Case

In her mid-40s, KristaFootnote 1 is living with paraplegia, non-healing infected wounds, and osteomyelitis (infection of the bone) affecting her lower torso. Her quality of life is significantly diminished by chronic pain and lengthy hospitalizations and does not seem likely to improve. Having endured numerous surgeries for pressure sores, Krista states that she is tired of living in a state of constant suffering and she is running out of options for treatments that will offer a meaningful recovery. It is expected she will die from infection within 18 months. Hemicorporectomy could save her life by permanently eliminating her wounds and osteomyelitis. Although this surgery could improve her quality of life and increase her lifespan, her chance of surviving it is only 25 percent. A series of three surgeries will transform Krista’s 5′7″ frame into a 2′11″ body with a series of skin flaps closing off her shortened torso. The hemicorporectomy procedure would require a colostomy (for bowel) and ileal conduit (for urine). She will have no genitalia, and she will undergo breast reduction surgery in order to fit into the prosthetic bucket to support her in an upright position. Krista agrees to the procedure.

Background on Hemicorporectomy Surgery

Hemicorporectomy (HC) surgery was proposed by Frederick Kredel in 1950 as a “curative operation for locally advanced cancer, limited to the pelvis” and other intractable, non-healing wounds or malignancies affecting the body below the vital organs (Kredel 1950, as cited in Ferrara 1990, 270). First performed in 1960 by Kennedy with colleagues, hemicorporectomy was shown to be clinically feasible. Today, the operation remains rare, risky, and resource-intensive. The multiphase procedure removes the entire lower half of the body from the hipbones down. It involves creating ileal and colostomy conduits for urinary and bowel diversion, followed by severing the body and spinal cord and creating skin flaps to close the lower abdomen. Postoperatively, the patient is fitted for a prosthetic bucket in order to sit in an upright position. Although hemicorporectomy is a survivable procedure, it is by all accounts “severely mutilating” (Ferrara 1990, 270). Masterson suggests that “[m]any surgeons are not prepared to offer their patient a hemicorporectomy under any circumstances, arguing that the procedure pushes the frontiers of surgery beyond what can be considered reasonable” (2006, 32). Like other extreme surgeries, such as the separation of conjoined twins, hemicorporectomy highlights the heroic nature of medicine; that is, the noble pursuit of health care providers to keep their patient alive against the odds, which sometimes means using the most drastic measures. We explore five aspects of the complex landscape of hemicorporectomy to illustrate the broader ethical questions related to this extraordinary procedure: benefits, risks, informed consent, resource allocation and justice, and loss and the lived body.

Benefits

Hemicorporectomy surgery is performed to relieve suffering and improve both the quality and quantity of the patient’s life when all other courses of treatment have been exhausted. Hemicorporectomy candidates are patients who are suffering; they have experienced many prior hospitalizations and surgeries and live with chronic pain. The medical indications for hemicorporectomy include “locally invasive pelvic cancer without metastatic spread, benign spinal tumors, intractable decubitus ulcers with malignant change, paraplegia in association with intractable pelvic osteomyelitis and decubitus ulceration and crushing trauma to the pelvis” (Masterson 2006, 31).

Providing an avenue to resolve the medical issues for an improved quality of life for the patient is indeed an important goal of medicine. Although some may argue that the removal of one’s lower half is not in and of itself a good outcome, others may assert that the freedom from chronic pain and infection is enough of an improvement to warrant such a drastic procedure. Case reports in the literature and media suggest that survivors do experience an improved quality of life in addition to longevity. After hemicorporectomy surgery one patient married, enrolled in law school, became involved in disability rights activism, worked part-time, and engaged in hobbies such as writing and photography for the 12 and a half years he lived following his surgery before succumbing to a subarachnoid hemorrhage (Shields and Dudley-Javoroski 2003). In another case, a patient stated upon discharge from the hospital following HC, “I’m going fishing” (Porter-Romatowski and Deckert 1998, 468). A third story reports that the patient enrolled in an online university with hopes of eventually earning a Ph.D. (Grondahl 2011). These examples illustrate that HC surgery can offer restoration of health to the degree that the patients can move forward in their lives with a sense of purpose and well-being they may not have otherwise attained. In short, a successful hemicorporectomy surgery can be viewed as a procedure that improves the quality of life of the patient in the long run.

Risks

The main risks of HC surgery are that the surgery fails and the patient dies intraoperatively or sooner than she or he would have without the operation, that the goals of improved health and well-being are not achieved, and that the procedure sets a precedent for extreme body modification for less than life-threatening conditions. The estimated survival rates are estimated to be 70 percent for nonmalignant indications, 50 percent for trauma, and 30 percent for malignant causes (Masterson 2006). The long-term survival rates for patients who had terminal osteomyelitis are just over 50 percent at 9.4 years (Janis et al. 2009). These statistics are not prohibitive and survival rates may improve further as technology and knowledge increases about how to undertake the extreme procedure, and a reasonable person could find such odds an acceptable level of risk.

Though patients can engage in meaningful activities following HC, they also continue to have pain, further surgical needs, and hospitalizations. One patient who had hemicorporectomy surgery was reported to have had 749 days of hospitalization in the 12 years prior to HC and only 190 in the 12 years following HC, suggesting a clear improvement in the patient’s health status (Shields and Dudley-Javoroski 2003). Another patient reported continued pain and a return to the hospital for surgical treatment of decubitus ulcers on her stump. Other reports of patient histories following hemicorporectomy indicate that none of nine patients had any recurrent decubitus ulcers (Janis et al. 2009).

Improved surgical success rates could, at least theoretically, lead to a path where removing a nonfunctional but otherwise healthy portion of a body becomes a procedure done for convenience or to address psychological pain. Individuals with paraplegia and quadriplegia have extremities that do not respond; nonetheless, current standard of care does not involve removing these nonfunctional extremities. Yet, there is precedent for modifying a developmentally disabled girl’s body to keep her small and “sexless” (e.g., removal of breast buds and hysterectomy) to ease future caregiving demands for her family (Gunther and Diekema 2006). This case did not, however, entail the removal of large segments of the body, like limbs, which is often seen as a last-resort measure when medically indicated and strongly opposed when electively chosen. For example, individuals with body integrity disorder or apotemnophilia may find parts of their own body repulsive sources of chronic emotional pain and seek removal of otherwise healthy, usable limbs (Muller 2009; Bridy 2004). The risk that hemicorporectomy surgery could evolve into an extreme form of body modification performed for less than life-threatening indications seems remote; we find that this surgery is ethically unsupportable in cases where therapeutic alternatives exist.

Informed Consent

Hemicorporectomy raises at least three challenges to informed consent. First, and common for rare or novel procedures, is that often there simply is not a lot of information available about what patients can expect. Second, hemicorporectomy is so radical that it is probably difficult for most individuals to imagine having the entire lower half of their body removed. Third is the concern that the experience of intense pain may influence patients to accept surgical complication risks out of desire for more permanent relief even if the surgery is not in their best interest (Bono et al. 2012). Recent research suggests that severe chronic pain may cause patients to perceive the potential benefits more optimistically than providers (Lattig et al. 2013). It is conceivable that pain may alter the decision-making process for patients considering hemicorporectomy. However, the literature does not seem to support the claim that pain overrides reason and presses patients to opt for an extreme “solution” that may in fact be worse than their current situation (Bono et al. 2012). Despite these challenges, health care providers who have offered hemicorporectomy have done their best to meet the standards of informed consent. For instance, pre- and postsurgical psychiatric evaluation were offered in all reported hemicorporectomy cases “to evaluate [the patient’s] ability to understand the procedure and the extensive physical, functional, and emotional disability resulting from it” (Janis et al. 2009, 1174). For patients facing the choice between a shortened lifespan and an extremely disfiguring surgery, there may be limited options for reassurance from peers who have faced the same medical dilemma. The rarity of this procedure coupled with privacy regulations limit the opportunities to connect potential HC patients with others who have undergone the procedure as a mechanism to inform a decision to consent to the surgery.

What may need to be explored is the potential for secondary gains when medical professionals and patients agree to pursue this radical procedure. In a society fascinated with the newest, oddest, and most extreme anything, there is a risk that an expectation of potential celebrity could influence a patient to undergo hemicorporectomy, with not only the hope of survival but also that she or he will benefit from some degree of fame. There is also the concern that the hospital and medical professionals involved in HC may be agreeing to the surgery, at least in part, for publicity or to reinforce the heroic nature of medicine (and their hospital specifically). Given the challenges to ensuring informed consent and the risk of professional bias and possibility coercion, it seems highly advisable that consultation with an institutional ethics consulting service or ethics committee be required before HC is performed.

Resource Allocation and Justice

The resources required for hemicorporectomy surgery are significant. In the case presented here, the hemicorporectomy surgery alone required 26 units of blood, with one cadaver serving as a resource the surgeon utilized for practice (Grondahl 2011). Allocation of health care dollars and scarce resources, such as blood and cadavers, raises questions about distributive justice. A series of three surgeries are often needed to complete the procedure. In one reported case, the hospitalization spanned eight months. Staffing resources, intensive care unit (ICU) care, and rehabilitation services were all required. Since the procedure is so rare and has been performed at so few institutions, it requires considerable time and resources from the health care team to be prepared to perform it if they have never done so before.

It is important to consider whether it is reasonable and prudent for this quantity of medical goods to be allocated on behalf of a single patient with poor odds of survival. Though we often expend tremendous amounts of health care resources for patients with life-threatening conditions, a key difference in hemicorporectomy is that it is not the standard of care for any of the conditions that might warrant consideration of this procedure. From a distributive justice standpoint, we do not typically expend this magnitude of resources on procedures that are not the standard of care and that have limited odds of achieving a restoration of health and well-being.

None of the cases noted in the literature suggests that families were financially liable for medical costs related to the hemicorporectomy surgery, rehabilitation, or prosthetic devices, which combined are close to or exceeding $1 million in case reports where cost is addressed. In one case the physicians “did not bill for their services, which amounted to a multimillion-dollar donation” (Grondahl 2011, A9). Medicare and Medicaid were the noted insurers of record in other instances, and a hospital purchased the prosthetic bucket for one patient who did not have insurance coverage for the device. For all but the ultra-rich, hemicorporectomy procedures would undoubtedly deplete most families’ financial assets. Though family members may find it possible to accommodate the physiological losses, the medical bills and potential financial strain could prove too costly.

Loss and the Lived Body

One unique feature of hemicorporectomy surgery is that more of the body is absent postoperatively than in any other known procedure. Whereas prostheses are often used to return the body to its “normal” state following bodily loss (limb amputation, mastectomy, etc.), no restorative options exist for HC, in part because of the extreme nature of the surgery. There is also the concern that removing a person’s body from the bellybutton down fails to consider the body as part of one’s personhood and identity. Unlike Descartes, who is (in)famous for mind–body dualism and reducing the role of the body to a mere vessel for the soul, many scholars affirm the importance of embodiment. Merleau-Ponty, for example, rejects mechanistic views of the body and instead describes the body as both what we are as perceiving subjects and the perspective from which we see the world. In short, he believes that “the body is our general medium for having a world” (2002, 162). His discussion of the habitual body—that which one has learned to do and can do without thinking (e.g., turning a doorknob or tying a shoe)—is especially useful in understanding the loss of bodily function and parts. According to Merleau-Ponty, the phenomenon of phantom limbs can be explained by the fact that people’s present body does not match up to their habitual body.

For individuals who have undergone HC, there is a drastic difference between their habitual and their present body, which can be emotionally devastating for them. Specifically, patients often view the removal of a body part as a loss and this loss is associated with decreased self-esteem, social isolation, perceived vulnerability, body image problems, and a sense of stigmatization (Behel et al. 2002; Bhojak and Nathawat 1988; Rybarczyk et al. 1995). An excerpt from one patient’s personal writings describes the grief of discovering his altered body after HC surgery:

I moved my hand downward from my chest across my belly button and my abdomen to my back, never lifting my hand. Stunned, I raised the sheets from my body and my head from the pillow. I cannot see the end of my body. My arm reaches out at an expanse of white—my mind is blank. There are no words to describe the loss. I drop the covers and lift my head in tears. My physical self is no longer the problem (Shields and Dudley-Javoroski 2003, 271).

Given the significance of the body and its integral role in our identity, the loss individuals face after HC may be immeasurable and perhaps not even worthwhile.

Individuals who have had HC surgery may not only be concerned about how this surgery affects their own identity and life, but also how it affects their relationships and sexuality. In particular, some patients fear that their relationships will dissolve following the surgery. In the introductory case in this paper, the patient feared the loss of her genitalia would be too great a change for her partner to accommodate: “I have no sex parts. … I understand if you want to leave me” (Grondahl 2011, A9). One unique feature of this surgery is the permanent loss of genitalia and gonads, requiring hormone replacement therapy and resulting in the inability to engage in any sexual activity involving the genitalia. Krista’s partner declined to leave her, as did the spouse of another hemi patient, who stated, “I don’t care how small she is. I just want her with me” (White 2000, 57). These reflections support a perception that the cost to these patients and their loved ones is indeed worth taking given the chance at increased longevity.

The extreme physiological changes following HC can also create moral distress among the health care professionals. Typically, “the first reaction of the nursing staff is negative. … They may be reticent to participate in a procedure that is so permanently disfiguring” (Weaver and Flynn 2000, 122). In response to HC, one nurse stated: “To say I was shocked is putting it mildly. I thought to myself, I’d rather be dead” (White 2000, 57). These responses affirm the need for frank, detailed conversations with operating room, recovery room, and floor personnel to “alleviate the shock” of the patient’s postoperative physical state (Weaver and Flynn 2000, 119).

Conclusion

Perhaps it is true that “there is no such thing as a ‘natural’ body” and our concerns about hemicorporectomy being too extreme are simply reactions to a different, albeit rare, image of the body (Lemma 2010, 20). Moore notes in his 1968 essay that “major amputations—even hemicorporectomy and quadriplegia—do not, from a social standpoint, significantly alter the essence of a patient’s personality and identity” (Moore 1968, 495). And although the essential characteristics of a person’s character, temperament, and psyche remain intact following a successful hemicorporectomy, much is different as well. The question of whether or not the physiological changes cause harm to the self remains difficult to answer.

As hemicorporectomy surgery becomes an increasingly survivable procedure, it will be important to continue to evaluate the ethical implications related to this extraordinary procedure. The various cases illustrate many of the considerations patients, patients’ families, health care providers, and medical institutions must weigh when undertaking this extreme surgery. Addressing questions about benefits, risks, informed consent, resource allocation and justice, and loss and the lived body as well as the vast uncertainty of outcomes is difficult, but feasible. Whether hemicorporectomy represents a benefit or harm should ultimately be decided by the patient in concert with medical providers.