Anita Ho

Beyond informed consent: the therapeutic misconception and trust

The therapeutic misconception has been seen as presenting an ethical problem because failure to distinguish the aims of research participation from those receiving ordinary treatment may seriously undermine the informed consent of research subjects. Hence, most theoretical and empirical work on the problems of the therapeutic misconception has been directed to evaluate whether, and to what degree, this confusion invalidates the consent of subjects. We argue here that this focus on the understanding component of informed consent, while important, might be too narrow to capture the ethical complexity of the therapeutic misconception. We show that concerns about misplaced trust and exploitation of such trust are also relevant, and ought to be taken into account, when considering why the therapeutic misconception matters ethically.

Family and Informed Consent in Multicultural Setting

patients or their surrogates. But to enable a patient to make an informed choice, subjective information that is relevant to that individual patient—information a physician can only know if she listens to her patient—is also necessary. As Gillett observes, the process of informing consent should have two phases: an objective phase and a responsive phase (Gillett 2003). Together a physician and a patient go down the path of talking and listening to each other to arrive at the diagnosis and treatment that is appropriate for each individual patient’s medical problem. Discovering what a patient wants to know or not know about a suggested or recommended treatment is not a separate endeavor, nor does it require significantly different skills. When doctors perceive informing patients as an extension of their clinical skills, rather than an extraneous requirement imposed upon them by the legal system and ethics gurus, they will become better at doing so because they will know to use the perspective and the skills that they employ in making diagnoses. This will empower them to glean from patients the information that patients want and need to make a decision.

Genetic counseling and the ethical issues around direct to consumer genetic testing.

Over the last several years, direct to consumer (DTC) genetic testing has received increasing attention in the public, healthcare and academic realms. DTC genetic testing companies face considerable criticism and scepticism, particularly from the medical and genetic counseling community. This raises the question of what specific aspects of DTC genetic testing provoke concerns, and conversely, promises, for genetic counselors. This paper addresses this question by exploring DTC genetic testing through an ethical lens. By considering the fundamental ethical approaches influencing genetic counseling (the ethic of care and principle-based ethics) we highlight the specific ethical concerns raised by DTC genetic testing companies. Ultimately, when considering the ethics of DTC testing in a genetic counseling context, we should think of it as a balancing act. We need careful and detailed consideration of the risks and troubling aspects of such testing, as well as the potentially beneficial direct and indirect impacts of the increased availability of DTC genetic testing. As a result it is essential that genetic counselors stay informed and involved in the ongoing debate about DTC genetic testing and DTC companies. Doing so will ensure that the ethical theories and principles fundamental to the profession of genetic counseling are promoted not just in traditional counseling sessions, but also on a broader level. Ultimately this will help ensure that the public enjoys the benefits of an increasingly genetic-based healthcare system.

What's trust got to do with it? Revisiting opioid contracts

Prescription opioid abuse (POA) is an escalating clinical and public health problem. Physician worries about iatrogenic addiction and whether patients are ‘drug seeking’, ‘abusing’ and ‘diverting’ prescription opioids exist against a backdrop of professional and legal consequences of prescribing that have created a climate of distrust in chronic pain management. One attempt to circumvent these worries is the use of opioid contracts that outline conditions patients must agree to in order to receive opioids. Opioid contracts have received some scholarly attention, with trust and trustworthiness identified as key values and virtues. However, few articles have provided a critical account of trust and trustworthiness in this context, particularly when there exists disagreement about their role in terms of enhancing or detracting from the patient–physician relationship. This paper argues that opioid contracts represent a misleading appeal to patient–physician trust. Assuming the patient is untrustworthy may wrongfully undermine the credibility of the patients testimony, which may exacerbate certain vulnerabilities of the person in pain. However, misplaced trust in certain patients may render the physician vulnerable to the potential harms of POA. If patients distrust their physician, or feel distrusted by them, this may destabilise the therapeutic relationship and compromise care. A process of epistemic humility may help cultivate mutual patient–physician trust. Epistemic humility is a collaborative effort between physicians and patients that recognises the role of patients’ subjective knowledge in enhancing physicians’ self-understanding of their theoretical and practice frameworks, values and assumptions about the motivations of certain patients who report chronic pain.

Behavioral and Psychological Symptoms in Moderate to Severe Alzheimer's Disease: A Palliative Care Approach Emphasizing Recognition of Personhood and Preservation of Dignity

The assessment and management of behavioral and psychological symptoms of dementia (BPSD) in moderate to severe Alzheimers disease (AD) can be challenging, and ethical dilemmas often arise. Clinicians often perceive a disconnect between evidence-based guidelines and the challenges of treating BPSD in moderate to severe AD. Reconciliation of salient ethical issues can help bridge this disconnect. In view of the fact that AD is a progressive and ultimately fatal disease, and given that there are often competing considerations when managing BPSD in moderate to severe AD, we propose a palliative care approach that prioritizes the recognition of personhood and the preservation of dignity. We present case illustrations, discuss the concepts of dignity and personhood during palliative care in AD, and encourage the use of the bioethical grid in navigating complex clinical challenges.

Health and human rights advocacy: Perspectives from a Rwandan refugee camp:

Working at the bedside and within communities as patient advocates, nurses frequently intervene to advance individuals’ health and well-being. However, the International Council of Nurses’ Code of Ethics asserts that nurses should expand beyond the individual model and also promote a rights-enabling environment where respect for human dignity is paramount. This article applies the results of an ethnographic human rights study with displaced populations in Rwanda to argue for a rights-based social advocacy role for nurses. Human rights advocacy strategies include sensitization, participation, protection, good governance, and accountability. By adopting a rights-based approach to advocacy, nurses contribute to health agendas that include more just social relationships, equitable access to opportunities, and health-positive living situations for all persons.

“They just don’t get it!” When family disagrees with expert opinion

The notions of “expert” and “expertise” imply that some people have more credibility than others on certain matters. While expert authority is often taken for granted, there are questions as to whether expert power in some cases can be a form of epistemic oppression. Informed by bedside disagreements between family and clinicians as well as feminist discussions of epistemic oppression, this paper argues for a commitment to epistemic humility and the adoption of a two-way collaborative approach between clinicians and families that can help to enhance professionals’ own understanding of their theoretical framework and also promote responsive patient care.

Lessons from predictive testing for Huntington disease: 25 years on

The availability of predictive genetic tests has rapidly expanded in the last two decades. We can now provide testing for a range of adult onset conditions including certain cancers, cardiac diseases, and neurological disorders. These developments have recognised benefit including determining the necessity of additional screening or preventive options, relieving uncertainty, and reproductive planning. However, despite these benefits, predictive tests raise challenges regarding the ethical delivery of genetic testing, results, and services. To respond to these challenges, predictive testing protocols, such as those for Huntington disease (HD), have required several in-person appointments, spread over several weeks or months, in order to undergo counselling, testing, and receive test results.1 Originally, these multi-step, multi-visit protocols were developed to both protect individuals from the potential for serious psychological damage from receiving increased risk results, as well as to ensure that individuals undergoing testing made a fully considered decision. In addition, incorporating …

Investigating Trust, Expertise, and Epistemic Injustice in Chronic Pain

Trust is central to the therapeutic relationship, but the epistemic asymmetries between the expert healthcare provider and the patient make the patient, the trustor, vulnerable to the provider, the trustee. The narratives of pain sufferers provide helpful insights into the experience of pain at the juncture of trust, expert knowledge, and the therapeutic relationship. While stories of pain sufferers having their testimonies dismissed are well documented, pain sufferers continue to experience their testimonies as being epistemically downgraded. This kind of epistemic injustice has received limited treatment in bioethics. In this paper, we examine how a climate of distrust in pain management may facilitate what Fricker calls epistemic injustice. We critically interrogate the processes through which pain sufferers are vulnerable to specific kinds of epistemic injustice, such as testimonial injustice. We also examine how healthcare institutions and practices privilege some kinds of evidence and ways of knowing while excluding certain patient testimonies from epistemic consideration. We argue that providers ought to avoid epistemic injustice in pain management by striving toward epistemic humility. Epistemic humility, as a form of epistemic justice, may be the kind disposition required to correct the harmful prejudices that may arise through testimonial exchange in chronic pain management.

You Present like a Drug Addict: Patient and Clinician Perspectives on Trust and Trustworthiness in Chronic Pain Management

OBJECTIVE Past research has demonstrated that trust is central to an effective therapeutic relationship, but the role of trust in chronic pain management is not well understood. The objective of this study was to provide an in-depth examination of how adults living with chronic pain negotiate trust and demonstrate trustworthiness with clinicians in therapeutic encounters. METHODS This qualitative study focused on adults living in an urban setting in British Columbia, Canada. Semi-structured interviews (N = 27) were conducted with participants with chronic low back pain. The results were triangulated by two feedback groups comprising re-contacted interview participants (n = 4) and physicians with expertise in pain and addiction management (n = 6). RESULTS Grounded theory analysis of the adult patient interviews and feedback groups yielded four major themes: 1) threats to trustworthiness and iatrogenic suffering; 2) communicating the invisible and subjective condition of chronic pain; 3) motive, honesty, and testimony; and 4) stigmatized identities. The following two themes emerged from the analysis of the physician feedback group: 1) challenges of the practice context, and 2) complicated clinical relationships. CONCLUSIONS We found that perceived trustworthiness is important in therapeutic encounters as it helps to negotiate tensions with respect to subjective pain symptoms, addiction, and prescription opioid use. An attitude of epistemic humility may help both clinicians and patients cultivate a trustworthy clinical environment, manage the challenges associated with uncertain testimony, place trust wisely, and promote optimal pain care.