Author: Troschuk
Company: The University of Manitoba

Vulnerability, Disability, and Palliative End-of-Life Care
Deborah Stienstra, Harvey Max Chochinov. Journal of Palliative Care. Toronto: Autumn 2006. Vol. 22, Iss. 3; pg. 166, 10 pgs

Abstract (Summary) 
There are widely held assumptions about "fates worse than death", based on widespread social attitudes and behaviours towards persons perceived to be other than "normal". Assumptions about what constitutes normal automatically relegate different ways of voiding, different ways of communicating, different ways of ambulating, different ways that bodies can appear, and so on, to the status of "abnormal", "less than whole", or even "repulsive".
Full Text (7028  words)
Copyright Center for Bioethics, Clinical Research Institute of Montreal Autumn 2006
[Headnote]
Abstract / Palliative care has paid exceedingly little attention to the needs of disabled people nearing the end of life. It is often assumed that these individuals, like all patients with little time left to live, arrive at palliative care with various needs and vulnerabilities that by and large, can be understood and accommodated within routine standards of practice. However, people with longstanding disabilities have lived with and continue to experience various forms of prejudice, bias, disenfranchisement, and devaluation. Each of these impose heightened vulnerability, requiring an honest, thoughtful, yet difficult revisiting of the standard model of palliative care. A proposed Vulnerability Model of Palliative Care attempts to incorporate the realities of life with disability and how a contextualized understanding of vulnerability can inform how we approach quality, compassionate palliative care for marginalized persons approaching death.
Résumé / Les services de soins palliatifs n'ont accordé que très peu d'attention aux besoins des personnes handicapées qui étaient en fin de vie. Plus souvent qu'autrement on suppose qu'elles se retrouvent, comme tous les malades ayant peu de temps à vivre, dans des services de soins palliatifs et que dans l'ensemble les besoins particuliers associés à leur grande vulnérabilité sont pris en charge et traités dans le cadre de la pratique médicale courante. Cependant, ces personnes qui vivent depuis longtemps avec des handicaps doivent continuellement composer avec l'expérience des préjugés sous toutes ses formes, qu'il s'agisse de parti pris, de perte de droits, de discrimination ou de dévalorisation. Chacune de ces expériences exacerbent la vulnérabilité de ces malades de sorte qu'il devient de plus en plus nécessaire de faire un réexamen honnête, franc et réfléchi, voire difficile, sur la façon traditionnelle dont on leur dispense les soins palliatifs. Tenant compte de cette vulnérabilité, un nouveau modèle de soins palliatifs tente d'incorporer les réalités de la vie de la personne handicapée afin de mieux comprendre la nature de cette vulnérabilité et ainsi améliorer la qualité des soins palliatifs et la compassion vis-à-vis ces personnes à l'approche de la mort.

INTRODUCTION
Many Canadians face barriers to competent compassionate palliative care at the end of their lives. Some who are especially vulnerable encounter barriers more frequently or to a greater degree than others (1). At first glance, vulnerability may seem a rather nondiscriminating concept to apply to people in palliative care. After all, it might be argued that everybody facing the transition to life's end is vulnerable. Disabled people, however, may be-or may be made to feel-especially vulnerable. Palliative care practitioners, operating in a traditional cancer paradigm (2), are often less informed about and feel overtaxed by the perceived and/or real special care needs and issues facing disabled people. Regrettably, few studies have examined the palliative care needs of those with disabilities (3). Indeed, palliative care practitioners may flounder when confronted by populations whose dying trajectories are long, and preceded by significant physical, psychological, or intellectual impairments and their attendant requirements for support. Feelings of impotence or helplessness can lead to therapeutic nihilism, wherein options that would normally be offered are withheld or deemed inappropriate based on the judgment that, because of a patient's disability, their application would be unnecessary or futile.
Palliative care issues involving people with longstanding physical, psychological, or intellectual disabilities-either with comorbid life-limiting conditions or transient episodic life-threatening complications-have been largely overlooked. Vulnerability, whether internally mediated or externally imposed, can profoundly influence, shape, or even distort the way disabled people are perceived, understood, and ultimately cared for. In this article, we examine the concept of vulnerability as a way of providing novel and additional insights into the complexities of palliative end-of-life care. Applying this concept to those who are disabled illustrates gaps and opportunities that may serve to advance and strengthen the way in which we approach palliative care for these often neglected populations.
SOCIALLY CONSTRUCTED VULNERABILITY
Social constructionism, a theoretical approach widely accepted in the social sciences and humanities (while largely absent within traditional medical discourse), asserts that inequalities or differences in circumstances related to characteristics such as gender, sexuality, race, and disability are not based on biological determinants. Rather, different circumstances arise because of the meaning or value given to those biological distinctions in a social context that may change over time.
The social obstructionist approach to disability maintains that "People are disabled both by social barriers and by their bodies" (4). Stigmatizing attitudes held by individuals as well as embedded in policy are a primary source of discrimination against disabled individuals, with interactions between individuals and their environment largely defining the disability experience (5). Social constructionism recognizes that an understanding of disability must not be confined exclusively to considerations around actual physical or psychological functional losses and presumed associated risks, but must also take into account the value or lack of value we ascribe to those losses and vulnerabilities (6-8). Since the totality of individuals is frequently described in terms of "personhood", socially constructed vulnerability highlights how assumptions regarding loss and change can undermine or come to inform our definition of personhood for those living with disabilities.
Vulnerability
In common parlance, vulnerability refers to an internal sense of susceptibility to being hurt. To feel vulnerable means to be, or to perceive oneself to be, at risk of physical injury or of emotional or psychological wounding. According to Hoffmaster, what is most important about being vulnerable is "the loss of power that vulnerability imposes and signifies, and the attendant loss of control that ensues...vulnerability means that one is controlled by, rather than in control of, the world..." (9, pp.41,43) A recent or sudden loss of bodily integrity, the experience of pain, a clouding of one's thinking-all can inflict an overwhelming feeling of susceptibility, accompanied by a sense of helplessness, incompetence, and fear. The universal human experience of approaching death is invariably accompanied by having to face the unknown. Kottow suggests that vulnerability is part of that experience: "vulnerability means that we have to live with mortality" (10). He further suggests that, once someone becomes ill or disabled, they are no longer merely vulnerable, but rather "vulnerated" or susceptible to compound additional harm (10,11).
Vulnerability can be externally mediated or even unwittingly imposed. Thus, while one can feel vulnerable-so common in the context of a life-limiting condition-it is important to examine what can provoke a heightened sense of susceptibility. In essence, the distinction is being made between feeling vulnerable and being made to feel vulnerable. Kottow argues that there is a difference between a universal or essential state of vulnerability that we all face as mortals, and situational vulnerability-the experience of loss that results from specific circumstances (10). Others suggest a similar understanding of vulnerability as something that is largely created. The World Bank, in its attempts to address poverty, reviewed how vulnerability was understood across a variety of disciplines. Looking exclusively at the household level, the authors argued that vulnerability is the probability of experiencing a loss in the future relative to some benchmark of welfare (12). In this case, vulnerability is seen to be an interplay between exposure to risk, the capacity to manage risk by reducing or eliminating it, and an outcome. The risk posed from malaria-bearing mosquitoes, for example, can be managed by eliminating mosquitoes, by reducing the risk through the use of netting, or by taking anti-malarial medication. If not appropriately managed, the outcome is illness which, in turn, can lead to poverty. At the same time, poverty can adversely affect the capacity of individuals to manage a risk such as malaria-bearing mosquitoes. From this perspective, risk or the capacity to respond to risk is what the household is vulnerable from, while the outcome illustrates what the household is vulnerable to.
The circumstances in which people live and the assumptions that society holds about them can trigger vulnerability. Vulnerability arises not only in response to environmental risk and the ability to respond to it, but from more broadly held social attitudes or assumptions about specific groups of people. Vulnerability manifests in the context of social relationships, and the societal attitudes and assumptions that shape, inform, and often taint these relationships.
Disability and Social Constructionism
Numerous assumptions and value judgments are based on differences attributed to various disabilities. Impairments-such as being blind or deaf-provide the rationale for viewing or treating disabled people differently. When seen as a social construct, functional impairments in and of themselves do not account for all perceived differences. Rather, differences result from the meaning or value that we associate with these impairments. For example, we may assume that blind people are not able to live independently, yet, with the right supports-a service dog, a white cane, screen-reading computer technology-many barriers to independent living are removed; blindness ceases to be a barrier in an environment structured for people who are both sighted and blind. A social construction approach to disability argues that society creates barriers, based on notions of who is "normal" and who is not. People with disabilities are usually portrayed as "abnormal" and in need of special accommodation, as opposed to being seen as individuals whose lives depict part of the full and broad spectrum of diversity amongst human beings (13).
From the perspective of a social construction framework, assumptions in society are widely held and largely unquestioned, often coming to be seen as "common sense". Common assumptions related to people with disabilities are that they heroically face the challenges of their disabilities; that they ought to be pitied because of their disabilities; that they are deserving of charity because they are disabled; that being disabled necessarily makes them worse off at every level. On the other hand, studies have shown that life satisfaction ratings of people with marked disabilities were no different from those of their nondisabled health care providers (14). Nevertheless, as negative attitudes become more prevalent, they become embedded in our social consciousness and, ultimately, in our social systems and organizations. As such, they work their way into policies and practices that fail to address diversity (15). This, in turn, excludes people with disabilities from full participation in society, forcing them to seek special measures to deal with their "unique" circumstances.
The most subtle and least visible aspect of vulnerability as it relates to disability is based on hidden assumptions and attitudes, which can lead to practices that offer advantages to some and disadvantages to others. Disabled populations tend to be marginalized within society (16); they are more vulnerable to various health-related concerns, including harm and neglect (17), which require safeguards to ensure their protection (18). People with physical, psychological, or intellectual impairments tend to be devalued and stigmatized within society. Carrying this stigma has a profound effect on their sense of personhood, with accompanying social devaluation and mounting health care barriers (19,20).
Some attitudinal barriers are obvious and tangible, affecting, for instance, transportation options and accessibility to offices, clinics, and diagnostic equipment (21). Others, hidden and less tangible, manifest in a lack of health care provider awareness regarding the different needs of these individuals (21). In some instances, this will include the assumption-perhaps not even conscious-that disabled people do not necessarily require all health care measures because they are somehow less than "whole people" (21). In a study of 150 community-residing adults with serious mental illness, Foti et al. found that subjects were able to participate in advance care planning for complex and potentially distressing health crises (22). Compared to the general population, these individuals, responding to standardized hypothetical medical scenarios, were less likely to discontinue artificial life support, even in the case of irreversible coma from head trauma. While this response rate differs from Caucasians within the general population, it mirrors the choices expressed by some racial or ethnic groups-African American, Latinos, and Haitians-who often choose to continue aggressive treatment even when the prognosis is poor (23-26). An underlying distrust of health care derives from disparities in access to health care, quality of care, and delivery of services (27,28).
Vulnerability is frequently cumulative. Physical, psychological, or intellectual limitations often result in a spiral of ancillary vulnerabilities, be they economic, legal, or knowledge-related (29). As a group, people with disabilities have amongst the highest poverty rates, lowest educational levels, lowest average incomes, and highest out-of-pocket expenses of all population groups (30). Any disruption to the financial stability of people with disabilities can threaten their access to necessary housing, nutrition, medical care, and other resources, resulting in further vulnerability and possible poverty (29). People with intellectual or cognitive impairments may have less knowledge about how to access end-of-life care, how to advocate for themselves, or how to make their needs and concerns known (31). This spiral of cumulative vulnerability is one aspect of vulnerability which can lead to inadequate endof-life care for those particularly in need.
DISABILITY, VULNERABILITY, AND PALLIATIVE CARE
Within a contemporary model of palliative care, the focus of inquiry-like medicine itself- has tended to be on the individual him or herself (Figure 1). Within this model, palliative or supportive care measures are applied to individuals in varying degrees, depending pn their level of need or intensity of discomfort. The concept of vulnerability, however, provides an additional dimension to this model. Within this revised "vulnerability model of palliative care" (Figure 2), the assumptions we hold towards certain populations or perceived afflictions can result in profound disparities in the availability of various health care options, including curative, palliative, and bereavement supportive modalities. Marginalization and heightened vulnerability, based on prejudice, bias, or faulty assumptions, can find people who are disabled, poor, or disenfranchised further victimized by ever narrowing health care options.
Marginalization* is a process of creating and valuing differences (for those advantaged by these disparities) between and among people. It sets up a dichotomy between 'us' and 'them' based on perceived differences in age, economic status, disability, gender, race /ethnicity, location in the world economy, etc. This process then uses these differences to establish or explain variations in services, policies or treatment which, in turn, lead to heightened vulnerability for those whose differences are devalued or understood to be outside of the norm. As marginalization increases, curative options tend to be sacrificed earlier (Figure 2); this can segue to palliative or comfort measure considerations, to the extent that these are available. In the absence of antibiotic therapy, for example, sedation can offer relief, while an infection may decrease survival time. Marginalization within the international community may result from political instability, economic or resource disparities, consequent poverty, or various health care crises. Taking South Africa and the AIDS pandemic, for example: antiretroviral regimes are limited in availability and often difficult to maintain; as a result, most people with HIV/AIDS in South Africa can only be offered palliative care (32). (The average life expectancy in South Africa in 2004 was 48.0 years and is estimated to drop to 41.0 years by 2010 (33).) Applying the Vulnerability Model of Palliative Care to various common end-of-life issues within the context of disabilities illustrates various gaps and opportunities that may inform and improve palliative care practices for disabled people.
End-of-Life Decision Making
In many instances, end-of-life transitions are affected by decisions pertaining to the type, location, or duration of care, the person(s) making these decisions, and how these decisions are implemented. Many contentious ethical debates arise pertaining to "do-not-resuscitate" orders, advance directives, and the role of health care proxies. Physicians and other health care providers wield tremendous sway in these decisions, both by providing information about possible options and by circumscribing the bounds of treatment decisions. Basic caregiver assumptions may see people with disabilities made vulnerable as a result of restricting who gets to make which decisions at the end of life, and who might be excluded from this process.
End-of-life decision making is primarily undertaken in the context of a relationship between a physician, patient, and, generally speaking in the palliative care setting, the patient's family. The patient may identify care preferences, expecting that those preferences will be respected. Practices to support individual autonomy in decision making are embedded in the normal standards of palliative care. The experience of people with disabilities illustrates how vulnerability can actually be created or sustained within that kind of decision-making process. It might be assumed that patients will be able to access the information they need to make their choices in the format provided. Deaf people, however, may not be able to avail themselves of timely interpreter services in hospital settings, especially in rural or remote settings. People with other communications barriers may find that, if they do not bring their own support system, no one will be available to "echo" their wishes or interpret information for them. As a result, they may not get, in an accessible format, the information they need to make end-of-life decisions. Such marginalization causes heightened vulnerability and a marked sense of being out of control in making decisions that affect them most.
Palliative care physicians assessing mental competence may hold certain assumptions about the ways in which intellectual impairment shapes a patient's competency. Many people with intellectual disabilities are assumed to be legally incompetent by those unfamiliar with their lives. However, these disabled individuals may make decisions on an ongoing basis, with a support network that ensures they receive and assimilate all the necessary information; that they understand the options available to them; and that they have the time necessary to make these decisions (31). Supported decision making provides an alternative model to that based on individual autonomy. Decision making based on relational autonomy recognizes that relationships are an integral dimension of individuality, while acknowledging that patient agency is influenced by power and authority. Reformulation of the traditional individual autonomy model is all the more necessary as we consider decision making for subjects whose claim on such autonomy is more tenuous-children, people who have been labelled mentally handicapped or incompetent, and individuals who are very sick. Moreover, intensified dependency typically accompanies illness. Under conditions of disabling illness, it becomes apparent that maintaining individual autonomy is fraught with risk and may be comprised (34). The notion of collective or relational autonomy, therefore, encourages us to examine the context of the lives of disabled individuals, particularly with respect to how they made decisions prior to reaching the palliative care setting.
Value judgments about the quality of life of a disabled person, or misunderstanding about normal daily existence of someone with a longstanding disability, may prevent full implementation of the person's expressed treatment or care decisions. Because of negative assumptions about what it is like to live with disability, a physician may take for granted that persons with disabilities would choose not to be resuscitated, or he might imagine that living with a ventilator or some other device would necessarily increase the patient's suffering, rather than consider the possibility of its being a liberating technology (within the disability community, the term "wheelchair confined" is often replaced by "wheelchair liberated" or, more simply, "wheelchair user").
End-of-life decision making is a risky venture for people with disabilities. They may not get appropriate information or be able to make their wishes known. They may be deemed incompetent and, therefore, unable to make decisions about their dying, although they have made decisions, with appropriate support, about their lives for years. At life's end, when most people feel vulnerable, the situation of people with disabilities illustrates how assumptions about their capacities and suffering can actually heighten their vulnerability.
Caregiver-Care Recipient Relationships
Palliative care, with its interdisciplinary team approach involving families and informal care providers, challenges many of the traditional power imbalances between patient and care provider. Those providing care build their practices around a core value of good will or beneficence; they assume that good will creates a safeguard, ensuring a successful caring relationship. They bring their expertise, objectivity, and knowledge about the recognizable trajectories of dying to the relationship of the care recipient. This valued knowledge and skill enhances the quality of care provided and informs decision making that will benefit the care recipient. Yet these assumptions can also create and perpetuate vulnerabilities for people with disabilities.
For many people with disabilities, health care has been an ongoing part of their lives. Physicians, rehabilitation, and other experts provide information, medication, and possible solutions to the multiple complexities of their bodies or minds. Relationships with care providers have been carefully negotiated, tempered with experiences of inaccessible examining tables, parallel transportation systems that require them to wait for hours for a ride despite an appointment of short duration (35), and invisibility or irrelevance to staff (36). Disabled people submit to care providers who have government-granted authority to declare their level of incapacity and, therefore, their access to income or other support programs. To sustain themselves in a system that treats them according to body part, they have become experts in their own care, coordinating multiple professionals whose good will and knowledge has made their lives more functional. They manage and direct the care attendants who move their limbs, change their diapers, and brush their teeth.
As the end of their lives approaches, whether in hospices or hospital settings, people with disabilities have to renegotiate all of their relationships with care providers, this time with professionals who believe they know best how to ease end-of-life transitions and do so with "good will". These care providers may not recognize their own complicity in creating and sustaining vulnerabilities for people with disabilities. In thinking that palliative care avoids or mitigates unequal power relationships, care providers may not recognize that people with disabilities may be wary of any and all health professionals, based on their past experiences with the system. Palliative care practitioners may believe they do things differently and are trustworthy, but in an end-of-life setting, have very little time to demonstrate this. Their belief that their knowledge will support and sustain a successful relationship may inure them to the value of the expertise of those individuals with substantial experience in managing their own care. They may not be familiar with individuals who assert their own autonomy and capacity, even or especially during a time of crisis, and may find this threatening to their own perception of care practice (35). They may be faced with dying trajectories that are unfamiliar and outside the traditional cancer model, requiring creativity and imagination to achieve optimal palliative care. Each of these challenges, especially when viewed from the perspective of socially constructed disability and vulnerability, offers care providers an opportunity to rethink and reshape their care philosophies and practices.
Death-Hastening Measures
Proponents of assisted suicide frequently argue that it is reasonable for people to be depressed about a diminished quality of life due to irreversible illness or disability and, therefore, such "rational depression" should not call into question the individual's competence to request assistance in dying (38). Yet, according to Mashara, among people who are ill or living with chronic conditions, there is "no empirical evidence indicating if the desire for a premature death by euthanasia is any different, any less linked to mental disorders, or any more rational than the desire to commit suicide" (39). Nevertheless, consider two case scenarios, each involving a young man with an advanced gastric malignancy who expresses a wish to die. In one instance, due to a prior automobile accident, the patient is quadriplegic. The second patient has been able bodied, albeit with typical functional limitations associated with advanced cancer. How might the difference between these two men influence the way care providers interpret an expressed desire for early death? How likely is it that a clinician would consider the possibility of an underlying depression or some other remediable source of suffering, and to what extent might the presence of quadriplegia provide a sense that the request is both understandable and rational?
In examining these contrasting scenarios, several assumptions bear noting. First, there may be an assumption on the part of the care provider that loss of autonomy or the functional limitations associated with disability invariably result in suffering. As a moral imperative, palliative care seeks to alleviate suffering. This philosophical stance is used to justify withholding or withdrawing treatment and may include measures that-in the course of aggressively treating distress-could inadvertently foreshorten life (40,41). While all would agree that persons with disabilities who request assistance to die are suffering, they would differ in their explanation regarding the nature and cause of the underlying distress (38). While some would focus on the issue of personal autonomy and compromised quality of life, disability activists would point out social coercion and lack of social supports. Take the case of David Rivlin, a young man with quadriplegia living in a nursing home in Michigan in the late 1980s. Apparently lonely and finding life within a nursing home meaningless, he sought out physicianassisted suicide. (He had once tried to live in his own home, but discovered that the State of Michigan provided less than $10 per day for assisted community living, compared to $230 per day for state funded nursing home placement.) He died when a hospice physician, with whom he had no prior relationship, agreed to sedate him and remove his ventilator. In his last media interview, he indicated that, while he did not wish to die, he saw it as the only escape from the restrictions and boredom of institutional life, while imploring the public to help others with disabilities "before it's too late" (42,43).
It is often assumed that controlling the timing and circumstances of one's death is a way of exercising free will and an expression of individual autonomy. Physicians who help their dying patients commit suicide report these people wanting to control the timing and manner of their death, and avoid dependence on others (44). In these circumstances, death hastening is framed as compassionate care, which reduces suffering, adheres to the competent patient's expressed wishes, and affirms autonomy. Within this framework, factors undermining individual autonomy are perceived to threaten the integrity of whole persons (45-47). In fact, the foremost reasons expressed by 42 people who died as a result of assisted suicide within the first two years of the Death with Dignity Act in Oregon were feared loss of autonomy, loss of control of bodily functions, and fear of becoming a burden-the disability aspects of terminal illness (48,49). Not surprisingly, the disability community is more apt to perceive death hastening as the ultimate assault on autonomy and a devaluing of their continued existence.
A social constructivist perspective on disability and vulnerability helps lay these assumptions bare. When individual autonomy is conflated with personhood-a common attitude in Western society-any significant assault on independence may be equated with suffering (50,51). Loss of bodily integrity, or mental or intellectual incapacity can lead to the loss of autonomy, and assumed loss of dignity and moral agency. These losses are frequently accompanied by social devaluation and the further imposition of vulnerability-that is, a determination that the patient's life is no longer as valuable as it once was, or as valuable as the life of someone without a significant disability. Rational decision making about the value of one's life becomes difficult when individuals have internalized years of public devaluation; immersion in this unrelenting prejudice can result in an internalized pressure that drives people with disabilities towards self-annihilation (38). It thus comes as little surprise, for example, that "courts or scholars rarely champion continued treatment for cognitively impaired people who still enjoy some level of life satisfaction and human interaction" (52). According to Kothari, healthcare professionals significantly underestimate the quality of life of people with disabilities, with the greatest danger being they will infer a lower quality of life which implies a life less worth maintaining (14). In essence, the assumption in the case example, that the patient with quadriplegia has long suffered-and continues to do so-may lead to the conclusion that his request is rational and not, as in the other case, based on some possible remediable source of distress.
Autonomy can be safeguarded or bolstered by appropriate supports and accommodations. Wheelchairs can liberate, diapers and catheters can alleviate distress; assistance with eating and transportation can allow the continuance of quality existence (53). Patients with spinal cord injuries, for example, report that their subjective quality of life or life satisfaction is related less to the severity of their injury or level of functional independence than it is to their social and psychological functioning (54-56).
Dignity can also be protected, at times, particularly if patients perceive themselves to still be valued within their communities and social support networks (57-60). When cognitive limitations preclude an ability to independently evaluate and assimilate complex information, having one's opinion acknowledged and heard within a collective of friends and family can bolster dignity and return moral agency. These manoeuvres not only lessen marginalization and resulting vulnerability, but also preserve a sense of self and personhood. In this way, the assumed connection between loss of autonomy and suffering-a perceived disintegration of sense of self-can become uncoupled (51). While suffering may not be eliminated, these mitigating approaches can prevent suffering from becoming a defining characteristic of someone living with a long-term disability. A moral justification for nontreatment or a hastened death based on the simple presence of a disability-even in the face of a life-limiting condition-begins to unravel.
There are widely held assumptions about "fates worse than death", based on widespread social attitudes and behaviours towards persons perceived to be other than "normal". Assumptions about what constitutes normal automatically relegate different ways of voiding, different ways of communicating, different ways of ambulating, different ways that bodies can appear, and so on, to the status of "abnormal", "less than whole", or even "repulsive". Public discourse in which hastened death is considered an acceptable response to suffering becomes commonplace. So hidden are these assumptions that health care providers may concur with the apparent rationality of hastened death, to the exclusion of judicious consideration of other therapeutic measures or alternatives. People who feel devalued by others are more likely to perceive themselves as worthless. Robert Burt observed this in the case of a severely burned man: "He is a painful, insistent reminder to others of their frailty, an acknowledgment that, in the routine of everyday life, is suppressed. Others cannot avoid wishing that he, and his unwanted lesson, would go away. He cannot avoid knowing this of others and wishing it for himself" (61). A seemingly compassionate stance of considering a patient's death-hastening request may actually represent collusion with the patient's hopelessness and reaffirm her perception that life is without meaning or value. Care providers, therefore, must disentangle the patient's expressed wishes for death from unspoken wishes for affirmation. The perception of patient suffering must further be separated from the care provider's own "suffering", based on feelings of therapeutic helplessness and a sense that they are bearing witness to a "fate worse than death".
In brief, the socially constructed view of disability and vulnerability allows the uncoupling of loss of autonomy from suffering. Within the context of palliative end-of-life care, this perspective helps unravel a moral or clinical rationalization for hastened death based on disability. From this vantage point, disability can be seen as compatible with a valued life; though touched by vulnerability, the lives of disabled people are not defined by it.
CONCLUSION
A deeper understanding of the Vulnerability Model of Palliative Care and an appreciation of the degree to which vulnerability can be socially constructed promotes insight into what constitutes good care for all people in end-of-life transitions. It reminds us that underlying social attitudes and values can result in marginalization, and the shaping of professional practice and policy in ways that solidify or reaffirm vulnerabilities. Challenging these assumptions offers an opportunity to both inform practice and influence policy, thereby enhancing palliative care opportunities for anyone needing these specialized services. Practitioners need to engage these issues beyond reliance on good will, thus critically reflecting on social and cultural values they bring to the caring relationship, and the extent to which they shape care decisions and practices.
While palliative care is fundamentally committed to the alleviation of suffering, actual suffering and perceived suffering are not always synonymous. The experiences of people with disabilities suggest that suffering can often be positively redressed by supporting an individual's personhood and by providing relevant disability-related supports, even at the end of life. Dignity-enhancing strategies can be used to safeguard against the disintegration of personhood (57). Palliative care practitioners must look not only at supporting individual autonomy, but also at relational autonomy, which places individuals within a context of enduring supportive relationships.
To move from these basic insights to recasting the norms of palliative care practice will require broadened educational frameworks, such as recognizing expertise from outside traditional health care domains. Hearing and learning from the experiences of disabled patients at the end of life ought to guide, inform, and, ultimately, shape care. This expertise could be built into education modules to support ongoing learning from the vantage point of the care recipient. Palliative care could also enhance its knowledge and experience by drawing on insights from other vulnerable groups, including knowledge from fields such as disability studies, women's studies, race/ethnicity studies, and poverty analysis.
Finally, a social constructivist perspective of vulnerability and disability must move to the transformation of certain end-of-life health care policies. Those that are based on conventional understandings of autonomy, suffering, and quality of life-informed consent, advance directives, the withholding or the withdrawing of treatment, palliative measures of last resort such as palliative sedation, to name only a few-need to be revisited, in order to explore or expose the extent to which they support or maintain vulnerabilities. Informed by the Vulnerability Model of Palliative Care, policy makers must integrate end-of-life care into a broader disability support framework. By so doing, the field of palliative care and each and every one of its recipients stand to gain so very much.
Date received, April 18, 2006; date accepted, July 14, 2006.
[Footnote]
* Wolfenberger' notion of social devaluation is similar to this (20).

[Reference]
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[Author Affiliation]
DEBORAH STIENSTRA, Interdisciplinary Master's Program in Disability Studies, University of Manitoba, and HARVEY MAX CHOCHINOV, Manitoba Palliative Care Research Unit, CancerCare Manitoba, Department of Psychiatry, University of Manitoba, Winnipeg, Manitoba, Canada

[Author Affiliation]
Stienstra, Deborah, PHD
Interdisciplinary Master's
Program in Disability Studies
University of Manitoba
128 Education Building
Winnipeg, Manitoba
Canada R3T 2N2
Chochinov, Harvey Max, MD, PHD, FRCPC
Manitoba Palliative Care
Research Unit
CancerCare Manitoba
Room 3021-675 McDermot Avenue
Winnipeg, Manitoba
Canada R3E 0V9