I consider the current best interests of patients who were once thought to be either completely unaware (to be in PVS) or only minimally aware (MCS), but who, because of advanced fMRI studies, we now suspect have much more “going on” inside their minds, despite no ability to communicate with the world. My goal in this chapter is twofold: (1) to set out and defend a framework that I think should always guide thinking about the best interests of highly cognitively (...) compromised patients, and then (2) to defend a particular conclusion that applies to this specific patient population. The framework requires us to ask two questions: Is the individual suffering? Is the individual gaining any benefit from life? There must be benefit of some sort for life to be worth preserving, and the benefit must outweigh any suffering (if there is suffering present). I then argue it would be best overall to allow these patients to die. Either these patients are not really very aware at all, in which case they are most likely not suffering, but not benefiting from life either, or they are mentally intact enough to make benefit a theoretical possibility, but in fact they are not benefiting because they cannot communicate with anyone. Such patients would most likely suffer. As there is no way currently to address their suffering, we should allow them to die. No matter the truth about their cognitive lives, death would either be a neutral event, or a blessing. (shrink)

Throughout the Western world people turn towards the health care system seeking help for a variety of psychosomatic/psychosocial health problems. They become “patients” and find themselves within a system of practises that conceptualizes their bodies as “objective” bodies, treats their ill health in terms of the malfunctioning machine, and compartmentalizes their lived experiences into medically interpreted symptoms and signs of underlying biological dysfunction. The aim of this article is to present an alternative way of describing ill health and rehabilitation using (...) the philosophy of Maurice Merleau-Ponty in order to deepen our understanding of the rehabilitation process. I will explore how the experience of chronic pain ruptures the natural connection between body and world and how the rehabilitation process can be understood as the re-insertion of the body into the flow of experience, where the body “disappears” into its natural silence in order to allow the world to once again unfold. The experience of chronic pain places the painful body in focus, resulting in a diminished articulation of both self and world. Persons with illness suffer not only from the physical aspects of pain and discomfort but also from a loss of identity where one feels alienated and detached from things that used to give meaning to ones life. Rehabilitation must not only address the material (medical) body but also the diminished sense of self as well as the retreat from the world outside of the painful body. (shrink)

What is the relationship between pain and the body? I claim that pain is best explained as a type of personal experience and the bodily response during pain is best explained in terms of a type of mechanical neurophysiologic operation. I apply the radical philosophy of identity theory from philosophy of mind to the relationship between the personal experience of pain and specific neurophysiologic mechanism and argue that the relationship between them is best explained as one of type identity. Specifically, (...) pain is a specific type of personal experience identical to a specific type of allostatic stress response comprised of interdependent nervous, endocrine and immune mechanical operations. (shrink)

Consolation is needed when a human being suffers (i.e. feels alienated from him-or herself, from other people, from the world or from his or her ultimate source of meaning). The aim of this study was to illuminate the meaning of consolation. Tape-recorded narrative interviews were carried out with 18 professionals from various spheres. The transcribed interviews were interpreted hermeneutically. A model of consolation is outlined in a drawing. It states that the mediator and the receiver of consolation must become ready (...) for consolation before it can take place. To be ready means to be present and available. Availability means expressing suffering and listening respectively, and thereby opening up for communion and consoling dialogue. Communion brings about contact with the sacred dimension that human beings share and thus with goodness, light, joy, beauty and life. Consolation involves a shift of perspective and an experience of meaning in spite of suffering. (shrink)

Modern military organizations are paternalistic organizations. They typically recognize a duty of care toward military personnel and are willing to ignore or violate the consent of military personnel in order to uphold that duty of care. In this paper, we consider the case for paternalism in the military and distinguish it from the case for paternalism in medicine. We argue that one can consistently reject paternalism in medicine but uphold paternalism in the military. We consider two well-known arguments for the (...) conclusion that military organizations should not be entitled to use experimental drugs on troops without first obtaining the informed consent of those troops. We argue that both of these are unsuccessful, in the absence of an argument for the rejection of paternalism in the military altogether. The case for military paternalism is widely accepted. However, we consider three ways in which it could be challenged. (shrink)

Though much is written about animal suffering, little is said about the nature of suffering itself. Without any clarity about its conceptual nature, discussions concerning detection, prevention and reduction of suffering are seriously hampered. This paper considers – and rejects – some of the more usual understandings of suffering. Instead, an alternative understanding of suffering is proposed, namely that suffering is the experiencing of one's life as going badly. This notion is tied to the loss of individuals' central life projects. (...) It is suggested that non-human animals' central projects are their evolved survival skills. This alternative view of suffering has major implications for animal welfare. (shrink)

This paper focuses on the practice of injecting patients who are dying with a relatively high dose of sedatives in response to a catastrophic event that will shortly precipitate death, something that we term ‘crisis sedation.’ We first present a confabulated case that illustrates the kind of events we have in mind, before offering a more detailed account of the practice. We then comment on some of the ethical issues that crisis sedation might raise. We identify the primary value of (...) crisis sedation as allowing healthcare professionals to provide some degree of reassurance to patients, their families and the professionals who are caring for them. Next we focus on the issue of informed consent. Finally, we ask whether continuous deep sedation might be preferable to crisis sedation in scenarios where potential catastrophic events can be anticipated. (shrink)

This article argues that the early Christian ?order of widows? provides a fruitful model for Christian ethicists struggling to address the medical and social problems of elderly women today. After outlining the precarious state of the ?almanah? - or widow - in biblical times, it describes the emergence of the order of widows in the early Church. Turning to the contemporary situation, it argues that demographics both in the United States and around the globe suggest that meeting the needs of (...) elderly women will become an enormous challenge in the years to come. The order of widows illustrates a three-fold conception of solidarity that has immediate implications today. That conception of solidarity encourages us: 1) to identify the unique medical needs of elderly women (e.g., osteoporosis); 2) to find ways of overcoming their societal isolation, which can increase their risk of medical and psychological problems; and 3) to develop strategies for enabling them to remain contributing members of the community for as long as possible. This essay is a slightly revised version of a keynote address given by the author at a conference on ?Women?s Health and Human Rights? held in Rome, Italy in February 1998 and sponsored by the Vatican, Georgetown University, and the Università Cattolica del Sacro Cuore. The proceedings of that conference were published in Italy by the Società Editrice Universo-Roma in a volume entitled Women?s Health Issues, edited by Spagnolo and Gambino (2003). (shrink)

Despite the central place of suffering in medical care, suffering in infants and nonverbal children remains poorly defined. There are epistemic problems in the detection and treatment of suffering in infants and normative problems in determining what is in their best interests. A lack of agreement on definitions of infant suffering leads to misunderstanding, mistrust, and even conflict amongst clinicians and parents. It also allows biases around intensive care and disability to affect medical decision-making on behalf of infants. In this (...) paper, I propose the concept of suffering pluralism, which is a novel multidimensional view of infant suffering based on subjective and objective components. The concept of suffering pluralism is more inclusive of the multiple ways in which infant suffering can occur. It acknowledges and defines a subjective component to infant suffering, while also focusing moral attention on objective well-being by describing it using the language of suffering. This concept allows us to better weigh up subjective and objective components of well-being. It also encourages clarity and consistency in claiming suffering, which is likely to improve communication and reduce conflict in medical decision-making for unwell infants and children. I will end by exploring possible critiques and limitations of this concept. (shrink)

The ethical foundation of the medical profession, which values service above reward and holds the doctor-patient relationship as inviolable, continues to be challenged by the commercialization of health care. This article contends that a realigned leadership framework - one that distinguishes being a leader as the ontological basis for what leaders know, have, and do - is central to safeguarding medicine's ethical foundation. Four ontological pillars of leadership - awareness, commitment, integrity, and authenticity - are proposed as fundamental elements that (...) anchor this foundation and the basic tenets of professionalism. Ontological leadership is shaped by and accessible through language; what health care leaders create in language "uses" them by providing a point of view (a context) within and from which they orient their conversations, decisions, and conduct such that they are ethically aligned and grounded. This contextual leadership framework exposes for us the limitations imposed by our mental maps, creating new opportunity sets for being and action (previously unavailable) that embody medicine's charter on professionalism. While this leadership methodology contrasts with the conventional results-oriented model where leading is generally equated with a successful clinical practice, a distinguished research program, or a promotion, it is not a replacement for it; indeed, results are essential for performance. Rather, being and action are interrelated and their correlated nature equips leaders with a framework for tackling health care's most complex problems in a manner that preserves medicine's venerable ethical heritage. (shrink)

This article argues that while the presence and influence of “futility” as a concept in medical decision-making has declined over the past decade, medicine is seeing the rise of a new concept with similar features: suffering. Like futility, suffering may appear to have a consistent meaning, but in actuality, the concept is colloquially invoked to refer to very different experiences. Like “futility,” claims of patient “suffering” have been used (perhaps sometimes consciously, but most often unconsciously) to smuggle value judgments about (...) quality of life into decision-making. And like “futility,” it would behoove us to recognize the need for new, clearer terminology. This article will focus specifically on secondhand claims of patient suffering in pediatrics, but the conclusions could be similarly applied to medical decisions for adults being made by surrogate decision-makers. While I will argue that suffering, like futility, is not sufficient wholesale justification for making unilateral treatment decisions, I will also argue that claims of patient suffering cannot be ignored, and that they almost always deserve some kind of response. In the final section, I offer practical suggestions for how to respond to claims of patient suffering. (shrink)

Cartesian dualism has been viewed by medical theorists to be oneof the chief causes of a reductionist/mechanistic treatment ofthe patient. Although I aver that Cartesian dualism is one culprit for the misapprehension of the genuine treatment of patients in termsof both mind and body, I argue that interactive dualism whichstresses the interaction of mind and body is essential to treatpatients with dignity and compassion. Thus, adequate medical carethat is humanistic in nature is difficult (if not impossible)to achieve without physicians adhering (...) to a dualistic frameworkin which the body and person is treated during illness. (shrink)

As medical technology continues to improve, more people will live longer lives with multiple chronic illnesses with increasing cumulative debilitation, including cognitive dysfunction. Combined with the aging of society in most developed countries, an ever-growing number of patients will require surrogate decision-makers. While advance care planning by patients still capable of expressing their preferences about medical interventions and end-of-life care can improve the quality and accuracy of surrogate decisions, this is often not the case, not infrequently leading to demands for (...) ineffective, inappropriate and prolonged interventions. In 1980 LaFollette called for the licensing of prospective parents, basing his argument on the harm they can do to vulnerable people. In this paper, I apply his arguments to surrogate decision-makers for cognitively incapacitated patients, rhetorically suggesting that we require potential surrogates to qualify for this position by demonstrating their ability to make reasonable and rational decisions for others. I employ this theoretical approach to argue that the loose criteria by which we authorize surrogates’ generally unchallenged power should be reconsidered. (shrink)

Judith Butler's (2006) account of vulnerability, resonant with other accounts offered by feminist theorists of embodiment (such as Margrit Shildrick [2000] and Rosalyn Diprose [2002]), underscores a "conception of the human . . . in which we are, from the start, given over to the other, one in which we are, from the start, even prior to individuation itself and, by virtue of bodily requirements, given over to some set of primary others" (31). She is concerned with how this state (...) of being—"not only constituted by our relations but also dispossessed by them as well" (24)—becomes recognized, or not, in the political production and recognition of vulnerability, and the suffering that occurs in the violent .. (shrink)

There is a curious asymmetry in cases where the use of religious language involves a breakdown in communication and leads to a seemingly intractable dispute. Why does the use of religious language in such cases almost always arise on the side of patients and their families, rather than on the side of clinicians or others who work in healthcare settings? I suggest that the intractable disputes arise when patients and their families use religious language to frame their problem and the (...) possibilities of solution. Unlike clinicians, they are not bilingual and thus lack the capacity to understand and negotiate differences in terms that are responsive to those who work in healthcare settings. After considering a representative case, I explore whether an ethics consultant or chaplain can function as a translator and suggest that, at best, such efforts at mediation depend on contingent aspects of a case and will only be partially successful. To appreciate limits on the role for bilingual translators, I consider a futility dispute where a parent using religious language demands that everything be done for a permanently unconscious child. I challenge the traditional interpretation that says the parent values “mere duration of biological life irrespective of quality.” From a religious perspective, human life is never “merely biological.” This effort to slot the dispute into standard philosophical schemas misses what is crucial in the dispute. I suggest that a better interpretation views the dispute at a meta-level as one about whether withholding and withdrawing care is morally distinguishable from killing. Curiously, this interpretation makes the advocate of futile care into an ally of those “quality of life” advocates who also challenge this distinction. The crux of their dispute now rests on the normative ethics of killing. While I think my interpretation comes much closer to the views of many who demand ‘futile care,’ I suggest that it still falls short because of the way it reconstructs the religious concerns in nonreligious terms. I close by considering an analogy between the language of suffering and the language of faith, suggesting that both require a much richer understanding of the narratives that orient the lives of patients and their families. (shrink)

On one side of his sign board, a nineteenth century surgeon depicted a physician operating on a patient's leg; the other side showed the Good Samaritan taking care of the victim's wounds. Christ's parable has often been quoted and depicted as a primary example of human compassion, to be followed by all persons and, a fortiori, by so-called professionals such as physicians and nurses. If we grant that the parable has not lost its narrative power for 20th century “postmodern” readers (...) living in a “pluralistic” society, it merits a closer analysis. (shrink)

This paper has two aims. The first is to defend a recent critique of the leading medical theory of suffering, which alleges too narrow a focus on violent experiences of suffering. Although sympathetic to this critique, I claim that it lacks a counterexample of the kinds of experiences the leading theory is said to neglect. Drawing on recent clinical cases and the longer intellectual history of suffering, my paper provides this missing counterexample. I then answer some possible objections to my (...) defence, before turning to my second aim: an expansion of my counterexample into a spectrum of suffering that varies according to the selves and purposes that suffering affects. Next, I connect this spectrum to the tolerability of suffering, which I distinguish from its affective intensity. I conclude by outlining some applications of this distinction for the psychometric reliability of assessment instruments that measure suffering in clinical contexts. (shrink)

Time and philosophical fashion have not been kind to hedonism. After flourishing for three centuries or so in its native empiricist habitat, it has latterly all but disappeared from the scene. Does it now merit even passing attention, for other than nostalgic purposes? Like endangered species, discredited ideas do sometimes manage to make a comeback. Is hedonism due for a revival of this sort? Perhaps it is overly optimistic to think that it could ever flourish again in its original form; (...) the evolutionary changes which have rendered the philosophical environment hostile to the classical specimens of the theory are doubtless irreversible. None the less, it is still possible that certain features of the classical view can, and should, be recuperated—like bits of DNA which could contribute to the emergence of new and more robust species. So let us ask ourselves: what is living and what is dead in traditional hedonism? (shrink)

A diagnosis of glioblastoma multiforme, a World Health Organisation grade IV brain tumour, is devastating for patients and their families who bear the impetus of caregiving. GBM caregivers act as de facto health professionals when their loved ones are discharged prematurely from hospitals. Faced with complex healthcare needs, GBM caregivers report the highest psychological burden, and highest unmet needs of all cancer caregivers. Despite this, they rarely accessed rehabilitation services. Researchers hardly engaged with their stories. The current research on GBM (...) caregiving is predominantly from a biomedical perspective, not only offering limited understandings of psychosocial experiences, but also, evidencing the need for caregiver stories in caregiving research. The researcher recruited 7 bereaved caregivers, who had previously narrated stories online about caring for their loved ones diagnosed with GBM and; consented to the use of their stories as research data. These stories covered a period of between 1-3+ years, throughout the illness trajectory and post-bereavement. The researcher further conducted email interviews focussed on the retrospective perspectives of sharing stories online. Participants provided feedback on the preliminary findings of the DNA. The findings consisted of multiple layers of interpretations drawn from social constructionism, narrative and feminist relational theories, beginning with subjective stories, collective story typologies and core narratives, thereby illuminating the relationships between GBM caregivers, the stories they narrated and the event of narrating stories online. An additional layer of interpretation served to shed light on the relational, dialogical, performative and hindsight perspectives of storytelling and the storytelling landscape. This research decentres the dominance of biomedicine in caregiving research to present a perspective from GBM caregivers using their own stories, in their own voices, so as to inform counselling psychology research and practice. (shrink)

Until quite recently bioethicists have had little of depth and probity to say about the duty of healthcare professionals in general and physicians in particular to relieve pain and suffering associated with disease and/or its treatment.

Background: Improved techniques and life sustaining technology in the neonatal intensive care unit have resulted in an increased probability of survival for extremely premature babies. The by-product of the aggressive treatment is iatrogenic pain, and this infliction of pain can be a cause of suffering and distress for both baby and nurse. Research question: The research sought to explore the caregiving dilemmas of neonatal nurses when caring for extremely premature babies. This article aims to explore the issues arising for neonatal (...) nurses when they inflict iatrogenic pain on the most vulnerable of human beings – babies ≤24 weeks gestation. Participants: Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in New South Wales, Australia. Ethical consideration: Ethical processes and procedures set out by the ethics committee have been adhered to by the researchers. Findings: A qualitative approach was used to analyse the data. The theme ‘inflicting pain’ comprised three sub-themes: ‘when caring and torture are the same thing’, ‘why are we doing this!’ and ‘comfort for baby and nurse’. The results show that the neonatal nurses were passionate about the need for appropriate pain relief for extremely premature babies. Conclusion: The neonatal nurses experienced a profound sense of distress manifested as existential suffering when they inflicted pain on extremely premature babies. Inflicting pain rather than relieving it can leave the nurses questioning their role as compassionate healthcare professionals. (shrink)