A Communal Vision of Care for Incompetent Patients

In a pluralistic society, the “best interests” standard is an inadequate criterion for determining what level of medical care to provide incompetent patients. Instead, the standard of care should be derived from the deliberations of particular communities. A “community-federated” plan would enhance individual choice and diminish family and physician uncertainty     

The contribution of demoralization to end of life decisionmaking

Some psychiatrists believe that “demoralization syndrome” is a diagnosable cognitive disorder characterized in its extreme form by morbid existential distress. If they are right, then it should be an important part of our thinking about end of life decisionmaking. A demoralized patient would be unable to think reliably about the remainder of her life, and therefore incompetent to decide to commit physician‐assisted suicide.     

Decisions at the End of Life

To guide treatment decisions for incompetent patients who have no advance directives, health care institutions should look to the preferences of their own communities of patients. That is the best way to ensure that incompetent patients' wishes will be followed.     

Respect for personal autonomy, human dignity, and the problems of self-directedness and botched autonomy

This paper explores the value of respect for personal autonomy in relation to clearly immoral and irrational acts committed freely and intentionally by competent people. Following Berlin's distinction between two kinds of liberty and Darwall's two kinds of respect, it is argued that coercive suppression of nonautonomous, irrational, and self-harming acts of competent persons is offensive to their human dignity, but not disrespectful of personal autonomy. Irrational and immoral choices made by competent people may claim only the negative liberty to be left alone. Lives disposed to autonomy are worthy of solidarity and active support in addition to the right of free choice and action. Autonomous premeditated desires (distinguished from mere consent) may embody transcendental choices, which transcend consideration of physical and psychological well-being. Choices made by incompetent persons (e.g., children and the mentally disabled) are not related to autonomy, but to self-directedness. The value of human dignity confers protection to self-directedness, but not at the expense of other vital interests.     

Death and best interests: a response to the legal challenge

In an earlier paper I argued that we do not have an objective conception of best interests and that this is a particular problem because the courts describe that they use an '…objective approach or test. That test is the best interests of the patient' when choosing for children. I further argued that there was no obvious way in which we could hope to develop an objective notion of best interests. As well as this, I argued that a best-interest-based approach was a particular problem around the time of death of some children. A response from a legal perspective argued that, while there is not a clear conception of objective best interests, the courts have a well-described approach to finding a child's objective best interests. In this paper, I argue that without clear agreement on an objective conception of best interests, the courts are unable to locate an objective sense of best interests and that the solutions do not solve the problems that were identified in the initial paper 'Death and best interests'.     

Conflicting interests,social justice and proxy consent to research

Historically the primary role of the Institutional Review Board (IRB) has been "to assure, both in advance and by periodic review, that appropriate steps are taken to protect the rights and welfare of humans participating as subjects in research" (U.S. FDA, 1996). However, there is much to suggest that IRBs have been unable to fulfil this mandate, particularly in regard to the matter of informed consent. Part of the problem in this regard is that the competing interests of other stakeholders often undermine the IRB's capacity to serve the best interests of research subjects. This paper proposes an alternative view of the role of the IRB. It begins by treating the interests of other stakeholders as legitimate matters of concern for IRBs. Hence the process established to review and monitor human research should be treated as an exercise in social justice in which the interests of all legitimate stakeholders must be represented and considered. A variation of Rawls' (1971) heuristic "the veil of ignorance" is employed to explore the dynamic relationship between knowledge and interests that ensues when the role of the IRB is characterized in this manner. Inadequacies in the informed consent process are taken as illustrative of the inability of IRBs as they are presently construed to attend to the interests of research subjects. The major normative implication of the analysis offered here is that the role of the IRB must be expanded to include the granting of a provisional proxy consent on behalf of prospective research subjects. This provision is necessary, it is argued, if the interests of research subjects are to be fairly assessed by IRBs as a matter of social justice. It is necessary as well to ensure that an adequate standard of informed consent is attained. Somewhat paradoxically it is argued that the interests of research subjects are better served when treated as one among a number of competing sets of interests the IRB must serve, rather than as the primary concern of the IRB.     

Abandoning Informed Consent

Clinicians cannot obtain valid consent to treatment because they cannot guess which treatment option will serve a particular patient's best interests. These guesses could be made more accurately if patients were paired with providers who share their deep values.     

The medical teacher's job: "Working together to zero in on patient safety, and zero out preventable errors" (Clinton 1999)

The role of a medical teacher proposed 25 years ago is still recommended. Some teachers are born to greatness, but more careful and more thoughtful attention, rather than less, should be given to preparation for that role for those not born to greatness. In addition the penury of blueprint of the expected relevant professional profile makes it difficult to construct certifying exams of an acceptable level of validity in order to protect the population from incompetent doctors.     

Strategic ambiguities in the process of consent: role of the family in decisions to forgo life-sustaining treatment for incompetent elderly patients

This paper evaluates the Hong Kong approach to consent regarding the forgoing of life-sustaining treatment for incompetent elderly patients. It analyzes the contextualized approach in the Hong Kong process-based, consensus-building model, in contrast to other role-based models which emphasize the establishment of a system of formal laws and a clear locus of decisional authority. Without embracing relativism, the paper argues that the Hong Kong model offers an instructive example of how strategic ambiguities can both make good sense within particular cultural context and serve important moral goals.     

In the best interests of

Two commentaries examine the validity of the concept of "best interests of the infant" as the moral criterion upon which to base an ethically sound decision concerning medical care. Four opposing lines of argument, that infants have no interests in continued life, that infants' interests are unknowable, that an interests appeal can yield counterintuitive results, and that others' interests also deserve consideration are presented by Brody to show the complexity and ambiguity of treatment decisions. Bartholome argues that, while the concept of best interests does not function well as an objective criterion for analysis of medical ethical problems, it has value as a device that locates what is at stake in a problem and focuses the decision making process.     

Reality checks

Giving up on our dreams is not easy. I am a neonatologist, and I often watch the parents of my patients wish for the impossible. They come to the NICU with their own stories, their own expectations, and their own values. They have had nine long months to imagine their perfect child and often struggle with learning to accept the hand they have been dealt and the child they really have. Neonatology and geriatrics have a lot in common. Both specialties treat patients who cannot describe their symptoms. Both deal with family members who are serving as surrogate decision-makers. These family members often wrestle with end‐of‐life issues, and they share a tendency to sometimes base their decisions on emotions rather than on the best interests of the patients involved. I know this, but I didn't really understand it until I lived it.     

Swiss Guidelines on Care of the Dying

In November 1976 the Swiss Academy of Medical Sciences issued guidelines on caring for the dying. The guidelines themselves are brief and stress the physician's duty to offer personal support and care as well as medical treatments. As for discontinuing treatment, the physician should abide by the will of the competent patient; in the case of the incompetent or unconscious patient, relatives should be consulted but “the final decision belongs to the physician,” acting on what he presumes is the patient's desire. Reprinted here is a translation of the accompanying Commentary on these guidelines, which repeats and elaborates the original points. The guidelines propose wide discretionary powers for the physician, under the rubric of gestion sans mandat or Geschäftsführung ohne Auftrag, a Swiss legal category providing for urgent interventions on behalf of someone unable to give consent. At the same time, the role of the family or next-of-kin is relatively diminished. As the unilateral statement of a medical association, these guidelines have no apparent legal force; but they may well be taken into consideration by Swiss courts deciding difficult cases.     

Capacity for Preferences: Respecting Patients with Compromised Decision‐Making

When a patient lacks decision‐making capacity, then according to standard clinical ethics practice in the United States, the health care team should seek guidance from a surrogate decision‐maker, either previously selected by the patient or appointed by the courts. If there are no surrogates willing or able to exercise substituted judgment, then the team is to choose interventions that promote a patient's best interests. We argue that, even when there is input from a surrogate, patient preferences should be an additional source of guidance for decisions about patients who lack decision‐making capacity. Our proposal builds on other efforts to help patients who lack decision‐making capacity provide input into decisions about their care. For example, “supported,” “assisted,” or “guided” decision‐making models reflect a commitment to humanistic patient engagement and create a more supportive process for patients, families, and health care teams. But often, they are supportive processes for guiding a patient toward a decision that the surrogate or team believes to be in the patient's medical best interests. Another approach holds that taking seriously the preferences of such a patient can help surrogates develop a better account of what the patient's treatment choices would have been if the patient had retained decision‐making capacity; the surrogate then must try to integrate features of the patient's formerly rational self with the preferences of the patient's currently compromised self. Patients who lack decision‐making capacity are well served by these efforts to solicit and use their preferences to promote best interests or to craft would‐be autonomous patient images for use by surrogates. However, we go further: the moral reasons for valuing the preferences of patients without decision‐making capacity are not reducible to either best‐interests or (surrogate) autonomy considerations but can be grounded in the values of liberty and respect for persons. This has important consequences for treatment decisions involving these vulnerable patients.     

The Right to Know: A Revised Standard for Reporting Incidental Findings

During the course of biomedical research, researchers sometimes obtain information on participants that is outside the aim of the study but may nonetheless be relevant to the participants. These incidental findings, as they are known, have been the focus of a substantial amount of discussion in the bioethics literature, and a consensus has begun to emerge about what researchers should do in light of the possibility of incidental findings. A consensus, however, is not necessarily correct. In this article, we address the common view that reporting of incidental findings should be based primarily on the possibility of medical benefit, factoring in the findings’ validity, clinical actionability, and significance to health or reproduction. While such medical beneficence should not be discarded, the need to give proper attention to participants’ autonomy, privacy, and interests (especially considering discussion of participants’ right not to know) suggests an alternative standard for when to report incidental findings: even if they are of no direct medical benefit, incidental findings should be reported based on the extent to which the participant can be expected to comprehend the information. We will offer a preliminary defense of this alternative as best respecting participants’ autonomy and privacy and promoting their interests. However, we acknowledge that the standard would face significant practical barriers, and these barriers lead us to propose a metaconsent addendum that would allow subjects to essentially waive the comprehension standard when resource or other constraints make meeting it impracticable.     

Nonfeeding: lawful killing in CA, homicide in NJ

Appellate courts in California and New Jersey have reached conflicting conclusions in the first legal tests of whether artificial feeding is a "medical treatment," and whether it is ever legally permissible to allow a patient to die from dehydration or starvation. In a criminal prosecution of physicians Robert Nejdl and Neil Barber, the California court ruled that there was no significant difference between a respirator and intravenous feeding, and that the two doctors had no legal duty to continue "futile" treatment of their irreversibly comatose patient. The New Jersey court rejected as purposeful killing a request to remove the nasogastric tube from elderly nursing home patient Claire Conroy, who was incompetent but not comatose. Annas considers the issue of pain or suffering to be central to decision making in such cases.     

Observations of physician, patient and family perceptions of informed consent in Houston, Texas

Informed consent is one of the most important ethical and legal principles in the United States, including Texas, and reflects a profound respect for individuals and their ability to make decisions in their own best interest. It is also a critical underpinning of medical practice, although how it is actually carried out has not been well studied. A survey was conducted in the private practices and a hospital in the Texas Medical Center in Houston, Texas to ascertain how physicians, patients and patient's family members perceive and demonstrate the elements of informed consent. In-depth interviews of twelve physicians, three patients and three family members were carried out. For physicians, consent was an explicit and implicit aspect of virtually all medical practice. Physicians would seek patient input concerning medical decisions whenever possible and might also discuss care choices with families. However, they often made decisions based upon what they perceived as the patient's best interests. Patients expected the physician to involve them in the decision process, but whether they turned to family members, or even others to assist them, varied considerably. Although Texas physicians respect the competent patient as the primary decision maker, they may bypass a formal surrogate decision maker to gain input from others, including their own view of what is in the patient's best interest.     

Balancing individual and communal needs: plague and public health in early modern Seville

This article offers a reexamination of the impact of bubonic plague epidemics, using sixteenth-century Seville as a case study. It argues that municipal health officials did not simply shut down the city in times of plague, but successfully negotiated a balance between medical concerns and economic interests. While officials enacted a traditional regimen of public health measures, such as travel bans and quarantines, they also maintained open lines of communication with residents and continually allowed individual exemptions from plague restrictions. Such exemptions empowered residents, allowed trade to continue, and dissipated popular resistance. Redefining public health to more broadly include the overall well-being of the community, this article finds that Seville's health officials successfully maintained public health by balancing the needs of the individual and the community.     

There Are All Kinds of Rights

Some years ago I received a phone call telling me that my mother, then in her eighties, had been found wandering the street outside her home. It was the first indication my wife and I had of Alzheimer's disease. We arrived to discover that my mother was incoherent, with the house in disorder, bills unpaid, and perishable food in the night table rather than the refrigerator. Having spent much of my career trying to improve the assessment of decisional capacity, in part to avoid unnecessary deprivation of decision‐making rights, I did not take lightly the step to have my mother declared incompetent. But it was necessary. This episode has been on my mind since I returned recently from a conference in Paris devoted to the United Nations Convention on the Rights of Persons with Disabilities.     

Conceived and deceived: the medical interests of donor-conceived individuals

Effective July 22, 2011, a new law in the state of Washington requires any donor of sperm or eggs to provide a medical history and identifying information to fertility clinics. It also allows donor‐conceived individuals to request this information from clinics once they reach the age of eighteen. This is a significant legislative milestone and a promising development in a country that has consistently shied away from regulating the infertility industry in any way. What do we as a society owe donor‐conceived individuals in terms of obtaining access to information about their genetic origins? This essay addresses just one of this set of issues: the regulatory changes required to address the medical interests of donor‐conceived individuals, regardless of whether a human right to know one's genetic origins is acknowledged.     

"Paradoxes, absurdities, and madness": conflict over alchemy, magic and medicine in the works of Andreas Libavius and Heinrich Khunrath

Both Andreas Libavius and Heinrich Khunrath graduated from Basel Medical Academy in 1588, though the theses they defended reveal antithetical approaches to medicine, despite their shared interests in iatrochemistry and transmutational alchemy. Libavius argued in favour of Galenic allopathy while Khunrath promoted the contrasting homeopathic approach of Paracelsus and the utility of the occult doctrine of Signatures for medical purposes. This article considers these differences in the two graduates' theses, both as intimations of their subsequent divergent notions of the boundaries of alchemy and its relations with medicine and magic, and also as evidence of the surprisingly unstable academic status of Paracelsian philosophy in Basel, its main publishing centre, at the end of the sixteenth century.