Ethical Challenges in Oncology

Patient Care, Research, Education, and Economics

Colleen Gallagher, Michael Ewer

• Publisher: Academic Press
• Year: 2017
• Print ISBN: 9780128038314
• eBook ISBN: 9780128039014
• Topic: Medicine
• Subtopic: Oncology

Ethical Challenges in Oncology: Patient Care, Research, Education, and Economics covers a wide variety of topics and viewpoints about ethical issues that arise in oncology throughout the full cancer care continuum. This book provides a holistic view on oncology ethics, incorporating the knowledge and expertise of authors from various departments and oncology specialties within the University of Texas MD Anderson Cancer Center.The first section focuses on the ethical issues associated with treating cancer patients. Next, the ethical challenges associated with oncology research, including funding, regulation, subject selection and the big picture are explored. The third section covers ethical issues associated with education in oncology as it reflects both past and future trends in developing proficient health care providers, patients and even executives. Final sections concentrate on the ethical dilemmas associated with the economic repercussions of oncology, offering thoughts on how to alleviate the ethical consequences that can arise from the global effects of cancer and cancer treatment.Each chapter includes discussion topics, answers pertinent questions and provides an ethical framework for problem- solving in each scenario. The topics uncover the ethical apprehensions and problems associated with oncology research and practice in order to determine best practices as well as provide guidance for all parties involved.- Offers a diverse range of topics and viewpoints about ethical issues that arise in oncology- Provides direction by bringing real issues to the forefront- Contains a truly ethical approach on problems as broad as research, finance, appropriateness of care, and professional education

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 instit...

Table of contents

• Cover image
• Title page
• Table of Contents
• Copyright
• List of Contributors
• Foreword
• Introduction
• Chapter 1. Ethics and Organizational Identity in a Cancer Care Setting
• Chapter 2. Experience Matters: A Partnership Between Patient and Physician
• Chapter 3. Patient Experience and End-of-Life Care: A Discussion and Analysis of Four Patients
• Chapter 4. Ethical Issues for Children With Cancer
• Chapter 5. Ethical Issues in Cancer Survivorship
• Chapter 6. Integrative Oncology and Ethics
• Chapter 7. Clinician Experience: Some Current Ethical Considerations
• Chapter 8. The Ethical Imperative of Providers to Engage Patients and Families in Improvement
• Chapter 9. Ethical Considerations in Human Subjects Research: Emerging Issues in Cancer Research
• Chapter 10. Ethical Concerns When Cancer Patients Become Human Research Participants and Are Treated on Clinical Trials
• Chapter 11. Training Current and Future Leaders
• Chapter 12. Ethics in Cancer Patient Education
• Chapter 13. Commercialism in Cancer Care
• Chapter 14. A Perspective on the Cost of Cancer Care
• Chapter 15. Mergers, Acquisitions, and Consolidations in the Health-Care Industry: Does Bigger Have Ethical Consequences?
• Chapter 16. Legal and Compliance
• Chapter 17. Diversity and Health Care
• Chapter 18. An Ethical Framework for Disclosing Individual Genetic Findings to Patients, Research Participants, and Relatives
• Chapter 19. Ethical Issues of Cancer Center Administrators
• Chapter 20. Ethics and Information Technology
• Index