One For All,All For One? Collective Representation in Healthcare Policy

Healthcare collectives, such as patient organizations, advocacy groups, disability organizations, professional associations, industry advocates, social movements, and health consumer organizations have been increasingly involved in healthcare policymaking. Such collectives are based on the idea that individual interests can be aggregated into collective interests by participation, deliberation, and representation. The topic of collectivity in healthcare, more specifically collective representation, has only rarely been addressed in (Western) bioethics. This symposium, entitled: “Collective Representation in Healthcare Policy” of the Journal of Bioethical Inquiry draws attention to this understudied topic from a variety of disciplines, within a variety of socio-cultural contexts. We draw attention to important ethical, cultural, and social questions, and into the practices, justifications for, and implications of collective representation of patients in healthcare policy.     

Freedom of Conscience in Health Care: Distinctions and Limits

The widespread emergence of innumerable technologies within health care has complicated the choices facing caregivers and their patients. The escalation of knowledge and technical innovation has been accompanied by an erosion of moral and ethical consensus among health providers that is reflected in the abandonment of the Hippocratic Oath as the immutable bedrock of medical ethics. Ethical conflicts arise when the values of health professionals collide with the expressed wishes of patients or the dictates of regulatory bodies and administrators. Increasing attempts by groups outside of the medical profession to limit freedom of conscience for health providers has raised concern and consternation among some health professionals. The personal and professional impact of health professionals surrendering freedom of conscience and participating in actions they deem malevolent or unethical has not been adequately studied and may not be inconsequential when considering the recognized impact of other circumstances of coerced complicity. We argue that the distinction between the two ways that freedom of conscience is exercised (avoiding a perceived evil and seeking a perceived good) provides a rational basis for a principled limitation of this fundamental freedom.     

In the patient's best interest--a call to action,a call to balance

Nurses, physicians, and other healthcare professionals often complain that a loss of freedom or other obstacles hinder their ability to act in the best interest of the patient. These barriers cause professional burnout and moral outrage, and may contribute to a migration away from medicine or, more broadly, healthcare. Understanding the historical underpinnings of the phrase "in the patient's best interest," and realizing that healthcare, which is fundamentally a moral enterprise must be built on sound business principles can help healthcare professionals reframe the issue, and reclaim their original commitment to a difficult path.     

Enquiry analysis and user opinion of the Drugs in Breastmilk Helpline: a prospective study

Background

Since breastfeeding is universally recognised as the ideal way to feed infants, it is understandable, and at times inevitable, that breastfeeding mothers will want, or be required, to take medication. To meet the information demands of breastfeeding mothers and healthcare professionals, a UK charity, The Breastfeeding Network, established a free telephone helpline to answer queries on medicines in breastmilk. This study reports on the enquiries received by the Drugs in Breastmilk Helpline and user opinion of the service.

Methods

All enquirers to the Helpline between December 2010 and January 2011 were asked if they could be contacted in 2 to 4 weeks to provide more information on their experience of using the service. A combination of telephone semi-structured interviews and email surveys were used depending on whether the enquiry originated via telephone or email.

Results

Information was gained from 101 participants; 77 women and 24 healthcare professionals. Women reported high levels of service satisfaction (94%, n = 72/77) and healthcare professionals found the information provided useful (92%, n = 22/24). Women used the service for reassurance or because they had received conflicting information or distrusted healthcare professional advice. Healthcare professionals often could not answer questions or took a cautious approach to recommendation (i.e. advised avoidance of medicines whilst breastfeeding); this was often at odds to advice given by staff from the Helpline. Healthcare professionals did not routinely access resources to answer questions, but when they did, showed a lack of confidence in data interpretation.

Conclusions

The Breastfeeding Networks’ Drugs in Breastmilk Helpline provides an important service to breastfeeding women and healthcare staff to make informed decisions on medicine taking whilst breastfeeding. Healthcare professional uncertainty and incorrect advice given to breastfeeding women suggests that healthcare professional education needs improving and that greater use of specialist services should be encouraged.

     

The ‘Obligation’ to Screen and its Effect on Autonomy

In the United States, disease screening is offered to the public as a consumer service. It has been proposed that the act of “consumption” is a manifestation of agency and that the decision to consume is an exercise of autonomy. The enthusiasm of the American public for disease screening and the expansion in the demand for all sorts of disease screening in recent years can be viewed as an expression of such autonomy. Here, we argue that the enthusiasm for disease screening witnessed in the American public today may be more a reflection of the constraint on autonomy than its facilitation. It is our opinion that the articulation of socio-historical processes has contributed to a moral imperative which is reflected in the decision making of individuals around disease screening. We suggest medical and health professionals have a responsibility to facilitate the exercise of individual autonomy in health care decision making as an integral component of professional obligation. These professionals need to problematise healthcare activities that constrain individual autonomy.     

Are healthcare workers in England and Wales at increased risk of tuberculosis?

OBJECTIVE: To determine whether healthcare workers in England and Wales are at increased risk of tuberculosis and to examine the frequency of drug resistance in this population. DESIGN: Comparison of notification rates by occupation obtained from national tuberculosis notification surveys in 1988 and 1993, with denominators from the 1991 census. SUBJECTS: People with notified tuberculosis in professional and associate professional occupations from the two surveys. MAIN OUTCOME MEASURES: Rates of notified tuberculosis in health professionals (mainly doctors) and health associate professionals (mainly nurses) compared with rates in other professional and associate professional occupations, adjusted for ethnic group, sex, and age. RESULTS: 119 cases of tuberculosis were identified in healthcare workers, including 61 nurses and 42 doctors. The crude notification rate in healthcare workers was 11.8 per 100,000 per year (95% confidence interval 9.8 to 14.1) compared with 3.3 per 100,000 per year (2.9 to 3.6) in other professional and associate professional occupations; rate ratios were higher (range 1.7 to 3.2) in all ethnic groups. The relative risk adjusted for ethnic group, sex, and age was 2.4 (95% confidence interval 2.0 to 3.0), slightly higher for health professionals (2.7 (1.9 to 3.8)) than for associate professionals (2.0 (1.5 to 2.6)). No multiple drug resistant strains of tuberculosis were identified in healthcare workers. CONCLUSIONS: Better detection and notification of cases of tuberculosis in healthcare workers may account for some of the apparent increased risk, but these findings imply that tuberculosis remains a hazard for healthcare workers and highlight the importance of ensuring that occupational health monitoring and protection workers are not neglected.     

Public health ethics: asylum seekers and the case for political action

This paper is a case study in public health ethics. It considers whether there is a basis in ethics for political action by health professionals and their associations in response to inhumane treatment. The issue arises from Australia's treatment of asylum seekers and the charge that this treatment has been both immoral and inhumane. This judgement raises several questions of broader significance in bioethics and of significance to the emerging field of public health ethics. These questions relate to the role of health professionals in response to inhumane treatment of people in their charge; to the discipline of public health in light of a growing recognition of its ethical basis; and the role of public health and bioethical associations in response to ethical issues arising in a political context. It is argued that, in serious cases of humanitarian and human rights abuses affecting health and well-being, there is a case for political action by health professionals, academic and professional institutions, and associations of public health and ethics.     

Health Professionals “Make Their Choice”: Pharmaceutical Industry Leaders’ Understandings of Conflict of Interest

Conflicts of interest, stemming from relationships between health professionals and the pharmaceutical industry, remain a highly divisive and inflammatory issue in healthcare. Given that most jurisdictions rely on industry to self-regulate with respect to its interactions with health professionals, it is surprising that little research has explored industry leaders’ understandings of conflicts of interest. Drawing from in-depth interviews with ten pharmaceutical industry leaders based in Australia, we explore the normalized and structural management of conflicts of interest within pharmaceutical companies. We contrast this with participants’ unanimous belief that the antidote to conflicts of interest with health professionals were “informed consumers.” It is, thus, unlikely that a self-regulatory approach will be successful in ensuring ethical interactions with health professionals. However, the pharmaceutical industry’s routine and accepted practices for disclosing and managing employees’ conflicts of interest could, paradoxically, serve as an excellent model for healthcare.     

Medical Students’ Opinions About the Commercialization of Healthcare: A Cross-Sectional Survey

There are serious concerns about the commercialization of healthcare and adoption of the business approach in medicine. As market dynamics endanger established professional values, healthcare workers face more complicated ethical dilemmas in their daily practice. The aim of this study was to investigate the willingness of medical students to accept the assertions of commercialized healthcare and the factors affecting their level of agreement, factors which could influence their moral stance when market demands conflict with professional values. A cross-sectional study was conducted in three medical schools in Turkey. The study population consisted of first-, third-, and sixth-year students, and 1,781 students participated in total. Students were asked to state if they agreed with the assertions of commercialized healthcare. Of all students, 87.2 per cent agreed with at least one of the assertions, and one-fifth (20.8 per cent) of them agreed with more than half of the assertions. First-year students significantly agreed more with some assertions than third- and sixth-year students. Being female, having mid-level family income, choosing medicine due to idealistic reasons, and being in the third or sixth years of medical study increased the probability of disagreement. Also, studying in a medical school that included integrated lectures on health policies, rights related to health, and health inequities, along with early field visits, increased the probability of disagreement. This study suggests that agreement with the assertions of commercialized healthcare might be prevalent among students at a considerable level. We argue that this level of agreement is not compatible with best practice in professional ethics and indicates the need for an educational intervention in order to have physicians who give priority to patients’ best interests in the face of market demands.     

Ethics and Rationing Access to Dialysis in Resource‐Limited Settings: The Consequences of Refusing a Renal Transplant in the South African State Sector

Resource constraints in developing countries compel policy makers to ration the provision of healthcare services. This article examines one such set of Guidelines: A patient dialysing in the state sector in South Africa may not refuse renal transplantation when a kidney becomes available. Refusal of transplantation can lead to exclusion from the state‐funded dialysis programme. This Guideline is legally acceptable as related to Constitutional stipulations which allow for rationing healthcare resources in South Africa. Evaluating the ethical merit of the Guideline, and exploring the ethical dilemma it poses, proves a more complex task. We examine the actions of healthcare professionals as constrained by the Guideline. From a best interests framework, we argue that in these circumstances directing patient decision making (pressurising a patient to undergo renal transplantation) is not necessarily unethical or unacceptably paternalistic. We then scrutinise the guideline itself through several different ethical ‘lenses’. Here, we argue that bioethics does not provide a definitive answer as to the moral merit of rationing dialysis under these circumstances, however it can be considered just in this context. We conclude by examining a potential pitfall of the Guideline: Unwilling transplant recipients may not comply with immunosuppressive medication, which raises questions for policies based on resource management and rationing.     

Medical Humanitarianism Under Atmospheric Violence: Health Professionals in the 2013 Gezi Protests in Turkey

During the 2013 Gezi protests in Turkey, volunteering health professionals provided on-site medical assistance to protesters faced with police violence characterized by the extensive use of riot control agents. This led to a government crackdown on the medical community and the criminalization of “unauthorized” first aid amidst international criticisms over violations of medical neutrality. Drawing from ethnographic observations, in-depth interviews with health care professionals, and archival research, this article ethnographically analyzes the polarized encounter between the Turkish government and medical professionals aligned with social protest. I demonstrate how the context of “atmospheric violence”—the extensive use of riot control agents like tear gas—brings about new politico-ethical spaces and dilemmas for healthcare professionals. I then analyze how Turkish health professionals framed their provision of health services to protestors in the language of medical humanitarianism, and how the state dismissed their claims to humanitarian neutrality by criminalizing emergency care. Exploring the vexed role that health workers and medical organizations played in the Gezi protests and the consequent political contestations over doctors’ ethical, professional, and political responsibilities, this article examines challenges to medical humanitarianism and neutrality at times of social protest in and beyond the Middle East.     

Ethical dilemmas in early detection of dementia. An inventory of moral intuitions in practice

In this article we present an inventory of the moral intuitions of the health care workers who work in the field of early detection of dementia. The effects of pharmacological treatment and professional care and support may improve when dementia is detected in an early stage. Furthermore, the patient (and his family) can prepare themselves for the period to come. Health care workers recognize moral problems and tensions concerning early detection that are related to the question whether persons will benefit from knowledge in an earlier stage of dementia, because this knowledge can be a heavy burden. We asked general practitioners, home care workers, employees of the so-called 'Memory clinic' and specialists, what ethical intuitions they recognize in practice. They mentioned the following questions: when are health care professionals allowed to take initiative, is causing worries and concerns problematic, and should a diagnosis always to be told? We conclude after a first analysis that many moral questions derive from the fact that many health care professionals lack knowledge of the wishes and interests of the elderly. At the same time they try to justify their actions on the (presupposed) consent of the elderly person. We suggest that the general norm 'only act when the patient wants to be helped' in health care should also apply to detection of dementia, although it should not be taken too strictly. Another justification for early detection can be found in the benefits for the elderly people, when their wishes are no longer expressed.     

Ethical beliefs and practices of AAPB members

Ethical codes and principles and laws govern the behavior of health-care professionals. Yet, the impact that ethical codes and laws have on the actual moral behaviors of health-care professionals is relatively unknown. A survey on the ethical beliefs and practices of health-care professionals was sent to the United States membership of the Association for Applied Psychophysiology and Biofeedback. AAPB's heterogeneous membership offers a unique opportunity to compare the ethical beliefs and behaviors of professionals across various health-care professions, educational levels, licensure and certification statuses, age, years in practice, and gender. The survey examined the respondents' ethical beliefs and practices in the domains of confidentiality, dual relationships, and professional practice. Five hundred thirty-six surveys were returned completed. The results of the survey indicate that all respondents have substantially the same reported ethical beliefs and practices across the three domains. There were no statistically significant differences between the reported ethical beliefs or practices when compared across disciplines, educational levels, licensure or certification statuses, age, or years in practice. Statistically significant gender differences were found.     

Mapping out structural features in clinical care calling for ethical sensitivity: a theoretical approach to promote ethical competence in healthcare personnel and clinical ethical support services (CESS)

Clinical ethical support services (CESS) represent a multifaceted field of aims, consultancy models, and methodologies. Nevertheless, the overall aim of CESS can be summed up as contributing to healthcare of high ethical standards by improving ethically competent decision-making in clinical healthcare. In order to support clinical care adequately, CESS must pay systematic attention to all real-life ethical issues, including those which do not fall within the 'favourite' ethical issues of the day. In this paper we attempt to capture a comprehensive overview of categories of ethical tensions in clinical care. We present an analytical exposition of ethical structural features in judgement-based clinical care predicated on the assumption of the moral equality of human beings and the assessment of where healthcare contexts pose a challenge to achieving moral equality. The account and the emerging overview is worked out so that it can be easily contextualized with regards to national healthcare systems and specific branches of healthcare, as well as local healthcare institutions. By considering how the account and the overview can be applied to i) improve the ethical competence of healthcare personnel and consultants by broadening their sensitivity to ethical tensions, ii) identify neglected areas for ethical research, and iii) clarify the ethical responsibility of healthcare institutions' leadership, as well as specifying required institutionalized administration, we conclude that the proposed account should be considered useful for CESS.     

Should ‘Omics’ education be a part of allied health profession curricula?

Sequencing of human genome followed by monumental progress in omics sciences within last two decades has made personalized nutrition for better health is a reality for near future. The complexity of underlying science in making personalized nutrition recommendation has led to the need for training of health care providers. The International Society of Nutrigenetics/Nutrigenomics (ISNN) has mission to increase the understanding among both professionals and the general public of the role of genetic variation and nutrients in gene expression. To bring this mission to fruition, we need trained healthcare professionals ready to educate public. With this in mind, we have surveyed allied health students for their omics knowledge, desire to learn more and their perception of the need of omics education. The results show a need for training in omics in all allied health disciplines and desire of the students to learn more.     

Opening the Gift: Social Inclusion, Professional Codes and Gift-Giving in Long-Term Mental Healthcare

Deinstitutionalisation has not only made the social inclusion of clients a key objective in long-term mental healthcare, it may also affect the role of the care professional. This article investigates whether the social inclusion objective clashes with other long-standing professional values, specifically when clients give gifts to care professionals. In making a typology of gifts, we compare the literature on gift-giving with professional codes for gifts and relate both to the objective of social inclusion of clients. Our typology draws on an analysis of ethnographic fieldwork carried out in 2007/2008 at a Dutch mental healthcare centre. We identify four types of gifts for professionals in long-term mental healthcare, each relating individually to professional codes and the objective of social inclusion of clients. Only the ‘personal gift’ directly supports social inclusion, by fostering personal relationships between professionals and clients. Acceptance of this type of gift is advocated only for long-term care professionals. We suggest that professional codes need to consider this typology of gifts, and we advocate promoting reflexivity as a means of accounting for professional behaviour in deinstitutionalised care settings.     

Healthcare and the hospital chaplain

Many chaplains and most chaplaincy programs in the United States--with encouragement from their accrediting organization, the Association for Clinical Pastoral Education (ACPE)--have begun to assume a more proactive stance toward patients, healthcare professionals, and healthcare facilities. Some chaplains and chaplaincy programs have begun to engage in activities that have ranged from initiating conversations with and perusing the medical records of patients who have not requested their services to proposing that they be permitted to do "spiritual assessments" on patients--in some instances whether these patients have been explicitly informed and have agreed to this beforehand. Moreover, many chaplains and chaplaincy programs have begun to assume that chaplains are full-fledged members of the healthcare team, complete with access to patients' medical records both to gather information and to make notations of their own. It would appear that such novel activities are being justified by a questionable set of claims and assumptions that includes: (1) the claim that chaplains have a spiritual--as opposed to purely religious--expertise that entitles them to interact with patients and/or significant others (even those who have not requested a chaplain)--presumably without in the least compromising patient autonomy or the confidentiality of the patient/healthcare professional relationship; (2) the assumption that the terms "spirituality" and "religiosity" mutually entail one another; (3) the claim that the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) mandates "spiritual assessments" (which it does not); (4) the assumption that chaplains are full-fledged members of the healthcare team; and (5) the claim that chaplains must, therefore, be permitted access to patients and patients' medical records both to gather information and to make notations of their own. We consider such claims and assumptions disquieting, and suggest that it is high time we revisit the terms "chaplaincy," "healthcare professional," and "member of the healthcare team" in reassessing what our professional commitments to respect and protect the bio-psycho-social integrity of patients require.     

Human Rights,Dual Loyalties,and Clinical Independence

Although Australia has comparatively few individuals seeking asylum, it has had a mandatory detention policy in place since 1992. This policy has been maintained by successive governments despite the overwhelmingly negative impact mandatory detention has on mental health. For mental health professionals working in this environment, a number of moral, ethical, and human rights issues are raised. These issues are discussed here, with a focus on dual loyalty conflicts and drawing on personal experience, the bioethics and human rights literature, and recent parliamentary inquiries. For those who continue to work in this environment, future directions are also discussed.     

A comprehensive SWOT audit of the role of the biomedical physicist in the education of healthcare professionals in Europe

Although biomedical physicists provide educational services to the healthcare professions in the majority of universities in Europe, their precise role with respect to the education of the healthcare professions has not been studied systematically. To address this issue we are conducting a research project to produce a strategic development model for the role using the well-established SWOT (Strengths, Weaknesses, Opportunities, Threats) methodology. SWOT based strategic planning is a two-step process: one first carries out a SWOT position audit and then uses the identified SWOT themes to construct the strategic development model. This paper reports the results of a SWOT audit for the role of the biomedical physicist in the education of the healthcare professions in Europe. Internal Strengths and Weaknesses of the role were identified through a qualitative survey of biomedical physics departments and biomedical physics curricula delivered to healthcare professionals across Europe. External environmental Opportunities and Threats were identified through a systematic survey of the healthcare, healthcare professional education and higher education literature and categorized under standard PEST (Political, Economic, Social-Psychological, Technological-Scientific) categories. The paper includes an appendix of terminology. Defined terms are marked with an asterisk in the text.     

Anorexia Nervosa: The Diagnosis

This paper argues that there is a relationship between understandings of anorexia nervosa (AN) and how the ethical issues associated with involuntary treatment for AN are identified, framed, and addressed. By positioning AN as a construct/discourse (hereinafter “AN: the diagnosis”) several ethical issues are revealed. Firstly, “AN: the diagnosis” influences how the autonomy and competence of persons diagnosed with AN are understood by decision-makers in the treatment environment. Secondly, “AN: the diagnosis” impacts on how treatment and treatment efficacy are defined and the ethical justifiability of paternalism. Thirdly, “AN: the diagnosis” can limit the opportunity for persons with AN to construct an identity that casts them as a competent person. “AN: the diagnosis” can thus inherently affirm professional knowledge and values. Postmodern professional ethics can support professionals in managing these issues by highlighting the importance of taking responsibility for professional knowledge, values, and power and embracing moral uncertainty.