"Heteronomy," a Greek word, means being ruled or governed by others. "Autonomy," on the other hand, means being self-governed. In The Perversion of Autonomy: Coercion and Constraints in a Liberal Society (2003), bioethicists Willard Gaylin and Bruce Jennings describe the typical use of the term autonomy as "perverted" to convey how distorted the ethically important principle of autonomy has become -- likely unintentional, but distorted nonetheless. Gayling and Jennings are also concerned about the tendency for individual autonomy to trump other liberal and communal values associated with health care, including that provided for adolescents.
]]> Canadian philosopher Susan Sherwin points out that contemporary health care practices actually rely on agency, not autonomy. In a chapter published in Readings in Health Care Ethics (2000), she defines agency as the exercise of reasonable choice. Amenable to the real-world demands of hospitals, community clinics and individual therapist practices, agency is reflected in standard informed consent processes. A credible process includes adequately informing the client, ensuring that she is not being pressured or manipulated, verifying that she has the requisite level of cognitive capacity and tailoring these to the decision at hand.With this said, however, ethics-related debates about adolescents in need of health care have been long-standing and loud. Although adult treatments may be ineffective or even harmful for young people, opinions differ about the legitimacy of adolescent consent, rather than parental consent, to participate in much-needed research. How much is "enough" capacity? How free are youth from parental expectations and demands? And as popular media stories highlight, opinions differ about adolescent consent for newly offered interventions that involve substantial discomfort and negative side-effects, but that may prevent foreseeable death (e.g., for refractory cancer).
Today's favoured version of autonomy is inadequate and inaccurate for health care purposes on several counts. First, it presumes that patients and clients are accustomed to decision-making and are articulate about their values and priorities. Second, it envisions adults as independent and self-sufficient individuals: "I decide for myself by myself." Third, autonomy assumes that patients and clients have more control over their treatment and care than they actually have. Fourth, autonomy hides the fact that treatment decisions are made in the context of certain arrangements that are beyond "the individual," including social (e.g., permitted sexual activities, familial norms), political (e.g., legislated age of majority, governmental policing/safety powers), and economic (e.g., private versus governmental health care coverage) arrangements.
In response to these limitations, Sherwin developed the concept of relational autonomy. Since autonomy is about authenticity and self-governance, a sensible starting point is to understand the human self. In the case of relational autonomy, Sherwin holds that we are all relational selves. We are inherently and inescapably social beings who are significantly shaped and modified within a web of interconnected (often conflicting) relationships. Throughout our lives, we are interdependent, not independent, and we rely on others; we are not self-sufficient. This is language very different from what we typically use and hear.
Relational autonomy fits especially well with adolescents-becoming-adults. The transition from adolescence to adulthood is, almost by definition, tumultuous. In a 2006 article in the Bulletin of the Menninger Clinic, psychiatrist Dr. Edward Poa notes that adolescents are unsure about what they want and tend to be experimental, but have few resources. Their relationships are uncertain, changing and many. Transitioning adolescents also tend to be sceptical about authority, which is important, given the involvement of parents, clinicians and social service agents in health care settings.
Swartz and colleagues examined the current phenomenon in which young adults who have completed their schooling continue to receive substantial financial and housing assistance from their parents, regardless of whether these young adults have a health problem or not. The study, published in a 2011 issue of the Journal of Marriage and Family, concluded that "parents [serve] as collaborators in their children's transition to adulthood, acting as scaffolding systems to help young people reach their goals and as safety nets to catch them before they fell too far."
In a 2009 study in the Journal of Children and Family Studies about the parents of transitioning adolescents with mental health difficulties, Jivanjee and colleagues identified a common lament among the 42 family members they interviewed: it was about the "bluntness" of the law, where various rights are legally gained on an arbitrarily chosen birth year (e.g., able to marry or leave the parental home at age 18, drink alcohol at age 19), despite the fact that the transition from adolescence to adulthood takes years. Many parents spoke of their hopes for their child to be included into different communities and groups, tempered by their worries about continued public stigma and discrimination. The parents also noted that they, too, were transitioning from parents-with-teenagers to parents-with-adult-children. This meant they needed to be treated differently as well.
The favoured version of individual autonomy is outmoded for health care settings. Relational autonomy is the stronger version because it betters reflects how and why we actually make particular decisions. It is especially meaningful for transitioning adolescents because it accepts the uncertainty, variability and plurality of relationships and their influence on our evaluations of and decisions about health care options.
]]>It's a good question because it's a term I've heard about for decades, going as far back as my first career in the oil industry. And when I've taught business ethics and organizational ethics courses to university students, they frequently defended their ethical choices by appealing to integrity.
]]> There is general agreement as to what constitutes scientific integrity. Scientific inquiries are expected to be honest, accurate and reliable and to "go wherever the data leads." Scientists must persevere and remain personally impartial. In a somewhat similar vein, professional integrity usually means that a person conscientiously acts in accord with behavioural and attitudinal norms "at the heart" of that person's particular profession.Defining personal integrity, on the other hand, has generated more debate. In Ethics: The Heart of Leadership, Avolio and Locke define personal integrity as "loyalty to one's rationale judgment in action" (Praeger, 2004). In her book Integrity: Doing the Right Thing for the Right Reason, Barbara Killinger put it this way: "Integrity is a personal choice, an uncompromising and predictably consistent commitment to honour moral, ethical, spiritual, and artistic values and principles" (McGill-Queen's University Press, 2007).
What do both definitions have in common? Loyalty and uncompromising commitment. Judgment and choice. One[self] and the personal. This means that acting with integrity is deliberate, voluntary and "mine." It is never fickle (i.e., fads and expediency are unimportant).
But some writers think that this definition of personal integrity falls short. A worrisome shortcoming is the sense of finality and possible rigidity. Being rigid may result in what is known as "moral indulgence," where the person privileges their conscience and "ability to sleep at night" above all else (moral indulgence and "having clean hands" are important ethical notions, but I can't delve into them here). Technology and science continually challenge the status quo. Economics, global or local, affect what communities can do and hope to do. Accordingly, group and individual circumstances can change gradually or dramatically. But change they do (As Heraclitus held long ago: The only constant in the world is change).
Avolio and Locke's definition of personal integrity also includes the worrisome presumption that our individual knowledge and experiences are enough. Yet our knowledge and experiences are inescapably limited and our reasoning abilities alone, regardless of how proficient, cannot compensate adequately for such limitations.
In Integrity and the Fragile Self, Cox, La Caze and Levine provide a definition that addresses these shortcomings. For them, personal integrity "involves a capacity to respond to changes in one's values or circumstances, a kind of continual remaking of the self, as well as a capacity to balance competing commitments and values and to take responsibility for one's work and thought" (Ashgate, 2002).
Cox, La Caze and Levine's characterization of integrity seems stronger because it refers explicitly to the self. This opens the door for thinking about "the person I believe myself to be" and "the person I hold myself to be for other people." The reference to work and thoughts fits nicely with expectations that our deeds should fit with our thoughts and words. Hypocrisy or an absence of integrity is routinely described as "not walking the talk" or as being "all talk." Cox, La Caze and Levine also recognize the everyday reality of competing priorities.
I think the strongest characterization of integrity is captured by Stephen Carter in his book Integrity (HarperCollins, 1997): "It requires three steps: 1) discerning what is right and what is wrong; 2) acting on what you have discerned, even at personal cost; and 3) saying openly that you are acting on your understanding of right from wrong."
Carter's writing style is much like an engaging conversation in which he tries to figure out what integrity really is. It is refreshing that he admits that he personally finds it challenging to always think, talk and act with integrity. We are all too human: We can be tired, angry, afraid, stubborn or jealous. We can feel disrespected or ignored, or just want some immediate enjoyment.
Let's examine each of Carter's three steps: First, by "discerning what is right and what is wrong," Carter means being aware of what's really and fully involved in a particular question or situation and what are relevant ethical values and disvalues from different viewpoints. In other words, right and wrong are not determined by my wishes, desires or emotions.
Second, knowing what's most ethically defensible is insufficient. Acting or doing is necessary. And sometimes the strongest option will result in some type of disadvantage or loss to oneself. Maybe a dear friend will be disappointed in me, a respected colleague will decide not to work with me again, or I will have to develop a new skill or replace an outdated or narrow concept I've relied on.
Third, accountability matters. Apologizing, remaining silent or in the background may be humanly understandable responses, but they don't demonstrate integrity. Carter's formulation of integrity explains why we admire people who act with integrity so much: They work conscientiously to figure out what is the most ethically defensible response in a particular situation or question. They act despite possible risk to their own self-interests, and they openly "own" what they've done.
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Barbara Russell, bioethicist at the Centre for Addiction and Mental Health in Toronto, answers ethics questions that arise in the mental health and addiction fields. She is connected with the University of Toronto's Joint Centre for Bioethics and heads the neuroethics interest group of the Canadian Bioethics Society. She is also a contributing editor to the Journal of Ethics in Mental Health.
Do you have an ethics question for Dr. Russell? Submit questions to be considered for this column to CrossCurrents editor Hema Zbogar at hema_zbogar@camh.net. Please omit personally identifiable health-related information in order to respect people's privacy and follow privacy legislation.
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Barbara Russell, bioethicist at the Centre for Addiction and Mental Health in Toronto, answers ethics questions that arise in the mental health and addiction fields. She is connected with the University of Toronto's Joint Centre for Bioethics and heads the neuroethics interest group of the Canadian Bioethics Society. She is also a contributing editor to the Journal of Ethics in Mental Health.
Do you have an ethics question for Dr. Russell? Submit questions to be considered for this column to CrossCurrents editor Hema Zbogar at hema_zbogar@camh.net. Please omit personally identifiable health-related information in order to respect people's privacy and follow privacy legislation.
Four ethics-related considerations stand out for me. The first consideration connects with one of my favourite pieces of writing about ethics. Arthur Frank, a sociology professor at the University of Calgary, has developed deeply insightful and compelling work about personal illness narratives and relationships between clients and patients, their families and health care professionals. Frank's article "Ethics as Process and Practice," published in 2004 in the Internal Medicine Journal, begins by examining the kinds of health or treatment goals or outcomes we decide to commit to.
In terms of the planned PPAO move, a more co-ordinated, patient-centred continuum of care was the initially identified goal. Patient-centredness is inarguably ethically desirable in any health care context. However "more co-ordinated" can imply different things to different people: for example, less waiting, simplified paperwork, less duplication, fewer gaps, greater efficiency or reduced direct costs. Each of these can have different implications for stakeholders. Therefore, a second ethics-related consideration centres on fairness: understanding which stakeholders gain and lose what from a possible change to the PPAO reporting relationship and whether this constitutes a fair distribution of the expected benefits, losses and burdens.
Frank's article examines the kinds of behaviours, interactions and actions we choose in order to achieve our desired goals. In recent weeks, MOHLTC has decided to suspend its plan to move the PPAO so it can obtain and consider stakeholder input. Many criticisms of the initial plan were, I think, about surprise, unilateral-ness and timing. These criticisms may have reflected more deeply felt worries, such as being unaware of dissatisfaction, being unprepared for major change, being taken for granted, inappropriate paternalism, inadequate trust, lost opportunity to propose better options, too little regard for the history of mental health rights and advocacy in Ontario and possible job loss.
Third, the public and social media have raised the issue of conflict of interest and undue influence. The question of appropriately "situating" the PPAO reminds me of the important goal of appropriately situating "ethics specialists" (i.e., a bioethicist or an ethics committee) in order to meet a health care organization's immediate and future needs and challenges. Often these specialists are initially viewed as "the ethics police" or as interlopers into the special relationship between the professional and the client. There has also been debate about whether an "ethics specialist" is more effective when employed by an external entity, such as a local philosophy or theological department, than by the health care facility itself. Identified tradeoffs included no conflict of interest but inadequate understanding of daily practice realities versus deeper practical knowledge but possible perceived/actual conflict of interest.
It is ideal to avoid conflicts of interest, whether perceived or actual. In some situations, a conflict seriously threatens the expected benefits so much that the initiative or project should not proceed because its goals will not be met or its decisions will not be trusted. But in other situations, the benefits may be so significant that disclosing the conflict of interest plus instituting safeguards and monitoring their usefulness makes good sense. A health care exemplar is organ and tissue transplantation: clinicians and teams working with potential donors and their families are proactively and administratively kept separate from those working with potential organ recipients.
The provincial government has funded the PPAO since its inception. Until a few years ago, the government not only funded psychiatric facilities; it also operated several of them (the Penetanguishene hospital was the last to be divested in 2008). Obviously, a status of "quasi-independence" meant that the PPAO has not been completely independent. So what can we learn from the safeguards and processes that have helped to avoid, minimize and manage conflicts of interest between PPAO staff and staff at government-run psychiatric hospitals? If after more input and careful reflection there are good reasons for a new reporting relationship, which safeguards can be readily replicated, which safeguards weren't working well and can be replaced, and which safeguards remain essential but cannot be effectively instituted in the new relationship?
The fourth and last ethics-related consideration I'd like to offer is about advocacy itself. Lightman and Aviram's article about the short-lived Advocacy Act affirms the relevance of past efforts by government offices, community groups, individuals, families and professionals in Ontario to help those who endure discrimination, stigmatization, abandonment or marginalization within our prosperous society or who lack basic resources, fair opportunities, abilities or supportive relationships to attain or sustain a personally meaningful, participatory life. At an ethics committee meeting a few years ago, I suggested that advocacy might not be identical to ethics. Fortunately, my wish to be provocative worked because the ensuing discussion carefully explored advocacy's role compared to that of ethics.
The discussion included the role of hospitals' ethics specialists. Some colleagues in the field believe that the complexity and routine-ness of health care warrants ever-increasing ethics consultations, often to the point of more specialists being employed. I see it differently. The role of ethics specialists is to help increase the knowledge and abilities of clinicians and teams so they engage in "preventive ethics," thereby avoiding ethics-related crises; at the same time, they themselves become more skilful at handling unforeseeable dilemmas. In other words, over time, these professionals and teams should ask for my assistance only for questions that are new, disconcertingly ambiguous or very complex. With respect to advocacy initiatives, then, are there credible and trackable indicators of successful attainment of social justice and individual empowerment (e.g., restored or regained voice, power, participation, resources and opportunities) such that an initiative's primary purpose can be considered, by and large, fulfilled? I wonder if the idea of a new PPAO reporting relationship reflects -- at least in part -- its success over almost three decades in educating and influencing professionals and their institutions, as well as helping individuals gain or resume personal control and authority over their health and well-being and gaining or resuming their own use of various societal supports and protections that are available to every citizen.
]]>This year's Canadian Bioethics Society conference was held for the first time in New Brunswick. So it wasn't surprising that many participants arrived in St. John a few days before or stayed a few days after the conference to enjoy the stunning Bay of Fundy and the province's other delights.
The conference theme was the sustainability of the Canadian health system, which is why the plenary speech was about zombies -- creatures that will not die. Robert G. Evans, a recently retired economist from the University of British Columbia and recipient of the Order of Canada, described the claim that aging baby boomers will overwhelm the health care system as a sort of zombie -- an idea that just won't go away. Using charts detailing the evolution of our health care systems and its costs, Evans argued that costs will increase gradually, but not to the point where the existing system will collapse. I, too, often hear this rhetoric about the looming baby boomer crisis, so Evans caught my attention.
Evans also reminded the audience that every health care dollar spent constitutes somebody's income. We tend to believe that business factors apply to the private side of our health care system, not to the publicly funded side. The "every-dollar-as-income" framing was new to me. It's useful because it helps identify more clearly the competing interests influencing the operations and structure of our system. So it's not the incomes of just physicians and allied health workers at issue here; it's also the income of health sciences faculty and employees of equipment, pharmaceutical, information technology and insurance companies, and so on. The take-home message for me from this challenging talk was that we need to understand even more deeply how our health care system really works, especially since the federal-provincial health accord regarding Medicare is up for re-negotiation in 2014.
In another session, Kenneth Kipnis, chair of the Philosophy Department at the University of Hawaii, discussed an interesting issue for research ethics. Kipnis asked whether researchers whose studies include pregnant women (admittedly, not very common) have certain responsibilities to the person who was a fetus during the experiment, what Kipnis calls "former fetuses." He argued that it is not enough ethically to simply rely on the woman or her partner to tell the child about the mother's participation in the study. For instance, the parent may decide not to tell the child, or the parent may have died or been cognitively disabled before the child was old enough to understand what happened and the possible risks to the child resulting from participation in the research.
Kipnis suggested creating a registry (with appropriate privacy safeguards in place) of research participants who were pregnant that could later be accessed by individuals whose mother or other parent cannot answer questions they may have.
Lori D'Agincourt-Canning, an ethicist at the Children's and Women's Health Centre of British Columbia, thoughtfully revisited responses to youth with substance use problems show are HIV+ and who engage in activities that put others at risk of acquiring the virus (e.g., having unprotected sex, sharing needles). She raised many ethically relevant points, but I want to highlight one issue in particular: emerging research is showing slower-than-expected maturation of the brain's frontal lobe area, which involves social, emotional and reasoning abilities that help determine goal-achieving behaviours.
This research, using new neuroimaging techniques such as PET scans, appears to support what most parents of teenagers already believe: teenagers are unable to reliably make "good enough" decisions. In fact, it seems that maturation of the human brain ends in our early 20s. I wonder how this research, if these findings hold over time, might affect the consent procedures of pediatricians and pediatric facilities, since there is no legally specified age of consent for treatment in Canada. With this said, although health care is not the only socially regulated activity at issue, what about existing age minimums for driving, voting, enlisting and marrying? This is a good example of neuroethics: how new technology vis-à-vis the brain is challenging foundational social, legal and ethical values and norms.
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Barbara Russell, bioethicist at the Centre for Addiction and Mental Health in Toronto, answers ethics questions that arise in the mental health and addiction fields. She is connected with the University of Toronto's Joint Centre for Bioethics and heads the neuroethics interest group of the Canadian Bioethics Society. She is also a contributing editor to the Journal of Ethics in Mental Health.
Do you have an ethics question for Dr. Russell? Submit questions to be considered for this column to CrossCurrents editor Hema Zbogar at hema_zbogar@camh.net. Please omit personally identifiable health-related information in order to respect people's privacy and follow privacy legislation.
Our beliefs about the interactions of judges and lawyers and the operations of courts can be heavily influenced by media portrayals. For instance, court procedures are often described as adversarial because only one party wins, usually at the expense of the other party, and the courtroom atmosphere is painted as hostile. However, various procedural rules or checks and balances exist to try to preserve fairness and deflect the influence of power and human shortcomings, such as dishonesty or malice.
]]> Yet the law's psycho-emotional impact is not limited to winning or losing, and it does not need to be accidental or unimportant, according to law professors David Wexler and Bruce Winick at the University of Arizona and the University of Miami, respectively. In the late 1980s, they developed the concept of therapeutic jurisprudence, which they describe as "an interdisciplinary method of legal scholarship that aims to reform the law in an effort to [intentionally] improve the psychological and emotional well being of those affected by the legal process" (International Journal of Law and Psychiatry, 2010).The concept of therapeutic jurisprudence often underlies the creation of mental health and drug treatment courts, where "care" comes in the guise of psychiatric and psychological treatment. Therapeutic jurisprudence, however, seems to have generated quite a bit of debate about its validity and usefulness, not just for mental health and drug treatment courts, but also for family and criminal courts, and even for coroners' work. As I read about the concept, it became increasingly clear that part of this ongoing debate involves important ethical questions about when justice and caring are appropriate, by whom and towards whom, and how and when they are inappropriate.
Health care workers, too, face situations in which care and justice co-exist nicely, and in which they do not. In a highly cited chapter in the 2000 book Margin of Error, ethicists George Webster and Françoise Baylis explain moral distress, which has garnered considerable attention in the nursing literature. In medicine, the term "burnout" refers to a similar and well-known experience. Webster and Baylis hold that moral distress occurs when what one believes to be right does not match what one does or what ultimately happens. This incongruence can occur when a health care worker's care of a particular client must be curtailed so that she can care for the other clients waiting to see her--in other words, care versus justice. Moral distress results, too, in a paradigmatic case of clashing values, namely when a client chooses to forego recommended treatment: the clinician is torn between caring about the person's recovery and respecting the person's exercise of a legal and moral right.
In the 1960s and ᾿70s, psychologist Lawrence Kohlberg concluded that boys' moral reasoning tended to be more advanced and nuanced than that of girls. In later studies of young girls, psychologist Carol Gilligan found that girls' insights and reasoning reflected a relational ethic of care in contrast to boys' reliance on an ethic of abstract rules or principles. Gilligan concluded that what these studies revealed were not superior or inferior moral insight and reflection, but meaningful, gendered differences. Interestingly, many drug courts now offer different programs for women and men. Might this difference be justified, albeit only partially, because men and women have different views about what matters morally?
Gilligan's work helped to launch feminist moral theory and bioethics. Associating women with an ethic of care generated much discussion: is this ethic natural and affirmative of women, or is it socially imposed and oppressive? Another question subsequently arose: can a care ethic, with its focus on actual relationships and people close at hand, and a justice ethic, with its focus on fairness and impartiality, co-exist harmoniously?
Many academics and advocates of feminist moral theory and bioethics believe justice and care can co-exist. Yet an iconic Western image for justice is a blindfolded woman holding a set of scales. The blindfold signifies impartiality. So it is not surprising that many other academics and advocates conclude that either justice or care will ultimately outweigh or trump the other.
Part of the legal debate about therapeutic jurisprudence, I think, taps into the ambiguity of the words "care" and "caring," an ambiguity that has increased the complexity of everyday health care practices. For instance, "taking care of" is not the same as "caring for" or "caring about." Health care workers, especially in a publicly funded health system, can be expected to take care of someone when he cannot, due to a medical problem. Nevertheless, care of must remain collaborative in terms of the client's or patient's own "role" and preferences and his family's involvement and responsibilities. Caring about someone involves paying close attention to both what matters to her and the person she is; therefore, staff work purposefully to support her own efforts. I'd like to suggest that caring for someone involves a measure of emotional affection and connection that can lead, unfortunately, to professional boundary concerns. Within health care, the word "care" is also invoked frequently in reference to "standards of care," which tend to focus on techniques or procedures.
At a basic level, therapeutic jurisprudence brings justice and caring closer together. How close the relationship should be is an important ethical discussion, conceptually and practically, not just by the judicial and legal staff associated with different court settings, but also by health care teams and programs associated with these courts.
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Barbara Russell, bioethicist at the Centre for Addiction and Mental Health in Toronto, answers ethics questions that arise in the mental health and addiction fields. She is connected with the University of Toronto's Joint Centre for Bioethics and heads the neuroethics interest group of the Canadian Bioethics Society. She is also a contributing editor to the Journal of Ethics in Mental Health.
Do you have an ethics question for Dr. Russell? Submit questions to be considered for this column to CrossCurrents editor Hema Zbogar at hema_zbogar@camh.net. Please omit personally identifiable health-related information in order to respect people's privacy and follow privacy legislation.
It's useful to first define "ethics." In academic circles, "ethics," a Greek word, is usually about the study of individuals' conduct, and "morality," a Latin word, is about such conduct. Sometimes, however, the definitions are switched; at other times, "ethics" and "morality" are considered synonyms. It can be confusing. From my perspective, Accreditation Canada is most interested in what actually happens at a hospital when staff and physicians work with clients and families and when managers, executives, and board members make administrative decisions that affect not only current clients and families, but future clients and families, too.
]]> To define "ethics" for Accreditation Canada's purposes, I suggest focusing on what people should consider "good or bad" and "right or wrong" and how such values should guide their interactions, decisions and behaviour. The word "should" is important here because what people actually value and how they actually behave may or may not be ethically justified. To determine whether pursuing a goal, desiring an object or behaving in a certain way is or is not ethically justified, we have to figure out why the person values something or behaves that way. Is it because they want a good reputation (i.e., they value their own interests and ego) or because they know their perspective may not be definitive (i.e., they value other people's experiences and knowledge)? Is it because they want more money (i.e., so they acted competitively) or because they want to correct an error made by someone with more power (i.e., so they acted bravely)?Accreditation Canada provides some helpful points to explain an ethics framework in its Guide for Developing Qmentum Plans and Frameworks. An ethics framework: (1) is an analytical tool to guide ethical decision-making, (2) defines processes for handling ethics-related issues and concerns, (3) links with the organization's core values and (4) is not a code of ethics. The reason why a framework is not a code is, I think, that codes tend to be a list of "You must do X, must not do Y and are permitted to do Z" statements. These lists typically omit the values that explain or justify these statements. Moreover, the lists tend not to countenance situations that are unclear or situations in which statements will conflict with one another.
An ethics framework should identify ethics-related values that are used in making decisions, as well as guiding everyday interactions with clients, families, colleagues and people external to the hospital. Because people and their communities involve many ethical values, health care involves many ethical values. The framework should also identify a process for making decisions and guiding interactions. The process should include such steps as determining who is responsible and accountable for addressing the issue or answering the question, whose knowledge, experience and perspective needs to be considered, who qualifies as a "special resource" to help address the issue or question (e.g., is there a bioethicist, a research ethics board, a spokesperson for all clients or a professional practice leader?), and how to implement the option or provide the answer in an ethical way.
With this said, though, it is not enough to just figure out the option or response that is ethically strongest. It must be implemented or "done" ethically, as well. Otherwise what is a thoughtful, sound option or response can transform into an unappreciated, ineffective or even damaging one. As Arthur Frank, a sociologist at the University of Calgary, wisely noted in the Internal Medicine Journal in 2004, "Being ethical ... is never anything that one has." Ethics involves more than understanding various concepts or principles. It also involves ethically skilful behaviours. This is why the familiar notion that "having common sense and good intentions" is adequate for ethical interactions and decisions is, I think, simplistic and superficial.
I am often asked, Why is it so important to be explicit about the ethical values that apply to a particular dilemma or question? What is valued ethically differs substantially. For instance, in terms of material and immaterial "situations" or "things," think about how different diverse relationships, having a home and individuals' creativity are. In terms of praiseworthy character traits or virtues, think about honesty versus loyalty versus generosity. The relevance of an ethics-related situation, "thing" or virtue to a specific dilemma or question will vary. Moreover, what a person does - her statements, actions and timing - to be honest will differ from what she does to be loyal or generous.
A ready example of inattention to ethics-related behaviours involves respect and caring, two values routinely emphasized in health care contexts. In my experience, it is not uncommon for health care workers to have difficulty identifying behaviours that demonstrate care for a client (which is not the same as "care of a client") that are dissimilar from behaviours that demonstrate respect for the same client. Yet we know that we can care for a person without respecting him, just as we can respect him without caring for him.
If I had to summarize what an ethics framework for health care settings is in 50 words or less, I would say that it is fundamentally about which ethics-related values are considered important or relevant (i.e., the "what"); health care employees' use of them in their everyday decisions and interactions (i.e., the "how"); and the organization's efforts to ensure these values and processes are well considered and alive.
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Barbara Russell, bioethicist at the Centre for Addiction and Mental Health in Toronto, answers ethics questions that arise in the mental health and addiction fields. She is connected with the University of Toronto's Joint Centre for Bioethics and heads the neuroethics interest group of the Canadian Bioethics Society. She is also a contributing editor to the Journal of Ethics in Mental Health.
Do you have an ethics question for Dr. Russell? Submit questions to be considered for this column to CrossCurrents editor Hema Zbogar at hema_zbogar@camh.net. Please omit personally identifiable health-related information in order to respect people's privacy and follow privacy legislation.
These important questions constitute an everyday opportunity to talk about a commonly used ethical theory: liberalism. Ethics is involved because liberalism is about something many people consider to matter a great deal: freedoms within the context of a community. This means examining what kinds of freedom are inherent in our human nature, what kinds are inherent in communal life, and how much they should be encouraged, permitted, restricted or banned. "Right" and "duty" are ethics-related concepts that help frame such freedoms. Plato's Republic explored and debated the nature of citizens, community and their interrelationship. Listen to election campaigns today and you will hear a similar debate.
]]> Turning to my opening questions about smoking and research, the first step is to figure out what rights are. People can disagree about rights, when, in fact, they are relying on different definitions. Political philosopher Joel Feinberg's description of a right is the strongest I have come across. In a 1970 issue of the Journal of Value Inquiry, Feinberg described a right as a valid claim against another person or other people whose recognition stems from a governing set of moral principles or values.With this said, there are different types of rights, the most familiar of which are moral rights, human rights and legal rights. There can also be organizationally created rights that carry legal or regulatory weight; ready examples are a health care facility's "bill of patient rights" and an airline's "bill of passenger rights." Feinberg's description is about moral rights. A human right is a right whose recognition is based on something very important about all human beings. The two world wars tragically showed what was foundational for all people - how they live and how they co-exist. The United Nations was created as part of the world's recovery; its Universal Declaration of Human Rights sets out essential human rights, such as the right to belong to a nation, to create a family, the right to a basic standard of living, and to rest. Legal rights, on the other hand, are brought into existence by a government through its legislature, regulatory offices and courts. It's possible for a right to be a human right, a moral right and a legal right (e.g., the right of Canadian children to an education).
Rights are everywhere. Why? Because they are powerful. They are powerful because when they exist, someone else has a duty to help fulfill them. It has been debated in political academia whether a right always creates a duty or obligation. Feinberg's definition says yes, as evidenced by the words "valid claim."
What is a duty? To encourage people to pay close attention to the ethical weightiness of these concepts, I routinely distinguish between duties and responsibilities: a duty is something "you cannot not do," whereas a responsibility is something you are ethically permitted to not do, if your reasons are sound and thoughtful. It's possible, too, to create a duty towards another person or group of people. Care is needed when deciding whether to create a duty, because once you have it, you are bound or obligated to fulfill it.
The difference between rights and duties is nicely illustrated in the case of personal health information. Beginning with the concept of general personal privacy, people have a human right of privacy. This is also a moral right and, in Canada and Ontario, a legally protected right. Body and mind are part of one's identity and self and are pivotal to life and living it. Not surprisingly, then, health care workers have a corresponding moral and legal duty to keep clients' personal health information as confidential as possible within the relevant circle of care. This duty can be "relaxed" only with the person's explicit consent or if it is impossible to seek consent, it is an emergency, and breaching confidentiality is the least harmful option.
With this said, is there a right to smoke in Ontario? Not as a Feinbergian right, since no one has a duty to help someone smoke. If, for instance, all the cigarette manufacturers and tobacco growers closed their doors, smokers could not require others' help to remedy the situation. At most, smoking is now a highly constrained activity or freedom.
Ask yourself, is there a right to park your car or bicycle on "Main Street"? Armed with Feinberg's formulation, consider whether you can legitimately ask someone to help you and whether they must help you, if you are unable to park there. If the answer is no, then you don't have a right to park there, maybe just the freedom to do so within any limits set by City Hall. Do you have the right to move to another province? Initially I thought the answer was no, but a look at the Canadian Charter of Rights and Freedoms showed that Canadians do have a legally sanctioned right to unfettered movement.
So do we have a duty, sometime in our lives, to enrol in a medical research study? This question is debated today in the health ethics community and literature. I don't think it would qualify as a human duty, and it's not yet a legal duty in Canada. But do we have a moral duty to participate in research? Two ethical concepts could help justify this duty: reciprocity and fairness. More specifically, virtually all of us have benefited because a minority of other people have risked, even sacrificed, their well-being by participating in research. Since space limits a fuller analysis of this duty, I leave this question to you to ponder.
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Barbara Russell, bioethicist at the Centre for Addiction and Mental Health in Toronto, answers ethics questions that arise in the mental health and addiction fields. She is connected with the University of Toronto's Joint Centre for Bioethics and heads the neuroethics interest group of the Canadian Bioethics Society. She is also a contributing editor to the Journal of Ethics in Mental Health.
Do you have an ethics question for Dr. Russell? Submit questions to be considered for this column to CrossCurrents editor Hema Zbogar at hema_zbogar@camh.net. Please omit personally identifiable health-related information in order to respect people's privacy and follow privacy legislation.
Good movies challenge viewers to see increased complexity in what is known or to witness something previously unknown. The films Inception, Eternal Sunshine of the Spotless Mind and 50 First Dates prompt viewers to question what memories really are, their usefulness and the physiological processes that "make" them.
]]> Recently, and far from Hollywood, medical researchers have begun to investigate the effectiveness of propranolol, a medication used to treat hypertension, in dampening memories that contribute to PTSD and its symptoms. Therapeutic outcomes from this research might include, for instance, starting a regimen of propranolol when a person first arrives in ER to be treated for traumatic injuries or for the effects of physical or psychological abuse. In 2004, however, the President's Council on Bioethics in the United States concluded that the predicted benefits of pharmacologically modifying negative memories would likely be far less than the harms. Psychotherapy was considered a better understood, less risky therapeutic measure.But in 2007, the American Journal of Bioethics (AJB) published an article that re-ignited the debate. Michael Henry and his co-authors challenged the Council's position on the grounds that it was morally too conservative and that the predicted harms were hyperbolic and unjustified. The authors advocated preventive as well as therapeutic use of propranolol for PTSD. Preventive examples would include prophylactically providing the drug to individuals employed in violent or traumatic work, such as emergency first responders.
When a person encounters a serious threat, signals from the brain's amygdala reach the adrenal glands and adrenaline is released. This is part of our "fight or flight" response--blood vessels quickly constrict and respiration and heart rates speed up. For many years, people with certain heart problems have been prescribed the beta-blocker propranolol to staunch the release of adrenaline. Because the amygdala is part of the brain's limbic system that regulates emotions, it is hypothesized that propranolol may also help to block or dampen emotional reactions. This is relevant for PTSD because memory consolidation and storage can be affected by the intensity of accompanying emotion: the greater the negative emotion, the more resilient and powerful the memory.
I'd like to synthesize some pivotal thoughts from both sides of the debate, gleaned from articles published in bioethics journals. Hall and Carter, writing in the same issue of the AJB as Henry, favour using propranolol for memory modification or prevention, noting that people trying to cope with the disabling effects of PTSD may be finding temporary relief from excessive alcohol consumption. Alcohol can be a relatively inexpensive coping option when psychotherapy sessions must be paid privately or when insurance plans reimburse only a few sessions. Therefore, a fair assessment of propranolol therapy for PTSD must include a realistic comparison of its harms and benefits with the harms and benefits of other available strategies.
Other authors question the wisdom of using propranolol. First, our understanding of memory-making or memories themselves remains very limited. Most fear responses are normal and contribute to safety, and many people recover from them in a relatively short time. Do we really think that the drug's chemical properties can be refined enough so that it targets only seriously disabling memories? Bell, also writing in the AJB, reminds us that even now, medicine cannot predict accurately who will develop PTSD after a traumatic event. Moreover, will we be able to determine who will and won't benefit from prophylactic use of propranolol?
The second concern about medicating memories involves recognition that people's emotions are extremely important ethically because they relate to and reveal their personal values, conscience and self-identity. The fact that "Bob" feels rage, not just anger, about his partner's betrayal reflects how precious Bob considers their relationship and how deep has been his loyalty to "Joe." The deep guilt someone feels after exploiting her employer's goodwill affirms that she knows she acted wrongly and this matters a lot to her. Enduring discontent or content can reflect serious dissatisfaction or satisfaction about "the person I have become." Tampering with strong emotional responses may undermine our moral development, commitments and agency too much. This leads into the third concern about pharmacologically blunting or preventing emotion-laden memories.
Just as your emotions are meaningful to you, they are also meaningful to other people. Several writers in the articles I read worried about the possible effect of dulling or preventing negative emotional reactions to, for instance, being psychologically abused or sexually assaulted. Other people might not appreciate the seriousness of this behaviour if medicated victims* do not experience strong negative emotions. Victims' semantic memory, which focuses on the event's details or "facts," would not be affected. But their episodic memory, which is about the lived and embodied experience of the event, would be. Loss of individual emotional memories could change a society's expectations regarding the rights and duties of its citizens.
I've presented here some of the ethics-related complexities of using propranolol to prevent or treat traumatic memories. The researchers and ethics specialists whose work I read on this subject all seem to support efforts to increase the number of therapeutic options that clinicians can offer people seeking relief from PTSD's damaging symptoms. Propranolol may eventually prove to be one option, but so may other psychotherapeutic techniques.
* Some people prefer the term "survivor" to "victim." I use "victim" here to reflect the disabling symptoms of PTSD.
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Barbara Russell, bioethicist at the Centre for Addiction and Mental Health in Toronto, answers ethics questions that arise in the mental health and addiction fields. She is connected with the University of Toronto's Joint Centre for Bioethics and heads the neuroethics interest group of the Canadian Bioethics Society. She is also a contributing editor to the Journal of Ethics in Mental Health.
Do you have an ethics question for Dr. Russell? Submit questions to be considered for this column to CrossCurrents editor Hema Zbogar at hema_zbogar@camh.net. Please omit personally identifiable health-related information in order to respect people's privacy and follow privacy legislation.
Is it ethical for employees of mental health and addiction programs to join big-prize lottery pools, perhaps even buying a ticket every week?
A second ethics point to consider is one that I have learned from colleagues in the Problem Gambling Service at CAMH -- that is, the importance of knowing the different forms of gambling, the impact of advertising and their combined effects in terms of risks and allure. For instance, quick-pick or instant-win lottery tickets are particularly enticing for individuals whose gambling is damaging their significant relationships, employment, self-respect, and peace of mind.
A third point to think about is that deciding whether or not to buy weekly lottery tickets falls within the personal realm of our daily lives and interests. Organizing a shared ticket at work brings what is private and personal into what is public and work-focused. This personal activity must not become a new norm for the group because someone who decides not to participate is "marked" and left out of the everyday flow and conversations of the workplace. The ticket-buying group becomes, in essence, a club or clique. I use the word "clique" deliberately because many adults still remember the hurtfulness and fickleness of high school cliques. This dynamic can develop around any personal activity that takes place at work, whether it's lunch-time bridge on Tuesdays or rotating who is expected to bring a treat to the Friday morning meeting.
It's contradictory, too, to tolerate or adopt a "don't ask, don't tell" approach regarding an activity that can stigmatize and exclude in the very workplace that publicly advocates eliminating stigma and exclusion of people with mental health or addiction issues. Similarly, the workplace must not be a triggering environment for clients who have a gambling problem or who are at risk of developing one.
The final ethics consideration also stems from the fact that lotteries are a private activity. If a group decides to share in the weekly ticket purchase, it shouldn't be called something like the "XYZ addictions ticket" or "Depression Team ticket" because that links the employer's name (i.e., XYZ) or the work group's name (i.e., Depression Team) with something the employer has not approved. This relates to ethically worrisome conflicts of commitment and conflicts of interest because work time is being used and the publicly funded, health-promoting organization's public profile or reputation is at risk. Most employers have developed policies or guidelines of some kind to proactively identify and resolve these kinds of conflicts and to promote professional interactions throughout the organization.
In the end, it's ethically best and pragmatically wisest to organize a shared lottery ticket on personal time, in personal space. However, if you decide to organize it at work, you should consider the points I've raised to guide what they do to ensure that your colleagues and your work environment aren't harmed and that the activity could not be perceived as having employer approval or support.
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Barbara Russell, bioethicist at the Centre for Addiction and Mental Health in Toronto, answers ethics questions that arise in the mental health and addiction fields. She is connected with the University of Toronto's Joint Centre for Bioethics and heads the neuroethics interest group of the Canadian Bioethics Society. She is also a contributing editor to the Journal of Ethics in Mental Health.
Do you have an ethics question for Dr. Russell? Submit questions to be considered for this column to CrossCurrents editor Hema Zbogar at hema_zbogar@camh.net. Please omit personally identifiable health-related information in order to respect people's privacy and follow privacy legislation.
Several years ago, I attended a mental health conference in Edmonton as a newly minted bioethicist. The provincial health minister participated in the opening session. He asked the audience, comprised primarily of community-based professionals, what they thought would most benefit people with mental health issues. I thought "more professionals" or "improved medications" would be the popular reply. Instead, people called for more and better housing.
]]> Feminist philosopher Nel Noddings points out that answering the question "Where do you live?" can be accompanied by pride, contentment, ambivalence, apology or embarrassment. Underlying this range of reactions are often-overlooked ethical differences between shelter, housing and home."Home," he mocked gently.
"Yes, what else but home?
It all depends on what you mean by home.
Of course he's nothing to us, any more
Than was the hound that came a stranger to us
Out of the woods, worn out upon the trail."
"Home is the place where, when you have to go there,
They have to take you in."
"I should have called it
Something you somehow haven't to deserve.
In their 1999 book The Ethics of Homelessness, Patricia Ann Murphy and David Schrader use this ethical concept of place. Although people and objects take up space, this is not the same as having a particularized space. Murphy describes place as "a space ... invested with human significance and understanding." If a person or object isn't in its place, they are missed or considered lost. When we create a place at our dinner table, we are expecting a particular person to join us. Designating a place for something or someone acknowledges having value.
Using one of Murphy's examples, recall the last time you walked up to a crowded elevator and the occupants reconfigured the space by standing more closely together. They created a place for you with them and to help serve your purpose. Feeling "out of place" is uncomfortable and we try to leave as soon as possible to go where we do belong.
Belonging isn't emphasized enough in our discussions about assisting people with mental health and addiction issues. Murphy worries that not having a place diminishes personhood because so much of our shared lives and conversations involve particular spaces, that is, places. Noddings is similarly concerned because home is "a place in which and from which one claims an identity."
Schrader emphasizes autonomy and privacy vis-à-vis home. In terms of autonomy, not having a home undermines development and exercise of our moral personality and civic personality. Homes and deep relationships typically go hand in hand, and home is a place where one influences who is permitted to enter, when, and what happens there. Having a place within a community carries mutual responsibilities: neighbourliness and participation in community-centred decisions. Yet membership also includes opportunities to withdraw from the communal sphere into the (relative) solitude and particularity of one's home. Privacy laws help guard this special space from others' unwanted, unilateral or excessive intervention.
Sheltering will always be needed because emergencies occur. Housing will always be needed because people need unified, more-than-minimal, long-term spaces for living. Having a place, rather than just a space, is not a solitary or independent activity. Instead, having a home is a shared activity. It involves the person, as well as other people who implicitly or explicitly acknowledge, honour and help preserve the meaning, value and possession of "my place."
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Barbara Russell, bioethicist at the Centre for Addiction and Mental Health in Toronto, answers ethics questions that arise in the mental health and addiction fields. She is connected with the University of Toronto's Joint Centre for Bioethics and heads the neuroethics interest group of the Canadian Bioethics Society. She is also a contributing editor to the Journal of Ethics in Mental Health.
Do you have an ethics question for Dr. Russell? Submit questions to be considered for this column to CrossCurrents editor Hema Zbogar at hema_zbogar@camh.net. Please omit personally identifiable health-related information in order to respect people's privacy and follow privacy legislation.
"What would you do if this were your child?" That's a question parents sometimes ask the clinicians they've consulted about their child's problems. What do you recommend? Should health care professionals tell parents what they would do in their place?
]]> Not surprisingly, the significance of the question increases proportionally with the seriousness and urgency of the issue. But even if the problem is quite minor, it's worthwhile to examine from an ethics perspective what professionals are doing when they give or don't give their personal opinion.In 1989, William Ruddick, director of the Bioethics Centre at New York University and a philosopher and adjunct professor in psychiatry, was the first academic-clinician to tackle this issue in the ethics literature. A decade later, Robert Truog, a pediatric critical care specialist, anesthesiologist and medical ethicist at Harvard Medical School, offered his advice. Both men concluded that a doctor or nurse should not tell a child's parents what he or she would do "if your child were mine."
They offered five reasons. First, the parent may inappropriately assume that the practitioner is as good a parent as he or she is. Second, the parent may incorrectly assume shared he or she has the same values and parenting experiences as the practitioner. Third, the decision about a particular treatment or therapy could mean a paternalistic shift from parent to professional. Paternalism in this kind of situation is unacceptable because there is an able and caring, albeit worried, parent at hand. Fourth, professional optimism is common. This means that expected benefits and risks of medical treatments tend to be rated more positively by health care providers than by the average person. Finally, other family members or close friends likely are better able to help a parent evaluate treatment options because they know more about the child's life and the parent's parenting priorities or "style" than does the practitioner.
A few years have passed since Ruddick and Truog presented their arguments. Other members of the health care ethics community have weighed in. This time, they argue in favour of professionals telling parents what they would do, based on four reasons: First, the very fact that parents ask means they trust the professional a great deal. Second, answering the question constitutes an opportunity for even deeper conversations between parents and professional. Third, some of the responsibility should shift to the practitioner. And fourth, providing their own perspective may help reduce some of the practitioner's guilt if the outcomes are less than hoped for.
What can I contribute to this debate? Two things. It's useful, I think, to first consider how the parents' question can have different meanings. A parent may be trying to figure out whether the professional is withholding information about certain treatment options in an effort to not increase the complexity or burdens of the decision. On the other hand, a parent may be questioning the nature of their relationship with their child; for example, "Am I putting my own interests first?" In a similar vein, parents may wonder, "Are we expecting our child to endure too many burdens and tolerate too much risk? Burdens and risks that outsiders would consider excessive or even heartless?" Parents might feel that they still don't understand the situation or the options adequately and therefore wish to tap into the deeper clinical knowledge of the professional. The different reasons for asking means that professionals should try to ascertain what parents are really asking when they say to you, "What would you do if this were your child?"
As for myself, I agree that practitioners should not directly answer the question. Instead, they should re-focus on "these parents and their child." For example, saying something like "Based on my conversations with you, it seems that x, y and z have been critical in past decisions you've made about your child's illness as well as about your family as a whole. Do you think x, y and z apply to the decision you're dealing with right now? Or is this situation so different that x, y and z don't fit?" Such remarks confirm that the professional has indeed paid close attention to what the parent has already said and done. The remarks also encourage careful consideration of the parent's and family unit's values, priorities and realities. Moreover, the professional also remains available to the parents and committed to the child's well-being, without accepting or lapsing inappropriately into the role of "this child's parent."
Note: I've deliberately used both the singular and plural form of "parent" to affirm that children can have one or more parent. As captured in past, often heated, debates about the ethics of various reproductive technologies, parenthood--and the responsibilities and rights associated with it--can be based on providing needed gametes, gestation and birthing or social rearing.
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Barbara Russell, bioethicist at the Centre for Addiction and Mental Health in Toronto, answers ethics questions that arise in the mental health and addiction fields. She is connected with the University of Toronto's Joint Centre for Bioethics and heads the neuroethics interest group of the Canadian Bioethics Society. She is also a contributing editor to the Journal of Ethics in Mental Health.
Do you have an ethics question for Dr. Russell? Submit questions to be considered for this column to CrossCurrents editor Hema Zbogar at hema_zbogar@camh.net. Please omit personally identifiable health-related information in order to respect people's privacy and follow privacy legislation.
When a person first experiences a serious health problem, new decisions have to be made by the person, their family and health care workers. The inescapability of decisions helps explain why the health ethics community, with complementary attention by the legal and regulatory communities, devotes so much time to the concept of autonomy, the nature of professionals' fiduciary responsibilities and the criteria for a valid consent process.
Barbara Russell, bioethicist at the Centre for Addiction and Mental Health in Toronto, answers ethics questions that arise in the mental health and addiction fields. She is connected with the University of Toronto's Joint Centre for Bioethics and heads the neuroethics interest group of the Canadian Bioethics Society. She is also a contributing editor to the Journal of Ethics in Mental Health.
Do you have an ethics question for Dr. Russell? Submit questions to be considered for this column to CrossCurrents editor Hema Zbogar at hema_zbogar@camh.net. Please omit personally identifiable health-related information in order to respect people's privacy and follow privacy legislation.
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Barbara Russell, bioethicist at the Centre for Addiction and Mental Health in Toronto, answers ethics questions that arise in the mental health and addiction fields. She is connected with the University of Toronto's Joint Centre for Bioethics and heads the neuroethics interest group of the Canadian Bioethics Society. She is also a contributing editor to the Journal of Ethics in Mental Health.
Do you have an ethics question for Barbara? Submit questions to be considered for this column to CrossCurrents editor Hema Zbogar at hema_zbogar@camh.net. Please omit personally identifiable health-related information in order to respect people's privacy and follow privacy legislation.
Barbara Russell
When I first started working as an ethics specialist in a hospital and staff would phone me with a question or ask me to join a team meeting and then provided a brief synopsis of the ethics issue, I thought, "This sounds straightforward." As it turned out, the question or concern consistently proved to be anything but. I quickly learned that health care is always ethically complex because people, their lives, our society and our health care institutions are complex. (See my June 2010 column for more about complexity and how to work with it.)
]]> A good example that what matters is complex is this query I received from a staff member: "Our program uses a clinical form that needs updating. Right now, to indicate one's sex, the person checks the box marked either "male" or "female." We're wondering whether this needs to be revised. Are there enough boxes? Are they even the right boxes? Or are they okay?"______________________________
Barbara Russell, bioethicist at the Centre for Addiction and Mental Health in Toronto, answers ethics questions that arise in the mental health and addiction fields. She is connected with the University of Toronto's Joint Centre for Bioethics and heads the neuroethics interest group of the Canadian Bioethics Society. She is also a contributing editor to the Journal of Ethics in Mental Health.
Do you have an ethics question for Barbara? Submit questions to be considered for this column to CrossCurrents editor Hema Zbogar at hema_zbogar@camh.net. Please omit personally identifiable health-related information in order to respect people's privacy and follow privacy legislation.