State Bar of Michigan
Committee on Justice Initiatives and Equal Access Initiative Disabilities Project
Volume 7, Issue 3, December 2012
Disabilities Project Newsletter
Using the Best Interests Test to Protect the Cognitively Impaired From Intrusive Interventions at the End of Life By Joanne R. Lax
Member, Dykema Gossett PLLC, Bloomfield Hills
Can the beneficent instinct to protect chronically and severely cognitively impaired individuals actually result in denying them the same rights and privileges that non-impaired individuals regularly enjoy? This anomalous result often occurs during medical decision-making at the end of life, as a result of misunderstanding the appropriate legal precedents. This article explores a legal framework that can offer impaired individuals the same rights and privileges surrounding end-of-life care as their non-disabled counterparts.
The Basic Rules
For roughly a century, Michigan law has recognized the right of a mentally capable patient to choose whether or not to receive medical care. This fundamental right is based upon the doctrine of informed consent, which is an expression of the ethical principle of individual autonomy and privacy. In re Martin, 450 Mich. 204, 538 N.W.2d 399 (1995). Michigan courts, like courts in numerous sister states, recognize that this right includes both the right to consent to medical care and the right to refuse it—even if the care is life-saving or life prolonging. Martin, supra and In re Joelle Rosebush, 195 Mich. App. 675; 491 N.W.2d 633 (1992).
Both the Michigan courts and the Michigan legislature recognize that a mentally capable patient's right to accept or refuse medical care remains intact if that patient subsequently loses mental capacity due to disease or injury. Martin, supra; Rosebush, supra; and MCLA 700.5506 et. seq.
Mentally capable individuals who have the foresight to draft an advance directive (also known as a Patient Advocate Designation "PAD" or a durable power of attorney for health care "DPOAHC") can direct the course of the future medical care that they will receive once they have been declared incapable, by including in their PAD prior written instructions to caregivers. Those who have not availed themselves of this opportunity may still have their rights exercised by a surrogate decision-maker applying the substituted judgment test, as articulated in Martin, supra. This test states that life-sustaining medical care may be withheld or withdrawn from a formerly capable patient if there is clear and convincing evidence that the formerly capable patient would have wanted that outcome under the specific circumstances now applicable to the patient. Such evidence may be derived from the patient's prior oral statements to family and friends, provided that the statements were serious and well considered at the time they were made. The formerly capable patient's value system and philosophy of life can also factor into the mix of evidence.
The substituted judgment test articulated by the Martin court can be very difficult to apply in particular cases. Some argue that this is exactly what the Martin court wanted in the resolution of the difficult and troubling facts before it. Michael Martin, the subject of the Supreme Court's decision, was a middle-aged man in a nursing home due to a traumatic brain injury sustained in a car accident. Physicians disputed the degree to which he interacted with his environment in a meaningful way. The rehabilitation specialist contended that Michael could respond to simple commands and indicate comfort or discomfort. Other physicians opined that he was essentially unresponsive in any meaningful way. Most agreed that he did not appear to be in any pain and appeared content in his environment. He was confined to a wheelchair and required extensive staff assistance with all activities of daily living. His family was hotly divided about whether to withdraw his feeding tube, which furnished all of his nutrition and hydration. His mother and sister even accused his wife, who wanted to withdraw the feeding tube, of having ulterior motives in seeking Michael's death. Under these circumstances, it is understandable why the Supreme Court set the evidentiary bar so high for the withdrawal of a life-sustaining medical intervention. But we must be careful not to overextend the Martin holding to facts not before the court—specifically the situation of a severely, chronically cognitively impaired individual who never had the capacity to express opinions about medical care.
Substituted Judgment and the Severely Cognitively Disabled—an Oxymoron
Our jurisprudence abounds with protections for individuals with severe cognitive impairments, such as mental retardation, autism, or cerebral palsy affecting cognitive ability. These individuals are assured of comprehensive community supports through our CMH system that strive to promote maximum mainstreaming. The same is true in our educational system, which guarantees individualized educational programming to maximize personal potential. Guardians safeguard these individuals and their property from abuse and misappropriation. Gone are laws that mandated eugenic sterilization or mandatory institutionalization in conditions that would make us all cringe today. Even our language now promotes dignity and respect for individuals with these severe cognitive disabilities, abolishing derogatory terms previously used to describe their conditions. As a society we have indeed made tremendous strides in protecting individuals with severe cognitive disabilities and in maximizing the fullness and richness of their lives.
But in protecting these individuals, we often forget that they too can contract incurable terminal illnesses about which difficult medical choices must be made. If the substituted judgment test were the only available standard by which a family member or guardian could make end-of-life medical decisions for severely impaired individuals, it is obvious that profoundly cognitively impaired individuals would never be free from medical interventions that sustain biological functions—such as ventilators or vasopressors—even in the face of certain near term death. Because these individuals have by definition never had mental capacity, they have never had the opportunity to express personal wishes about such weighty matters. And guardians and courts alike sometimes conclude that anything short of a full court press with all known medical interventions will be deemed to be a form of abuse against the disabled. So, must severely cognitively impaired individuals be relegated to undergo often futile medical interventions under the guise of our parens patria obligation to protect them, when their non-disabled counterparts can forego such interventions in appropriate cases?
The Best Interest Test
For individuals who have never had mental capacity, the answer is the application of a more objective "best interest" test to decide whether a particular medical intervention is appropriate. This test does not seek to implement the decision that the now severely ill individual would have made, but instead examines the totality of the circumstances, balances the benefits and burdens of the intervention, and decides what is the most humane and beneficial course of action for the patient.
The Martin court itself recognized the limitations of its substituted judgment test, and concurred with a "more objective" test in certain circumstances. In an often overlooked footnote (footnote 15 in the opinion), the Martin court stated that a "more objective" standard could apply if the patient in question was terminally ill, in a persistent vegetative state, in great pain, or conditions or ailments of a similar nature (including unremittant coma, which is medically distinguishable from a persistent vegetative state). These are often the circumstances that we confront in end of life care. Several years prior to Martin, the Rosebush court had already endorsed a best interest test regarding medical decision-making for a young minor who had been severely injured in a traffic accident. Joelle sustained a high-level spinal cord injury that left her paralyzed, ventilator dependent, and in a persistent vegetative state. Her parents maintained her on a ventilator in a nursing home for many months following the accident, hoping for a miraculous recovery. When recovery did not occur, Joelle's parents (with the support of their religious advisor, and the opinions of her physicians that Joelle was unlikely to regain cognitive function) sought to withdraw the ventilator. The court held that Joelle had the same right to be free from unwanted medical interventions—even life sustaining interventions—as an adult, and that her right could appropriately be exercised by her parents applying the best interest test. The Court laid out the factors for the surrogate decision-maker to use in applying this best interest test for a never capable individual. Citing approvingly from out of state precedent, the Court stated at page 688:
"There will be many situations where it cannot be ascertained what choice the patient would make if competent. In such cases, the guardian must make a good-faith determination of whether the withholding of life sustaining treatment would serve the incompetent patient's best interests. The following is a nonexclusive list of the factors which should be considered in making this determination:
Evidence about the patient's present level of physical, sensory, emotional, and cognitive functioning; the degree of physical pain resulting from the medical condition, treatment, and termination of the treatment, respectively; the degree of humiliation, dependence, and loss of dignity probably 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."
Applying these tests, the Rosebush Court concurred that it was appropriate for Joelle's parents to withdraw her ventilator.
Michigan has no appellate level case applying the best interest test specifically to a severely, chronically cognitively impaired individual. But both the Martin and Rosebush courts found support from out-of-state cases that had considered similar issues as those facing Michael and Joelle. We can do the same when it comes to profoundly cognitively impaired individuals. One of the most instructive cases is Superintendent of Belchertown State School & Another v. Joseph Saikewicz, 373 Mass. 728; 370 N.E.2d 417 (1977). The Court held that it was not in the best interests of Mr. Saikewicz, a 65 year old profoundly mentally retarded nonverbal man, to undergo chemotherapy for a rare and always fatal form of leukemia. At best the chemotherapy would extend Mr. Saikewicz's life by 2-13 months, but would involve pain and seriously debilitating side effects that he could not understand. He would have to be restrained in order to administer the medication, which would create significant anxiety. Importantly, some physicians opined that the chemotherapy may have no beneficial effect due to Mr. Saikewicz's age. The court stated at page 745:
"We think that principles of equality and respect for all individuals require the conclusion that a choice exists. For reasons discussed at some length in Subsection A, supra, we recognize a general right in all persons to refuse medical treatment in appropriate circumstances. The recognition of that right must extend to the case of an incompetent, as well as a competent, patient because the value of human dignity extends to both. This is not to deny that the State has a traditional power and responsibility, under the doctrine of parens patria, to care for and protect the "best interests" of the incompetent person. Indeed, the existence of this power and responsibility has impelled a number of courts to hold that the "best interests" of such a person mandate an unvarying responsibility by the courts to order necessary medical treatment for an incompetent person facing an immediate and severe danger to life. Whatever the merits of such a policy where life-saving treatment is available—a situation unfortunately not presented by this case—a more flexible view of the "best interests" of the incompetent patient is not precluded under other conditions. The "best interests" of an incompetent person are not necessarily served by imposing on such persons results not mandated as to competent persons similarly situated. It does not advance the interest of the State or the ward to treat the ward as a person of lesser status or dignity than others. To protect the incompetent person within its power, the State must recognize the dignity and worth of such a person and afford to that person the same panoply of rights and choices it recognizes in competent persons. If a competent person faced with death may choose to decline treatment which not only will not cure the person but which substantially may increase suffering in exchange for a possible yet brief prolongation of life, then it cannot be said that it is always in the "best interests" of the ward to require submission to such treatment. Nor do statistical factors indicating that a majority of competent persons similarly situated choose treatment resolve the issue. The significant decisions of life are more complex than statistical determinations. Individual choice is determined not by the vote of the majority but by the complexities of the singular situation viewed from the unique perspective of the person called on to make the decision. To presume that the incompetent person must always be subjected to what many rational and intelligent persons may decline is to down grade the status of the incompetent person by placing a lesser value on his intrinsic human worth and vitality. The trend in the law has been to give incompetent persons the same rights as other individuals. Recognition of this principle of equality requires understanding that in certain circumstances it may be appropriate for a court to consent to the withholding of treatment from an incompetent individual."
At least one probate court in Michigan recently applied the above principles to allow a non-family member guardian who was not a commercial guardian to withhold or withdraw a mechanical ventilator and CPR, upon physician recommendation, from a severely cognitively impaired middle-aged woman suffering from acute respiratory distress and physical deformities to the spine and limbs that made intubation and performance of CPR intolerable. In the matter of Edith Shirey, Probate Court for the County of Montmorency, File # 98005210-DD (2005). The judge, Honorable Michael Mack, stated from the bench (as transcribed by the court reporter):
"In this case, the State has an ever present abiding interest in preserving and prolonging life. That is mentioned in all the cases at counsel sites [sic], that's certainly something that applies to the once competent. And certainly because . . . the mental health code applies to the never competent. Counsel's observation that the case law in Michigan affecting minors who were never competent but who have parents, or the ones competent in whatever expression they had regarding end-of-life care survives their incompetency, is well taken. Except none of those cases could possibly deal with the kind of sensitivity we have to individuals having a developmentally disabled [sic], such a sensitivity that the Michigan Legislature decided to codify the rights and responsibilities of every community to protect these people. Yet, at the same time allow them to retain such rights and independence as is humanly possible given each persons own unique ability. It is not our, it's codified in the statute and that's the difference between a child, that's the difference between a person who was once competent and expressed an opinion of end-of-life care, that's the difference between the disabled and a person who had never expressed an opinion but who was competent in the past. That we have a duty according to the laws of the State of Michigan to promote and preserve the independence and the rights of the disabled that's why it is so difficult to ask a Court or a Legislator or anybody in charge of developing laws and policies to the State to over right [sic] the State's compelling interest to preserve and prolong life in cases of persons with developmental disabilities. Yet, you know the first time I started reading the cases that counsel pointed out to me last Wednesday and we had a nice discussion about those cases. It occurred to me that if the Mental Health Code is so insistent upon this court and other courts dealing with these individuals in retain, allowing them to retain rights, even the right to make choices like the right dress color to wear, something as simple as that. Why shouldn't courts allow the retention of a right to die? The right to die flourished, or rather was sown in the common law, essentially it's through the doctrine of informed consent and the developmentally disabled were left out of that. How can you ever inform a developmentally disabled person sufficiently to allow them to make a right to have the treatment or to have the treatment withheld? It's impossible. The developmentally disabled have historically, for centuries, and even within our own generation have been left out of these end-of-life considerations and it's, I don't know how many opportunities the appellate courts have had to deal with the issue but certainly the legislature has had enough opportunity in the last 50 years to deal with that issue. We're going to deal with it today. The Court finds that Edith Shirey is a person who by reason of her respiratory condition and the associated conditions testified on the record by Doctor Panknin, is a person who is suffering a terminal illness. The Court finds that the suffering is present both through the condition without treatment and certainly errata: exacerbated by the current treatment being offered to her at Alpena General Hospital. The Court finds that the suffering and pain will endure throughout her lifetime unless, that is will endure whether she's offered treatment as she is presently being offered or whether she is not offered the treatment, or if the treatment is withdrawn. That pain in [sic] unavoidable, the suffering is unavoidable, and the Court so finds. The Court further finds that the, specifically with respect to, of a standard by which we're going to judge, that I am going to judge this case, is the objective best interest standard as touched upon in the Martin decision. The Court finds that there's no room in the law for the substituted judgment standard because in the case of developmentally disabled persons because we try to, we tried to elicit some testimony from people who knew her and from people who, I should say know her, as to what she would have wanted out of her life in this circumstance and the substituted judgment line of cases would ask this court to do the impossible in light of this record, what would the patient want? So the only thing left for this court to consider is the objective best interest. Do the present burdens of treatment substantially outweigh the expected benefits of the treatment? In the case of the CPR, ironically enough, that if there was an event which called for resuscitation by CPR the administration of the treatment if successful would leave her in a worse condition that she was before the event arose. At the same time terrorizing her, that's scarier, she doesn't know why the treatments being conferred, she simply knows pain. And it would terrorize her and certainly it is not in her best interest to administer such a treatment. I further find that in the case of electroshock therapy to resuscitate the heart I make a finding consistent with the CPR. And any attendant emergency procedure should be put aside while she's in the intensive care unit at Alpena General Hospital. In the event Miss Shirey recovers to the extent that she's discharged from the Alpena General Hospital Intensive Care Unit she is not to be readmitted. The only way, as I see her readmission to the facility as further errata: exacerbating her pain and suffering, in the event that her ventilator is taken from her either through recovery, well through recovery to the extent that she can breath on her own and there is clinical need for the ventilator to be reattached I order that it not be reattached. During her current hospitalization at Alpena General Hospital in the Intensive Care Unit, I'm dealing now with the question of withdraw. I'm having some difficulty with that in light of the testimony, however, if in the opinion of the attending physician and any consulting physicians in the Intensive Care Unit that Miss Shirey's global medical condition is such that the burdens of further treatment outweigh any substantial benefit from the treatment. I order that the physicians together with the guardian, as they do in all other cases apparently, consult with each other and that they and they alone make the decision as to when this device should be removed. That, I have been assured through the testimony, while there's no strict medical criteria for such a decision or as to when that decision should be made; that it varies from patient to patient which it must, but considering all of her other medical conditions, whether they are known to us at this time or unknown, should be considered by they physician in consultation with the guardian and the guardian will thereafter have authority from this court to make a medically based, informed decision as to the termination of that particular treatment . . . . That being mechanical ventilation."
The Court subsequently modified its bench opinion in the written order. In the written order, the court stated that all medical decision-making about Edith should be made by the guardian in consultation with medical professionals, not just the withdrawal decision. Given the complexity of these kinds of decisions, the modified order represents the proper approach for guardians.
Are There Impediments to Utilizing the Legal Paradigm Described Above?
Some commercial guardians categorically refuse to authorize DNR orders for incapable patients in the absence of clear and convincing evidence of the patient's wishes, even when the patient is terminally ill, in a persistent vegetative state, in great pain, or suffering other similar conditions. Severely cognitively impaired individuals under the care of these guardians are thus required to undergo medical interventions that are often futile, and which others could avoid. The situation often creates moral distress for caregivers and unnecessary suffering for the cognitively impaired individual. Some guardians justify this course of action by claims that the law does not support a guardian's authority to withhold or withdraw care; others may fear liability to unknown relatives who later emerge to challenge the guardian's decision.
It should be apparent from the above analysis that these concerns are unfounded in Michigan law. The authority of guardians to make these decisions has recently been championed by the Honorable Milton L. Mack, chief judge of the Wayne County Probate Court. Judge Mack has publicly and repeatedly lectured in favor of the decisional paradigm we have just discussed. A paper that Judge Mack delivered at a conference of Michigan Probate Judges, as well as at the Michigan Guardianship Association's fall conference this year can be found here. Judge Mack even sent a similar paper directly to every commercial guardian who serves individuals under the jurisdiction of the Wayne County Probate Court. Guardians—both commercial and family—can take comfort from this strong judicial support and the clear directives of the Martin and Rosebush courts.
Yet it is equally critical that guardians not act cavalierly in authorizing DNR orders. There is no need or place for blanket DNR orders for all of a guardian's wards just because they may have a severe cognitive impairment, suffer dementia, or be confined to a nursing home. One of Martin's lessons is that great care must be taken in medical decision-making when the incapacitated individual is not terminally ill, does not appear to be in any pain, and has not previously expressed wishes about such serious matters as CPR or other life-sustaining care. It is the obligation of every guardian to carefully assess each ward's individual circumstances in consultation with the treating physicians in order to make sound, balanced, and appropriate choices that promote human dignity.
The combined effect of the Michigan precedents of Martin and Rosebush, and the Massachusetts decision in Saikewicz provide clear support for all probate judges to approach these cases just like the judge in the Shirey matter did and as Judge Milton L. Mack encourages. They can apply the best interest test and support the right of severely cognitively impaired individuals to be free from intrusive and often ineffective medical interventions at the end of life. By so doing, these judges will uphold true equality for individuals suffering from severe cognitive impairment.
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