither had seen her for several years. For several decades Ms. W. had owned and operated a tavern in Chicago, and she knew these friends because they frequented the tavern. The first friend reported that the issue of a DNR order came up during a conversation with Ms. W. some 20 years earlier. The discussion took place at the bar. During this conversation, Ms. W. said that she would not want a DNR order, and that she needed to get papers to reflect this. In Ms. W.’s personal effects, no such papers were located. The Public Guardian’s Office then asked the friend a series of questions about Ms. W.’s condition, and whether Ms. W. would want to be hooked up to machines keeping her alive in these circumstances. The friend did not waiver in her position that Ms. W. would not want withdrawal of life support or a DNR order. Because the discussion took place at a tavern, the Office asked the friend whether she or Ms. W. had been drinking when the conversation occurred. The friend replied that Ms. W. did not drink when she was working at the bar. Regarding her own condition, the friend stated to the effect that she was not inebriated at the time.
The second friend had not seen Ms. W. for about five years. She reported never having a conversation with Ms. W. about end-of-life issues. However, based on her knowing Ms. W. for many years, the friend opined that Ms. W. was “vibrant, a fighter, and would fight to live.” When Ms. W.’s condition, the doctors’ recommendations, and the reasons for their recommendations were explained more explicitly, the friend remained firm in her belief that Ms. W. was a fighter and would not want withdrawal of life support or a DNR order. This friend was also aware that Ms. W.’s stepdaughter did not want a DNR order, but did state her belief that the stepdaughter did not fully comprehend all the circumstances of Ms. W.’s illness because she lived so far away and had not seen her stepmother in some time.
The Public Guardian’s Office felt conflicted about its decision. The Office strongly agreed with Ms. W.’s physicians that it would be in her best interest to withdraw life support and authorize a DNR order, but you only get to the best interest inquiry if the patient’s wishes cannot be determined. There was a stepdaughter and two friends reporting that Ms. W. would want to be kept artificially alive, but their information was suspect.
The Public Guardian’s Office decided to file a motion in court seeking direction. After a hearing, the court concluded that, regarding the substituted judgment analysis, all of the available evidence showed that Ms. W. would want to remain on life support, and there was no contrary evidence. The court found the evidence sufficient to support a determination that this is what Ms. W. would want. The court therefore directed the Public Guardian’s Office not to withdraw life support or enter a DNR order.
Ms. W. lived for another 14 months. Based on the court’s order, Ms. W. had a full code status that entire period. She never recovered more than minimal brain activity or the ability to speak or communicate. During this time Ms. W. suffered illnesses including fevers, pneumonia, episodes of vomiting, fungal infections, and abnormal labs. On the day she died, Ms. W. went into cardiac arrest. Because she had a full code status, hospital staff attempted to revive her for approximately 40 minutes before she was declared dead.
Of all the decisions the Public Guardian’s Office is called upon to make on behalf of its wards, health care surrogate issues are among the hardest. Such decisions implicate many disciplines, and go to the essence of the meaning and dignity of life. Moreover, end-of-life decisions such as DNR orders and removal of life support orders can be irreversible.
One lesson from the case studies discussed above is the need for attorneys to counsel clients to sign detailed and thoughtful advance directives. Attorneys should also counsel clients to have open and frank conversations with family members about health care surrogate issues, and especially end-of-life issues, even though such discussions might be uncomfortable for some clients. The advance directives should be reviewed and updated on a regular basis — at least every few years. Copies of up-to-date advance directives should be provided to family members, significant others, health care providers, and maintained in the client’s home with other important personal and legal papers.
Although the existence of a purported advance directive did not result in an easy decision in Bonnie T.’s case, a clear and detailed advance directive would likely have simplified the decisions in Sarah W. and Eula W.’s cases. In fact, in the majority of cases in which the Public Guardian’s Office has to make an unusually difficult health care surrogate decision, there is no advance directive in place and the existence of an advance directive would likely have resulted in a more straightforward decision. A clear advance directive not only makes an already difficult situation easier for loved ones and surrogate decision makers in the event that a health care decision must be made on behalf of the client, but the existence of the directive makes it more likely that the ultimate decision will accurately reflect the desires and values of the client.
In general, powers of attorney are preferable to living wills. Unlike most living wills, a power of attorney delineates whom the client trusts and desires to make the decision, as opposed to merely articulating the client’s wishes if certain conditions arise. This not only allows for more expeditious decision making, but also serves to reduce disagreements within the family and the need for a guardian or court to become involved. However, for a variety of reasons some clients may not want to select certain family members over others and may prefer a living will. In the experience of our office, a carefully crafted and detailed living will can also provide valuable guidance in the event a surrogate decision has to be made.
The case studies above also demonstrate the importance of interdisciplinary consults when making health care surrogate decisions. In all cases, consults with the treating doctor are essential. Indeed, most state health care surrogacy statutes explicitly require consultation with the treating doctors. It is often valuable for the surrogate decision maker to seek out second opinions and the views of specialists. This is explicitly required under the statutes of some states. As the Supreme Court of New Jersey emphasized in the case of In re Conroy, the surrogate decision maker must have at least as much medical information upon which to base a decision as one would expect a competent patient to have before consenting to or rejecting treatment. Discussions with the treating professionals played an important role in the Public Guardian Office’s decisions in all three of the case studies.
In cases where the evidence shows that the patient would want a decision made consistent with the dictates of his or her religion, consults with clergy are important. At a minimum, the decision maker should consult with clergy who have a relationship with the patient and his or her family. In some circumstances, there should also be consults with clergy in the given faith who have special expertise in bioethics issues.
In unusually hard cases, consultations with bioethicists can be invaluable. Just having a fresh set of eyes review a difficult set of facts can be insightful, and this is particularly true when the eyes belong to a professional with specialized training and experience working through bioethics dilemmas. In Bonnie T.’s case, the consult with the bioethics professor at Northwestern Medical School proved to be of great assistance.
The Public Guardian’s Office has found most bioethicists to be generous and giving of their time. The Office asks for consults with treating doctors, and sometimes seeks second opinions from doctors and specialists who are not connected to the case. The Office seeks consultations with bioethicists at universities and hospitals. It also has called on religious authorities of different faiths. These professionals typically are willing and even eager to help analyze the decisions the Office is called upon to make on behalf of its wards. In fact, I cannot recall a time that an outside bioethics expert asked for a fee or compensation for a consult.
The case studies also point to the importance of obtaining all information about what the patient would want. In most states, the surrogate decision maker is mandated to do what the patient would have wanted, if that can be ascertained. This mandate cannot be fulfilled unless all sources of potential information are explored.
It might be tempting not to interview a relative or significant other whose information may be suspect. This is especially true if the person is unlikeable and unpleasant to deal with — for example, Bonnie T.’s abusive husband. But that person might have knowledge of an indisputable advance directive that unambiguously articulates the patient’s desires. It is important to collect all information and then assign the appropriate evidentiary weight. Although challenging, this is the only way to ensure that you have undertaken all efforts to ascertain and fulfill the person’s wishes.
Finally, when making a substituted judgment decision, the surrogate must put aside his or her own views and values and focus like a laser on what the patient would want. This is difficult, but critical. For example, in Eula W.’s case, her doctors opined that it would be in her best interest to order a DNR and withdrawal of life support. That might also be what at least some of the persons involved in making the decision would want for themselves or their loved ones under the circumstances. However, as the Supreme Court of New Jersey emphasized in the case of In re Conroy, a substituted judgment inquiry is not what a reasonable or average person would have chosen under the circumstances, but what the particular patient would have done if able to choose for himself or herself. The available evidence pointed to Ms. W.’s desire, as her friend from the tavern put it, to fight to live, and the judge supervising the guardianship made a finding that this is what Ms. W. would want. Under such circumstances, the surrogate decision maker is required to respect the wishes of the individual. This is the essence of personal autonomy and bodily integrity in a free society.
Citations Cook County Public Guardian, http://www.publicguardian.org/ag.htm (last visited Oct. 15, 2009.
Id. Cook County, http://cookcountygov.com/portal/server.pt/community/government/226/about_cook_county (last visited July 15, 2010); U.S. Census Bureau, http://quickfacts.census.gov/qfd/states/17000.html (last visited July 15, 2010). Cook County Public Guardian, http://www.publicguardian.org/ag_4.htm (last visited Oct. 15, 2009); see generally Estate of Debevec, 552 N.E.2d 1043, 1046 (Ill. App. 1990) (explaining the preference for family members to serve as guardian because family members are presumed to be more solicitous of the ward’s welfare than a nonrelative). 755 Ill. Comp. Stat. 5/11a-17(a) and (d) (2010); 755 Ill. Comp. Stat. 40/25(a). Because, in Illinois, a plenary guardian has authority to make health care surrogate decisions for the ward, the issue of who should most appropriately serve as the surrogate decision maker usually does not arise in our cases and is not implicated in the case studies discussed in this article. In re Estate of Longway, 549 N.E.2d 292, 294 (Ill. 1990). In re Conroy, 486 A.2d 1209, 1220 (N.J. 1985). UHCDA (1993), http://www.law.upenn.edu/bll/archives/ulc/fnact99/1990s/uhcda93.htm (last visited July 15, 2010). National Conference of Commissioners of Uniform State Laws, http://www.nccusl.org/Update/uniformact_factsheets/uniformacts-fs-uhcda.asp (last visited Oct. 19, 2009). 755 Ill. Comp. Stat. 40/1 et seq. (2010). N.Y. Pub. Health Law §§ 2980 et seq. (Consol. 2010). Or. Rev. Stat. §§ 127.505 et seq. (2007). Tex. Health & Safety Code §§ 166.001 et seq. (2009). In re Conroy, 486 A.2d 1209 (N.J. 1985). The UHCDA is available at http://www.law.upenn.edu/bll/archives/ulc/fnact99/1990s/uhcda93.htm (last visited July 15, 2010). National Conference of Commissioners of Uniform State Laws, http://www.nccusl.org/Update/uniformact_factsheets/uniformacts-fs-uhcda.asp (last visited Oct. 19, 2009). Id. UHCDA § 5(a); see also § 2(c). UHCDA § 1(5). UHCDA § 1(6). UHCDA § 1(3). UHCDA § 5(f); see also § 2(e). Id. Id. See UHCDA § 1, the definitional section, which does not define “best interest.” UHCDA Preamble. Id. UHCDA § 1, Comments. 755 Ill. Comp. Stat. 40/1 et seq. (2010). 755 Ill. Comp. Stat. 40/15, 40/20(c). 755 Ill. Comp. Stat. 40/10. The term “forgo life sustaining treatment” is discussed below. 755 Ill. Comp. Stat. 40/20(c). Id. Id. 755 Ill. Comp. Stat. 40/20(b-5)(1). Id. Id. Id. Id. 755 Ill. Comp. Stat. 40/10. Id. “Qualifying condition” is discussed below. Id. 755 Ill. Comp. Stat. 40/20(c). 755 Ill. Comp. Stat. 40/20(b) and (e). “Imminent” is defined as a determination made by the attending physician according to accepted medical standards that death will occur in a relatively short period of time, even if life-sustaining treatment is initiated or continued. 755 Ill. Comp. Stat. 40/10. Id. 755 Ill. Comp. Stat. 40/20(b)(1), 40/20(b-5)(1). 755 Ill. Comp. Stat. 40/5(a). Id. Id. 755 Ill. Comp. Stat. 40/5(b). N.Y. Pub. Health Law §§ 2980 et seq. (Consol. 2010). N.Y. Pub. Health Law § 2981(4). N.Y. Pub. Health Law § 2980(3). N.Y. Pub. Health Law § 2980(4). N.Y. Pub. Health Law § 2980(6). N.Y. Pub. Health Law § 2983(1)(a). Id. Id. N.Y. Pub. Health Law § 2983(1)(b). N.Y. Pub. Health Law § 2983(1)(c). The consulting physician or clinical psychologist must either be employed by a school delineated by statute, or have a minimum of two years’ employment rendering care and service in a facility operated or licensed by the office of mental retardation and developmental disabilities, or be approved by the commissioner of mental retardation and developmental disabilities in accordance with regulations promulgated by the commissioner. Id. N.Y. Pub. Health Law § 2983(6). Id. N.Y. Pub. Health Law § 2983(5). N.Y. Pub. Health Law § 2982(2). Id.
Id. N.Y. Pub. Health Law § 2992. Id. Or. Rev. Stat. §§ 127.505 et seq. (2007). Or. Rev. Stat. §127.535(1). Or. Rev. Stat. § 127.505(8). Or. Rev. Stat. § 127.505(7). The terms “life-sustaining procedure” and “artificially administered nutrition and hydration” are discussed below. Or. Rev. Stat. § 127.505(13). “Health care provider” is defined as a person licensed, certified or otherwise authorized or permitted by the laws of Oregon to administer health care in the ordinary course of business or practice of a profession. Or. Rev. Stat. § 127.505(11). Or. Rev. Stat. § 127.535(4). Id. Or. Rev. Stat. § 127.540. Or. Rev. Stat. § 127.505(16). Id. Or. Rev. Stat. § 127.535(5). Or. Rev. Stat.§§ 127.540(6)(b)(A), 127.505(22). Or. Rev. Stat. §§ 127.540(6)(b)(B), 127.505(18).
Or. Rev. Stat. § 127.540(6)(b)(C). Or. Rev. Stat. § 127.540(6)(b)(D). Or. Rev. Stat. § 127.505(4). Id.
Or. Rev. Stat. § 127.535(5). Or. Rev. Stat. § 127.580(1). Or. Rev. Stat. § 127.580(3). Or. Rev. Stat. § 127.642. Or. Rev. Stat. § 127.550. Tex. Health & Safety Code §§ 166.001 et seq. (2009). Tex. Health & Safety Code §§ 166.038(a), 166.039(a). Tex. Health & Safety Code § 166.002(8). The term “treatment decision” is discussed below. Tex. Health & Safety Code § 166.038(b). Tex. Health & Safety Code § 166.031(2). Tex. Health & Safety Code § 166.002(13). The term “life sustaining treatment” is discussed below. Id.
Tex. Health & Safety Code § 166.002(9). Tex. Health & Safety Code § 166.040(a). Tex. Health & Safety Code § 166.002(7). Tex. Health & Safety Code § 166.039(a). Tex. Health & Safety Code § 166.002(10). Id. Id. Tex. Health & Safety Code § 166.039(f). Tex. Health & Safety Code § 166.039(c). Tex. Health & Safety Code § 166.040(b). Tex. Health & Safety Code § 166.039(g). Tex. Health & Safety Code § 166.005. Tex. Health & Safety Code § 166.049. In re Conroy, 486 A.2d 1209 (N.J. 1985). In re Conroy, 486 A.2d at 1216-17. Id. Id. Id. at 1217. Id. at 1220-21. Id. at 1218-19. Id. at 1221-23, 1226-29. Id. at 1229. Id. at 1229-30. Id. at 1229. Id. at 1230. Id. Id. Id. Id. at 1230-31. Id. at 1231. Id. Id. Id. at 1232. Id. Id. Id. at 1232-33. Id. at 1233. See § IIB, supra; 755 ILL. COMP. STAT. 40/10, 40/20(b). The daughter allegedly used the money for breast augmentation surgery and cosmetic dental work.
In re Estate of Bonnie T., No. 04 P 6901 (Cir. Ct. Cook County), Emergency Report to Court and Request for Direction, filed December 13, 2007. Id., Order, filed December 13, 2007. See § I, supra; Cook County Public Guardian, http://www.publicguardian.org/ag_4.htm (last visited Oct. 15, 2009); see generally Estate of Debevec, 552 N.E.2d 1043, 1046 (Ill. App. 1990) (explaining the preference for family members to serve as guardian). The husband’s felony conviction, while not an absolute bar, is a factor the court must consider when determining who should most appropriately serve as guardian, taking into account the ward’s best interests. See 755 Ill. Comp. Stat. 5/11a-5(5). The Office of the Cook County Public Guardian is appointed as guardian of last resort for Cook County residents who have more than $25,000 in assets. The Office of the State Guardian is appointed statewide as guardian of last resort and in Cook County for persons with less than $25,000 in assets. 755 Ill. Comp. Stat. 5/13-5. In re Estate of Eula W., No. 06 P 4628 (Cir. Ct. Cook County), Emergency Report to Court and Request for Direction, filed July 1, 2008. Id., Order, filed July 1, 2008. UHCDA § 5; 755 Ill. Comp. Stat. 40/10, 40/20(b)(1), 40/20(b-5)(1), 40/20(c); N.Y. Pub. Health Law §§ 2983(1)(a), 2983(1)(b), 2983(1)(c), 2983(6); Or. Rev. Stat. §§ 127.505(13), 127.580(3); Tex. Health & Safety Code §§ 166.002(8), 166.002(9), 166.002(10), 166.002(13), 166.031(2), 166.039(a), 166.040(a), 166.040(b). Ill. Comp. Stat. 40/20(b)(c) and (e); N.Y. Pub. Health Law §§ 2983(1)(a), (b) and (c).
In re Conroy, 486 A.2d at 1231-32. See § II, supra. In Texas, a decision to withdraw or withhold life-sustaining treatment may only be made if based on knowledge of what the patient would desire. Tex. Health & Safety Code §§ 166.039(c), 166.40(b). In re Conroy, 486 A.2d at 1229.