May 2, 2018 - 08:33
There are inherent connections between disease and disability. These connections lead many individuals to associate a lack of health with disability due to the nature of certain diseases to produce disability. However, most people in the disability community do not want to be considered ill and most people who suffer from chronic diseases do not want to be considered disabled (“Disability: Health, Well-Being, and Personal Relationships”). In considering issues of disability in relation to medicine, it is important to understand the ways in which society defines disability in the context of health.
When deciding to utilize CRISPR or another reproductive technology to eliminate disability, individuals are faced with a decision that is influenced by their understanding of disability. When consenting individuals with intellectual disabilities, healthcare professionals often make assumptions about this population that reduce patient autonomy. Likewise, when making decisions regarding physician-assisted suicide, people may feel pressured to end their life if they feel that disability creates a life not worth living. As issues concerning disability become more common as medical technology continues to advance, we need to address the ways in which our understanding of disability influences our medical decision-making.
Disability and Informed Consent
In the context of disability, issues with the societal and medical definition of health often come into question in cases of informed consent of individuals with intellectual disabilities. In medicine, medical professionals require permission in order to perform a procedure or treatment. However, in some situations, an individual may be unable to or deemed unable to make decisions regarding their care. In these situations, medical professionals and the disability community often disagree on the process that should be involved in healthcare decision-making. Though issues regarding the consent of intellectually disabled and the consent of healthy individuals to eliminate disability through medicine may seem like polar opposites, they both converge on the idea of what type of boundaries need to be instituted in regards to an individual’s choice of care.
Law declares that every adult is deemed capable of giving consent to medical treatment (Keywood and Flynn). However, any adult that is unable to understand the information about the treatment in question or unable to understand the impact of the treatment they are receiving may be deemed unfit to make decisions regarding their healthcare (Keywood and Flynn). Healthcare related decisions regarding these individuals are then referred to relatives and paid caregivers (Keywood and Flynn).
Deeming an individual unable to make their own care decisions is often controversial as many healthcare providers have negative attitudes toward people with intellectual disabilities (Keywood and Flynn). These attitudes can often produce prejudicial effects as healthcare provides pressure intellectually disabled individuals to turn over their healthcare decisions. This raises the question: what decision making model best serves adults with intellectual disabilities in a medical setting? (“Healthcare Treatment Decision-Making Guidelines for Adults with Developmental Disabilities”).
Depending on the degree of disability, some intellectually disabled individuals can participate in some capacity in making decisions regarding their medical treatment. Though surrogates are often used to help advocate for the disabled person’s rights, they do not have absolute authority in decision-making (“Healthcare Treatment Decision-Making Guidelines for Adults with Developmental Disabilities”). Thus, it is important that individuals with intellectual disabilities are encouraged to express their feelings or ideas through talking, writing, or drawing in order to gage their thoughts on the situation regardless of their competency to make a decision in the given context (“Healthcare Treatment Decision-Making Guidelines for Adults with Developmental Disabilities”).
The fact that intellectually disabled individuals are often not able to communicate their preferences in the context of healthcare decisions may contribute to the poorer health of disabled individuals in comparison to the rest of the population (Ervin et al.). These health care disparities take the form of higher rates of preventable mortality, co-morbidities, and chronic conditions as well as less access to preventative care (Ervin et al.). The poor outcomes are often the result of a lack of understanding, recognizing, and communicating problems with medical professionals (Ervin et al.). In addition, there are often many barriers that disabled individuals must overcome including issues of access as well as attitudinal barriers (Ervin et al.). These healthcare disparities emphasize the importance of educating medical providers in how to handle patients with intellectual disabilities, since these issues may in part be due to the absence of a required formal education in disability for medical professions (Ervin et al.). Currently, there is no accreditation-required curriculum in intellectual disabilities for medical school graduates (Ervin et al.).
These issues are compounded by the lack of research about the healthcare needs of people with intellectual disabilities (Ervin et al.). Research studies often exclude people with intellectual disabilities due to their difficulties in providing informed consent (Horner-Johnson and Bailey). However, a study found that people with disabilities are often able to provide consent. The results indicated that more than half of the study participants were able to correctly answer questions related to the study (Horner-Johnson and Bailey). Research with individuals with intellectual disabilities can help us identify the factors that underlie some of the major health issues that those individuals face including the high prevalence of obesity (Horner-Johnson and Bailey).
As mentioned before, disabled individuals are sometimes able to partake in decision making regarding medical treatment; however, health professionals are allowed to overrule the wishes of the disabled adult if it is in the best interest of the patient (Bernal). For example, this would apply in a situation where a woman may be able to choose when she takes ibuprofen to help alleviate a headache, but she may be unable to consent to laparoscopy (Bernal). Her ability to consent in one situation, but not the other may be due to the fact that it is easier to understand an immediate treatment to resolve a current symptom than to understand the need for a preventative or exploratory treatment (Bernal).
Clearly, there are many issues related to the appropriate consenting of disabled individuals in regards to their healthcare. However, the extent of legislation or rules that should be put in place to address these issues is still up for debate. Deeming an individual competent to make decisions regarding their care may vary between hospitals, between health care providers, and between situations. Thus, it is of the utmost importance that the individual is always given the means to communicate any thoughts relevant to the treatment or procedure. In addition, it is important that a surrogate is always available to communicate on behalf of the patient.
When an individual with an intellectual disability is unable to make decisions or when an individual at the end of their life is no longer capable of decision-making, two standards are applied for surrogate decision-making (Heyer). These standards are: substituted judgment and best interest (Heyer). Substituted judgment entails thinking about what the vulnerable individual would have wanted to choose in the given situation (Heyer). This can only be applied to individuals who at some point in their life were capable of informed decision-making (Heyer). For individuals who have been cognitively impaired their entire life with regards to decisional capacity, there is no basis for what the patient would have chosen in the situation (Heyer). As a result, these surrogates have to utilize the best interest standard, which requires the surrogate to make a decision that acts in the best interest of the patient (Heyer). Unfortunately, surrogates are susceptible to making judgment errors such as thinking the quality of life when living with a disability is relatively low (Heyer).
Physician-Assisted Suicide
Medical professional’s biases have the power to impact the treatment of disabled adults who are unable to consent and to impact the decision making of individuals faced with questions about the quality of life for a person living with a disability (Davis). Individuals in critical condition may consider the act of physician-assisted suicide (PAS), which has been strongly contested by the disability community (Davis). The disability community feels that physician assisted suicide is the intentional killing of a person whose life is deemed not worth living by themselves or others (Davis). This viewpoint directly contrasts with the phrase “death with dignity,” which supporters of the movement often use (Davis). The phrase suggests that disabled individuals or individuals suffering from chronic conditions are only dignified in death (Davis).
Hospital staff members often will pressure disabled individuals to sign “Do Not Resuscitate” forms as they feel that severe disability is a reason to pick physician-assisted suicide over other palliative options (Davis). For example, in 1988, a disabled woman named Sue Maynard Campbell went to the hospital for a chest infection and noticed that the doctor had written, “do not resuscitate” in her notes (Davis). The doctor had assumed that she had a low quality of life before even having a full conversation with Ms. Campbell (Davis).
Even without physician pressure, disabled individuals and other minorities are often likely to choose physician assisted suicide due to social pressures and financial constraints (Davis). Thus, many opponents of physician-assisted suicide including the disability community argue that PAS should not be an option for these vulnerable groups (Davis). They argue that these groups may feel compelled to opt for physician-assisted suicide in order to alleviate the emotional and financial burdens on their families (Davis). In addition, they feel that patients may feel pressured to elect for physician-assisted suicide by physicians who are quick to judge that the patient’s life is not worth living (Davis). However, it is not ethical to limit one patient’s right to make a choice regarding their care and ultimately their life.
Supporters of physician-assisted suicide argue that being able to determine the nature and timing of one’s death is an issue of autonomy (Davis). Based on the tenets of medical ethics, a patient has a right to make their own informed decision. By eliminating this basic right, you are impinging on an individual’s freedom of choice. Though it is unethical for physicians to persuade certain patients to opt for physician-assisted suicide, it is also unethical to eliminate an individual’s right to make a decision. Thus, the preexisting beliefs of medical professionals need to be changed rather than the rules regarding the patient’s decision.
Advocates of physician-assisted suicide often try to persuade their audience by using disability as a rhetorical tool to argue that life is not worth living when you have a disability (Davis). For example, they may argue, “Wouldn’t you rather die than have someone help you go to the bathroom?” (Davis). However, what they fail to mention is that many people with disabilities require personal assistance in many aspects of their everyday life without experiencing a reduced quality of life (Davis). Instead, they state that death is the only way to recover the autonomy that is lost with terminal illness (Davis). Thus, it is more important that we try to overturn preexisting beliefs instead of reducing the autonomy of certain patient populations.
Peter Singer has argued that disabled individuals are not “people” (Singer). Evidently, Singer is not the only individual that holds this belief. As mentioned above, a disabled life is often viewed as a life not worth living. This prevailing belief in society and the medical community has impacted countless decisions regarding medical care ranging from a disabled person’s right to consent to physician-assisted suicide to the use of reproductive technologies to the use of cochlear implants. When faced with these decisions, the lack of education regarding the quality of life to be lived by a disabled person often negatively impacts decision making in a way that compromises the disability community.
It is easy for medical professionals to acknowledge the existence of disability via prenatal or postnatal testing (Heyer). However, this assessment is not nearly as daunting as the non-medical assessment of how life with a given phenotype could go for the person living it (Heyer). As a result of preconceived notions regarding disability, there is often significant discrimination against people in vulnerable positions such as newborns with disability (Heyer). This results largely from the widely held belief that a life with a disability is full of hardship (Heyer). These issues are highlighted in many end of life decisions mentioned above in the context of physician-assisted suicide.
Due to the preconceived notions surrounding the quality of life of disabled individuals, people are more likely to consider physician-assisted suicide as a reasonable option if the person is experiencing severe, permanent disability (Heyer). This is clearly problematic to the disability community as individuals often associate the physical dependence resulting from disability with indignity, and as a result many people do not believe that individuals with disability can live a fulfilling life (Heyer). One way to overturn these notions is by adding measures of well-being to health related quality of life measures (Heyer). However, a major concern is that when these measures are applied to disabled individuals the results will be impacted by systematic bias (Heyer).
Health and Disability
Health related quality of life measures often make assumptions that disability has inherently adverse effects on well-being. This is evident in the fact that many measures ignore how an individual’s adaptations to disability can create changes that improve well-being (Heyer). These measures also do not account for issues of access (Heyer). For example, they fail to distinguish between the social and environmental factors that restrict their ability to do certain activities (Heyer). Due to these issues, health related quality of life measures often exaggerate the adverse impact of disability on an individual’s life.
Health-related quality of life measures need to be updated to reflect the social model of disability. Currently, functional limitations are impacting measures of health outcomes for disabled individuals (Heyer). The social model of disability argues that these limitations are the result of environmental limitations related to access rather than individual limitations (Heyer). Health-related quality of life measures also often make the flawed assumption that adaptations to these limitations are seen as techniques intended to recover lost ability rather than adjustments to changed circumstances (Heyer). These issues culminate to produce quality of life measures that suggest that disability and health are not mutually exclusive (Heyer).
An additional issue with health-related quality of life measures is that they are often used in priority settings for people in need of life saving interventions (Heyer). Thus, those with disabilities are often unable to gain access to life saving interventions due to the poor scores they often get on health-related quality of life measures (Heyer). The reliance on health-related quality of life measures in these situations has a detrimental effect on the type and quality of healthcare available to disabled individuals. For example, an inability to access life saving interventions may lead to an increased use of physician-assisted suicide by disabled individuals (Heyer). This utilitarian assessment of lives also creates additional stigma against disabled individuals (Heyer). This stigma results from the assumption that resources should only be allocated to certain individuals that are more likely to benefit from the intervention based on health-related quality of life measures (Heyer). However, alleviating the stigma is not as simple as acknowledging it.
Models of Disability
As the disability community urges for a transition from the medical to social model of disability, they have been confronted with many challenges. One such challenge is that both models need to be accounted for to guarantee disabled individuals have the appropriate access and rights. For example, in reforming the social model, activist need to account for the importance of health and health care while ensuring that it is evident that disabled people are not unhealthy as a result of their disability (Heyer). While doing so, they also need to highlight that health care should be provided to these individuals, but not in a way that overemphasizes correcting the impairment (Heyer).
The problem in making this distinction is that there are varying definitions of health. Though there are many different definitions, they all share the underlying theme that health is the absence of disease, deformity, or dysfunction (Heyer). Thus, anything that creates divergence from a normative health state such as disability is often viewed as unhealthy and thus undesirable (Heyer). Though disability is often viewed as a non-normative divergence from health, it does not mean that medical normalization needs to be the default response to the variation (Heyer).
The reliance on the medical model of disability often leads healthcare provides to view disability as atypical biological functioning that can and should be corrected (Heyer). However, historically, species level variation has been the driving force of the evolution, so why are these variations often viewed as undesirable? There are several factors that may be reasons why deviations from the norm is viewed as unwanted. These reasons include that variation often renders one unable to access various aspects of the environment, renders one vulnerable to discrimination, as well as renders one susceptible to additional medical complications (Heyer).
Broadening the definition of health as an aspect of well-being rather than a measure of normalcy may help to create a distinction between disease and disability. However, one limitation to this distinction is that disease and disability are often closely related such that disease can produce disability. Modern medical interventions can often prevent, stop, or reverse the disease mechanisms that produce disability. This creates a direct connection between health and disability such that disability is consistent with a person’s health (Heyer). This lack of distinction between disease and disability favors the medical model, which ultimately supports the use of medical treatments to alleviate the issues associated with disability (Heyer).
By moving to favor the social model of disability, we can more effectively modify the physical and social environment to accommodate disabled individuals (Heyer). Highlighting the difficulties created by extrinsic factors such as the social environment could demonstrate that many of the harms faced by disabled individuals result from discrimination rather than the body itself (Heyer). If society accommodated for the atypical functioning associated with disability, it is possible that society would place less emphasis on preventing or treating diseases that produce disability (Heyer).
While disease is understood as a process within the body, disability should be understood not in the context of the body rather it should be understood in the context of inaccessibility in the environment (“Disability: Health, Well-Being, and Personal Relationships”). Creating this distinction shows that disability and health are two distinct entities rather than relations (“Disability: Health, Well-Being, and Personal Relationships”). When disability and disease are presented as inseparable, it becomes extremely difficult to counter medical interventions that aim to eliminate the “unhealthy” variation (“Disability: Health, Well-Being, and Personal Relationships”). As Simi Linton writes in Claiming disability, we need to, “challenge… the notion that disability is primarily a medical category” (Linton). In doing so, we can better educate ourselves to make informed decisions when faced with health care decisions concerning disability.
Works Cited
Bernal, Jane. “Consent and People With Intellectual Disabilities: The Basics.” Intellectual Disability and Health, 4 May 2016, www.intellectualdisability.info/how-to-guides/articles/consent-and-people-with-intellectual-disabilities-the-basics.
Davis, Alison. “A Disabled Person's Perspective on Euthanasia.” Disability Studies Quarterly, 2004, dsq-sds.org/article/view/512/689.
“Disability: Health, Well-Being, and Personal Relationships.” Stanford Encyclopedia of Philosophy, 2016.
Ervin, David A. et al. “Healthcare for Persons with Intellectual and Developmental Disability in the Community.” Frontiers in Public Health 2 (2014): 83. PMC. Web. 4 Apr. 2018.
“Healthcare Treatment Decision-Making Guidelines for Adults With Developmental Disabilities.” Center for Practical Bioethics, 1996.
Horner-Johnson, Willi, and Danielle Bailey. “Assessing Understanding and Obtaining Consent from Adults with Intellectual Disabilities for a Health Promotion Study.” Journal of policy and practice in intellectual disabilities 10.3 (2013): 10.1111/jppi.12048. PMC. Web. 4 Apr. 2018.
Keyword, Kirsty, and Margaret Flynn. “Healthcare Decision-Making By Adults with Intellectual Disabilities: Some Levers To Changing Practice.” Intellectual Disability and Health, 3 May 2016, www.intellectualdisability.info/changing-values/articles/healthcare-decision-making-by-adults-with-intellectual-disabilities-some-levers-to-changing-practice.
Linton, Simi. Claiming Disability: Knowledge and Identity. New York University Press, 2010.
“Rejecting Rights: The Disability Critique of Physician Assisted Suicide.” Special Issue Social Movements/Legal Possibilities, by Katharina Heyer, 2011.
“Taking Life: Humans.” Practical Ethics, by Peter Singer, University Press, 1993.