Patient choices, family interests, and physician obligations

Recent articles in biomedical ethics have begun to explore both the relevance of family interests in treatment decisions and the resultant ramifications for physicians' obligations to patients. This article addresses two important questions regarding physicians' obligations vis-a-vis family interests: (1) What should a physician do when the exercise of patient autonomy threatens to negate the patient's moral obligations to other family members? (2) Does respect for patient autonomy typically require efforts on the part of physicians to keep patients' treatment decisions from being influenced by family considerations? A series of clarifications about the concept of autonomy is also presented.     

The family covenant and genetic testing

The physician-patient relationship has changed over the last several decades, requiring a systematic reevaluation of the competing demands of patients, physicians, and families. In the era of genetic testing, using a model of patient care known as the family covenant may prove effective in accounting for these demands. The family covenant articulates the roles of the physician, patient, and the family prior to genetic testing, as the participants consensually define them. The initial argument defines the boundaries of autonomy and benefit for all participating family members. The physician may then serve as a facilitator in the relationship, working with all parties in resolving potential conflicts regarding genetic information. The family covenant promotes a fuller discussion of the competing ethical claims that may come to bear after genetic test results are received.     

The Family Covenant and Genetic Testing

The physician-patient relationship has changed over the last several decades, requiring a systematic reevaluation of the competing demands of patients, physicians, and families. In the era of genetic testing, using a model of patient care known as the family covenant may prove effective in accounting for these demands. The family covenant articulates the roles of the physician, patient, and the family prior to genetic testing, as the participants consensually define them. The initial agreement defines the boundaries of autonomy and benefit for all participating family members. The physician may then serve as a facilitator in the relationship, working with all parties in resolving potential conflicts regarding genetic information. The family covenant promotes a fuller discussion of the competing ethical claims that may come to bear after genetic test results are received.     

In Defense of Paternalism

This paper argues that we have wrongly and not for the patient’s benefit made a form of stark autonomy our highest value which allows physicians to slip out from under their basic duty which has always been to pursue a particular patient’s good. In general – I shall argue – it is the patient’s right to select his or her own goals and the physician’s duty to inform the patient of the feasibility of that goal and of the means needed to attain it. If the goal is not one that is possible, the patient, with the physician and family, must select a feasible goal and then discuss the costs/benefits of various approaches. The physician should take a leading role in helping the patient select the goal. I argue that to simply present a laundry list of means and insist that patients choose for themselves is not only abandoning patients to their autonomy but is, in fact, a crass form of violating the patient’s autonomy. Freely choosing not to choose is a choice a patient with decisional capacity is entitled to make and one that needs to be respected.     

Professional Autonomy in Belgium

The Belgian health care system has a few features that may havecontributed to the rising costs of health care: patients' freechoice of physicians, large clinical freedom of physicians, essentiallya fee-for-service remuneration for medical specialists in which the feesare agreed between insurance funds and physicians. The increased medicalconsumption and costs have prompted the state and insurance companies totake measures that limit the professional autonomy of the physicians.Access to medical education, free until 1997, is now restricted. Themedical profession is organized in the Order of Physicians that hasestablished a code of professional ethics that has moral but not legalforce. So far, there is no special legislation for thepatient–physician relationship, though laws on specific issueslike organ transplantation contain duties for physicians. In recentyears a debate is taking place on patients' rights, of which informedconsent is central and gaining importance in medico-legal publications.An analysis of (ethical and legal) regulations concerning thewithholding or withdrawal of treatment by physicians demonstrate thatthe profession still enjoys a large clinical autonomy, though duediscussion with the patient has become more explicitly required. Therespect for professional autonomy is not primarily due to any formalpower that the Order of Physicians would have, but is rather grounded inthe generally high quality of the patient–physician relationshipthat in ethical terms is considered essentially as a confidencerelationship rather than a contractual relationship.     

The Role of Regret in Medical Decision-making

In this paper, I explore the role that regret does and should play in medical decision-making. Specifically, I consider whether the possibility of a patient experiencing post-treatment regret is a good reason for a clinician to counsel against that treatment or to withhold it. Currently, the belief that a patient may experience post-treatment regret is sometimes taken as a sufficiently strong reason to withhold it, even when the patient makes an explicit, informed request. Relatedly, medical researchers and practitioners often understand a patient’s post-treatment regret to be a significant problem, one that reveals a mistake or flaw in the decision-making process. Contrary to these views, I argue that the possibility of post-treatment regret is not necessarily a good reason for withholding the treatment. This claim is justified by appealing to respect for patient autonomy. Furthermore, there are occasions when the very reference to post-treatment regret during medical decision-making is inappropriate. This, I suggest, is the case when the decision concerns a “personally transformative treatment”. This is a treatment that alters a person’s identity. Because the treatment is transformative, neither clinicians nor the patient him/herself can ascertain whether post-treatment regret will occur. Consequently, I suggest, what matters in determining whether to offer a personally transformative treatment is whether the patient has sufficiently good reasons for wanting the treatment at the time the decision is made. What does not matter is how the patient may subsequently be changed by undergoing the treatment.     

Getting Obligations Right: Autonomy and Shared Decision Making

Shared Decision Making (‘SDM’) is one of the most significant developments in Western health care practices in recent years. Whereas traditional models of care operate on the basis of the physician as the primary medical decision maker, SDM requires patients to be supported to consider options in order to achieve informed preferences by mutually sharing the best available evidence. According to its proponents, SDM is the right way to interpret the clinician-patient relationship because it fulfils the ethical imperative of respecting patient autonomy. However, there is no consensus about how decisions in SDM contexts relate to the principle of respect for autonomy. In response, I demonstrate that in order to make decisions about what treatment they will or will not receive, patients will be required to meet different conditions depending on the approach proponents of SDM take to understanding personal autonomy. Due to the fact that different conceptions of autonomy yield different obligations, I argue that if physicians and patients satisfied all the conditions described in standard accounts of SDM, then SDM would undermine patient autonomy.     

Emotional autonomy and adjustment among emerging adults: The moderating role of family relationships

Emerging adults build their personal maturity within the family context; however, few studies focus on the role of emotional autonomy during this stage. The aim of this study was to analyze the relationship between emotional autonomy and adjustment during emerging adulthood, bearing in mind the possible moderating role of parental support in this relationship. Data were collected from 1,502 Spanish undergraduate students (903 women) aged between 18 and 29. Participants completed measures of emotional autonomy (EAS, Steinberg & Silverberg, 1986), family social support (MSPSS; Zimet, Dahlem, Zimet & Farley, 1988), psychological well-being (PWBS; Ryff, Lee, Essex & Schmutte, 1995) and psychological distress (DASS-21; Lovibond & Lovibond, 1995). The results indicate that emotional autonomy correlates negatively with family support and psychological well-being and positively with psychological distress. However, only when young people perceive a family context with low social support is gaining emotional distance from their parents associated with an increase in their psychological well-being. Our findings highlight the crucial role that the family environment plays in well-being during young adulthood, and reveal that the effect of emotional distancing from parents on adjustment depends on the quality of the family climate. Future research should seek to gain greater insight into emotional autonomy during emerging adulthood, taking into account cross-cultural diversity.     

A Contextualized Approach to Patient Autonomy Within the Therapeutic Relationship

Some authors have advanced a contractual model to protect patient autonomy within the therapeutic relationship. Such a conception of the physician–patient relationship is intended to serve both parties by respecting patients' choices and preserving physician integrity. I critique this contractual view and offer an alternative, feminist contextualized approach to autonomy within the therapeutic relationship. This approach places the physician-patient relationship within a larger social context, and indicates the many social inequalities that render insupportable the notion of physicians and patients as contracting equals.     

Ethical principles and cultural integrity in health care delivery: Asian ethnocultural perspectives in genetic services

The tradition of Western thought is not always ubiquitous when working within the context of different ethnocultural populations, particularly that of Asian culture, and often poses ethical quandaries for health care professionals engaged in genetic services. For example, understanding the Asian ethnocultural perspective of patient autonomy, informed consent, and nondirective counseling from the Western perspective may be inappropriate and compromise cultural integrity and the delivery of effective genetic services because: (1) A distinction exists between the role of Asian (collective) autonomy vs. Western (individual) autonomy in the decision-making process. (2) The medical model is complementary to Asian expectations and respect of authority and may result in an uninformed consent to genetic professional's recommendations. (3) Misinterpretations of the normative decision-making process, misconceptions of normalcy, and the limits of tolerance of nondirective counseling may result in less effective treatment and compliance. Therefore, we suggest that acknowledging the impact of ethnicity and culture on ethical principles as applied in genetic services is essential in the assessment and delivery of ethically and culturally appropriate health care.     

Challenging the bioethical application of the autonomy principle within multicultural societies

This article critically re-examines the application of the principle of patient autonomy within bioethics. In complex societies such as those found in North America and Europe health care professionals are increasingly confronted by patients from diverse ethnic, cultural, and religious backgrounds. This affects the relationship between clinicians and patients to the extent that patients' deliberations upon the proposed courses of treatment can, in various ways and to varying extents, be influenced by their ethnic, cultural, and religious commitments. The principle of patient autonomy is the main normative constraint imposed upon medical treatment. Bioethicists typically appeal to the principle of patient autonomy as a means for generally attempting to resolve conflict between patients and clinicians. In recent years a number of bioethicists have responded to the condition of multiculturalism by arguing that the autonomy principle provides the basis for a common moral discourse capable of regulating the relationship between clinicians and patients in those situations where patients' beliefs and commitments do or may contradict the ethos of biomedicine. This article challenges that claim. I argue that the precise manner in which the autonomy principle is philosophically formulated within such accounts prohibits bioethicists' deployment of autonomy as a core ideal for a common moral discourse within multicultural societies. The formulation of autonomy underlying such accounts cannot be extended to simply assimilate individuals' most fundamental religious and cultural commitments and affiliations per se. I challenge the assumption that respecting prospective patients' fundamental religious and cultural commitments is necessarily always compatible with respecting their autonomy. I argue that the character of some peoples' relationship with their cultural or religious community acts to significantly constrain the possibilities for acting autonomously. The implication is clear. The autonomy principle may be presently invalidly applied in certain circumstances because the conditions for the exercise of autonomy have not been fully or even adequately satisfied. This is a controversial claim. The precise terms of my argument, while addressing the specific application of the autonomy principle within bioethics, will resonate beyond this sphere and raises questions for attempts to establish a common moral discourse upon the ideal of personal autonomy within multicultural societies generally.     

Ethical Dilemmas at the End of Life: Islamic Perspective

Many Muslim patients and families are often reluctant to accept fatal diagnoses and prognoses. Not infrequently, aggressive therapy is sought by the patient or his/her family, to prolong the life of the patient at all costs. A series of searches were conducted of Medline databases published in English between January 2000 and January 2015 with the following Keywords: End-of-life, Ethics and Islam. Islamic law permits the withdrawal of futile treatment, including all kinds of life support, from terminally ill patients leaving death to take its natural course. However, such decision should only take place when the physicians are confident that death is inevitable. All interventions ensuring patient’s comfort and dignity should be maintained. This topic is quite challenging for the health care providers of Muslim patients in the Western World.     

The patient in the family and the family in the patient

The notion that the family is “the unit of care” for family doctors has been enigmatic and controversial. Yet systems theory and the biopsychosocial model that results when it is imported into medicine make the family system an indispensable and important component of family medicine. The challenge, therefore, is to provide a coherent, plausible account of the role of the family in family practice. Through an extended case presentation and commentary, we elaborate two views of the family in family medicine — treating the patient in the family and treating the family in the patient — and defend both as appropriate foci for care by family doctors. The practical problem that arises when the family is introduced into health care is deciding when to concentrate on the family system. The moral problems that arise concern how extensively doctors may become involved in the personal lives of their patients and families. The patient-centered clinical method provides a strategy for handling both problems. Thus, making the family a focus of care in family medicine can be justified on theoretical, practical, and moral grounds.     

Patient autonomy and the challenge of clinical uncertainty

Bioethicists have articulated an ideal of shared decision making between physician and patient, but in doing so the role of clinical uncertainty has not been adequately confronted. In the face of uncertainty about the patient's prognosis and the best course of treatment, many physicians revert to a model of nondisclosure and nondiscussion, thus closing off opportunities for shared decision making. Empirical studies suggest that physicians find it more difficult to adhere to norms of disclosure in situations where there is substantial uncertainty. They may be concerned that acknowledging their own uncertainty will undermine patient trust and create additional confusion and anxiety for the patient. We argue, in contrast, that effective disclosure will protect patient trust in the long run and that patients can manage information about uncertainty. In situations where there is substantial uncertainty, extra vigilance is required to ensure that patients are given the tools and information they need to participate in cooperative decision making about their care.     

Readiness for Change: Involving the Family with Adolescents in Residential Settings

Adolescence is a pivotal time in human development and can be a challenging time for individuals to learn to regulate emotions, while also balancing biopsychosocial changes. The family plays a key role in an adolescent’s development. Thus, it is imperative for families to remain involved when adolescents are in residential treatment for emotional or behavioral issues. In this paper, we explore the benefits of, and methods for, increasing the identified patient’s (i.e., the adolescent’s) and the family’s readiness for change. The process of increasing family engagement in residential treatment is considered through the lens of the Stages of Change model. Barriers practitioners may face with adolescents and their families are also addressed.     

Children’s Psychosocial Problems Presenting in a Family Medicine Practice

Primary care physicians have an important role in identifying, treating, and referring children with psychosocial problems. However, there is a limited literature describing whether and how family physicians address psychosocial problems and why parents may not discuss children’s problems with physicians. The current study examined how family physicians address psychosocial problems and reasons that parents do not discuss children’s psychosocial problems with physicians. Results indicated that there are a variety of reasons involving parents, their perceptions of physicians, and the number of psychosocial problems reported, that may lead to fewer discussions of psychosocial problems.     

Physician and patient: Respect for mutuality

Theoretical Medicine and Bioethics - Philosophers and physicians alike tend to discuss the physician-patient relationship in terms of physician privilege and patient autonomy, stressing the duty of...     

Religious,Ethical and Legal Considerations in End-of-Life Issues: Fundamental Requisites for Medical Decision Making

Religion and spirituality have always played a major and intervening role in a person’s life and health matters. With the influential development of patient autonomy and the right to self-determination, a patient’s religious affiliation constitutes a key component in medical decision making. This is particularly pertinent in issues involving end-of-life decisions such as withdrawing and withholding treatment, medical futility, nutritional feeding and do-not-resuscitate orders. These issues affect not only the patient’s values and beliefs, but also the family unit and members of the medical profession. The law also plays an intervening role in resolving conflicts between the sanctity of life and quality of life that are very much pronounced in this aspect of healthcare. Thus, the medical profession in dealing with the inherent ethical and legal dilemmas needs to be sensitive not only to patients’ varying religious beliefs and cultural values, but also to the developing legal and ethical standards as well. There is a need for the medical profession to be guided on the ethical obligations, legal demands and religious expectations prior to handling difficult end-of-life decisions. The development of comprehensive ethical codes in congruence with developing legal standards may offer clear guidance to the medical profession in making sound medical decisions.     

Desires in Palliative Medicine. Five Models of the Physician‐Patient Interaction on Palliative Treatment Related to Hellenistic Therapies of Desire

In this paper, we explore the desires that play a role at the palliative stage and relate them to various approaches to patient autonomy. What attitude can physicians and other caregivers take to the desires of patients at the palliative stage? We examine this question by introducing five physicians who are consulted by Jackie, an imaginary patient with metastatic lung carcinoma. By combining the models of the physician-patient relationship developed by Emanuel and Emanuel (1992) and the Hellenistic approaches to desires analyzed by Nussbaum (1994), five different ways of dealing with desires in the context of palliative care are sketched. The story of Jackie shows that desires are to a certain extent responsive to reasoning. In the palliative process, that can be a reason to devote attention to the desires of patients and caregivers and to determine which desires need to be fulfilled, which are less important, and how they are linked to emotions the patient has.