This article intervenes in the debate, among US disability rights advocates, about physician-assisted suicide (PAS). Through an ethnographic study, I situate this debate in the context of the dominant form of end-of-life care in the US hospice. Based on this analysis, I argue that PAS should be an issue of secondary concern to disability rights advocates, and that their primary concern, at the end-of-life, should be the improvement of US hospice care. By thus “putting the ‘right to die’ in its place,” they can achieve consensus among themselves and leverage this consensus to achieve the most substantial advancement of disability rights.
Braswell, H. (2018), "Putting the “Right to Die” in Its Place: Disability Rights and Physician-Assisted Suicide in the Context of US End-of-Life Care", Sarat, A. (Ed.) Studies in Law, Politics, and Society (Studies in Law, Politics, and Society, Vol. 76), Emerald Publishing Limited, pp. 75-99. https://doi.org/10.1108/S1059-433720180000076005Download as .RIS
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There are few topics more contentious among disability rights advocates than physician-assisted suicide (PAS). In general, the practice has been rejected. Prominent disability rights advocates argue that PAS is not an expression of true autonomy, but rather a capitulation to the discriminatory idea that it is better to be dead than disabled (Braswell, 2011; Gill, 1998, 2010; Longmore, 2005). Nevertheless, there are also supporters of PAS in the disability rights community (Batavia, 1997; Davis, 2013, p. 95–107). Such individuals and groups argue that, because of its emphasis on autonomy, PAS is a logical extension of the disability rights movement. Though these supporters acknowledge disability discrimination, they claim that such discrimination is not sufficient to justify stripping individuals of their choice about how to die.
This article is an intervention in this ongoing debate among disability rights advocates regarding the legalization of the “right to die.” Nevertheless, in this intervention, I will not advocate either for or against PAS. Rather, I will argue that disability rights advocates can, in spite of their differences on the legitimacy of PAS, share the goal of combatting structural discrimination within US end-of-life care. I will argue that, though primarily impacting the terminally ill, such discrimination is a disability rights issue, and that it should hold greater importance for disability rights advocates than “right to die.” By thus putting PAS “in its place” – one of secondary importance, from a disability rights perspective – advocates will be able to better promote disability rights than they would if they make either supporting or opposing PAS their primary goal.
I will make this argument through the use of my own ethnographic study of a US hospice that I will refer to as “Amberview Hospice.” Amberview is an Atlanta-area branch of a major national hospice organization. Like most US hospices, its structure is largely determined by the major piece of federal legislation regulating hospice care in the United States: the Medicare Hospice Benefit. As such, though a local institution, it provides a window into the general functioning of US hospice care.
I will argue, based on this ethnography, that the US hospice system structurally discriminates against terminally ill patients who do not have primary caretakers. Such patients are left alone at home, in conditions that are negligent or abusive. Alternatively, they are sent to nursing homes, where they are torn between the conflicting incentive structures of hospice and nursing home providers. In both situations, they live their final days in an environment that is institutionally segregated and lacking in access to basic social goods. As a result, the US hospice system systemically discriminates against terminally ill patients without kinship support.
This discrimination is, I will argue, a disability rights issue. But it has not been perceived as such because the disability rights discussion regarding end-of-life care has focused exclusively on PAS. This focus has marginalized broader access concerns pertaining to the terminally ill. Such concerns have direct implications for PAS. But the question of access for terminally ill individuals within the US hospice system is a disability rights issue in its own right, and one that is, in both quantitative and qualitative terms, more central to disability rights than PAS.
It is also an issue that both sides of the disability rights debate about PAS can agree on. But the substantial agreement among disability rights advocates is obscured by the focus on the “right to die.” By decentering the right to die from the disability rights engagement with terminal illness – “putting it in its place” – advocates will be able to achieve a substantial consensus, within the disability rights movement, on the need to improve US end-of-life care. They can then build on this consensus to reengage the national conversation about PAS.
One possible objection to my argument is that PAS and hospice are two different issues. One’s support of or opposition to PAS need not have any relevance for their position on hospice. And yet, from a disability rights perspective, that is not true. Developing a disability rights perspective on PAS requires examining the possibility that terminally ill individuals are subject to ableist discrimination. Such a possibility must be explored in the social environment in which they are situated. Hospice, as the predominant form of end-of-life care in the United States, is a key part of this environment. Thus, from a disability rights perspective, the organization of US hospice care and PAS are inherently intertwined.
And yet, though hospice and PAS are intertwined, they are also different: While disability rights advocates must base their opinions on PAS, in part, in an assessment of US hospice care, their positions on hospice need not determine their position on the “right to die” debate. On the contrary, my argument is that while this debate will – and should – persist in disability rights, there is no debate within the field about the need to improve hospice services. But this consensus has been obscured by the focus on the “right to die.” By revealing the intertwined nature of PAS and hospice, I will thus make it possible to disentangle the issues – and to develop a unified disability rights position on the “end-of-life.” Developing such a position requires discussing the central issue that has divided disability advocates in their approach to the dying: PAS.
What is PAS?
PAS is a form of voluntarily ending one’s life with medical assistance (Dixon, 1998; Satz, 2002; Weir, 1997). In it, a medical doctor provides a prescription for a fatal drug to a patient who has requested it. The doctor knows that the patient intends to use this drug to end his or her life. However, the doctor does not directly give the patient the drug. The patient takes it him or herself – or elects not to take it at all. But the lethal action comes directly from the patient, and only indirectly from the physician.
In most cases, a doctor following through with this procedure would be condemned – both medically and legally – for aiding a patient with suicidal ideation. But, in PAS, the patient’s suicidal ideation is not condemned because of the condition that, it is believed, provokes the desire to die. Patients eligible for assisted suicide have a medical condition that is incurable. This condition is understood to provoke suffering. Because this suffering originates in an incurable medical condition, it too is surmised to be incurable. Thus, in physician assisted, the individual’s desire to die comes in response to incurable suffering. The choice before them is one between a life of incurable suffering and a quick and relatively painless death (Beauchamp, 1995).
In response to such a choice, suicidal ideation is not necessarily considered to be pathological. Rather, it can be rational, because it is rational to choose the absence of suffering – even via death – over its ineradicable presence (Werth, 1996). As a result, incurably ill individuals who petition for assisted suicide are not considered mentally ill. They are considered sane. As sane individuals, they are competent to make a medical decision, including, in this case, the medical decision to die (Ganzini, Leong, Fenn, Silva, & Weinstock, 2000). Consequently, physicians could take part in without compromising their professional obligations to the mentally ill. This legitimization of suicidal ideation on the basis of incurable medical suffering forms the underlying rationale for assisted suicide.
This legitimization of suicidal ideation has reached such an extent that supporters of PAS no longer refer to it as “suicide.” Instead, they prefer the term “aid-in-dying” or “assisted death” (Neumann, 2016, p. 244). The reasons for such changes are in part due to political expediency: Polls show that PAS garners significantly more public support when it is not referred to as “suicide” (Saad, 2013). But, beyond such political motivations, there are ideologically coherent reasons why supporters of “PAS” reject that term.
PAS supporters argue that individuals petitioning for PAS are not, in fact, suicidal because they are already dying (Neumann, 2016, p. 244). As such, they are not choosing to die. They have no choice in that matter. What they are deciding is how they will die. It is thus incorrect to describe them as “suicidal,” since suicidal individuals would, otherwise, live. Rather, they are dying individuals asking for “aid” or “assistance” in their deaths. Thus, in reality, individuals who receive “aid-in-dying” are not causing their own deaths, in spite of their taking life-ending medication. Their death is caused by their incurable medical condition (Saad, 2013). As such, deaths from PAS are not considered suicides, but rather “natural deaths.”
In spite of such arguments, in this article, I will use the term “PAS.” PAS remains the most neutral term to describe the practice. Using this term, it is still possible for PAS supporters to distinguish the “rational” suicidal ideation of an incurably ill individual from other forms of “irrational” suicidal ideation (Werth, 1996). Indeed, the majority of arguments for “PAS” have explicitly referred to it as “suicide” (see, e.g., Battin, Rhodes, & Silvers, 1998; Dworkin, Frey, & Bok, 1998). At the same time, utilizing “aid-in-dying” neutralizes the arguments of opponents of PAS, who often begin their arguments from the premise that PAS is a form of suicide (Neumann, 2016, p. 244; Saad, 2013). As my intention in this article is not to take sides in this debate, but rather to resituate this debate in the broader context of the disability rights movement, the most ideologically neutral term is appropriate.
PAS exists in relationship to two other medical interventions that end a person’s life in response to incurable illness or disability: voluntary active euthanasia (VAE) and the removal of life-sustaining treatment (or “voluntary passive euthanasia”) (Drane, 1995). In VAE, the medical professional directly administers a life-ending substance to the incurably ill individual who has given consent. In the removal of life-sustaining treatment, the medical professional removes the patient from medical technology that was maintaining them alive (Gostin, 1993). Together, VAE, PAS, and the removal of life-sustaining treatment form a spectrum of options for individuals who wish to end their lives in response to incurable illness.
What defines this spectrum is the degree to which medical providers are involved in the administration of death. VAE is on the extreme end of this spectrum because of the role of such providers in directly causing the patient’s death. The removal of life-sustaining treatment is on the most conservative end of this spectrum because, in it, the cause of death is not considered to be the medical provider, but rather the underlying disease entity. PAS occupies a midway point between these options: the medical provider prescribes a life-ending medication to the sick and/or disabled individual, but the individual administers it him or herself (Brody, 1993).
This spectrum has been contested (Rachels, 1975; Singer, 1996). Nevertheless, it is also widely accepted in literature on end-of-life decision-making and forms a rough basis for existing debates about the legalization of PAS in various countries, including the debate that has occurred among disability rights advocates in the United States. I will now examine this debate.
The Debate Among Us Disability Rights Advocates
In the United States, disability rights activists have come out both in favor of and in opposition to PAS. Yet, such disagreements are based on a fundamental agreement. Both disability rights supporters and opponents of PAS agree that a chief goal of disability rights is to promote autonomy of disabled persons (Bagenstos, 2014, pp. 95–115). But they disagree on whether PAS furthers the realization of this goal. This disagreement hinges on two different interpretations of the relationship between chronic disability and terminal illness. Understanding why this is the case involves considering the specific nature of PAS legislation in the United States.
In the United States, there is no PAS for the chronically disabled. Instead, the practice has been restricted to the terminally ill, a group defined as individuals who carry a prognosis of six months or less to live (Chin, Hedberg, Higginson, & Fleming, 1999). Theoretically, the practice could be broadened to include the chronically disabled: The US Supreme Court has left decisions regarding PAS up to individual states, and such states have authority in delegating its limits (Chemerinsky, 2006, pp. 847–854). But US right to die groups have denied that this is their intention. Rather, they insist that they only advocate PAS for the terminally ill. For this reason, they argue that disability discrimination is largely irrelevant to the practice of PAS in the United States (Neumann, 2016, pp. 135–162).
But the claim that the “right to die” in the United States does not involve disability discrimination has been rejected by many prominent disability rights advocates (Francis & Silvers, 2015; Gill, 1998, 2010; Ouellette, 2014). This rejection is based on both an assessment of current PAS laws and a prediction regarding the future laws that these current laws may lead to. Though their analysis does distinguish between terminal illness and chronic disability, it is based on the claim that the same analytical model can be used for understanding the roots of suffering in both populations.
Disability rights advocates who oppose PAS do not dispute that disabled people suffer. But they contest the idea that suffering is inherent to disability. Rather, they consider the suffering of disabled populations to be due not to the biology of disability, but rather the society in which the disabled live (Shakespeare, 2013). This society both currently and historically has been organized to exclude the disabled. This exclusion has taken various forms – cultural, political, economic, and medical – and it is a form of discrimination that disability rights advocates refer to as ableism (Campbell, 2009). Thus, the root of the suffering of disabled people is not their disability but disability discrimination.
This account of the social origins of the suffering experienced by the disabled challenges the claims of PAS advocates. PAS advocacy is based on the underlying premise that the suffering experienced by those who petition for PAS is a result of an incurable medical condition – and thus itself incurable. But disability rights advocates argue that this suffering is not based on the incurable medical condition, but rather on disability discrimination. As this suffering is the stated reason why individuals seek PAS, the root cause of suicidal ideation among the incurably ill is disability discrimination (Gill, 1998, 2010; Longmore, 2005).
This root cause fundamentally changes the nature of the individual’s desire to die. A decision based on disability discrimination is not autonomous. It not a product of the individual’s own self-control, but rather of society’s control over them. This control is evident in the epistemological assumptions underpinning PAS: The legitimacy of PAS is based on obscuring the social origins of the individual’s desire to die (Gill, 1996, 2010; Longmore, 2005). As such, individuals who seek PAS are not giving truly informed consent.
But even if they did understand the social roots of their suicidal ideation and continued to seek PAS, they would not be autonomous. For example, Paul Longmore has argued that, even though quadriplegic David Rivlin recognized that his desire to die was rooted in his disability discrimination (Longmore, 2005, p. 41), his desire should not be honored. A desire to die in the face of overwhelming social pressure may be understandable, but it is not an expression of individual autonomy. Rather, it is a recognition that the autonomy of disabled individuals is extremely limited by disability discrimination. By cloaking such discrimination as a putatively emancipatory “right to die,” PAS works against disability rights.
Disability rights advocates have, in general, made this argument against PAS for the chronically disabled. Nevertheless, they have argued that it also applies to PAS for the terminally ill (Ackerman, 1998; Braswell, 2011; Gill, 2010). In part, this argument is based on an prediction of the future: anti-PAS disability advocates argue that though US “right to die” groups claim to only support PAS for the terminally ill, in reality, they are using this more limited PAS only to build the political capital necessary for the passage of PAS for the chronically disabled. But it is also based on existing PAS practices. Disability studies scholars have noted that in Oregon, for example, among the leading stated reasons why individuals pursue PAS are fears of the loss of autonomy and of being a burden (Coleman, 2010). Such fears arguably have more to do with disability than with terminal illness. As a result, disability discrimination is at the root of PAS even for the terminally ill.
But this conflation of chronic disability and terminal illness has been rejected by disability rights advocates for the “right to die.” These advocates argue that terminal illness generally involves much more significant physical symptoms than chronic disability: for example, extreme physical pain, coupled with a rapid escalation of debilitating medical conditions (Batavia, 1997; Neumann, 2016). These pro-PAS advocates do not deny that terminal illness provokes both disability and fears of disability. But they argue that the shortened lifespan of the terminally ill leaves them with insufficient time to change their negative views about disability (Davis, 2013). To ban PAS in such cases is to condemn these individuals to a suffering that, though social in part, is functionally incurable. To ignore such distinctions is to fail to acknowledge the specific needs of the terminally ill.
It is also a failure to acknowledge the safeguards against disability discrimination that have been included in US “right to die” legislation. The distinction between chronic disability and terminal illness is one such safeguard: There is no evidence, since the passage of the Oregon “Death with Dignity” Act, of PAS being extended to the chronically disabled (Davis, 2013). For those terminally ill individuals who are eligible for PAS, there are procedures to ensure that the individual is of sound mind and is not making a decision out of familial manipulation (Davis, 2013). Finally, because the terminally ill patient must take the fatal substance him or herself, PAS itself protects individuals from being put to death against their will. Such safeguards are, for disability rights supporters of PAS, sufficient to ensure that the practice is not a manifestation of disability discrimination (Davis, 2013).
Because of the existence of such safeguards, disability rights advocates for PAS argue that the act is a genuine reflection of patient autonomy. The decisions made by terminally ill people to end their lives may take place in a context of disability discrimination. But this discrimination is not sufficient, given the safeguards in place, to nullify their autonomy. Thus, disability rights opponents of PAS are going against a central tenet of disability rights: that disabled people should have control over their own medical decisions (Batavia, 1996; Davis, 2013). This is bad in itself, but it also risks provoking a “slippery slope” in which even chronically disabled individuals might lose decisional autonomy over basic medical decisions, such as the right to remove life-sustaining treatment (Davis, 2013). Thus, for disability rights proponents of PAS, those disability advocates who oppose the practice are themselves going against the disability rights movement.
Thus, within the current framework of debate, both supporters and opponents of PAS for the terminally ill claim to be representing the fundamental ideals of disability rights. And yet, in the section that follows, I will argue that both sides in the debate lack a piece of evidence that is necessary to support their positions.
Toward a Disability Rights Approach to Terminal Illness
Disability rights opponents of assisted suicide claim that PAS for the terminally ill is a form of discrimination against the disabled. Disability rights supporters of assisted suicide argue that it is not. The result is a debate that hinges on the question of whether chronic disability and terminal illness are analogous entities. And yet, this raises a question: Based on what evidence have disability rights scholars analyzed the relationship between chronic disability and terminal illness?
In general, they have based their assessment of this question on information pertaining to the practice of PAS itself. This is understandable. After all, the principle interest that these disability rights advocates have in terminal illness is in its relevance to the topic of PAS. And information pertaining to this topic is, to be sure, relevant to the question of the relationship between disability and terminal illness: For example, the fears that patients in Oregon have expressed fears about burdening family members and losing of autonomy are all relevant data in understanding the relationship between disability and terminal illness (Coleman, 2010).
But such data pertaining to PAS, while relevant, is not sufficient from a disability rights perspective. Such a perspective would not be individualistic, but rather social, in recognition that the disabled are subject to social discrimination. It would examine the larger network of social, medical, economic, cultural, and political institutions in which the terminally ill live. It must consider the extent to which these institutions discriminate against the terminally ill and what measures can be taken to alleviate their discrimination. In other words, prior to theorizing the relationship between chronic disability and terminal illness, it is first necessary to develop a “social model” of terminal illness, and then examine how this model is similar to – or different from – the social model that is the basis of disability rights (Braswell, 2011).
The development of such a “social model” of terminal illness is essential for developing a disability rights perspective on PAS. And yet, a disability rights approach to terminal illness goes far beyond the issue of the right to die.
Such an approach should not begin with any particular issue. Rather, it should begin with the social institutions charged with caring for the terminally ill. This starting point is modeled on the disability rights approach to chronic disability: Disability rights advocates do not base the “social model” of disability on any one issue. Rather, they base it on an analysis of the organization of society. They subsequently apply this analysis to particular issues – such as PAS – but the starting point is the social organization of disability itself (see, e.g., Longmore, 2005).
Consequently, a disability rights account of terminal illness must begin with the social organization of terminal illness. In what follows in this article, I will begin such a task through a study of the dominant form of end-of-life care in the United States: hospice. By tracing the structure of US hospice care, as well as its impact on dying patients, I will be able to develop a disability rights account of terminal illness. This account will then provide a basis for my assessment of the “right to die.”
The Structure of US Hospice Care
The structure of US hospice care has been largely determined by the 1983 Medicare Hospice Benefit (Lukashok, 1990; Paradis & Cummings, 1986; Siebold, 1992). The Benefit defines hospice as a form of treatment for patients who are “terminally ill.” “Terminal illness,” in this context, means that hospice patients have a medical condition that carries a prognosis of six months or less to live. To qualify for hospice, such patients must cease “curative” treatments, such as chemotherapy; in contrast to these treatments, hospice is “palliative” in that, rather than eliminating terminal illness, it seeks to comfort the patient as he or she dies. It does so via an “interdisciplinary” treatment methodology oriented toward attending to the patient’s medical, psycho-social, and spiritual needs. To meet these needs, hospice teams are made up of a range of clinical professionals, including doctors, nurses, social workers, and chaplains. The Medicare Hospice Benefit thus defines hospice as an interdisciplinary form of palliative care for patients with terminal illnesses.
According to the Benefit, this form of care should in general, be delivered to patients in a particular site: the home. The Benefit mandates that of the care received by any particular patient, 80% has to be outpatient care, carried out at home, while only 20% can be inpatient care housed in a hospice institution (Lukashok, 1990, p. 732). As a result of the Benefit, only one in five US hospices currently have inpatient facilities (National Hospice and Palliative Care, 2012). These inpatient facilities, in turn, only provide short-term care (Office of Inspector General, 2013). The Medicare Hospice Benefit thus made home care almost mandatory aspect of hospice, even if patients might prefer to receive inpatient care.
This placement of hospice in the home is significant because of the way the Medicare Hospice Benefit conceives of “interdisciplinary” care. In the Benefit’s structure, such care does not include “long-term care,” which assists patients with activities of daily living such as bathing, clothing, feeding, and daily hygienic maintenance. It also does not include sitter services that might monitor the patient daily and nightly to ensure that he or she is safe. The Benefit only allows for such 24-hour care in the case of an emergency; while it allows for certified nurse assistant (CNA) services to assist patients with activities of daily living, as well as volunteer care for companionship, it limits such services to a part-time basis (Conditions of Participation for Hospice Care, 2010). In this sense, the Benefit’s combined emergency care, CNA visits, and volunteer services do not amount to comprehensive long-term care.
By excluding long-term care while situating hospice care in the home, the Medicare Hospice Benefit implicitly requires that the terminally ill patient’s long-term care needs be met by their local kinship network – or, more colloquially, their “family” (Brown, 2004). This network is responsible for the patient’s care throughout the day – attending to his or her feeding, cleaning, and safety; by caring for such needs it provides the crucial context in which hospice care be delivered. In this sense, the Medicare Hospice Benefit does not aim to supplant the kinship network, but rather to support it via the provision of interdisciplinary end-of-life care. The federal regulation of hospice thus depends on the work of an unpaid kinship network providing long-term care in the private sphere.
I examined the implications of this kinship structure over the course of seven months of fieldwork at Amberview Hospice, an Atlanta branch of a major national hospice organization. This fieldwork included observation of patient care, attendance at hospice team meetings, and interviews with hospice staff, patients, and families. Through this fieldwork, I found that, when a sufficient kinship network existed, the Benefit functioned well. But the Benefit’s structure created routine problems on patients who lacked sufficient kinship support. I will now examine the factors that impede the delivery of care to patients without kinship support.
Obstacles to Kinship Care for the Terminally Ill
Caring for a terminally ill person is a demanding task. Such care will, by necessity, depend on the nature and severity of the terminally ill person’s condition. For example, a person with chronic obstructive pulmonary disease (COPD) may have significant difficulties in transporting him or herself to the bathroom, while an individual with dementia may be able to move to the bathroom, but unable to recognize the need to perform routine activities of self-care. Due to the nature of hospice as a modality of end-of-life care, most hospice patients have extremely significant conditions that limit their ability to perform basic activities of daily living, as well as to maintain compliance with their medications.
Such difficulties are complicated by the presence of co-morbid conditions among terminally ill patients. These co-morbidities could be life-long conditions that, though not immediately related to a patient’s terminal diagnosis, could significantly complicate it: For example, a patient with pancreatic cancer whose mobility is significantly reduced as a result of a lower extremity amputation dating to the Vietnam War. Such co-morbidities can also be related to mental health: The ability of an individual with Parkinson’s disease to take his medications may be adversely impacted by the chronic depression that he has experienced on and off for the past 10 years. The presence of such co-morbidities in hospice patients at Amberview provided the justification for a saying that was used by several different staff members over the course of team meetings: “The end-of-life does not begin at the end-of-life.”
This adage applied not only to the presence of co-morbidities among patients, but also illnesses and disabilities in their familial caretakers. While Amberview staff did not treat such conditions, they had a direct – and potentially devastating – impact on the provision of hospice care. For example, a woman was unable to provide her terminally ill husband with consistent care because she herself had breast cancer; as a result, she was absent from the home while receiving treatment and, even while at home, was often too tired to sufficiently carry out the physically grueling labor of caring for his needs. In another case, an elderly man with a heart condition and lower back problems could not perform the daily labor of assisting his wife into a wheelchair that was necessary for her to move. In this case, neither his wife’s wheelchair use, nor the man’s own coronary and lumbar problems would be classified as “terminal” conditions, but both colluded to impede the delivery of end-of-life care.
In addition to such diagnosed conditions, dysfunctional family dynamics also hindered the provision of Amberview’s hospice care: In one team meeting, hospice staff discussed a patient whose wife was routinely forgetting to give him his pain medication. The patient care manager (PCM) claimed that such “forgetting” was a manifestation of the aggression that the wife felt for her husband, whom the PCM characterized as “a guy who was probably very controlling, and dominating to [the wife] earlier in life.” Whether it was conscious or unconscious, the wife’s noncompliance was thus a form of “payback” for her husband’s treatment of her. While I could not observe patient care in this case specifically, the PCM’s scenario provides an example of how dysfunctional family dynamics subvert the provision of hospice care. In such cases, the hospice’s interdisciplinary team must attempt to either address these noxious familial relations before they actively harm the patient or have the patient removed from the home.
While many co-morbidities are unrelated to the end-of-life, terminal disease itself is a prolific generator of co-morbid conditions. At Amberview, nearly every patient had, in addition to the terminal diagnosis necessary to admit them, a series of co-morbid conditions most likely related to this disease. One man, for example, had been admitted to hospice for “failure to thrive,” but also had significant recent hearing loss; an 87-year-old woman with dementia had significant lower extremity bruising as a result of a fall that occurred in her own house. In addition to such disease-related accidents, terminal conditions like cancer, COPD, and dementia, though often localized in a particular region of the body, have effects that impinge on the body’s ability to function as a whole. The disabling nature of such conditions makes it difficult for hospice patients to care for themselves, while also complicating their kinship network’s capacity to attend to them.
Moreover, the rapidly escalating nature of such conditions may outpace the means or the ability of the terminally ill individual to make his or her house accessible. A person who becomes unable to walk over a matter of weeks may thus be trapped in a house filled with stairs. Compounding these problems with accessibility internal to an individual’s own environment are problems particular to the metro-Atlanta region itself. The City of Atlanta is geographically very spread out (Bullard, Johnson, & Torres, 2000). Its public transportation network, MARTA, though itself relatively accessible to persons with disabilities, has limited coverage. As a result of this lack of accessible transportation and diffuse arrangement of urban space, it was extremely difficult for Amberview’s patients – who, in general, were too disabled to drive themselves – to leave their house to attain basic necessities.
As a result of their rapidly escalating terminal conditions, coupled with the lack of accessible housing and transportation, terminally ill patients at Amberview generally required intensive care. This care had an important medical dimension, in that these patients may require round-the-clock pain control, as well as treatment for neurological conditions like dementia, as well as psychological anxiety. But in order to be successful, this medical treatment had to occur in a context that was responsive to activities of daily living. While Amberview could provide assistance with such activities on a part-time basis, it would not reimburse daily assistance nor would it pay for patients to have a sitter. Without assistance from Medicare, the high cost of home health care designed to care for such activities – approximately $300 a day in Atlanta – was prohibitive for most Amberview patients, who were generally individuals of middle or lower socio-economic status. As a result, most Amberview patients had to depend on their family members for full-time care that included companionship as well as assistance with activities of daily living.
In my fieldwork, I observed several obstacles to the provision of such kinship care. First, many patients lacked family members who lived in sufficient proximity to provide them with routine care. Second, even if such family members were present, the emotional dynamics of familial relationships often impeded the provision of care. Caretakers who were – for either valid or invalid reasons – upset at their terminally ill relatives were reluctant to provide him or her with necessary care. Third, even if caretakers were committed to providing care, they might be economically unable to do so. If a caretaker needs to work a full-time job, for example, they may leave their terminally ill relative at home in a potentially precarious position. Finally, even if a person had sufficient economic resources so that they could provide care themselves – or even hire a full-time sitter – the progressive nature of terminal illness placed significant strains on the mental, emotional, and physical resources of even the most dedicated caretakers.
Consequently, there are substantial obstacles to sufficient kinship care for the terminally ill. These obstacles, in part, are inherent to the demanding nature of terminal illness. But they are also embedded in US society: in the lack of social support for familial caregivers, as well as the obstacles, in the built environment, to the terminally ill being able to care, to a greater extent, for themselves. These obstacles lead to the proliferation, within hospice, of patients without sufficient kinship support: for example, at Amberview, every team meeting feature between three and seven patients, who lacked adequate support from their caregivers – or who had no caregivers at all. But, in spite of these obstacles, the US hospice system leaves patients without kinship support with limited options.
Patients Without Kinship Support in the US Hospice System
There are two pathways available to patients who lack the kinship support necessary to sustain hospice care. One pathway is that patients remain at home. If hospice patients remain at home, they must attempt to live without regular long-term care. While they may initially be able to live without such support, as they become progressively more disabled, they will encounter increasing difficulties in the home. These difficulties can exist in both preparing and procuring food for themselves; in basic daily hygiene; and in mobility within houses and communities that become increasingly inaccessibly over time. These difficulties actively subvert the delivery of hospice care. Patients can remain in states in which they are unable to comply with their medication regimen, or in locations that are dangerous to both them and their hospice providers. The lack of long-term care in the hospice system can thus significantly limit the effectiveness of hospice.
If a patient’s situation has deteriorated to such an extent that home care is no longer sustainable, patients may be sent to nursing homes. Nursing homes are facilities that specialize in providing the kind of long-term care that, within the hospice system, is theoretically provided by the kinship network. Nursing homes do not, however, provide hospice care. Consequently, hospice patients in nursing homes continue to receive care from a hospice on an outpatient basis. The provision of hospice services in the nursing home setting is the second pathway available to patients without kinship support.
But there are significant problems with the coordination of nursing home and hospice care. Within Medicare, hospices are incentivized to remove patients from life-sustaining treatments. Nursing homes, in contrast, are reimbursed by Medicare for maintaining patients on such treatments. There is thus an economic conflict between hospices and nursing homes. This economic conflict produces an environment of mistrust. Hospice providers whom I interviewed complained that nursing homes gave terminally ill patients unnecessary treatments in order to increase their revenues. Nursing home providers, meanwhile, suspected hospices of giving up on patients. This mistrust leads to failure in the delivery of both hospice and nursing home care (Aragon et al., 2012).
As a result, there is no true “home” in the US hospice system for patients who lack kinship support. Abandoned in their own home, or sent to nursing homes unequipped for end-of-life care, hospice patients without kinship support receive deficient care wherever they turn. This treatment of the relatively kinless terminally ill raises concerns about the status of US end-of-life care. But what is the relationship of these concerns to disability rights?
A Disability Rights Approach to US End-of-Life Care
Disability rights advocates are not wrong to distinguish chronic disability from terminal illness. Chronic disability, though potentially degenerative, often entails extensive periods of stability. Terminal illness is, in contrast, often rapidly degenerative. Chronic disability does not necessarily include physical pain; terminal illness almost always does. Chronically disabled individuals can – and ideally should – be able to engage in paid labor; such work is often not feasible for the terminally ill. While both chronic disability and terminal illness involve disabilities, the disabilities associated with terminal disease processes often appear quickly, and multiply before the terminally ill individual has time to grow accustomed. Chronic disability does not necessarily involve an engagement with one’s own mortality – and with pondering the world one leaves behind – while such an engagement is arguably intrinsic to the process of being classified as “dying.” Terminal illness is thus different from chronic disability in significant ways.
But these distinctions should not occlude the commonalities between the two conditions. Both the terminally ill and the chronically disabled generally prefer to live in their own homes (Crewe & Zola, 2001; Fischer, Min, Cervantes, & Kutner, 2013) and suffer from similar obstacles in doing so. Such obstacles include the lack of familial support, long-term care, accessible environments, and general financial and social resources. When both groups cannot remain at home, they are generally sent to nursing homes. Disability rights advocates have long contended that nursing homes placement for the chronically disabled is a form of institutionalized discrimination. But nursing homes are arguably even less appropriate for the terminally ill. They are not designed for this population and, because of Medicare incentive structures, frequently thwart attempts to have the appropriate care delivered (Aragon et al., 2012). Thus, the chronically disabled and the terminally ill both suffer from a medical and social service system that segregates them in strikingly similar ways.
Consequently, while terminal illness and chronic disability are distinct, both can be analyzed through a disability rights framework. Such a conclusion would seem to support the arguments of disability rights opponents of PAS, who argue that terminally ill individuals who petition for suicide do so out of disability discrimination. But, while this can be true, the relationship between the “right to die” and disability rights account of terminal illness is more complicated than such an analysis suggests.
Why a “Social Model” of Terminal Illness Should Inform – But Cannot Resolve – the Question of the “Right to Die”
As I described above, the debate, within disability rights, about PAS has hinged on the question of how the existing organization of end-of-life care impacts the decisions of terminally ill individuals to die via PAS.
This article provides evidence to consider when contemplating this question. The dependence of US hospice care on existing networks of familial caregiving is relevant to the reasons why individuals in states where PAS is legal – most notably Oregon – choose to end their lives. Indeed, in 2014, 40% of Oregonians who petitioned for PAS mentioned a fear of burdening family members, friends, and caregivers as a motivating factor in their desire to die (Oregon Public Health Division, 2014). Such a fear is a product of the way that our end-of-life care system is organized. Terminally ill individuals will feel like burdens on their families in a system that places the burden of their care on their families. Where PAS is legal, individuals who do not want to burden their families may seek out the practice.
A desire to die in such circumstances is understandable, but troubling. If suicidal ideation is, in such cases, partially a product of the organization of US end-of-life care, then it could be alleviated by improvements in the end-of-life care system. PAS may assist the suffering of these particular terminally ill individuals. But it leaves in place the underlying social structures that, in part, produced their suffering to begin with. It is therefore suspect from a disability rights perspective.
But a disability rights critique of these particular instances of PAS need not lead to an argument in favor of banning PAS. Even if all deaths from PAS could be traced, in a sense, to the organization of US end-of-life care that would not in itself be sufficient to ban the practice. All desire is socially mediated and to the extent that ableist social structures exist, they may well influence decision making among both the disabled and the terminally ill. But that is not necessarily a reason to paternalistically overrule the autonomy of these populations. Indeed, it is possible to advocate for the rights of terminally ill individuals to end their lives with medical assistance and for social policies that will decrease their desire to do so.
Such a position has been a feature of disability rights engagement with the topic of selective abortion. Disability rights advocates have argued that the screening and routine abortion of fetuses with disabilities is a form of anti-disability discrimination. Nevertheless, they have also resisted calls to ban selective abortion. Instead, they advocate resisting selective abortion through initiatives that incentivize parents to bring disabled fetuses to term, but do not force them to do so. One could disagree with this position. But it is widely recognized as viable in disability rights (Asch, 1999). Supporting PAS, while condemning ableist end-of-life care, is an extension of this logic.
Thus, though a social model of terminal illness should influence how disability rights activists respond to the issue of PAS, it does not necessarily determine this response. Therefore, the debate among disability rights activists persists. In what follows, I will argue that the persistence of this debate is not bad in itself; rather, it is only bad to the extent that it obscures the significant underlying consensus among disability rights activists about how to approach the end of life.
The Agreement Underneath the Disagreement
Disability rights groups should continue to debate the issue of the right to die. And, as further research on US end-of-life care becomes available, advocates on both sides of the issue should modify their positions accordingly. But it is unlikely that information will become available that will lead to a cessation of debate. The “right to die,” like arguably all ethical issues, is question of not only objective data, but also deeply held personal values. This is not to say that individuals with conflicting values cannot change their positions in response to evidence. They can and should. But such change is often more difficult to enact than proponents of a particular position are willing to accept.
My own argument regarding the social roots of suicidal ideation among some terminally ill individuals is a case in point. It is possible to draw on this argument to argue against the legalization of PAS. But, as I have shown, it is also possible to accept this evidence, while still supporting the legalization of the “right to die.” Such disagreements will hinge not solely on available evidence, but also on the deeply held values of diverse individuals: For example, one person might consider state paternalism to be inherently more harmful than coercive incentive structures in the private sphere (Batavia, 1996). Another person might disagree (Gill, 1998). But such disagreements are, to a significant extent, questions of values. Within the disability rights debate on PAS, there should be an attempt to clarify the different values of the diverse participants and to work toward consensus.
But absolute consensus is not attainable, nor should it be the goal. The disability rights movement contains individuals who have a range of values. This range is, in part, what leads to disagreements regarding PAS. These disagreements are partially resolvable: Individuals can and do change their positions based on the available information (Bicchieri & Mercier, 2014). But even when disagreements continue, they can lead to better arguments by proponents of either side of a position, as well as better conversations overall.
Indeed, I would argue that such a shift has happened in the disability rights discussion of PAS. The debate between supporters and opponents of the practice has led to the refinement and evolution of both positions. Those who are undecided can now read better pro-PAS and anti-PAS arguments. This will facilitate their making better informed decisions. Such informed decision-making is in the interest of disability rights. It is good thing that those interested in disability rights now can have access to high-quality arguments when attempting to come to their own conclusions about a topic such as the “right to die.” For this reason, even though I am personally opposed to PAS, I welcome disability rights arguments in favor of the practice, so long as such arguments are made in the spirit of enhancing further discussion.
But such debate can also bring risks. One such risk would be that the disagreement about PAS within disability rights would lead to the dissolution of the consensus that holds the US disability rights movement together: the shared belief that disabled people have civil rights and that these rights must be vigilantly protected in a US society that is still, to a significant extent, discriminatory against the disabled (Shapiro, 1994). Fortunately, there are few signs of this consensus dissolving. Disability rights supporters on both sides of the PAS debate have, aside from their activities relating to PAS, continued to advocate for disability rights in general. Thus, it is unlikely that disagreements about the “right to die” will dissolve the disability rights movement.
But they have hindered its expansion. In this article, I have argued that the state of US end-of-life care is a disability rights issue. The terminally ill experience structural barriers to access that are not only similar to those facing the chronically disabled, but, in many cases – nursing homes, public transportation, long-term care, the built environment – exactly the same. The need to eliminate such barriers to access is already, by definition, fundamentally held by all individuals who identify with the disability rights movement; indeed, if an individual does not support eliminating such barriers, then he or she effectively does not support disability rights. Thus, there should already be an effectively universal consensus, among disability rights proponents, on the need to improve US end-of-life care.
However, this consensus has gone unnoticed by these proponents themselves. Instead, the focus of the disability rights engagement with terminal illness has been the debate about the “right to die.” This debate is valuable, but it must not obscure the fundamental agreement that could exist among disability rights advocates about the need to dramatically improve the state of US end-of-life care. Indeed, such an improvement would do more to advance the goals of the disability rights movement than any foreseeable outcome on the issue of PAS in the United States.
Putting the “Right to Die” in Its Place
Though it dominates debates about end-of-life decision-making, PAS is a marginal practice, even where it is legal. In Oregon, for example, the number of deaths from PAS has remained relatively stable at 60 per year (Davis, 2013, p. 102). And there are political limits on the extent to which the practice will expand. The US Supreme Court has left the legalization of PAS up to individual states (Chemerinsky, 2006). While more liberal and libertarian states may legalize it in the coming years, more conservative states will be considerably more reluctant to do so. It is highly unlikely that PAS will become legal in all, or even a majority, of US states in the decades to come. As a result, PAS is a quantitatively marginal practice whose expansion is highly limited.
The opposite is true for US hospice care. US hospice care already impacts a significant amount of dying individuals: In 2011, 1.65 million individuals received hospice services. This number has increased dramatically in the last two decades, and will likely continue to increase dramatically in the future (Perry & Stone, 2011). This increase is, in large part, due to two related factors: the broad consensus, in the United States, that hospice is the appropriate form of care for the terminally ill, and the existence of federal regulation and funding mechanisms to support it. As a result, hospice impacts many more dying patients than PAS. And, because of the federal nature of US hospice legislation, any change to hospice regulations will have a much broader impact than changes to legislation in individual states regarding the “right to die.” Thus, US hospice care is an issue of quantitatively greater import than PAS. And any political changes to hospice will have a quantitatively great impact than those affecting PAS.
Such changes are not inconceivable. Like disability rights (Davis, 2015), in the United States, hospice has been a rare issue of broad bipartisan agreement. Indeed, the Medicare Hospice Benefit was passed under the Reagan administration (Buck, 2011). Even today, the current organization of the US hospice system leads to unnecessary hospitalizations and nursing home stays that are not cost-effective; it is thus possible to argue for reforms to the hospice system in a way that might appeal to economic conservatives. PAS, in contrast, is an extremely partisan issue in US politics (Callahan, 2005). This partisanship, when combined with the Supreme Court’s decision to leave the issue to the states, makes any sort of federal change to PAS regulations significantly more difficult to enact.
Thus, attempts to change hospice care carry a significantly higher benefit–cost ratio than those to change the legal status of PAS. This benefit–cost ratio should incentivize US disability rights advocates to channel their energies toward reforming hospice policy. But, though important, it should not be the determining factor in setting disability rights priorities.
Access has arguably been the central concern of the disability rights movement (Shapiro, 1994). This concern is relevant to PAS: For example, would further legalizing PAS represent an expansion of access, in that it grant individuals access to a procedure that enhances their autonomy (Batavia, 1996)? Or, alternatively, does it represent a denial of access to basic suicide prevention (Ackerman, 1998; Gill, 1998)? But, though relevant to PAS, the issue of access is much more central to the provision of hospice services. Individuals in hospice without sufficient kinship support lack access to basic social resources, including medicine, socialization, and potentially even food. The denial of access is more central – and less debatable – in hospice than in the “right to die.” Thus, changing the structure of US hospice care is, from a disability rights perspective, a qualitatively more important issue
This qualitative argument is strengthened when one considers that the benefit–cost ratio of pursuing political action regarding PAS is significantly lower than that of pursuing such action regarding hospice. The issue of PAS is and should remain an important issue in disability rights. But it is an issue of secondary import. With regard to the end of life, a more primary issue is the barriers to accessibility inherent in the current structure of US hospice care.
Thus, it is necessary to put the “right to die” in its place. PAS should continue to be debated by disability advocates. But a more important issue is the lack of access for the terminally ill. This topic is not a question for debate: Promoting access for the terminally ill is ideologically consistent with and should be considered central to disability rights. Furthermore, doing so will lead to greater political benefits, with less cost than attempting to either ban or legalize the “right to die.” Disability rights advocates should thus shift their priorities, at the end of life, from the issue of PAS to that of improving US hospice care.
I will conclude by examining how the disability rights movement can achieve this goal within the broader debate, in the United States, about the legalization of PAS.
A National Disability Rights Agenda for the “Right to Die”
The United States is currently in the midst of a longstanding national conversation about PAS (Dowbiggin, 2002). This conversation has, on a national level, largely played out between two groups: conservatives who oppose PAS on the grounds that it violates the sanctity of life and liberals who support it on the basis of personal choice (Callahan, 2005). Neither of these positions entails a systemic consideration of disability discrimination either in general or at the end of life. As a result, neither position, in itself, is satisfactory from a disability rights perspective.
The limitations of both of these positions have been acknowledged by commentators within disability rights. In response to them, these commentators have crafted arguments explaining how particular form of PAS advocacy differs from that of national PAS advocacy organizations. Thus, disability rights advocates for PAS explain how they would prefer more safeguards on the practice (Davis, 2013), while opponents do not claim to hold the “right to life” views animating much opposition to PAS in the United States. These arguments are valuable, but their impact on a national scale has been limited by the minority status of disability rights advocates within larger political constituencies.
Such limitations will persist so long as disability rights advocates primarily approach PAS through the strategy of “taking a position” on the issue. Though it is important for disability rights advocates have a personal opinion on PAS, publicly, there are not enough disability rights advocates for their concerns on the issue to resonate within the dominant political alignments in the United States. Thus, when disability rights advocates attempt to “take a position” on PAS, their concern with disability discrimination gets subsumed within conservative and liberal majorities that are relatively indifferent. Though not total, this marginalization of disability rights within both “right to die” constituencies marks an inherent limit on the effectiveness of disability rights advocacy at the end of life.
As a result, it is necessary to change the terms of the national discussion of the “right to die.” The manner for disability rights advocates to do so is not by choosing a side in this debate, but by leveraging both sides so that they come to support what, I have argued, is the primary goal of a disability rights approach to the end of life: improving the quality of US end-of-life care. The manner in which disability rights advocates can accomplish this is by convincing both sides in the debate that improving the quality of US end-of-life care advances their own position on PAS.
This task can be accomplished without compromising the intellectual integrity of the disability rights position. Proponents of PAS would support an extension of end-of-life care under the pretense that it would better ensure the safety and validity of PAS. Opponents of PAS would support it under the pretense that better end-of-life care will discourage individuals from seeking PAS. Both conclusions are true: Better end-of-life care would make PAS more limited and more ethically defensible. As such, both sides in the debate have an interest in the improvement of US end-of-life care.
Thus, by shifting their own engagement with the “right to die,” disability advocates can have a significantly greater impact on the broader national conversation about the topic. This impact would counteract the demographic marginalization of disability rights advocates. Rather than attempting to change the interests of either liberals or conservatives, they would attempt to leverage these interests in the service of the ends of the disability rights movement. The end result will be politically feasible for disability rights advocates, while building on what, I am arguing, should be the consensus within the movement regarding the expansion of end-of-life care.
Thus, by “putting the ‘right to die’ in its place,” disability rights advocates will be able to have a more significant impact on the national conversation, in the United States, about the right to die. This impact will, to some extent, alleviate the concerns of both disability rights supporters of PAS, as well as their opponents. But, more importantly, it can result in a tangible benefit for millions of dying Americans. “Putting the ‘right to die’ in its place” will not resolve either the national right to die debate or even the debate within disability rights. But, by accepting that such a resolution is both unlikely and of secondary importance, there is much positive good that we can accomplish.
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