Ethical Challenges in Oncology: Patient Care, Research, Education, and Economics

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Chapter 1

Ethics and Organizational Identity in a Cancer Care Setting

Eli Weber and Colleen M. Gallagher,    The University of Texas MD Anderson Cancer Center, Houston, TX, United States

Abstract

In this chapter, we identify some of the distinct ethical challenges that cancer care institutions face, and suggest that one way cancer care institutions can respond to these challenges is by incorporating ethical thinking into their organizational identity in a manner that explicitly responds to the distinct challenges of cancer care. We propose that an institution’s mission statement, code of ethics, institutional decision-making procedure, and leadership structure all provide opportunities for incorporating ethical thinking into a cancer care institution’s organizational identity. We conclude by identifying several challenges that cancer care institutions may face when attempting to implement their ethical vision so as to motivate individuals to act in accordance with these visions. While these challenges do not tell against the institution’s effort to incorporate ethical thinking into their organizational identity, they do indicate a need for an implementation strategy that directly engages with the way that individuals make ethical decisions.

Keywords

Organizational ethics; institutional ethics; organizational identity

Introduction

Whenever we question our duties or obligations, what sorts of outcomes would be good or bad, valuable or not, or what sorts of persons we want to be, we have entered the domain of ethics [1]. These same sorts of questions permeate the landscape of health care [2]. For example, physicians may find themselves considering whether they are obligated to provide, or perhaps obligated to not provide, a requested treatment. Patients may question whether a particular course of treatment would be good or bad for them, and health care institutions may ask themselves whether a certain policy change would be good for their patients, or whether it is consistent with the sort of organization that they strive to be. Professional health care organizations may ponder whether they ought to take an official position on a controversial issue in health care, and if so, what that position should be. At both individual and organizational levels, ethical questions inevitably arise within the health care setting.

The unavoidably ethical nature of health care takes on unique features within the context of cancer care. For example, cancer patients tend to be especially vulnerable in a number of different ways; the uncertainties of cancer care and the rapidly evolving management strategies make participation in research at almost all stages of treatment highly desirable. Furthermore, cancer care often takes on a singular focus, where the overall health of patient may take a secondary position to that of eliminating the patient’s cancer. In this chapter, we initially will identify some of the features of cancer care that are perhaps more prominent than in other areas of health care, and that give rise to ethical considerations which, though not necessarily unique to cancer care, are somewhat distinctive, in that they are both more common and more pressing than in other areas of health care. The relationship between organizational identity and ethics, with a focus on some of the mechanisms health care organizations devoted to cancer care might utilize to ensure a prominent place for ethical thinking within their organization will then be discussed. We will conclude by identifying a potential challenge associated with putting an organization’s ethical vision into practice so that it influences the decisions and actions of individuals who represent that organization, as well as several areas where further research is needed. Our goal is to identify some of the ways that health care organizations devoted to cancer care can incorporate ethics into their organizational identity, in order to adequately address the ethical issues that are distinctive of cancer care.

What Makes Cancer Care Ethically Distinct?

Ethical issues in health care are typically analyzed in light of the ethical principles thought to be important for thinking about ethics within this domain. Before discussing some of the ethical challenges that are distinct to cancer care, these principles will be briefly identified, and their significance for health care ethics discussed more generally.

We begin with the principle of autonomy, which is typically associated with the notion of self-determination or self-rule. Autonomous agents are those whose actions are truly their own, in that their actions follow from, or are in accordance with, the agent’s own reasons and values [3–5]. The principle of autonomy requires that competent individuals have the right to make decisions for themselves, without undue interference from others. The principle of autonomy as it pertains to health care thus implies that patients have a right to make decisions for themselves about their treatment, without undue coercion from others. Additionally, many purport this right implies a duty on the part of health care providers to honor the autonomous wishes of patients, even when they do not agree with the patient’s autonomous choice. In general, many ethical issues in the health care of cancer patients have an element of autonomy.

The principle of beneficence is also an important ethical principle in health care. The principle of beneficence states that we should promote the interests, welfare, or well-being of others, and that in general, we should try to do good [6,7]. The obligations that follow from this principle depend, of course, on what we take the notion of interests, welfare, or goodness to involve. Despite this, the idea that we should try to pursue good outcomes is a helpful source of ethical guidance in health care.

The principle of nonmaleficence is often considered to be a corollary to the principle of beneficence. The principle of nonmaleficence states that we should avoid doing harm to others [1,6,8,9]. As we saw with the principle of beneficence, the obligations that follow from the principle of nonmaleficence depend on how we understand the notion of harm. What is more, we should not interpret this principle to imply that we should avoid actions where the benefits outweigh the harms that may result, or that we act unethically when our actions cause unintended or unanticipated harms. We should avoid intentional or willful harm when there is no significant corresponding benefit. The edict that we should first, do no harm is regarded by some as the most important ethical principle in health care.

The principle of justice is another important ethical principle in health care. The content of this principle, just as we saw with the principles of beneficence and nonmaleficence, will depend on how we construe the concept of justice [6,8,10–13]. There are many different types of justice that may be ethically relevant, both in general and within a health care setting. For example, commutative justice pertains to what is owed between individuals, e.g., in conducting business transactions. Contributive justice refers to what individuals owe to society for the sake of promoting the common good, while legal justice has to do with the rights and responsibilities of citizens to obey laws, respect the rights of others, and protect the social order. Distributive justice refers to the fair allocation of resources. In general, the principle of justice requires that we treat others fairly, such that all individuals are granted equal consideration when we make ethical decisions, and none are asked to bear more than their share of the burdens associated with a particular course of action.

How then does one apply the ethical demands of these principles to particular situations in a health care setting in general and in the care of the cancer patient in particular? This analysis can be complicated, but one useful strategy is to consider the burdens and benefits of the available courses of action and determine which has the most favorable balance between the two. For example, suppose a physician is considering whether to offer their patient a treatment option that is known to have harmful side-effects. The physician might consider exactly what these side-effects are, how harmful they might be for the patient, and how likely they are to occur. These sorts of considerations are weighed against the possible benefits of the treatment being considered. If the treatment offers a high probability of significant benefit, with only a slight risk of substantial burdens for the patient, one is ethically justified in offering the treatment to the patient. However, if the treatment offers a low probability of benefit, with substantial risk of serious burdens, such that the treatment is disproportionately burdensome, it may not be ethically justified to offer the treatment as an option for the patient. In most cases, considering the burdens and benefits of various available courses of action with patients can help us to determine which option is ethically best.

Now that we have a sense of the sorts of considerations that tend to be relevant for health care ethics in general, we can better appreciate the ways in which cancer care gives rise to distinct ethical challenges. Some of these challenges are related to the sorts of treatments utilized in cancer care. Depending on the type and severity of a patient’s cancer, as well as other features of their personal and medical history, their treatment may include chemotherapy, radiation, biotherapy, surgery, or some combination of these interventions. For an increasing number of malignancies, stem cell transplantation has become an important modality. While these treatments differ significantly from one another in many respects, they all have two features in common that stand out as ethically significant. First, many of these treatments have the potential to be burdensome and especially harmful for the patient [9,14–16]. In some cases, the patient may actually be made worse off in some way than they were prior to receiving treatment [17–21]. In other cases, they may be harmed, either temporarily or permanently, in exchange for an uncertain but an anticipated benefit in survival or quality of life. Therefore, patients often must decide whether to pursue a potentially harmful course of treatment with only a modest chance that it will be beneficial [18]. In some cases, such as those where patients are considering a stem cell transplant, they must decide whether to pursue an extremely aversive, life-altering treatment with a three-year survival rate of less than 50% [22]. These conditions give rise to ethically difficult decision scenarios, since it becomes challenging to identify a treatment option that is not disproportionately harmful for the patient. In many cases involving patients with cancer, disproportionately harmful treatments are the only curative options available. This is further complicated by the fact that for some cancer treatment options, the potential benefits are largely to future generations rather than the patient currently receiving the treatment. What is more, it is unavoidable that for many patients with cancer, their illness is such that their capacity to make autonomous decisions is seriously impaired [23–25]. This can make it difficult to interpret the obligation to respect patient autonomy. While other medical conditions may also give rise to these sorts of high-risk, low-reward decision scenarios, such scenarios are relatively common within a cancer care setting.

Social and cultural attitudes about cancer also give rise to unique ethical challenges in cancer care. For example, many cultural groups view a cancer diagnosis as a death sentence [26]. Patients from these cultural groups, as well as their family members, may insist that information about a patient’s cancer diagnosis be withheld from the patient or struggle to adhere to the proposed treatment plan [27–29]. Cultural beliefs and values regarding cancer and cancer care can make it more difficult to provide adequate treatment for patients with these values and beliefs and they may require that we rethink or revise our understanding and application of relevant ethical principles. Cultural beliefs about cancer may make it difficult, for example, to interpret the demand that we respect patient autonomy. We may also struggle to evaluate the benefits and burdens of a particular treatment option for a patient who is not fully informed of their prognosis.

Cancer care also gives rise to distinct ethical challenges for cancer care institutions [30,31]. Most prominent cancer care institutions have a strong commitment to the advancement of cancer research as cancer care often involves the use of experimental therapies and participation in clinical trials. As such, cancer care tertiary facilities must balance the need to provide the best patient care possible with the demands of their research program. This balancing effort may require, for example, that an institution think seriously about whether the clinical trials they approve are in the best interests of their patients, or whether allowing a research protocol might involve a conflict of interest, and if so, whether that conflict can be managed effectively. Cancer care institutions with a strong research focus must also find ways to empower their physicians as both researchers and care providers, in order to ensure that both aspects of their institutional commitments can be equally realized. This requires, among other things, that we think about harms and benefits for individual patients who may be asked to participate in a research study as well as potential benefits and burdens for possible future cancer patients. In some cases, a separation of those involved in research from those involved in direct care of the patient may be ethically justified. These sorts of considerations can be extremely difficult to formulate in meaningful ways but they are essential to evaluate the ethical justifiability of things like institutional involvement with clinical trials.

Social and cultural factors give rise to other distinct ethical challenges for cancer care institutions. Many cancer care institutions, for example, must balance the international scope of care and research with the localized nature of individual care centers. A large-scale, globally focused cancer care institution must find ways to serve an international, culturally diverse patient population while also meeting the cancer care needs of the local population from which many of their patients may come. Both patient populations may receive types of cancer care, but they may also have differing psychosocial needs that require culturally informed solutions. Such institutions must also consider the ethical demands of conducting research within an international context and find ways to ensure that high ethical standards for research are maintained even in settings where such standards are not the norm.

These are just some of the ways that cancer care can give rise to distinct ethical challenges. But what can cancer care institutions do to try and meet some of these challenges? To answer this question, we need to address the relationship between organizational identity and ethics, and to identify some of the mechanisms health care organizations devoted to cancer care might utilize to ensure a prominent place for ethical thinking within their organization. In doing so, we will advance the claim that cancer care institutions can begin to meet the distinct ethical challenges of cancer care by incorporating ethical thinking into their organizational identity.

Organizational Identity and Ethics

We have suggested that cancer care institutions can meet the distinct ethical challenges of cancer care by incorporating ethical thinking into their organizational identity. How exactly does this work? Organizational identity is an important initial consideration that can be defined as a shared understanding of an organization’s values and commitments [32]. Organizational identity is what informs a response to the organization’s own question of who we are as well as who they are for those outside the organization [33]. Organizational identity is what defines an organization’s character [34].

We propose that an organization’s mission statement, code of ethics, institutional decision-making process, and leadership structure all present opportunities to incorporate ethical thinking into an institution’s organizational identity. In what follows, we will briefly explain how each of these entities can be structured so as to promote ethical thinking within an organization.

Mission Statements

First, an organization can incorporate ethical thinking into its mission statement. Consider some examples. The Mayo Clinic Cancer Center’s mission is as follows:

Mayo Clinic Cancer Center combines personalized cancer treatment with leading-edge research to provide you with unparalleled cancer care. Our integrated practice brings together a multispecialty cancer treatment team of experts to ensure you get the best care available. Mayo Clinic Cancer Center also offers medical professionals the opportunity to refer and follow patients and to access medical education offered by key specialists [35].

This is an excellent example of how an organization’s mission statement can help incorporate ethical thinking into its organizational identity. For instance, from the above statement, one can clearly identify this institution’s response to the ethical challenge of balancing the goals of both research and patient care. This institution, via their mission statement, is committed to a personalized approach to patient care that integrates cutting-edge research into the patient’s treatment plan. This sort of mission statement thus allows the institution to define itself in direct response to the sorts of ethical challenges that cancer care institutions face.

Cancer Treatment Centers of America offers another example of how an institution can incorporate ethical thinking into their mission statement. Their mission is stated as follows:

Cancer Treatment Centers of America is the home of integrative and compassionate cancer care. We never stop searching for and providing powerful and innovative therapies to heal the whole person, improve quality of life and restore hope [36].

Here, one can again see how a mission statement can help to shape organizational identity as we can again clearly identify this institution’s response to the ethical challenge of balancing the goals of both research and patient care. This institution, via their mission statement, is committed to research aimed at treatments that improve quality of life and support a whole-person approach to cancer care. While this mission statement differs from that of the Mayo Clinic Cancer Center in subtle but important ways, the point here is that ethical thinking can be easily incorporated into the mission statement of an institution. This allows cancer care institutions to formulate their organizational identity in ways that are responsive to the sorts of ethical challenges that are distinct to cancer care.

It is also worth noting some of the differences that exist between the mission statements of health care organizations that focus on cancer care and health care organizations more generally. For example, let’s compare the above mission statement from the Mayo Clinic Cancer Care Center with the mission statement of the Mayo Clinic qua provider of general health care services. Their mission is to inspire hope and contribute to health and well-being by providing the best care to every patient through integrated clinical practice, education and research [37]. This mission reflects similar values and commitments when compared to the mission statement of the Mayo Clinic Cancer Care Center, but there are also some noteworthy differences. The mission of the Mayo Clinic Cancer Care Center makes the integration of cutting-edge research and multispecialty perspectives into patient care a focal point of its value commitments. The role of research in patient care is mentioned but not emphasized in the mission of the Mayo Clinic. This subtle but important difference reflects the fact that balancing research goals with the need to provide quality patient care is a distinct and more frequent ethical challenge in cancer care.

Mission statements can also help cancer care institutions to address the challenge of balancing the international scope of cancer care and research with the localized nature of individual care centers. For example, the mission statement of MD Anderson Cancer Center is

to eliminate cancer in Texas, the nation, and the world through outstanding programs that integrate patient care, research and prevention, and through education for undergraduate and graduate students, trainees, professionals, employees and the public [38].

Here, one can clearly identify a commitment to providing cancer care, research and prevention, and educational opportunities at both local and global levels. This commitment, in turn, is reflected in MD Anderson’s efforts to expand its reach into the surrounding areas of Houston, where the main campus is located, and into other parts of both the United States and the world via various partnership arrangements with existing health care entities in those areas.

One might ask how incorporating ethical thinking into an institution’s mission statement can give rise to ethical thinking at the level of institutional decision making. To see how this might work, consider the following example. Suppose that a cancer care institution is faced with a decision about whether to participate in a multicenter clinical trial. There are many questions that will need to be answered before a decision can be made and one of those questions may be Is this consistent with the sort of organization that we strive to be? For someplace like the Mayo Clinic Cancer Center which identifies the integration of cutting-edge research into personalized cancer care as a key component of their mission, answering this question may require determining whether the experimental arm of the proposed clinical trial can be successfully integrated into the patient care that is typically provided. For Cancer Treatment Centers of America whose mission emphasizes the importance of research that will improve patient quality of life, answering this question may require determining whether the experimental regiment in question is likely to do so or whether it is consistent with the whole-person approach to cancer care that is a significant component of their stated approach to research. Consistency with an organization’s mission is not the sole determinant in these sorts of institutional decisions nor is it the sole ethical consideration. However, having a well-formulated mission statement that incorporates ethical thinking can provide helpful ethical guidance when tasked with these sorts of institutional decisions.

Finally, we note the importance of a mission statement that is individualized to the entity whose organizational identity it is intended to express. We have here focused on large, internationally focused cancer care centers with commitments to patient care, research, and education. These sorts of entities will, by their very nature, define themselves in terms of mission statements that reflect and balance these commitments. However, smaller, more regionally focused cancer care institutions may be better served by missions that emphasize their commitment to patient care within the area that they serve. Oncologists in private practice, or who are part of a medical group with other physicians, may be best served by mission statements that reflect their own values and commitments, whatever they may be. Oncologists who practice within an institution that is not explicitly devoted to cancer care may need to adopt an interpretation of their organization’s mission that fits the distinctive demands of cancer care. The point here is that while we have focused on ways that large-scale, research-focused cancer care institutions can utilize mission statements to integrate ethical thinking into their organizational identity, one should not infer that only these sorts of institutions can utilize mission statements in this way. Mission statements are a useful tool for integrating ethical thinking into an organization's identity. This is rue no matter the size, scope and commitments of the organization.

Codes of Ethics

An organization can also incorporate ethical thinking into its organizational identity by developing and adopting a code of ethics. One of the best examples of this is the code of ethics for The University of Texas MD Anderson Cancer Center. There are several reasons that this is an especially good example of incorporating ethical thinking into a cancer care institution’s organizational identity. First, despite the code being just over two decades old, it was among the first such endeavors of its kind, and it continues to be something of a rarity among cancer care institutions [39].

Second, the code of ethics for MD Anderson Cancer Center was developed with explicit acknowledgment that cancer is, in many respects, a unique disease [39]. This acknowledgment helped to shape one of the primary aims of the code which is to confront professionals with the need to think seriously about what they perceive as unique problems and thereby arrive at thoughtful solutions rather than to simply react emotionally or selfishly [39]. By acknowledging the uniqueness of cancer and cancer care from the outset, MD Anderson’s code of ethics is well-situated to provide ethical guidance for the institution, especially when they are faced with the ethical challenges that are distinct of cancer care.

Third, the code of ethics for MD Anderson Cancer Center is largely a product of public discourse and community engagement, rather than top-down policy making. Its initial content was formulated by a committee of institutional representatives comprised of individuals from across the institution. Upon the completion of an initial draft, the draft document was presented to the community for comments and a subsequent revision was the focal point of a conference featuring experts from the field of bioethics. The final version took account of all this input, resulting in a document that is responsive to the concerns of the institution and its various constituencies, the field of bioethics, and the surrounding community. Because it incorporates input from the community, MD Anderson Cancer Center’s code of ethics can be easily endorsed by that same community and readily utilized as a decision-making tool. Emphasizing community involvement is another way to respond to the ethical challenge of meeting the cancer care needs of a local population while maintaining an international focus.

Finally, the MD Anderson Cancer Center’s code of ethics is not simply a code of conduct for its employees. A code of conduct is a set of rules of behavior for a group or organization which individuals must agree to abide by if they wish to participate in that group or organization. A code of ethics, in contrast, is a set of shared values and commitments which provide a standard against which one’s actions can be measured. A code of ethics allows for a shared vision of an organization’s character. A code of conduct merely informs the individuals within an organization of how they are expected to behave. One can be compliant with a code of conduct simply by following its mandates; one need not endorse any particular value or commitment. Adherence to a code of ethics, in contrast, requires that one invest oneself in a shared vision of both oneself and the organization in which one participates. For example, a health care institution’s code of conduct may require that all employees protect confidential patient information in accordance with Health Insurance Portability and Accountability Act (HIPAA) regulations. Contrast this sort of requirement with one of the principles of the MD Anderson Cancer Center’s code of ethics which states that patients justly expect personal information to be confidential, yet their medical records are accessible to all health-care providers. All information must be recorded responsibly. Access also confers a moral obligation. Access must be justified and not harmful to the patients’ interests [39]. Adhering to this sort of expectation involves more than simply being compliant with a particular set of regulations; it also requires that one adopt a particular perspective about the importance of patient confidentiality. In doing so, a code of ethics can help to shape organizational identity as well as individualized instantiations of that identity.

A code of ethics also provides the institution with a decision procedure for ethical decision making because the commitments articulated by an institution’s code of ethics can be readily transposed into evaluative standards. For example, another principle of the MD Anderson Cancer Center’s code of ethics states that cancer therapy and research are expensive endeavors demanding conscientious stewardship; however, financial considerations should never dictate the quality of care offered to each patient [39]. Now, suppose that an institutional decision must be made regarding the provision of uncompensated care, specifically whether uncompensated care should ever be provided. The above principle can be readily transposed into an evaluative standard that can help answer this question. Given their commitment to not allowing financial considerations to dictate the quality of care that is offered to patients, MD Anderson clearly seems to be, and in fact is committed to a policy of providing uncompensated care in at least some cases [40]. In this sense, the institution’s commitment to not allowing financial considerations to dictate the quality of the care that is offered to patients gives rise to an evaluative standard that allows the institution to determine what their policy regarding uncompensated care ought to be which is to provide the same quality of care to all patients and to face economic challenges of current and prospective patients in a just manner.

While we have again focused our discussion on a large-scale cancer institution with a strong research focus, it is worth emphasizing that other types of cancer care institutions might also utilize something like a code of ethics as a mechanism for integrating ethical thinking into their organizational identity. For smaller scale institutions, developing a code of ethics may involve a similar version of the same process utilized in the development of MD Anderson’s code of ethics. However, an organization of almost any size can identify a set of shared values and commitments and codify them within a publicly available document, and it is this identification and public expression of shared values that is the essential function of a code of ethics. Even if the sort of development process discussed here is not appropriate for a particular cancer care institution, the key features of the MD Anderson Cancer Center’s code of ethics, especially its focus on the unique nature of cancer care, its emphasis on shared values and commitments over rules that govern individual conduct and its insistence on community involvement can be appreciated, and where appropriate, duplicated by a cancer care organization of almost any size and scope.

Institutional Decision-Making Process

Thus far, we have claimed that an organization’s mission statement and code of ethics are two of the mechanisms one might look to in attempting to incorporate ethical thinking into an institution’s organizational identity. However, less formal mechanisms are also important for this purpose. A cancer care institution might, for example, incorporate ethical thinking into its organizational identity by integrating certain ethically grounded evaluative standards into its decision-making process. Institutional decision making requires that financial, legal, political, and social considerations be considered as part of the institutional decision-making process. We propose that there are also certain ethically focused evaluative standards that ought to play a role in the institutional decision making of all cancer care organizations. Let’s briefly consider each of these standards and discuss how they can help guide institutional decision makers toward an ethically supportable course of action.

The Consequentialist Standard

Consequentialism is an ethical perspective which states that the ethically required course of action is the one that gives rise to the best overall outcome, from an impersonal point of view [1,41–43]. From an institutional perspective, one should not resort to an entirely consequentialist ethical analysis, since other sorts of considerations also bear on the ethical obligations of institutions. However, we contend that institutions ought to take account of the potential consequences of their decisions, particularly the harms and benefits that may follow from various courses of action. What are the harms and benefits of this course of action? is an ethical question that institutions ought to be asking themselves prior to adopting a particular policy or making an institutional decision.

The Deontological Standard

Deontology is an ethical perspective which states that there are ethical obligations, sometimes referred to as duties, which must be met irrespective of the consequences that may follow from adhering to them [1,44,45]. Further, while not all deontologists agree with this, it is generally held that the ethical obligations deontologists recognize as duties give rise to corresponding rights claims. For example, the duty to respect the autonomy of others corresponds to a right of noninterference. If I have a duty to respect your autonomous choices, you thereby have a right to not be interfered with when you make and act on those same choices.

Many prominent approaches to bioethics are, in fact, deontological perspectives. For example, the highly influential, principle-based approach to bioethics articulated by Tom Beauchamp and James Childress is often regarded as largely a deontological approach [6]. What is more, the notion that there are certain ethical obligations that must be met irrespective of the consequences that may follow in a particular case is a significant component of the common morality that is the basis of many theoretical approaches to bioethics [6,8]. As such, a cancer care institution’s decision-making process ought to incorporate considerations of ethical duty as a relevant component of that organization’s approach to institutional decision making. Here, the relevant ethical question is what are our duties in this case? or what rights are at stake, and for whom? We might also consider how various courses of action might affect the exercise of individuals’ rights in the future. Finally, the deontological standard requires that we consider whether a particular course of action or policy amounts to making an exception of ourselves. Duties as well as their corresponding rights are thought to be equally applicable to all moral agents. As such, to fail to adhere to a duty to which we hold others, or violate a right that we claim for ourselves is to violate the deontological standard, since it amounts to making an ethical exception. Here, the relevant ethical questions are what if everyone did this? and "what if someone else did this to