In this article, we report the results of a study of 129 case files and 16 guardian interviews on end-of-life decision making for Minnesota state wards who are developmentally disabled and are seldom competent to assert their wishes. We review the legal cases, legislative statutes, and professional standards that guide public guardians in deciding whether to begin, continue, or withdraw or withhold life-sustaining medical treatment from their wards. In particular, we reveal how the guardians' recommendations to the state Public Guardianship Administrator include such ableist assumptions as "normal," "natural," and "reasonable," but we also recognize the guardians' resistance to mind/body dichotomies and their expertise in determining quality of life in the context of how their wards live those lives.
I had a stepfather who had some heart issues … he ended up in the hospital. The doctor said, "This is what I can do [describes medical intervention]." He [my stepfather] said, "This means what?" "Well, it means you are going to be able to walk, but you will be very much diminished." He said, "Am I going to golf again?" And the doc said, "You will never golf again." Then he said, "I choose not to do that. Bring my family in here, Doc, and I'll give you three days [to keep me alive]." "You've got three days, Fred, and that will be the end, give or take, and you're good to go [die]." I got my family here. They all flew down … and said goodbye to him and about three days later he died.
End-of-life decisions, as this story from a guardian who administers to Minnesota state wards illustrates, often involve not only asserting autonomy, if at all possible, but also measuring quality of life. This guardian used the story of her stepfather's choices to illustrate what experiences she had had with end-of-life decision making before she came to serve in the guardianship role of social work. As in many cases, stepfather Fred's physician offered a diagnosis and prognosis: Without additional treatment, Fred was about to die, "good to go." But, Fred asserted his autonomy in choosing not to live with a disability that would prevent him from engaging in his favorite activity.
Harold Braswell (2011) reveals that notions of autonomy are "saturated with ableist norms," as they might be for some people such as Fred, who could not tolerate not being able to golf again, an activity that he imagined required the fully functioning body he had enjoyed prior to his illness (n.p). Moreover, Braswell suspects that autonomy "enacts a split between the individual and his or her body" (n.p.), as in the case for Fred who feels that, if his body cannot function as it has in the past, he must reject it and choose death. Braswell calls instead for an "intertwining" of autonomy and relationality, a reformulation of autonomy to "encourage relationships that allow individuals to acknowledge their dependence on others, as well as on their own bodies" (n.p.). Although Fred chose not to continue to live, had he wished to go on, his ability to walk or even to golf might be supported by some continued functioning of his own body, perhaps aided by technology and his family's help, a scenario that Braswell and others endorse.
Overall, disability scholars propose that the most "restricting and debilitating features in the lives of disabled people" are not the consequence of "living with impairment" but are instead constructed socially and politically (Clements & Read, 2008, p. 3; see also Thomas & Corker, 2002). And so, these scholars have identified the ways in which contempt, pity, and "above all" fear of physical suffering and inability to control the body are embedded within our culture (Rohrer, 2005, p. 43; Wendell, 1997). At the extreme, some segments of society consider people with challenging disabilities better off dead (see, for example, Herr et al., 1992-1993). A disability emerging in old age, as Fred experienced, may prevent some people from imagining that their lives could still be enjoyable after such an adjustment.
Moreover, for the last four decades, the well-debated legal cases of Karen Ann Quinlan, Nancy Cruzan, and Theresa Marie Schiavo have brought end-of-life decision making to the wider public's attention (In re Quinlan, 1976; Cruzan v. Director, Missouri Department of Health, 1990; see also Perry et al., 2005; Preston & Kelly, 2006). As a result of these cases, the public has begun to worry over such statements as that of Jay Wolfson (2003), Terri's court-appointed guardian ad litem: "We are, each of us, standing in Theresa Marie Schiavo's shoes"(p. 1). Most end-of-life decisions, however, never see the inside of a courtroom but are instead made by patients and families in consultation with physicians, for those such as Fred who can still articulate their wishes or more recently for those who have expressed their wishes in an advance health care directive. Moreover, the precedents set by Quinlan, Cruzan, and Schiavo address the rights and needs of previously competent persons. In this article, however, we address the challenges of making decisions about life-sustaining treatment for perhaps the most difficult and under-researched group, those who have never had that decision-making capability that stepfather Fred had. In our study, such individuals are defined as "never competent" persons who cannot make free choices or exercise individual integrity or self-determination—the long-term developmentally disabled (see, for example, Merrit, 1986-1987; Scharff, 1987-1988; Weinberg, 1988-1989; Dresser & Robertson, 1989).
We first explain our method of gathering data and our methodology for analyzing data about Minnesota public guardians as they make end-of-life decisions for their state wards. We then review the legislative statutes and the professional standards that govern those decisions, and we examine the continuum of standards from substituted judgment to best interests set by In re Conroy (1985). Finally, we reveal the themes and criteria reflected in end-of-life decisions for the state wards. We find that the guardians would prefer to use the substituted judgment standard, servicing as their wards' agents in following the wards' wishes, but most often have to rely on the best interests standard, assessing what the so-called reasonable or normal person would want, a standard that invites ableist bias. The guardians' very language represents a tendency to look for the so-called "normal," "natural," and "reasonable" in making these decisions. However, the guardians resist dichotomizing the mind and body, a counter to ableist tendencies. We end this analysis by illuminating how the guardians attempt to determine quality of life, the "good death," and a death with dignity for their wards by looking, in particular, for the meaningful relationships and social interactions.
A STUDY OF MINNESOTA PUBLIC WARDS AND THEIR GUARDIANS
In our study, we wished to see how guardians operationalize legal, judicial, and professional guidelines, when receiving very little guidance from their clients, by interpreting physical and psychological needs within the context of social interaction and through verbal and nonverbal cues. Our goal was to understand how decisions are made for this group to begin, continue, or withhold or withdraw life-sustaining treatment, such as providing intubation and respiratory support; administering chemotherapy, dialysis, or antibiotics; and initiating emergency cardiopulmonary resuscitation.
And so, we analyzed inductively 129 case files of Minnesota state wards that contained documentation of the process whereby guardians recommended end-of-life decisions for the wards.1 Addressed to the Minnesota Public Guardianship Administrator, each case file included (1) a letter from the guardian requesting consent for do-not- resuscitate (DNR) and do-not-intubate (DNI) orders (91%), withdrawal or withholding of artificial hydration and nutrition (8%), or palliative or limited medical treatment (62%), often in combination, for their wards; (2) one or more supporting letters from physicians, nurses, group home caregivers, or hospital ethics committees; and (3) a letter in which the Administrator offered a final decision, reiterated the guidelines to be followed in carrying out the decision, and explained the reasons for that decision. These documents were inclusive of all end-of-life decisions made by such guardians from January 2007 through July 2009.
According to the Minnesota Public Guardianship Administrator (2012, December 18), Minnesota state wards generally have a diagnosis of developmental disability and a finding of incapacity very early in life. At the end of 2012, there were 2260 state wards in Minnesota (Public Guardianship Administrator, 2012, December 31). Public guardians work in county social service agencies to serve state wards, while private guardians may work with individuals who have reached an age where they can no longer care for themselves or have lost decision-making capacity and lack family support. Although the duties are similar for both types of guardians, those for Minnesota public guardians are specified by state statute. Guardians determine the best place for the ward to live and provide for the ward's "care, comfort, and maintenance needs" as well as consent to the ward's necessary medical care, being attentive to the ward's "known conscientious, religious, and moral belief" (Minnesota Statute 524.5-313, 2012, subd. 1, 2, & 4). It can be assumed, according to the Administrator (2012, December 18), that all necessary health care will be provided to wards, including resuscitation, unless otherwise directed. Close contact must be maintained with the ward, including at least two visits a year; however, according to the Administrator (2012, December 18), public guardians see their wards more frequently and "generally know their wards fairly well as they have to be involved in assessing them and authorizing services," often for decades. The guardian must also make decisions on behalf of the ward based on "the maximum level of independent functioning in a manner least restrictive of the ward's personal freedom consistent with the need for supervision and protection" and "permit and encourage maximum self-reliance on the part of the ward" (Minnesota Statute 252A.111, 2012, subd. 6.1, 6.3, & 6.4). And so, one goal of the guardian-ward relationship is to maintain the psychological and bodily integrity of the ward as much as possible.
To contextualize further how these end-of-life decisions were made when submitting such documentation to the Administrator, we conducted 16 interviews with guardians during 2009 and 2010. A purposeful sampling method (Patton, 2002) was implemented to recruit interview participants to ensure that guardians were from a variety of backgrounds and guardianship experiences. The interview sample consisted of 17 participants (two of whom were interviewed together). Nine were affiliated with county social services departments, four were from nonprofit organizations, two were from private firms, and two were independent volunteers not associated with an agency or firm. (See Appendix A for our interview questions.) Because we received redacted case files for privacy reasons, we cannot link particular guardians with any of the 129 case files from the Public Guardianship Administrator.
We coded the case files and interviews, using the coding and analysis techniques from grounded theory analysis following Barney Glaser and Anselm Strauss (2007), identifying particular terms that appear in the relevant court cases, such as "quality of life," "pain and suffering," "best interests," "substituted judgment," and "burden and benefit." We also discovered other terms that frequently emerged in the files and interviews, such as "natural," "normal," or "reasonable"; "fear," "distress," "anxiety," and "agitation"; and "death with dignity." Because this study is an inductive and qualitative one and because the case files consist of personal letters rather than standardized forms, we found portions of the individual letters in the case files more revealing than the frequency with which similar terms were used although we do give some indication of that frequency. Finally, we also noted any common language used in the widely referenced In re Conroy (1985); the professional guidelines endorsed by such entities as the Minnesota Association for Guardianship and Conservatorship (MAGiC) and the Minnesota Conference of Chief Judges; and the duties and powers of guardians in Minnesota statutes.
Throughout this article, we illuminate how the mind and body of the patient are "read" by guardians within a personal and a social context to create meaning and to serve best interests. Thus, we follow the perspective of the field of legal cultural studies, which views the law as "constituted through everyday action and practices" (Ewick & Silbey, 1998, p. 43; see also Kahn, 1999; Kahn, 2003; Mezey, 2003; Munger, 1998; Provine, 1998). We also rely on the perspectives of such scholars as Kevin DeLuca (1999): "There are no a priori bodies. Bodies are enmeshed in a turbulent stream of multiple and conflictual discourses" (p. 12). The body, and the laws that pertain to it, are socially constructed and assigned meaning depending on the context in which they are placed.
To be effective, the guardian must consider the needs of the body as well as the needs of the mind and, we believe, resist the social construction of the body that scholars such as Elizabeth Grosz (1994) describe: The body is "unruly, disruptive, in need of direction and judgment, merely incidental to the defining characteristics of mind, reason, and personal identity" (p. 3; see also, Bordo, 1993; Martin, 1992; Scott, 2002; Wilson & Laennec, 1997). Moreover, Minae Inahara (2009) and other scholars warn that some bodies are still socially privileged, such as the abled over the disabled body, despite the fact that the abled body might be "illusionary and unattainable" (p. 57). The quality of life those bodies realize, the pain and suffering as well as the fear and anxiety associated with medical conditions and interventions into those conditions, and the burdens and benefits of life-sustaining treatment demand interpretation to determine best interests. In determining best interests, as Lawrence Nelson (2003) asserts, developmentally disabled persons should be "treated as unique individuals and not as some anonymous 'disabled person' lacking a character or personal history, in not being subjected to invasive medical treatment that is unduly burdensome or nonbeneficial, and in having a meaningful quality of life relative to them as individuals" (p. 3; see also Beltran, 1992).
JUDICIAL, LEGISLATIVE, AND PROFESSIONAL GUIDELINES FOR MINNESOTA GUARDIANS
A review of the legal and professional guidelines offered to Minnesota guardians when they make end-of-life decisions for the developmentally disabled reveals the complexity in what might seem fairly straightforward standards for such decisions.
In re Conroy (1985) offers the clearest explanation for standards still used to teach law students and guide practitioners about end-of-life decision making (see, for example, Hirsch, 1990; Kenney, 1990; Glick, 1992; McKnight & Bellis, 1992; Furrow et al., 2001). The three decision-making standards articulated by the New Jersey Supreme court in the Conroy case form a continuum from true agency, in which the surrogate decision maker "stands in the shoes" of the patient, to an assessment of the incompetent person's best interests. The first standard, called the pure-subjective test by the court but more familiarly known as the "substituted judgment" test, relies on what the particular person chose or would have chosen under the circumstances, best recorded in an executed advance health care directive or expressed in a clear oral directive and shared with a surrogate decision maker. If no such directive exists, the surrogate may discern the person's wishes by recalling the "reactions that the patient voiced regarding medical treatment administered to others" or a person's moral and religious beliefs or previous conduct (p. 1230). Evidence about the patient's likely perspective with regard to his or her present level of physical, sensory, emotional, and cognitive functioning as well as "degree of humiliation, dependence, and loss of dignity" are also important factors in the substituted judgment standard, according to the Conroy court (p. 1231).
At the other end of the continuum, for persons who have not or were unable to have expressed specific desires, decisions should be made on the basis of "best interests," a concept supported by the parens patriae doctrine of the state. The standard asks the surrogate to consider what a "reasonable person" would want and therefore is considered to be objective because of this assessment, but which has the potential to be an ableist approach. This standard also involves subjectively weighing specific burdens and benefits for the particular individual. In describing this standard, the Conroy court offered an extreme worry: the effect of administering life-sustaining treatment might cause "recurring, unavoidable and severe pain," pain that would be inhumane, unless the burdens and benefits of such treatment are weighed for each case (p. 1232). Moreover, Justice Alan Handler, in his partial dissent in the Conroy case, proposed that the court should really formulate a standard that would "permit a natural death with dignity and compassion" (p. 1246), a much more difficult standard than monitoring the physical effects on the body and an indication that the Conroy standards would be more challenging to apply than the majority of the court might have imagined.
Minnesota state statutes and MAGiC, the professional organization of state guardians, also give directions to guardians when they make end-of-life decisions for their wards. As did Justice Handler in the Conroy case, MAGiC's 2009 Standards of Practice manual directs the guardian to "maximize opportunities for growth, independence, self-determination, and dignity" for the individual through "the highest level of communication possible with the ward," family, and caretakers (p. 3). The Minnesota Conference of Chief Judges (2010) further interpreted the best interests standard to consist of two parts: (1) considering the ward's wishes and (2) selecting the alternative that "provides the most benefit and least harm" to the ward (p. 30). To discover the ward's wishes, the judges recommended that the guardian determine how the ward "communicates" verbally or nonverbally (p. 34).
MAGiC also states that if the person's wishes were never known or the person unable to express them, then the best interests standard is applied or "the least intrusive, most normalizing, and least restrictive course of action" (p. 2, emphasis added), a goal recognized in the Minnesota Department of Human Services Disability Services Program Manual (2012) and the Minnesota Rules (2007). This directive by MAGiC seems to imply that a guardian should match what the "normal" or abled person would want in terms of care. Equally, as Robert Burt (1986-1987) points out in the Conroy case, "In effect, the court said that competent people were the norm in this society and incompetent people should be treated as if they could attain—or at least approximate—this highly valued norm" (p. 319; see also, Lo & Dornbrand, 1987). However, as we next explain, within these judicial, legislative, and professional standards, guardians are urged to assess best interests not only by such evidentiary tests but also by interpreting or "reading" the body and mind of the individual within the specific context in which that individual functions.
THE MINNESOTA PUBLIC GUARDIANSHIP CASE FILES AND GUARDIAN INTERVIEWS
In coding and analyzing the Public Guardianship Administrator's case files and our interviews with Minnesota guardians, the several themes emerged, which exemplify how the Minnesota guardians not only operationalize the professional and legal guidelines and standards to serve their wards but also use certain persuasive strategies to support their recommendations to the Public Guardianship Administrator.
Initial Preference for the Substituted Judgment Standard
In only eight of the 129 Public Guardianship Administrator case files did the guardian indicate that the ward was able to express any wishes about life-sustaining treatment; however, in these eight case files and within nine of the guardian interviews, we detected a preference to use the substituted judgment standard whenever possible to support the bodily integrity of their wards. True agency or the substituted judgment standard may indeed be the "gold standard" in this country because patient integrity is valued so highly (see, for example, Kenney, 1990; Miller, 2006; Pope, 2010).
One guardian we interviewed, for example, recognized substituted judgment as a part of her training: "We were taught to be as much a substitute decision maker, to pretend we are the client, and not what we would want but what they would want."2 We also found that, in the Administrator case files, guardians document attempts to capture their wards' wishes. Before requesting a DNR/DNI for her ward, whom she had known for 20 years, for example, a guardian asked the ward a series of specific questions: "I asked that if her heart was to stop beating, would she like it restarted with electric shock, she answered 'yes.' When asked if she was not able to breath or eat, would she want a tube in her throat to help her stay alive, she said 'no'."3 More than one guardian interpreted his or her ward's comfort with death by equating the end of life with sleep: "[S]he is not afraid to go to sleep and never wake up" (F-24); 'If you fell asleep would you want the doctor to wake you up?' [The ward] replied 'don't pick on him, no I did not, I don't want to'" (F-1).
Minnesota guardians also found their wards' wishes were more frequently expressed nonverbally: "He had a feeding tube in him, and even though he had big mitts on, he was still managing to get that feeding tube out. And so in my mind, it was his way of expressing himself" (I-16). As Ghan-Shyam Lohiya, Lilia Tan-Figueroa, and Francis M. Crinella (2003) have pointed out, a surrogate for the incompetent patient must attend to such subtle cues, such as "new-onset gestures toward the sky, spontaneous utterances, pulling of medical tubes," gestures that might reflect the "nonverbal resident's only voice" (p. 61). Likewise, Lo and Donrbrand (1987) point out that those observers trying to determine such wishes often "can only infer pain from such actions as the patient pulling out the tube, moaning, and grimacing" (p. 871, see also Agrawal, 1987). The ward's physical gestures and any verbal expressions, which can be interpreted as so-called normal requests despite some inability to articulate them, become the evidence that the Minnesota guardians must honor whenever the wards seem to display how they feel physically or psychologically regarding their own care.
Eventual Reliance on the Best Interests Standard
Even though the Minnesota guardians might prefer to apply the substituted judgment standard in serving the state wards, given the incapacity of their wards, most frequently they rely on the best interests standard. In 33 of the case files, the specific term "best interests" was used at least once by guardians and/or physicians as a warrant in what must be a persuasive document to the Public Guardianship Administrator. One physician, for example, noted, "I feel he [Ward] has exhausted all medical and surgical options now, and it is in his best interests to transition to palliative or comfort care" (F-60).
On the one hand, medical caregivers often link best interests to a diagnosis or prognosis: "We recommended that [Ward] continue with his DNR/DNI status as this is in [Ward's] best interests given his poor prognosis …. It is difficult to estimate his life expectancy, [sic] however with his steady decline in health status it would be estimated no greater than two to three years …. Instead, our goal should be to provide comfort care for the patient " (F-122). On the other hand, guardians seem to link the specific term of "best interests" to a negative change in life style or social activities of the ward, and the guardians' areas of expertise are reflected in the case files: "Over the years I have witnessed [Ward's] decline in all areas of functioning. She recently retired from her seniors' program as she was no longer able to stay awake through her two hour program …. I have had discussions with the members of her team and all agree that continuation of the Do Not Resuscitate orders would be in her best interests" (F-39). This warrant would fall in line with what Jang et al. (2004) found in their study of older adults who have less physical ability but remain cognitively alert: Because disabled older individuals had lower levels of "activity participation," their "social engagements" are "strongly and significantly related to life satisfaction" (p. 275). Moreover, for the developmentally disabled who have become state wards, according to Deborah McKnight and Maureen Bellis (1992), social isolation is such a major problem for such persons that "this absence of traditional, caring relationships emphasizes the need for clear, ethical procedures that govern life-sustaining treatment decisions among this population" (p. 204).
Five of the guardians we interviewed similarly explained how they would interpret the best interests standard. A guardian, for example, in recalling a decision not to treat a fragile state ward for lung cancer, which would necessitate eliminating a day program for the ward, commented about the change in life that chemotherapy would necessitate: "He [so] enjoys seeing his friends at the day program and having social outings with his friends from the home that we came to the decision that it wouldn't be in his best interests" (I-1).
Moreover, the best interests standard, as described by the Conroy court (1985), suggests that life-sustaining treatment be withheld or withdrawn when pain is "recurring, unavoidable and severe" (p. 1232). Although not expressed in these extremes, pain and suffering were frequently mentioned within the case files (45 out of 129) and interviews (9 out of 16), often referring to the physician's conclusions. In noting the physician's recommendation for a DNR, one guardian, for example, wrote that because of the ward's "age and obesity," the physician "feels that chest compression would be painful and of little benefit for [Ward]" (F-53). Minnesota guardians, however, might also research the degree of pain that a particular life-sustaining treatment may entail. One guardian, for example, learned from others about the discomfort caused by deep suctioning through the nose: "They described that to me as to how much that hurts, and it feels like you are suffocating" (I-5). Most important, the physicians and guardians do not wait for recurring, unavoidable, and severe pain to affect the Minnesota wards before making a best interests decision.
In applying the best interests standard, Minnesota guardians also attempt to measure the burdens and benefits of life-sustaining treatment. Again, this balancing of burdens and benefits, using these specific terms, was frequently mentioned in the case files (38 out of 129) and in the interviews (9 out of 16) as a way of making end-of-life decisions. One physician, for example, advised against administering artificial nutrition: "Other options for feeding are not advised, as the burdens would outweigh the benefits" (F-60). The guardians we interviewed also shared how this measure influenced their decisions. As one guardian said, "We just have to make sure we are weighing the most benefit with the least harm and doing our best to make the decision that is in our client's best interest (I-16). Given the capabilities of the wards and clients these guardians serve, the guardians operationalize the best interests standard and, with the help of physicians, describe pain and suffering as well as burdens and benefits of treatment to persuade the Administrator to agree with their recommendations about end-of-life care.
Finally, by law Minnesota guardians are not allowed to consider long-term disability as a factor in making such best-interest decisions. Regardless of whether we can absolutely determine that disability really is not a factor in any one decision, to receive consent from the Administrator to withhold or withdraw any life-sustaining treatment, the guardian must include in his or her case file letter a statement such as: "We feel it [decision] is in [Ward's] best interest and not in any way related to his developmental disability and mental health diagnosis, only related to his ongoing medical issues" (F-42). As Barbara Goldsmith, Cristina Hendrix, and Jennifery Gentry (2006) assert, "having a disability has the potential to be viewed as a form of suffering" (p. 271), but Minnesota guardians, in assessing the burden and benefits of life-sustaining treatment and the pain and suffering involved in initiating, continuing, or withholding or withdrawing such treatment, are forbidden to consider long-term disability a form of "suffering." Despite this admonishment, however, the language of some guardians may tend to reflect ableist biases when determining best interests.
Tendency to Label Criteria for End-of-Life Decisions as "Normal," "Natural," and "Reasonable"
According to cultural theorists, the law "operates largely by influencing modes of thought rather than determining conduct in any specific case" (Sarat & Simon, 2003, p. 14; see also Sarat & Kearns, 2000). Strategies may be used to compel individuals to conform to a norm, but eventually individuals accept and internalize such norms. Within end-of-life decision making, for example, the courts have asked whether it is normal to seek or avoid death in balancing the legal right to bodily autonomy and self-determination against the state's interest in preserving life. In looking at the Quinlan, Cruzan, and Schiavo cases, Todd McDorman (2005), for example, concluded, "The position of the state in each of these instances demonstrates a strong desire to control end-of-life decisions and discipline those who would attempt to evade supervision," in essence, creating "public knowledge of the abnormality of willfully seeking death" (p. 264). Thus, the Conroy court recommended that end-of-life decision-making standards be based on what a reasonable person, or the so-called normal or abled person, would naturally want—presumably continued life unless severely disabled or in pain.
To some extent the Minnesota guardians and the physicians with whom they work do incorporate within their recommendations for end-of-life care language that distinguishes between the normal or abnormal desire, the abled or disabled body, the reasonable or unreasonable course of treatment. Terms such as "natural death," "normal life," and "reasonable treatment" occurred in 25 cases files and were explained in six interviews. Physicians, for example, might support a diagnosis or prognosis with statements about what a reasonable or normal person might want: "I strongly recommend a DNR/DNI order as medically appropriate. This order and others follow a care plan that meets the goals of care for any reasonable person in a similar situation" (F-102); "In my opinion, continuing nutrition by tube feeding constitutes unreasonable treatment on this patient, who should be allowed to die naturally" (F-49). Without a way to further mine the wishes of the never competent individual, the physicians in the Minnesota case files may then link their medical authoritative knowledge to the supposed physical and psychological burdens perceived to plague the state ward because that ward cannot meet the profile of the abled body: "Considering her age and extreme obesity, I think it is very unlikely that she would derive any real benefit from heroic resuscitation at the end of her life" (F-53).
Guardians also adopt this language: "At that time I was not comfortable with that since [Ward] was not back full time to his day program and his [sic] was still sleeping… more than his normal pattern" (F-128). The concepts of normal, natural, or reasonable were used within the interviews and Administrator case files to describe the individual ward's life before and after a debilitating illness without problematizing the terms. This language use might be a result of the guardian being influenced by an ableist society; the result of training, such as MAGiC's linking "least intrusive" to "most normalizing" interventions; an operationalizing of the Conroy case and others; or all of these.
Resistance to Physical and Psychological Dichotomies
Braswell (2011) asserts that a mind/body division is "saturated with ableist norms" and limits our concept of autonomy: "This self-body split is inherently prejudiced against individuals who, while living, cannot express themselves in terms that render them legible as autonomous subjects" (n.p.). Although ableist language appears in the case files and interviews with Minnesota guardians, the guardians do seem to resist the social construction of the body that relies on this dichotomy between physical and mental needs. What the Conroy court failed to recognize, but the guardians do, is the psychological fear and anxiety caused by life-sustaining treatment for the patient not in a coma or permanent vegetative state.
In 12 case files and in two interviews, we found the terms "distress," "anxiety," "agitation," and "emotional trauma" used specifically, and examples of those conditions were described in many more files. Here the guardians' experiential knowledge of their clients and what can be a decades-long relationship with those clients seem to enable the guardians to interpret their wards' levels of anxiety. Thus we confirm for the never competent patient what Helen Siegal (1985-1986) noted in her assessment of the effectiveness of the Conroy case: a caretaker's ability to effectuate the incompetent patient's best interests depends on familiarity. Moreover, although physicians might mention emotional distress, we found that the guardians illustrated that distress by way of thorough personal knowledge of how the ward communicated. The ward's physical and psychological needs were not distinct but instead strongly linked.
Some physicians who wrote letters to include in the case files also attended to the presence of fear and anxiety in their patients. One physician, for example, used extreme language to assert what his patient was feeling: "It is my belief that these therapies and restrictions on [Ward] do not constitute a significant improvement in her quality of life, and especially the therapies that she received here in the hospital are akin to torture in this woman who cannot understand what we are doing and why we are doing it" (F-76, emphasis added). But guardians were better able to offer a description or specific account of how that fear and anxiety are manifested. One guardian, for example, noted about her ward: "Staff [members] bathe and dress her and she shows marked fear and anxiety in the bath with distressed screaming" (F-99). Another guardian commented: "[S]he is able to express that she does not want to be in pain. When she is out of her routine or immediate surroundings, she is very anxious and afraid. She exhibits these symptoms by crying, screaming, name-calling, paranoid statements and trying to leave. She may also strike out with her cane" (F-87).
Moreover, in the interviews the guardians shared their own and others' anxiety in serving the wards. One guardian also noted that group home staff were "very attached to their residents," and when a physician asked the staff to stop bringing one ward to the emergency room, "it was hard for the staff to see that [ward's] decline in health, and they wanted to do everything possible for the individual and didn't have an easy time accepting that his body was in fact shutting down" (I-6). Another guardian recommended an additional service for the guardians themselves: "When you make those decisions, it tears you up emotionally, and I mean I had to go home because it made me so sad … . So grief counseling would be good, especially if you are working with someone for a long period of time" (I-9).
Thus, end-of-life decisions made by the Minnesota guardians for their wards may be based not only on perception of physical pain but also on the stress that the mind suffers in anticipating bodily intrusions for self and others. Here, in essence, the Minnesota guardians resist operationalizing the aspect of the Conroy standards that focuses on "recurring, unavoidable and severe" physical pain and instead struggle to balance what the individual body and mind can or should tolerate in the context in which the ward lives.
Attempts to Achieve Quality of Life, the "Good Death," and a Death with Dignity
Death with dignity, or the "good death" according to Ellen Barton (2005), involves excluding "excessive technological intervention" (p. 255; see also Barton, 2004; Barton et al., 2005; Beinstock, 2006-2007). On a more abstract level, Michael Hyde (2001) proposes that a death with dignity is essential to wellbeing and spiritual welfare and reflects "the relationship that exists between the value of a person's life and the life of that person's values" (p. 75; see also Hyde & McSpiritt, 2007). To some extent, dignity may be reflected in bodily integrity, a legal principle that embraces a patient's rights to self-determination in medical care or technological intervention, but the good death also includes an acknowledgment of the individual's values and the value of each person's life.
We found that 47 of the 129 Minnesota Public Guardianship Administer case files mentioned quality of life and 11 of the files mentioned death with dignity, with four files including both terms, a total of 53 case files, a number that exceeds the inclusion of any other specific term we traced in the case files. Six of the guardians we interviewed also described how these principles guided their decisions. A death with dignity and the maintenance of quality of life seem goals of the Minnesota guardians for the wards they serve. But these goals are hard to measure and to achieve without subjective assessments of how the wards are feeling physically and psychologically. When considering whether a ward should be moved to a nursing home, for example, one guardian mentioned: "So I'm thinking to myself she wanted to be independent, but she couldn't be, so it's a tradeoff" (I-10). Another guardian noted, "I feel that continuing her DNR/DNI [orders] with comfort and care is the most humane and least restrictive option for her" (F-117). Such terms as independence and lack of restriction might be defined differently by the guardians of the never competent individual than by surrogates for the once competent person, but the terms reflect similar goals nonetheless.
Other scholars include within such definitions of the good death what Braswell (2011) called "relationality," acknowledgment of necessary dependence on others. Along the same lines, Daniel Callahan (1995) defined such selfhood as "the capacity to have feelings and to be aware of them, to reason and be able to make decisions, and to enter into relationships with other persons" (p. 26; see also Buchanan, 1980-1981). Adrienne Asch (2005) also recognized that specific factors in determining quality of life must include "what gives life meaning and value for a particular individual; what circumstances or setting would permit the ill, disabled, or dying patient to derive comfort and fulfillment in existing relationships, experience, or activities" (p. S31; Quinn, 1988; Weinberg, 1988-1989).
These scholars stand in contrast to those such as Norman Cantor (1984-1985), who defined a death with dignity in ableist terms, including freedom from
embarrassment and frustration from diminished intellectual functioning, frustration and helplessness from being dependent on others for every aspect of bodily functioning, humiliation from being viewed in a grossly debilitated state, rage at being physically restrained from removing life-sustaining equipment, or emotional pain from sensing a burden upon surrounding loved ones. (pp. 565-566)
Some Minnesota guardians do seem to apply Cantor's concerns. One guardian, for example, summarized her reasons for recommending against life-sustaining treatment for her wards as follows: "And isn't that what we all want? The dignity of dying without somebody having to take care of you the rest of your life" (I-5).
A more nuanced feature of quality of life or death with dignity, however, emerges in many of the Minnesota case files and interviews, one that allows the guardians to exercise their experiential knowledge to assess the degree of remaining social interaction in a way that focuses on the whole patient. Again, the Minnesota guardians measure quality of life by the extent of social interactions that the ward is able to sustain, but they do so in a way that recognizes that the person with disabilities from birth and/or from the onset of terminal illness may have a unique but still valued way of maintaining social contact. When this contact still exists, no matter how limited it might seem to the abled person, quality of life is present. When it disappears at the onset of a terminal illness, further disability, or extreme pain and suffering, then quality of life is so diminished as to recommend against life-sustaining treatment. One guardian, for example, noted the change in her ward: "[Ward] has previously enjoyed sitting and writing out birthday cards, card games, crafts, music, religious activities, watching television and visiting with friends and staff. Even with encouragement from her favorite nurses, [Ward] now shows no interest in these activities" (F-8). In end-stage Alzheimer's disease, diapered and unable to communicate verbally or walk, and unable to recognize or interact with people, another ward, concluded her guardian, "would not like to continue living in the state she is currently in" (F-8). When her ward was restricted to tube feedings that limited social gathering for meals, another guardian related to the Administrator, "it would not be a quality of life [Ward] would want" (F-76).
The Minnesota guardians, then, measure quality of life based on familiarity with their wards' prior and current social relationships, relationships that must be interpreted in the context of the patient's environment. In fact, in one of the only two disputed conclusions by the Minnesota Public Guardianship Administrator in the 129 case files we analyzed, the Administrator recognized that the ward was "held in affection by the people close to him, and that they wish to give him every opportunity to survive," but the Administrator decided that "mechanical ventilation would severely disrupt his [ward's] living situation and his ability to maintain any meaningful interactions with people closest to him" (F-100), relying on the guardian's description of the case. Moreover, the Administrator (2010, March 10) acknowledged that he would "frequently rely more on the descriptive information" about quality of life provided by the guardian because, although "the MD does include some kind of statement about the person's ability to tolerate the resuscitation attempt," overall "people are actually motivated more by community standards and their personal relationships with individuals than necessarily by the strict language of the law" (n.p.).
In this context, unlike their use of such terms as normal, reasonable, and natural, guardians frame in their own words a resistance to an ableist construction of quality of life. One guardian, for example, avoided the term quality of life altogether: "I have learned not to say the 'quality of life' because who is to say what the quality of life is. Your quality of life is different from mine." (I-5). Another guardian noted that few people could understand that her ward had any quality of life at all because "her wheelchair is one that lays flat, and her legs are twisted, and she's non-verbal"; instead people would comment, "'that poor tortured woman, she should have a DNR'" (I-6). But her guardian observed, "She's very smiley; she's very happy; the people at her home love her. She goes to a day program and has lots of friends there, and in my opinion she is participating in her life. It's just different" (I-6). Quality of life for those who cannot assert autonomy in decision making is measured by individually defined and valued social interactions, interactions that are marked by comfort, happiness, and joy.
In this study of Minnesota guardians and their state wards, we found that the first impulse of the Minnesota guardians is to use substituted judgment for end-of-life decisions, a standard that maintains individual integrity and independence as defined for a broader, ableist society. The best interests standards, however, must frame the vast majority of end-of-life decisions for state wards. The guardians make those decisions on the basis of assessing pain and suffering and the burdens and benefits tied to life-sustaining treatment. Within these assessments, socially and judicially constructed labels such as normal, natural, and reasonable appear—most often not problematized. The guardians, however, consider not only the effects on the wards' bodies but also the effects on their minds as the guardians rely on experiential knowledge derived from interpreting the wards' actions and behaviors and then make their recommendations to the Public Guardianship Administrator. Finally, the guardians attempt to explain how their wards' quality of life has been affected by life-sustaining treatment and/or terminal illness. Although the guardians may measure the good death or the death with dignity according to universal goals of agency and independence and freedom from excessive medical intervention, they are most often experts in interpreting the social relationships and interactions of their wards in the context of their environments. Their experiential knowledge means finding value within a smile or gesture at the end of life's journey.
Thus, perhaps because so few of their cases are ever debated in a courtroom, the Minnesota guardians seem to have found some freedom to interpret statutory guidelines, case precedents, and even professional and agency guidelines. The guardians have become experts at assessing the nuanced features of personal and social interactions, the contexts in which the body exists. At times, the guardians might claim that a restricted life can still be enjoyed, but at other times, the guardians might decide that the end of life has become so limited, so uncomfortable, or so frightening as to have no quality. Communication with the never competent person may be achieved through the most basic verbal utterances or nonverbal gestures. These observations can be persuasive to others in making end-of-life decisions; can bolster, enrich, and enhance the Conroy standards; and may truly protect the best interests of the individual.
Finally, the state values preserving life, and the courts recognize bodily integrity; society constructs and perpetuates dichotomies of the normal and abnormal, the abled and the disabled body, the mind and the body; and biomedicine may not cure but can now manage terminal illness to prolong physical life. The body is socially, legally, and medically constructed and assigned meaning depending on context in which it is placed and debated. Alan Hyde (1997) reminds us that the private body is "constructed as a refuge from social demands, but of course the construction itself is a social and public act. Moreover, the body is not really the body, but the body as constitutional right, a kind of discursive body" (p. 85).
On the one hand, biomedical science, as well as the law, further shapes our assumptions about the normal body, in particular what natural limitations the body has and the results of any deviations from that norm (see, for example, Scully, 2002; McClean & Williamson, 2007). The medical model focuses on disability as the result of physical and mental impairment that, if not curable, may be at least manageable. Therefore, Eric Cazdyn (2012) reveals a concept of the body as "the already dead"; the already dead is "the medical patient who has been diagnosed with a terminal illness only to live through medical advances that then turn the terminal illness into a chronic one" (p. 5; see also Kehoe, 1998-1999; McClean & Williamson, 2007; Shakespeare & Vernon, 2008). On the other hand, such groups as the Not Dead Yet movement combat the myth of the tragic life of the person with disabilities, in particular the medical view of disability that "treats the individual as deficient and inherently inferior because she falls below an arbitrary physiological standard that delineates social acceptance and that can only be 'normalized' and incorporated into society through a medical cure" (Quellette, 2006, p. 24; see also Drake, 2012). It is within this broader context that Minnesota guardians must make their decisions for beginning, maintaining, or withholding or withdrawing life-sustaining treatment for their wards. It is this broader context that most likely contributed to the decision that stepfather Fred made in the story that opened this article. The guardians, however, most often value the individualized context in which their wards function, a context in which the guardians apply, redefine, and even resist ableism.
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- John Fillbrandt, Public
Guardianship Administrator at the Minnesota Department of Human Services,
provided us with contacts and resources and helped shepherd the project from
the very beginning.
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- To maintain confidentiality, we
assigned random numbers to each interview. The quote in the beginning of
this article came from interview 13; the quote offered here comes from
interview 6 or I-6.
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- To maintain confidentiality, we
use [Ward] as a substitute for the redacted names in the case files and
assigned random numbers to each file. This quote comes from case file 110 or
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Appendix A Interview Questions
- Describe how your personal and professional experiences led you to become a guardian.
- Can you estimate the number of clients for whom you have provided guardian services?
- Now we would like to focus on health care decisions that occur closer to the end of life. These include decisions to consent to or forgo a treatment, procedure, or course of care. Under what circumstances might your responsibilities turn to those end-of-life decisions?
- If you initiate the discussion about end-of-life decisions, what circumstances lead you to raise the issue, what process do you use, and with whom do you begin discussion?
- If someone else such as a health care provider, social worker, or family member initiates the discussion, what process do you use to respond?
- As you are making decisions closer to the end of a client's life, how do the
following factors affect these decisions, and can you share some examples?
- The wishes of your client as they may be expressed directly or indirectly.
- Your understanding of your client and what is important to him or her, such as independence or interaction with others.
- The wishes of your client's family as they may have been expressed directly or indirectly.
- What additional factors do you consider to arrive at a decision?
- When you are engaged in an end-of-life decision-making process for your client, does one person or persons tend to outweigh other persons in such discussions and decisions? If so, why do you think this occurs?
- Have some medical treatments raised more difficult issues than others in end-of-life decisions? If so, what are they, for whom are they troublesome, and why do you think they are more problematic?
- Have your decisions to either continue or forgo life sustaining treatment ever been challenged by health care providers? By family members or friends? By other caregivers such as nursing home staff? By clients? If so, what concerns do they raise? How have you attempted to resolve these conflicts?
- Have you been involved in end-of-life decisions that have been reviewed by a judge or discussed in court? If so, could you give an example of what brings an issue to court? How was the case resolved?
- Are you aware of court decisions about end-of-life care (e.g., Schiavo, Quinlan, or Cruzan)? Have these decisions influenced how you approach guardianship decisions? Have these cases been mentioned or articulated by family members, health care providers, or others with whom you work? If so, how?
- Do you have any suggestions about how to improve the guardianship system as it affects you and your clients? What do you think is currently working well in the system?
- Is there anything else that you would like to share with us? Are there any questions we should have asked and did not?