Dignity and Narrative Medicine

Critiques of the dehumanising aspects of contemporary medical practice have generated increasing interest in the ways in which health care can foster a holistic sense of wellbeing. We examine the relationship between two areas of this humanistic endeavour: narrative and dignity. This paper makes two simple arguments that are intuitive but have not yet been explored in detail: that narrative competence of carers is required for maintaining or recreating dignity, and that dignity promotion in health care practice is primarily narrative in form. The multiple meanings that dignity has in a person’s life are what give the concept power and can only be captured by narrative. This has implications for health care practice where narrative work will be increasingly required to support patient dignity in under-resourced and over-subscribed health care systems.     

Dignity and indignation: bridging morality and political economy in contemporary Spain

In the current Spanish conjuncture, characterized by political and economic crisis and the rapid impoverishment of the working classes, we have seen the emergence of moral discourses around indignation and the demand of dignity. While these moral exhortations have rightly been scrutinized with skepticism from Marxist positions for their lack of attention to political economic structures, this paper discusses whether we can find in them elements for what Gavin Smith calls a “revindicative politics,” able to transcend the frame of reference of the society of capital. Exploring the notion of dignity both in the Indignados movement and in my own ethnographic field site of Southern Catalonia—a region where claims to dignity have saturated the sphere of the political for decades—I suggest that the demand for dignity should be understood as an expression of what Ernst Bloch called “nonsynchronous contradictions,” being not entirely reducible to the contemporary workings of capitalist accumulation. Dignity points toward unsettled memories and unfulfilled pasts as well as to a rejection of servile relations and the desire to make sense of oneself outside of the morality of capital. Understanding this demand for dignity forces Marxist anthropologists to look at capital from the “margins,” challenging its centrality. In so doing it also invites us to refine and invigorate our critique of political economy.     

Donor Conception Disclosure: Directive or Non-Directive Counselling?

It is widely agreed among health professionals that couples using donor insemination should be offered counselling on the topic of donor conception disclosure. However, it is clear from the literature that there has long been a lack of agreement about which counselling approach should be used in this case: a directive or a non-directive approach. In this paper we investigate which approach is ethically justifiable by balancing the two underlying principles of autonomy (non-directive approach) and beneficence (directive approach). To overrule one principle in favour of another, six conditions should be fulfilled. We analyse the arguments in favour of the beneficence principle, and consequently, a directive approach. This analysis shows that two conditions are not met; the principle of autonomy should not be overridden. Therefore, at this moment, a directive counselling approach on donor conception disclosure cannot be ethically justified.     

Focus: Bioethics: Rethinking Benefits in Health Research,Reflections of an Ethics Committee

The principle of beneficence in health research implies the effort of researchers to minimize risk to participants and maximize benefits to participants and society, which could be considered an abstract definition. Therefore, the benefits are not easily conceived by researchers who fail to achieve their goal, which is to privilege the well-being of participants. The purpose of this work was to describe and discuss the theoretical elements that support the principle of beneficence so that their knowledge allows designing and granting adequate benefits to participants. The present document defines the principle of beneficence. It also analyzes the maximization of benefits, the distinctions between different classifications of benefits, and the differentiation from compensations or incentives. With all this information, researchers must do a critical deliberation to select adequate benefits for participants of their studies, considering the type of study, potential participants, probability of risk, among others. These benefits should not be understood as a charity that researchers grant to the participant; they should be conceived as any form of action in favor of the well-being of participants. Participants must always be considered as moral agents, responsible for deciding whether the benefits would outweigh the possible negative unintended consequences of a particular study. Finally, no risk should be taken if it is not commensurate or proportional to the benefit of the research study.     

Dignity,conscience and religious pluralism in healthcare: An argument for a presumption in favour of respect for religious belief

Religious pluralism in healthcare means that conflicts regarding appropriate treatment can occur because of convictions of patients and healthcare workers alike. This contribution argues for a presumption in favour of respect for religious belief on the basis that such convictions are judgements of conscience, and respect for conscience is core to what it means to respect human dignity. The human person is a subject in relation to all that is. Human dignity refers to the worth of human persons as members of the species with capacities of reason and free choice that enable the realisation of dignity as self-worth through morally good behaviour. Conscience is both a feature of inherent dignity and necessary for acquiring dignity as self-worth. Conscience enables a person to identify objective values and disvalues for human flourishing, the rational capacity to reason about the relative importance of these values and the right way to achieve them and the judgement of the good end and the right means. Human persons are bound to follow their conscience because this is their subjective relationship to objective truth. Religious convictions are decisions of conscience because they are subjective judgements about objective truth. The presumption of respect for religious belief is limited by the normative dimension of human dignity such that a person's beliefs may be overridden if they objectively violate inherent dignity or morally legitimate acquired dignity.     

CLARIFYING APPEALS TO DIGNITY IN MEDICAL ETHICS FROM AN HISTORICAL PERSPECTIVE

Over the past few decades the concept of (human) dignity has deeply pervaded medical ethics. Appeals to dignity, however, are often unclear. As a result some prefer to eliminate the concept from medical ethics, whereas others try to render it useful in this context. We think that appeals to dignity in medical ethics can be clarified by considering the concept from an historical perspective. Firstly, on the basis of historical texts we propose a framework for defining the concept in medical debates. The framework shows that dignity can occur in a relational, an unconditional, a subjective and a Kantian form. Interestingly, all forms relate to one concept since they have four features in common: dignity refers, in a restricted sense, to the 'special status of human beings'; it is based on essential human characteristics; the subject of dignity should live up to it; and it is a vulnerable concept, it can be lost or violated. We argue that being explicit about the meaning of dignity will prevent dignity from becoming a conversation-stopper in moral debate. Secondly, an historical perspective on dignity shows that it is not yet time to dispose of dignity in medical ethics. At least Kantian and relational dignity can be made useful in medical ethics.     

Human Dignity as a Component of a Long-Lasting and Widespread Conceptual Construct

For some decades, the concept of human dignity has been widely discussed in bioethical literature. Some authors think that this concept is central to questions of respect for human beings, whereas others are very critical of it. It should be noted that, in these debates, dignity is one component of a long-lasting and widespread conceptual construct used to support a stance on the ethical question of the moral status of an action or being. This construct has been used from Modernity onward to condemn slavery and torture as violations of human dignity. In spelling it out, we can come to a better understanding of what “dignity” means and become aware that there exists a quite useful place for this notion in our ethical thought, albeit a modest one.     

[Re]considering Respect for Persons in a Globalizing World

Contemporary clinical ethics was founded on principlism, and the four principles: respect for autonomy, nonmaleficence, beneficence and justice, remain dominant in medical ethics discourse and practice. These principles are held to be expansive enough to provide the basis for the ethical practice of medicine across cultures. Although principlism remains subject to critique and revision, the four‐principle model continues to be taught and applied across the world. As the practice of medicine globalizes, it remains critical to examine the extent to which both the four‐principle framework, and individual principles among the four, suffice patients and practitioners in different social and cultural contexts. Using the four‐principle model we analyze two accounts of surrogate decision making – one from the developed and one from the developing world – in which the clinician undertakes medical decision‐making with apparently little input from the patient and/or family. The purpose of this analysis is to highlight challenges in assessing ethical behaviour according to the principlist model. We next describe cultural expectations and mores that inform both patient and clinician behaviors in these scenarios in order to argue that the principle of respect for persons informed by culture‐specific ideas of personhood may offer an improved ethical construct for analyzing and guiding medical practice in a globalized and plural world.     

Free riders and pious sons--why science research remains obligatory

John Harris has previously proposed that there is a moral duty to participate in scientific research. This concept has recently been challenged by Iain Brassington, who asserts that the principles cited by Harris in support of the duty to research fail to establish its existence. In this paper we address these criticisms and provide new arguments for the existence of a moral obligation to research participation. This obligation, we argue, arises from two separate but related principles. The principle of fairness obliges us to support the social institutions which sustain us, of which research is one; while the principle of beneficence, or the duty of rescue, imposes upon us a duty to prevent harm to others, including by supporting potentially beneficial, even life-saving research. We argue that both these lines of argument support the duty to research, and explore further aspects of this duty, such as to whom it is owed and how it might be discharged.     

Cryonics for all?

In fascinating recent work, some philosophers have argued that it would be morally permissible and prudentially rational to sign up for cryonics—if you can afford the price tag of the procedure. In this paper I ask: why not share the elixir of extended life with everyone? Should governments financially support, positively encourage, or even require people to undergo cryonics? From a general principle of beneficence, I construct a formal argument for cryonics promotion policies. I consider the objection that a subset of these policies would violate autonomy, but I argue that—to the contrary—considerations of autonomy weigh in their favour. I then consider objections based on cost and population, but argue that neither is fatal. Finally, I raise the objection that I believe poses the most serious challenge: that those who revive the cryonically preserved might inflict suffering upon them.     

Patient Perspectives of Dignity,Autonomy and Control at the End of Life: Systematic Review and Meta-Ethnography

Background

Research in the end-of-life context has explored the sense of dignity experienced by patients with advanced disease, examining the factors associated with it. Whereas certain perspectives regard dignity as an intrinsic quality, independent of external factors, in the clinical setting it is generally equated with the person’s sense of autonomy and control, and it appears to be related to patients’ quality of life. This study aims to explore the relationship between perceived dignity, autonomy and sense of control in patients at the end of life.

Methods

We conducted a systematic review and meta-ethnography using reciprocal translation and line-of-argument synthesis. The search strategy used MeSH terms in combination with free-text searching of the Pubmed, Web of Science, CINAHL, PsycINFO and Cochrane databases, from their inception until 2015. This identified 186 articles, after excluding duplicates. The inclusion criterion was primary qualitative studies in which dignity, autonomy and control at the end of life were explored. Studies were evaluated using the CASP guidelines.

Results

Twenty-one studies recording the experiences of 400 participants were identified. Three themes emerged: a) dignity mediated by the loss of functionality, linked to the loss of control; b) dignity as identity; and c) autonomy as a determining factor of perceived dignity, understood as the desire for control over the dying process and the desire for self-determination. We propose an explanatory model which highlights that those patients with an intrinsic sense of dignity maintained a positive view of themselves in the face of their illness.

Conclusion

This synthesis illustrates how dignity and autonomy are intertwined and can be perceived as a multidimensional concept, one that is close to the notion of personal identity. The ability to regard dignity as an intrinsic quality has a positive impact on patients, and the design of care strategies should take this into account.     

The death of dignity is greatly exaggerated: Reflections 15 years after the declaration of dignity as a useless concept

Fifteen years ago, Ruth Macklin shook the medical community with her claim in the BMJ that dignity is a useless concept. Her essay provoked a storm of reactions. What have we learned from the debate? In this article I analyse the responses to her essay and the following debate to investigate whether she was right that “[d]ignity is a useless concept in medical ethics and can be eliminated without any loss of content.” While some of the commentaries misconstrued her claim and argue against strawmen, others forcefully maintained that the concept of dignity has functions beyond “respect for persons and their autonomy.” One important point that came out of the debate is that dignity is a generic concept that covers more ground than “respect for persons or their autonomy.” In particular, dignity seems to have a wide range of protective functions as well as having reciprocal, relational, and social aspects. Dignity appears more attributional and norm-formative than respect for persons and autonomy. While the claim that dignity is unclear, vague, and can be used sloganistically seems highly relevant, it is argued that this vagueness fulfils important functions in ethics. Moreover, dismissing dignity because of its lack of clarity has implications for “respect for persons” and “autonomy,” which are also used vaguely and sloganistically. No doubt medical ethics should use as a clear concept as the context requires. Nonetheless, dignity still seems to be a widely used generic concept in ethical debates and doing as much ethical work as “respect for persons” or “respect for autonomy.” Therefore, the death of dignity seems to be greatly exaggerated.     

TREATMENT NEEDS IN HIV PREVENTION TRIALS: USING BENEFICENCE TO CLARIFY SPONSOR‐INVESTIGATOR RESPONSIBILITIES

Some participants will get HIV‐infected in HIV prevention trials, despite risk reduction measures. The subsequent treatment responsibilities of sponsor‐investigators have been widely debated, especially where access to antiretroviral therapy (ART) is not available. In this paper, we explore two accounts of beneficence to establish whether they can shed light on sponsor‐investigator responsibilities. We find the notion of general beneficence helpful insofar as it clarifies that some beneficent actions will be obligatory where they can be dispensed without scuppering the trial. We find the notion of specific beneficence helpful insofar as it directs investigators to attend to the needs of trial participants; however the range of interventions that could be provided remains unhelpfully broad. We then examine accounts of the investigator‐participant relationship to narrow the range of interventions that investigators should provide, concluding that health‐care, and HIV infection, are appropriate foci. We conclude that when investigators are able to meet the ART needs of their participants (e.g. referral, assisted referral or direct provision) without sacrificing trial quality, they must do so. However, there is little of this explicit direction to be found in the account of specific beneficence itself, but rather it is found in accounts of the relationship that are compatible with beneficence.     

Self‐ownership,relational dignity,and organ sales

Material property has traditionally been conceived of as separable from its owner and thus alienable in an exchange. So it seems that you could sell your watch or even your kidney because it can be removed from your wrist or abdomen and transferred to another. However, if we are each identical to a living human animal, self‐ownership is impossible for self‐separation is impossible. We thus cannot sell our parts if we don't own the whole that they compose. It would be incoherent to own all of your body's parts but not the whole body; and it would be arbitrary to own some but not all of your removable parts. These metaphysical obstacles to organ sales do not apply to the selling of the organs of the deceased. The human being goes out of existence at death and is not identical to the body's remains. Any objections to selling the organs of the deceased must instead be due to dignity rather than metaphysical or conceptual considerations. But the remains lack the intrinsic dignity of the human being, instead possessing, at best, relational dignity. Relational dignity would not provide sufficient reason to prohibit life‐saving sales.     

From transgression to pragmatism in reproductive medicine

It is difficult to harmonise faith and the desire to follow religious teachings and obligations on the one hand, and scientific advances and their use for the benefit of suffering humanity on the other. This is an especially delicate matter for patients and health professionals in reproductive medicine. It deals with the conflicting issues of contraception, termination of pregnancy, assisted reproduction, cloning, stem cells and embryo research. Beyond the technical aspects of these matters, the theoretical, legal, philosophical and religious implications must be explored, including the concepts of personality, individuality, human dignity, autonomy, beneficence and justice. Most importantly, an analysis must be made of the beginnings of a human being, the protection it deserves, the concept and time of ensoulment, the need for pragmatism and the right of transgression (hence the title of this article).     

Biological control of the rabbit in Australia: lessons not learned?

The story of the spread of the European rabbit across Australia, and of the two viruses used to control it, is an interesting way to look at some of the issues associated with biological control. What can be learned from the way this system developed, and what has been learned, or not learned, from the mistakes made? Here, we look at these events and examine what insights can be gained from this history.     

Does human genome editing reinforce or violate human dignity?

Germline genome editing is often disapproved of at the international policy level because of its possible threats to human dignity. However, from a critical perspective the relationship between this emerging technology and human dignity is relatively understudied. We explore the main principles that are referred to when ‘human dignity' is invoked in this context; namely, the link with eugenics, the idea of a common genetic heritage, the principle of equal birth and broader equality and justice concerns. Yet the concept is also used in favour of germline genome editing as it might improve the overall well-being of future generations. We conclude that dignity concerns do not justify a complete ban on safe heritable genome editing but should inform the implementation of side constraints to ensure that the value judgements about human traits that are inherent in this practice do not result in a diminished basic respect for those people affected by them.     

Beneficial Coercion in Psychiatric Care: Insights from African Ethico‐Cultural System

There is a ‘catch 22’ situation about applying coercion in psychiatric care. Autonomous choices undeniably are rights of patients. However, emphasizing rights for a mentally‐ill patient could jeopardize the chances of the patient receiving care or endanger the public. Conversely, the beneficial effects of coercion are difficult to predict. Thus, applying coercion in psychiatric care requires delicate balancing of individual‐rights, individual well‐being and public safety, which has not been achieved by current frameworks. Two current frameworks may be distinguished: the civil liberty approach and the Stone model. Both frameworks are restrictive, and not respectful of human dignity. In a civil liberty approach, individuals who are severely mentally‐ill but not dangerous would be denied care because they do not meet the dangerousness threshold or because the use of coercion will not lead to rebirthing of autonomy. This is unsatisfactory. Albeit involuntary interventions such as talk therapies, peer‐support etc., may not always lead to rebirthing of autonomy or free patients from mental illness; they can however help to maintain the dignity of each mentally ill patient. In place of these frameworks, this study proposes a new ethical framework for applying coercion in psychiatric care that is respectful of human dignity. Specifically, it draws on insights from the African ethico‐cultural system by using the Yoruba concept Omo‐olu‐iwabi to develop this new framework. This way, the study shows that only a more respectful approach for applying coercion in psychiatric care can lead to the careful balancing of the competing interests of individual's rights, individual's well‐being and public safety.     

Justice and equal opportunities in health care

The principle that each individual is entitled to an equal opportunity to benefit from any public health care system, and that this entitlement is proportionate neither to the size of their chance of benefitting, nor to the quality of the benefit, nor to the length of lifetime remaining in which that benefit may be enjoyed, runs counter to most current thinking about the allocation of resources for health care. It is my contention that any system of prioritisation of the resources available for healthcare or of rationing such resources must be governed by this principle.
This can have apparently paradoxical conclusions in that it can seem wasteful to give someone with a very slim chance of a lifesaving treatment the same priority as someone with a much better chance. In an important and thoughtful recent paper, Julian Savulescu has concentrated on this apparent weakness and has argued for a particular conception of the good or benefit to be achieved by a healthcare system which purports to demonstrate the inadequacies of an equal opportunities approach to prioritisation and to replace it with an altogether better account. This paper will show that a rational 'reasons based consequentialism' is more in line with the equal opportunities approach, which I defended some time ago in these pages, than with that of Savulescu. I shall then examine more closely the conception of equal opportunities in health care and show that if we give weight to an individual's reasons, and what is expected to be good for them, we will opt for exactly the equality based account of distributive justice that I have recommended.