The Ethics of Care

Moral Knowledge, Communication, and the Art of Caregiving

Alan Blum, Stuart Murray, Alan Blum, Stuart J Murray, Stuart Murray, Alan Blum, Stuart J Murray

• Publisher: Routledge
• Year: 2016
• eBook ISBN: 9781317033844
• Edition: 1
• Topic: Social Sciences
• Subtopic: Global Development Studies
• Index: Social Sciences

Beginning with a focus on the ethical foundations of caregiving in health and expanding towards problems of ethics and justice implicated in a range of issues, this book develops and expands the notion of care itself and its connection to practice.

Organised around the themes of culture as a restraint on caregiving in different social contexts and situations, innovative methods in healthcare, and the way in which culture works to position care as part of a rhetorical approach to dependency, responsibility, and justice, The Ethics of Care presents case studies examining institutional responses to end-of-life issues, the notion of informed consent, biomedicine, indigenous rights and postcolonialism in care and theoretical approaches to the concept of care.

Offering discussions from a variety of disciplinary approaches, including sociology, communication, and social theory, as well as hermeneutics, phenomenology, and deconstruction, this book will appeal to scholars across the social sciences with interests in healthcare, medicine, justice and the question of how we think about care as a notion and social form, and how this is related to practice.

Part I
Institutional constraints, consent, and end-of-life

1
Informed consent and the social regulation of caregiver involvement in end-of-life care¹

Diego Llovet

Great expectations: the courts, informed consent and patient self-governance

Over the last few decades, commentators in the social sciences have developed a notion (which they have called “medicalization”) to describe the process through which the medical profession² comes to establish jurisdiction over objects previously exempt from such interventions (Marshall 1998). Using examples like birth (which becomes “hospitalized”) or sadness (which becomes “depression” and an object for psychiatry), this type of literature emphasizes the growth and expansion of medical authority and describes medicine as an increasingly influential force shaping modern culture. But the concept of medicalization is of limited use in describing the transformations of medicine in relation to the broader culture, for medicine shapes its environment (as stated by analysts of medical ization) as much as it is shaped by it (a claim made less often, and one that I wish to explore here). In other words, the medical profession may at times “colonize” the lifeworld, but it is itself not immune to being colonized and transformed, as it were, from the outside.

A clear case of this is the medical profession’s subjection to the world of law, which regulates the practice of medicine in various ways, in particular in relation to the doctor–patient relationship and the manner in which medical decisions are required to be made. This process, which can be called “legalization,” brings medical practice under the purview of law, forcefully classifies all medical behavior as either “lawful” or “unlawful,” and socializes practitioners according to ideas of rights and obligations, reshaping the way in which professional care is delivered. A good example of this question of the lawfulness of medical practice is the requirement that professional caregivers seek permission from patients before administering any treatments or procedures. This is an obligation for most (if not all) licensed professional caregivers in the Western world. Echoing a principle valid in many other jurisdictions, the Ontario Health Care Consent Act (1996) clearly states: “no treatment without consent.”

According to Jay Katz (1984), the principle of consent has long been a legal requirement in places like the United Kingdom and the United States, where courts have over the last 200 years or so routinely enforced the notion that physicians have an obligation to tell patients what procedures are going to be performed on them and to seek consent before proceeding. In American jurisprudence, two cases are often cited as landmarks firmly securing this principle: Pratt v. Davis, of 1905, and Schloendorff v. The Society of New York Hospital, of 1914. In those cases, two female patients had separately complained that doctors had through deception performed surgical procedures without their knowledge or consent: in one case, the patient’s uterus and ovaries were removed, while in the other, a tumor was excised when only an examination under ether had been authorized by the patient. In denouncing the actions of these physicians, each of the courts famously stated:

Under a free government at least, the free citizen’s first and greatest right . . . the right to the inviolability of his [sic] person . . . is the subject of universal acquiescence, and this right necessarily forbids a physician or surgeon . . . to violate without permission the bodily integrity of his [sic] patient . . . and [to operate] on him without his [sic] consent or knowledge.

(Pratt v. Davis; quoted in Katz 1984, 51)

Every human being of adult years and sound mind has a right to determine what shall be done to his [sic] own body; and a surgeon who performs an operation without his [sic] patient’s consent, commits an assault, for which he [sic] is liable in damages.

(Schloendorff v. The Society of New York Hospital; quoted in Katz 1984, 51)

The legal requirement of consent in medical practice thus reflects an understanding of the patient as the sovereign owner of his or her body and as a bearer of the right to be free from offensive and uninvited contact. In this context, the patient is defined as an agent with the ability to either grant or deny access to his or her body. Caregivers found to have violated this prohibition can be found guilty of assault, battery, or trespass, in the same manner that sex becomes rape and a contract becomes null and void when the parties to the relation are found to have been coerced or misled.³ The notion of consent, in its pure form, thus defines the role of the patient in the medical encounter through the right of refusal, the right to say “no.” It is a safeguard, a defensive mechanism against abuse.

But this is not all. The law of consent evolved over time and incorporated the notion that patients have a right to know not only what procedure is going to be performed on them, but also what risks are involved in accepting or rejecting the proposed treatment. This new principle came to be known as “informed consent,” precisely because it points to the fact that patients can only give legally valid consent if they know what they are getting themselves into—that is, if they are well-informed. In his historical reconstruction of the doctrine, Katz (1984) dates the birth of informed consent in the United States on October 22, 1957, when California judges hearing the case of a man left paralyzed by a medical intervention established the notion that physicians have an affirmative duty to disclose any serious risks to proposed treatments. In their ruling, the judges said:

A physician violates his duty to his patient and subjects himself to liability if he [sic] withholds any facts which are necessary to form the basis of an intelligent consent by the patient to the proposed treatment.

(Salgo v. Lelan Stanford Jr. University Board of Trustees; quoted in Katz 1984, 61; my emphasis)

In Canada, the introduction of the element of well-informedness as a requirement for consent came about through a 1980 case heard by the Supreme Court: Reibl v. Hughes. There, the judges describe the events relevant to the case. John Reibl, 44 years old at the time of the incident, had complained of headaches, which his family doctor failed to treat successfully. A referral was made to Dr. Robert Hughes, the defendant, who concluded that the headaches were caused by a narrowed artery, which prevented the normal flow of blood to the brain. Dr. Hughes recommended surgery, which he performed competently and with Reibl’s consent. However, as a consequence of surgery, Reibl suffered a massive stroke that left him partially paralyzed and impotent.

Unlike Schloendorff and Pratt, Reibl knew which procedure the doctor was going to perform and he had consented to the treatment. He did not know, however, that this particular procedure carried a certain risk of paralysis and even death. Reibl claimed that the doctor had an obligation, which he had breached, to disclose these risks before obtaining consent so as to allow him to consider his options and decide whether or not he wanted to go ahead with the surgery. Further, he made the claim that, had he known of these risks, he wouldn’t have gone ahead with the procedure, since at the time he was only a short time away from retirement and becoming paralyzed would threaten his ability to collect disability benefits from his employer. By failing to disclose these risks, Reibl argued, Dr. Hughes had violated his right to make a rational and well-informed decision that would have best served his interests. In other words, Reibl argued that his injuries were not the product of ill fortune or an accident, but of medical negligence. When questioning Dr. Hughes, Reibl’s attorney formulated the disclosure of risks as a professional duty owed to patients. The transcript reads:

Q:	Did you tell [the patient] what his chances were of being paralyzed immediately or within a day or two as a result of this surgery?
A:	No . . . I told him that the chances of being paralyzed if he did not have the operation were greater . . . than if he did have the operation.
Q:	You attempted to compare risks of being paralyzed by having the surgery or not having the surgery?
A:	That is correct.
Q:	I suggest to you, however, that what you did not do was specifically tell your patient that he ran a specific risk of having a stroke and, in effect, being paralyzed if he had this operation. Do you understand the distinction?
A:	Yes.

(Reibl v. Hughes 1980, 921–2)

The Supreme Court validated Reibl’s claims by saying that the explanation that Dr. Hughes gave Reibl failed to adequately disclose the risks of surgery and that it simply indicated that Reibl would be better off to have the operation than not to have it. In other words, the court saw Dr. Hughes’s words to Reibl as simply a recommendation to have surgery, an expert opinion guided by medical knowledge alone. Medical opinion alone, the court believed, is not enough to conclude that a particular treatment best serves the interests of the patient. The judges wrote:

Merely because medical evidence established the reasonableness of a recommended operation did not mean that a reasonable person in the patient’s position would necessarily agree to it if proper disclosure had been made of the risks attendant upon it, balanced by those against it.

(Reibl v. Hughes 1980, 882)

In the court’s view, the question of whether a particular treatment is beneficial to a patient can only be settled by also taking other, non-medical elements into account, such as the values, preferences, and context of the individual patient. In Reibl’s case, these non-medical aspects included the patient’s employment situation and the fact that he was not yet eligible for extended health coverage and would be left unable to collect disability benefits through his employer should he become paralyzed as a consequence of surgery. Additionally, he had strong ideas regarding what he considered to be the life worth living, which would also be relevant to making a rational (or “intelligent,” as the court put it in Salgo v. Stanford) decision regarding treatment.

If I have to choose for a short life and live like a normal person or [live] the rest of it like a cripple I would have chosen to live a short life and be a normal person. I wouldn’t drag myself around the way I am doing now.

(Reibl v. Hughes 1980, 903)

With this decision, the court implicitly made the claim that health and well-being are notions that can only be conceived in relation to the life that is lived by the patient, and not just in relation to the profession’s expert understanding of the body and its troubles. In this case, Dr. Hughes had defined Reibl’s problem as one caused by the narrowing of an artery that prevented blood from flowing to the brain, and acted on this definition without regard for how surgery might affect Reibl’s life, therefore disconnecting the treatment from the person who it was supposed to serve. In other words, health and well-being are not just technical states of affairs (where an unclogged artery equals health). They are, fundamentally, conditions that need to be conceptualized and evaluated in relation to the particular person and his or her various contexts. This means that the question in Reibl’s case should be not so much whether or not the artery is clogged, but rather whether surgery is likely to make the patient “healthy” in the eyes of the person who needs to live with the consequences of care.

At the level of the organization of the medical encounter, this idea of health and well-being as more than a technical matter translates into a new ideal model of care in which the patient is given a more active role that goes beyond either obeying doctor’s orders or merely consenting to proposed treatments. Under conditions of informed consent, the physician is re-imagined as being unable to know or control in advance the non-medical (contextual) elements that are now said to be key to establishing whether or not a particular treatment will be beneficial to the patient. These contextual elements are, instead, part of the patient’s biography and are, therefore, for him or her to define. This means that, under such conditions, the patient is charged with the responsibility to think about what is important to him or her (in Reibl’s case, to live well and risk early death vs. to live longer and risk disability and poverty) and to use this self-knowledge to decide what treatment better suits his or her interests (i.e. surgery or no surgery). In other words, informed consent demands that the patient develop a self-reflexive relation to whatever conditions he or she inherits and that he or she take responsibility for making decisions and choosing⁴ the best means to whatever ends are desired. In this manner, individual self-governance becomes a requirement of healthcare and a condition for health and well-being.

Moreover, informed consent is thus imagined as a tool that serves to free the patient from the tyranny of medical paternalism and its ugly habit of imposing treatments that serve the interests of the physician more than those of the patient. In Foucauldian speak, we could say that informed consent is a “technology of freedom” in the sense that it is part of a moral order in which the patient figures as a subject to be liberated and empowered vis-à-vis medical authoritarianism and its demands that the always ignorant patient passively submit to the higher powers of the experts. It purports to reverse relations of authority and to effect radical change in the division of labor of care: doctor and patient abandon their traditional custodial roles and now become equal partners in a collaborative relation where patients direct their care by choosing their goals and physicians assist instrumentally by clarifying the best means to the achievement of those ends.

Beyond its status as a legal requirement for individual practitioners, informed consent has also found a place in the institutional rhetoric of medicine, where it appears as a mechanism to ensure respect for patient autonomy (see, for example, the World Health Organization’s People at the Centre of Health Care: Harmonizing Mind and Body, People and Systems 2007) and a necessity in a context of healthcare systems that seek to become more “patient-centered” (OMA 2010)—that is, more attuned to the needs of individual patients. The Ontario Medical Association, for example, says that

one of the basic tenets of patient-centered care i...

Table of contents

• Cover Page
• Half Title page
• Routledge Studies in Health and Social Welfare
• Title Page
• Copyright Page
• Contents
• Figures
• Acknowledgments
• List of Contributors
• Introduction The dialectic of care
• Institutional constraints, consent, and end-of-life
• Biomedicine, social services, and reparation in the postcolony
• Communication, ethical collisions, and the realities of care
• Index