Ethical Obligations to Patients Who Engage in Lifelong Self-surveillance for Genetic Risk of Cancer
Ellen Giarelli EdD, RN, CRNP
Genetic testing for predisposition to cancer has predictive potential and therefore has consequences different than other kinds of diagnostics. This technology transforms a person’s experiences with healthcare professionals and the healthcare system. By consenting to genetic testing a patient agrees in principle to uncover information of what “is” and “what might be” in relation to the health risks of oneself and one’s relatives. Such technology informs whole families of the risk for disease in living members and in future generations.
The predictive potential of genetic predisposition testing has de facto value to some people, simply because these people want the information. Value to one does not equate with value to all. A further ethical question is to determine whether the medical
act of predisposition testing and the findings have de jure value and thus ought to be prized and wanted by all people.
act of predisposition testing and the findings have de jure value and thus ought to be prized and wanted by all people.
One valuable, and therefore a “good,” consequence of such technology is that once a patient is identified as having a health risk due to a genetic predisposition the patient is encouraged and advised to actively participate in enhanced surveillance for expression of the altered genotype. If in discovering and uncovering genetic nature through genetic testing we are able to “diagnose, prevent, treat, or control disease, then the technology is ‘good’” (Giarelli 2003a, p. 257). We ought to want to use the technology which then can be seen as having de jure value. Access to this technology becomes a right. This raises the question, if genetic predisposition testing ought to be done, what then are the obligations to a patient once the testing is performed?
Genetic predisposition testing can become an instrumental link between best intentions and best outcomes of practice, provided professionals have a clear understanding of their obligations. The professional who conscientiously and accurately employs this “good” technology is indeed virtuous. Knowing what is good, however, is not always followed by knowing what must be done.
Knowing one’s predisposition to cancer brings with it the knowledge of unpredictable expression and potential for disease. The question of the nature of professional obligation to patients is an issue after predisposition testing is conducted, risk is interpreted, and participation in lifelong surveillance—including self-surveillance—for genetic predisposition to cancer begins. Predisposition testing creates a “fact of illness” (Pellegrino 1979). A high probability or absolute likelihood of developing disease is imposed on a patient in the absence of signs and symptoms. The risk precipitates watchful waiting and raises many questions. Are there ethical issues of interest to a nurse when she or he knows a patient is engaging in self-surveillance? What is the nature of the nurse’s responsibility to the patient? Who bears responsibility when self-surveillance is not done well?
Some critics are justified in claiming that healthcare providers have no ethical obligation to a patient during acts of self-surveillance because these acts are the choices made by a patient who will, to different degrees, perform these behaviors regardless of a cancer diagnosis. Self-observation of this kind results from a choice made by a patient as a direct consequence of the content and accuracy of information given by a professional. Others will argue that certain kinds of knowledge bring with them additional responsibilities.
In order to refine the nature of professional obligation in genetic health care, I will examine the theoretical phenomenon of participation in lifelong surveillance for
points where ethical claims might be made and ethical problems might arise. I will propose ways that nurses might address these ethical problems to ensure that best intentions lead to best outcomes of professional practice. Only obligations related to the patient will be discussed. Another set of obligations pertain to family members; these will be the topic of another discussion. The bioethical principles of beneficence and autonomy that traditionally guide nursing practice will be considered in the context of self-surveillance.
points where ethical claims might be made and ethical problems might arise. I will propose ways that nurses might address these ethical problems to ensure that best intentions lead to best outcomes of professional practice. Only obligations related to the patient will be discussed. Another set of obligations pertain to family members; these will be the topic of another discussion. The bioethical principles of beneficence and autonomy that traditionally guide nursing practice will be considered in the context of self-surveillance.
Conceptual Model of Participation in Lifelong Surveillance
Surveillance as a cancer risk management strategy has been used in health care for the early detection of disease, for complications associated with the treatment of cancer, and for medical management of symptoms and side effects over a lifetime. Screening for cancer in the population is an example of surveillance. Individuals with a high risk for cancer, based on family history or a known inherited genetic mutation, are encouraged to engage in enhanced surveillance indefinitely. When enhanced, observations of health outcomes occur more frequently than in the general population, they begin earlier in life, and they continue over a life-time. Within the context of a socially constructed relationship between the observer and the observed, both watch and wait for a threatening event that is associated with the genetic predisposition to disease (Giarelli 2002). When the observer and the observed are different a measure of objectivity is more likely. When the observer and the observed are the same as is the case of self-surveillance, objectivity may be compromised.
People in families with cancer predisposition syndromes, such as multiple endocrine neoplasia type 2a (MEN2a) and familial adenomatous polyposis (FAP) conceptualize lifelong surveillance in broader and looser terms than do healthcare providers (Giarelli 2003b). MEN2a is a genetic cancer predisposition syndrome that causes medullary thyroid carcinoma, adrenal tumors, and parathyroid hyperplasia. FAP is another genetic cancer predisposition syndrome that causes multiple colorectal cancer and other neoplasia. Surveillance for each includes planned and incidental observations. Participation in planned surveillance means following the recommended guidelines for enhanced monitoring for signs of disease and effects of treatment. This might include visits to physicians and biochemical analyses of tissue or fluid samples. Planned surveillance is prescribed by healthcare providers and the frequency of follow-up visits depends on genotype, diagnosis, and severity of the presenting disease. Incidental surveillance is primarily self-surveillance. It is the day-to-day watching and waiting performed, largely out of the purview of professionals, by patients and sometimes by family members (Giarelli 2003b). Healthcare providers are included only when observations made by the patient are brought to
the provider’s attention. Categories of self-surveillance include phenotype tracking, symptom monitoring, and medication appraisal (Giarelli 2006).
the provider’s attention. Categories of self-surveillance include phenotype tracking, symptom monitoring, and medication appraisal (Giarelli 2006).
Participation in lifelong surveillance is characterized by a core psychological process referred to as (Re)Minding and three psychosocial processes called Interpreting the Object, Negotiating Control, and (Re)Integration. Each incidence of self-surveillance reminds the person of the threat of cancer, loss, or disability. The reminder can be experienced as disintegrating, and it most often has a disturbing effect on one’s sense of integrity. Once reminded, a person processes cognitively the surveillance event by interpreting the meaning of the observation in relation to their genetic risk for disease. The person appraises the significance of the observation and negotiates control by managing the effects of the observation. This means the person thinks about and decides how much attention should be given to what is observed, and will manage care (act on the interpretation). Finally, a person endeavors to mitigate the disintegrating effect of the surveillance event and initiates anew the cyclical psychosocial processes of: interpreting the object, negotiating control, and reintegration (see Figure 20-1).
For example, a person with FAP may see red streaks in the stool. The observation of red streaks may suggest the presence of a bleeding colorectal polyp. The person compares this observation with previous, similar observations, and health information such as personal or family history of bleeding polyps or hemorrhoids, intake of irritating foods, amount of blood, and associated physical sensations, and so on. The person may ultimately interpret the observation as unrelated to the FAP, choose to not contact the physician, and self-medicate with stool softeners. Conversely, if the person experiences the observation as especially distressing and has prior experience with this symptom being associated with polyposis, the person will contact the healthcare provider and request professional intervention.
The Giarelli model presumes that each surveillance event is unique, and one may easily imagine a number of alternative scenarios to this one. The model also illustrates the claim that all participants in lifelong surveillance experience the same complex psychosocial processes. This claim will gain support as the model is tested in different patient populations.
Examination of the Model for Points of Moral Obligation
At each juncture of the model there is opportunity for the involvement of healthcare providers who must determine what is ethically required or what is the professional obligation. The literature provides us with guidelines for structuring planned surveillance events (National Comprehensive Cancer Network 2005). Such guidelines
are available for all cancers that require follow-up care, and differ according to the natural history, stage, and grade of the cancer. The guidelines provide recommendations regarding: frequency of visits for physical exams by primary providers or cancer and other specialists; and biochemical analyses (laboratory tests), to track progression of disease, recurrence, and response to treatment. A healthcare provider is trained to identify and meet patients’ educational needs. Obligations are clear in most cases with regard to the timing of and treatment during follow-up visits, recommended screening tests, medication schedules, and genetic counseling. However, there are no technical or intervention guidelines for nurses to follow vis-à-vis patient participation in incidental surveillance. Therefore, ethical obligations are also
ambiguous. An examination of the psychosocial processes during self-surveillance will uncover ways in which professionals may be morally obligated to act.
are available for all cancers that require follow-up care, and differ according to the natural history, stage, and grade of the cancer. The guidelines provide recommendations regarding: frequency of visits for physical exams by primary providers or cancer and other specialists; and biochemical analyses (laboratory tests), to track progression of disease, recurrence, and response to treatment. A healthcare provider is trained to identify and meet patients’ educational needs. Obligations are clear in most cases with regard to the timing of and treatment during follow-up visits, recommended screening tests, medication schedules, and genetic counseling. However, there are no technical or intervention guidelines for nurses to follow vis-à-vis patient participation in incidental surveillance. Therefore, ethical obligations are also
ambiguous. An examination of the psychosocial processes during self-surveillance will uncover ways in which professionals may be morally obligated to act.
 FIGURE 20-1 Participation in Lifelong Self-surveillance: A Conceptual Model |
Basic Psychological Problem in the Model: (Re)Minding
Once a person is informed that he or she has a genetic alteration associated with a high or absolute risk of cancer, this individual begins enhanced surveillance. Each surveillance event is noted. Planned surveillance events are prescribed by healthcare providers (HCPs) who recommend some observations over others based on clinical guidelines. For example, a patient is advised to have a colonoscopy every year for risk of colon polyps. The HCP determines which tests, visits, and other observations are needed. The HCP is obliged to share these recommendations with the patient and offer opportunities to carry them out. Patients also begin to engage in self-surveillance. They become vigilant and monitor changes in feelings and signs attributable to the cancer predisposition genotype. Self-surveillance may occur occasionally or many times per day. Self-surveillance, in most cases, occurs independent of the nurse’s participation, and proceeds for nearly all patients with little or no initial guidance as to how, when, or why it should occur. If nurses are obliged to inform patients of screening and follow-up recommendations, they also have an obligation to provide guidance for self-surveillance.
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