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Casuistry 1
Running head: CASUISTRY: A NEW LOOK
Casuistry: A new look at a Down Syndrome Patient’s Rights
Vanessa K. Amos
University of Virginia
On my honor as a student, I have neither given nor received aid on this paper.
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Abstract
Based in reasoning by analogy, casuistry is a method of ethical analysis often underrepresented
in medical literature. Casuistry attempts to offer solutions to ethical dilemmas by comparing
components of the dilemma to other, pre-existing cases, emotions, or experiences. It provides a
social consensus on what would be the most positive outcome for the case in question. To better
understand how casuistry can be used in a medical setting, a case is presented concerning a
transplant center’s decision to provide a heart-lung transplant to a patient with Down syndrome.
The four basic tenets of medical casuistry are explored and two solutions proposed: to donate or
to not donate.
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Casuistry: A new look at a Down Syndrome Patient’s Rights
Introduction: Casuistry as a Tool in Ethical Reasoning
Casuistry was first developed throughout the fourteenth to sixteenth centuries, with
Jesuits being the most devout practitioners (Jonsen 1995). The theory was later expanded and
brought back into ethical discussions by Johnsen and Toulmin’s (1988) The Abuse of Casuistry:
A History of Moral Reasoning. Under a more broad view, casuistry can be described by three
basic elements: morphology, taxonomy, and kinetics (Bell 2008). These three topics describe
how the permanent, specific details to a case can be matched with similar themes of other cases
to draw lines of parallel moral inferences (Bell 2008). Within a more medical framework,
developed by Johnsen, Sieglar, and Weinslade (2006), casuistry is defined by four basic
quadrants: medical indications, patient preferences, quality of life, and contextual features. Here,
medical indications include the overall medical situation, treatment options, and the potential
benefits (if any) to the patient by participating in the suggested treatments (Sokol 2008). The
medical indications serve to “ground the case in medical reality” (Sokol 2008). Patient
preferences refer to the wishes of the patient (if competent) or their supposed wishes (if
incompetent). Surrogates are used as necessary. Preferences are sought after in an effort to
understand the patient’s response (or presumed response) to the offered therapeutic options
(Sokol 2008). Quality of life (QOL) refers both to the patient’s current stated (or presumed)
outlook, as well as their thoughts on the future (E.G. Epstein, personal communication, October
1, 2010). Contextual features refer to the general context of the situation, be it financial
influences, legal, family, work, insurance, or other factors. Sokol (2008) explains how every
clinical encounter occurs within a larger context, which must be taken into account when making
ethical judgments. Typically, casuistry is described as a “bottom-up” approach, with a focus on
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practical knowledge over theoretical concepts like autonomy or beneficence (Beauchamp &
Childress 2009). Furthermore, casuistry rarely results in an unequivocal answer (Bell 2008).
Rather, it generates a recommendation based on its parallels to other cases (Bell 2008).
The Case and the Dilemma
Sheila
Sheila is a 30-year-old woman who has Down syndrome. She was born with congenital
heart and lung abnormalities (as is typical to Down patients; Leonard, Eastham, and Dark 2008),
which have begun to impact her health negatively. She has been experiencing the following
symptoms for the past six months: shortness of breath, heart palpitations, headaches and
syncopal episodes, especially when overtired. She has stated how frustrating and incapacitating
these symptoms have been, even though she has tried both over-the-counter and prescription
medications to bring some relief. She lives independently and works in a workshop making hand
crafted gifts. She is an only child and single, but her parents live approximately ten minutes
away and visit at least twice daily. Due to her declining health, she was recently referred to a
transplant center from her local physician for a possible heart-lung transplant. Her insurance
company has agreed to fund the procedure, provided Sheila pays the $1500 deductible required
of her policy. Sheila has over $10,000 in her savings account, and is willing to pay the
deductible. The referral center rejected her as a candidate saying that she would not be able to
adequately manage her post-transplant care because of her diagnosed mental retardation. Since
being turned away, she appealed to a second center, as she sees the transplant as her only option
to extend her life. Even though Sheila serves as her own advocate, her parents remain staunch
supporters of her receiving a transplant, as does her local physician.
The Dilemma
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Based on the above case, this paper will attempt to provide evidence towards both the
transplant center refusing Sheila a heart and lung transplant based on her medical diagnosis and
to requiring the center to provide Sheila with the organs. Ethically, the decision is rooted in
potential pros and cons that the medical casuistry framework will provide in an attempt to solve
the dilemma.
The Four Quadrants
Medical Indications
Down syndrome is a congenital condition caused by trisomy of human chromosome 21
(Hsa 21; Wiseman, Alford, Tybulewicz, Fisher 2008). Furthermore, it is proposed much of the
phenotype of Down syndrome, to include heart defects, lung abnormalities, cranio-facial
malformations, and cognitive impairment, is caused not only by the replication of an addition of
Hsa 21, but the general increase of gene expression throughout the human genotype (Roper &
Reeves 2006). The relative presence of these phenotypic abnormalities is highly variable (Roper
& Reeves 2006), but congenital heart disease occurs in roughly 40% of Down patients (Leonard
et al. 2008). Although it is typically repaired in childhood, many do not receive the necessary
surgery, which then leads to their hearts becoming inoperable, due to the presence of coronary
artery disease or other damage related to age (Leonard et al. 2008). Transplantation quickly
becomes the only option to ensure high quality of life and an extended lifespan. Risks of
transplant surgery are high, as well as those of being placed on life-long immunosuppressant
drugs. Coupling these risks with a Down patient’s 10 to 30 times more likely chance of
developing leukemia, and their tendency to develop strong immunological responses to foreign
tissue (Leonard et al. 2008), it only underscores the care required in deciding if a patient should
receive a transplant. Other treatment options rest on purely palliative care, as surgery no longer
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remains an option and the malformations remain too complex to correct through medications
alone.
In addition to the physical defects of Down patients, cognitive abilities may also be
impaired, which is suspected to occur because of an abnormal development of the prefrontal lobe
(Rowe, Lavender, & Turk 2006). This condition manifests as poor executive functioning, which
includes things like planning, problem solving, memory, and inhibition (Rowe et al. 2006). Any
malfunction in these processes would likely impact a Down patient’s ability to properly care for
themselves after a serious medical procedure or life event. However, as was explained earlier,
Down patients exist on a continuum of phenotypes and mental capacities; any neurological
impairment may be minor or absent all together.
Patient Preferences
Sheila has remained firm in her belief of a transplant being the only option for medical
care. She has continued to seek approval from an organ donation center even after being refused
once. Sheila has also been supported by her parents and her local physician, which points to
their continued presence and support should Sheila no longer be deemed competent to make her
own medical decisions.
Quality of Life (QOL)
Sheila’s current concept of QOL is marred by physical hindrances, including shortness of
breath, heart palpitations, headaches, and syncopal episodes. These symptoms have been
occurring over the past six months with no relief, even with using over-the-counter and
prescription medications. Although the case did not mention it specifically, Sheila is likely also
feeling these effects in the social realm, perhaps through having to miss work or other activities
where she had previously been an active participant.
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Medical interventions should aim to improve, or at least maintain, a patient’s quality of
life (Sokol 2008), and while Sheila’s mental state is an important factor in her overall health, the
risks of transplant should not be overlooked. The surgery alone could prove fatal, let alone the
increased risk for cancer and higher risk for transplant rejection. These points must be factored
into the projected future QOL for Sheila, as these symptoms are likely to be more damaging
(both physically and mentally) than her current condition.
Sheila’s proposed future mental function should also be a part of the decision. Because
of the known connection to poor memory and learning ability (Nadel 2003), the ability for
Sheila’s functioning post-transplant must be addressed. Questions arise around Sheila being able
to care for herself appropriately post-procedure, as well as if she would be able to adhere to the
necessary, life-long medication regimen over her later years. Some studies have shown that
mental retardation does not prove a hindrance in post-transplant care, especially with the
continued involvement of family members (which Sheila would likely receive from her parents;
Martens, Jones, & Reiss 2006). Nevertheless, due to the continuum of mental functioning in
Down’s patients, caution should be used around deciding Sheila’s future mental capacity,
especially considering her current high-functionality. A serious medical procedure has the
potential to cause extreme mental stress, however, which could lead to a decline in Sheila’s
mental ability. Should she receive the transplant, significant time must be taken when providing
patient education and available resources post-procedure.
Contextual Features
When considering the context of Sheila’s case, especially the reference to her mental
capacity, a few legal cases should become apparent. The first is the American Disabilities Act
(ADA; U.S. Department of Justice 2005), which prohibits discrimination on the basis of
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disability, including (thanks to Olmstead v. L.C. [1999]), mental retardation. Therefore, if
Sheila’s ability to care for herself post-transplant is brought into question because of her mental
functioning, Sheila can plead wrongful discrimination. In order for her to claim discrimination,
however, Sheila would have to acknowledge a lower mental capacity, which may prove difficult,
especially since she previously considered herself highly functioning.
At the same time, the court case Perez v. Blue Cross Blue Shield of Texas, Inc. supported
the decision of an insurance company refusing to insure a defendant with Down syndrome. The
insurance company claimed to have refused to insure all Down patients, so did not see the
problem in refusing the defendant. Further, the defendant was able to secure insurance from a
second insurance company, so higher courts upheld the decision of the insurance company being
in the right. Speaking from this context, Sheila could be refused the transplant from the donor
organization if the organization could prove they had not and will not offer a similar service to
any patient with Down syndrome. Furthermore, if Sheila is able to receive the transplant from
another agency, she cannot take any legal action against the first company for refusing her.
Outside of the legal realm, other contextual issues will likely prove important when
considering Sheila’s case. First, her relationship with her parents must be brought into
consideration as they have stated their approval of Sheila receiving the transplant. Their staunch
support also serves as an indicator they will continue to play an active role in Sheila’s life, which
may help negate any potential mental functioning setbacks (Martens et al. 2006). However, the
stress of caring for a previously high functioning daughter may prove substantial enough to result
in a poorer quality of life, not only for Sheila, but for her parents, too.
Then, Sheila’s relationship with her physicians (both local and within the transplant
centers) should also be included, as their perspectives are valid when forming a final decision.
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Physicians often look to provide the best quality of life for the patients, and current medical
research has not been able to establish a clear answer to the question of providing a heart-lung
transplant to a Down syndrome patient. Here, personal opinions on current research and their
perception of Sheila’s quality of life will likely play a large role in the decision.
Cost is another issue that deserves attention before agreeing to any substantial medical
decision, but, with Sheila’s insurance company agreeing to pay for the procedure after receiving
the appropriate deductible, and Sheila’s willingness to use part of her savings, it is less of a
concern in this particular case.
Conclusion
The decision of whether Sheila should receive a heart-lung transplant from the second
donation agency presents an ethical dilemma, especially considering Sheila’s Down syndrome
diagnosis, worsening symptoms, and potential for cognitive setbacks. Having been refused once
only further complicates the decision-making process. Casuistry provides a simplistic
framework, based on the four quadrants of medical indications, patient preferences, quality of
life and situational context. Sheila’s medical indications point to the need for a thorough
understanding of the pathophysiology of Down syndrome, including the high prevalence of heart
abnormalities and the tendency of Down patients to develop strong immunological responses and
eventual rejection to foreign tissue. These two concepts point to the near necessity of receiving
heart surgery and transplants, while, at the same time, providing a strong argument for their
refusal. Sheila’s preferences as a patient are more strictly in line with agreeing to the transplant,
but the potential for cognitive impairment in Down patients does undermine the validity of
relying on her preferences alone. Quality of life issues point to Sheila’s current active,
productive lifestyle and her desire to maintain it, but the risk of dying directly because of the
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surgery or later transplant rejection should not be overlooked. Within the context of legal cases,
Sheila’s case can be supported both for and against receiving the transplant. The ADA points to
providing the transplant, but cases like Olmstead v. L.C. and Perez v. Blue Cross Blue Shield of
Texas, Inc., describe specific qualifiers Sheila may not be willing to provide to receive her
desired medical care. In the context of her personal relationships, Sheila’s supportive parents
and medical team provide support to the procedure, yet the stress of caring for a post-procedure
patient whose future mental status can decline may not balance the benefits of the transplant.
Given the information provided here, it is easy to see how an argument could be made for either
side of the case, to grant the transplant or to refuse it. Coming to this conclusion only further
supports Bell’s (2007) statement that casuistry “rarely results in an unequivocal answer.”
Rather, it provides “recommendations” based in society’s previous decisions on what is right and
wrong.
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