Patient counseling is a cornerstone of ethical pharmacy practice and high quality pharmaceutical care. Counseling promotes patient compliance with prescription regimens and prevents dangerous drug interactions and medication errors. Counseling also promotes informed consent and protects pharmacists against legal risks. However, economic, social, and technological changes in pharmacy practice often force community pharmacists to choose between their professional obligations to counsel patients and business objectives. State and federal legislatures have enacted laws that require pharmacists to (...) counsel patients, but these laws have had mixed results. This essay argues that community pharmacy's patient counseling conundrum can be solved through additional moral education and moral persuasion, not through additional legal mandates. (shrink)

The majority of women who freeze their eggs for non-medical or social reasons, commonly referred to as elective egg freezing (EEF), do not eventually utilize their frozen eggs. This would result in an accumulated surplus of unused frozen eggs in fertility clinics worldwide, which represents a promising source of donation to infertile women undergoing IVF treatment. Rigorous and comprehensive counseling is needed, because the process of donating one’s unused surplus frozen eggs involves complex decision-making. Prospective EEF donors can be (...) broadly categorized into those who have achieved motherhood and those who remained childless and have given up on motherhood aspirations. A two-step systematic counseling protocol is proposed. Firstly, it is imperative to verify and ensure that these women do not want to conceive any children with their surplus frozen eggs before proceeding with further counseling and signing of consent forms. Secondly, various motivating and dissuading factors in the donation of unused surplus frozen eggs should then be comprehensively discussed with egg freezers to facilitate informed decision-making. Key motivating factors for donation include reciprocity in wanting to share the joys of motherhood among egg freezers who already have children, goodwill to help others in need, and avoiding the wastage of surplus frozen eggs after expending so much money, time, and effort. Key dissuading factors include fear of accidental incest between natural and unknown donor-conceived offspring, as well as apprehension of unexpected future contact with unknown donor-conceived offspring due to either donor anonymity being abolished in their jurisdiction or widespread consumer DNA testing. (shrink)

BackgroundDiagnosis and treatment of differentiated thyroid carcinomas cause anxiety and depression. Additionally, these patients suffer hormonal alterations that are associated with psychological symptoms. This study aims to evaluate the effectiveness of a psycho-oncological intervention based on counseling to reduce anxiety and depression related to the treatment in patients with DTC.MethodsA non-randomized controlled study, with two groups [experimental group, n = 37, and control group, n = 38] and baseline and posttreatment measures, was designed. Patients in the EG received a (...) psycho-oncological intervention based on counseling in addition to the standard treatment. The independent variable was the assigned group and the dependent one was the evolution of anxiety and depression, which were analyzed separately, and both were evaluated using the Hospital Anxiety and Depression Scale. Other relevant covariables related to the quality of life were also analyzed using Short Form-36 Health Survey and Psychological General Wellbeing Index scales.ResultsThe difference of the posttreatment-baseline variation showed a statistically significant reduction in anxiety and depression in the EG in relation to the CG. The mean of the Psychological General Wellbeing Index scales score increased significantly in the EG and decreased significantly in the CG. All the baseline and the posttreatment scores of the variables evaluated showed a statistically significant improvement in the EG vs. the CG.ConclusionThis study demonstrates significant benefits of psycho-oncological intervention based on counseling in anxiety, depression, QoL, and wellbeing of the patient with differentiated thyroid carcinomas. (shrink)

Survival after solid-organ transplantation has improved significantly, and many contemporary transplant recipients are of childbearing potential. There are limited data to guide decision-making surrounding pregnancy after transplantation, variations in clinical practice, and significant knowledge gaps, all of which raise significant ethical issues. Post-transplant pregnancy is associated with an increased risk of maternal and fetal complications. Shared decision-making is a central aspect of patient counselling but is complicated by significant knowledge gaps. Stakeholder interests can be in conflict; exploring these tensions (...) can help patients to evaluate their options and inform their deliberations. We argue that uniform, evidence-based recommendations for pregnancy after solid organ transplantation are needed. Conducting research, including patient-engaged studies, in this area should be priority for the transplant community. (shrink)

Informed consent is a key condition for prenatal screening programmes to reach their aim of promoting reproductive autonomy. Reaching this aim is currently being challenged with the introduction of non-invasive prenatal testing (NIPT) in first-trimester prenatal screening programmes: amongst others its procedural ease—it only requires a blood draw and reaches high levels of reliability—might hinder women’s understanding that they should make a personal, informed decision about screening. We offer arguments for a renewed recognition and use of informed consent compared to (...) informed choice, and for a focus on value-consistent choices and personalized informational preferences. We argue for a three-step counselling model in which three decision moments are distinguished and differently addressed: (1) professionals explore women’s values concerning whether and why they wish to know whether their baby has a genetic disorder; (2) women receive layered medical-technical information and are asked to make a decision about screening; (3) during post-test counselling, women are supported in decision-making about the continuation or termination of their pregnancy. This model might also be applicable in other fields of genetic (pre-test) counselling, where techniques for expanding genome analysis and burdensome test-outcomes challenge counselling of patients. (shrink)

In the current era patient autonomy is enormously important. However, recently there has also been some movement back to ensure that trust in the doctor's skill, knowledge and virtue is not excluded in the process. These new nuances of informed consent have been referred to by terms such as beneficent paternalism, experience-based paternalism and we would add virtuous paternalism. The purpose of this paper is to consider the history and current problematic nature of counselling and consent. Starting with the (...) tradition founded by Hippocrates we trace and seek to understand how relevant aspects of the patient-doctor relationship have evolved under the influences of subsequent moral theories. Finally we tentatively endorse certain modes of counselling in the current era in order to promote morally sound, good clinical practice. (shrink)

Our country has celebrated democracy for more than a decade now, the democracy in which everyone enjoys all the basic human rights, including the right to an abortion. Public and private hospitals and some traditional healers are engaged in this act where some give preabortion and post-abortion counselling to their patients whilst others do not. It becomes a serious question of course to ask whether those patients who did not receive counselling, cope with life after the experienced trauma. By the (...) looks of things it seems very clear that the people who commit abortion have a special need for help in order to cope with life thereafter. Another question now is whether the little counselling that they receive in the hospital before and after an abortion is satisfactory to their individual needs. That is why the author’s focus is on the method or approach which the author thinks will better help the patients who find themselves in such a traumatic situation. The concentration is on the narrative-hermeneutical approach as one of the applicable approaches from the author’s point of view. (shrink)

Informed consent is a key condition for prenatal screening programmes to reach their aim of promoting reproductive autonomy. Reaching this aim is currently being challenged with the introduction of non‐invasive prenatal testing (NIPT) in first‐trimester prenatal screening programmes: amongst others its procedural ease—it only requires a blood draw and reaches high levels of reliability—might hinder women’s understanding that they should make a personal, informed decision about screening. We offer arguments for a renewed recognition and use of informed consent compared to (...) informed choice, and for a focus on value‐consistent choices and personalized informational preferences. We argue for a three‐step counselling model in which three decision moments are distinguished and differently addressed: (1) professionals explore women’s values concerning whether and why they wish to know whether their baby has a genetic disorder; (2) women receive layered medical‐technical information and are asked to make a decision about screening; (3) during post‐test counselling, women are supported in decision‐making about the continuation or termination of their pregnancy. This model might also be applicable in other fields of genetic (pre‐test) counselling, where techniques for expanding genome analysis and burdensome test‐outcomes challenge counselling of patients. (shrink)

This article is based on a qualitative empirical project about a distinct kinship group who were among the first identified internationally as having a genetic susceptibility to cancer. 50 were invited to participate. 15, who had all accepted testing, were interviewed. They form a unique case study. This study aimed to explore interviewees’ experiences of genetic testing and how these influenced their family relationships. A key finding was that participants framed the decision to be tested as ‘common sense’; the idea (...) of choice around the decision was negated and replaced by a moral imperative to be tested. Those who did not follow ‘common sense’ were judged to be imprudent. Family members who declined testing were discussed negatively by participants. The article addresses what is ethically problematic about how test decliners were discussed and whether these ethical concerns extend to others who are offered genetic testing. Discussions showed that genetic testing was viewed as both an autonomous choice and a responsibility. Yet the apparent conflict between the right to autonomy and the moral imperative of responsibility allowed participants to defend test decliners’ decisions by expressing a preference for or defending choice over responsibility. The ‘right not to know’ seemed an important moral construct to help ethically manage unpopular decisions made by close family who declined testing. In light of this research, the erosion of the ‘right not to know’ in the genomic age could have subtle yet profound consequences for family relationships. (shrink)

This article argues that standard models of person-centred care (PCC) and shared decision making (SDM) rely on simplistic, often unrealistic assumptions of patient capacities that entail that PCC/SDM might have detrimental effects in many applications. We suggest a complementary PCC/SDM approach to ensure that patients are able to execute rational decisions taken jointly with care professionals when performing self-care. Illustrated by concrete examples from a study of adolescent diabetes care, we suggest a combination of moral and psychological considerations to (...) support the claim that standard PCC/SDM threatens to systematically undermine its own goals. This threat is due to a tension between the ethical requirements of SDM in ideal circumstances and more long-term needs actualized by the context of self-care handled by patients with limited capacities for taking responsibility and adhere to their own rational decisions. To improve this situation, we suggest a counseling, self-care, adherence approach to PCC/SDM, where more attention is given to how treatment goals are internalized by patients, how patients perceive choice situations, and what emotional feedback patients are given. This focus may involve less of a concentration on autonomous and rational clinical decision making otherwise stressed in standard PCC/SDM advocacy. (shrink)

ZusammenfassungDas Paradigma einer „personalisierten Medizin“ in der klinischen Forschung und Praxis wirft verschiedene Fragen nach Notwendigkeit, Erwartung, Chancen und Risiken auf. In einer laufenden empirisch-ethischen Studie untersuchen wir klinische Forscher- und Patientenperspektiven hinsichtlich des zukünftigen Einsatzes „personalisierter Medizin“ beim Rektumkarzinom. Ziel der Studie ist es, mittels Interviews mit Ärzten/forschern und Patienten und teilnehmender Beobachtung bei Arzt-Patient-Gesprächen ethisch relevante Aspekte der Erforschung und Behandlung im Kontext „personalisierter Medizin“ zu explorieren. Die Analyse von Unterschieden und Gemeinsamkeiten zwischen den Gruppierungen dient der (...) Detektion von Konfliktfeldern in der klinischen Praxis. Es zeigt sich, dass Patienten und Ärzte unterschiedliche Annahmen von „personalisierter Medizin“ haben. Dies könnte zu Konflikten in der klinischen Praxis führen, die so früh wie möglich geklärt werden sollten. (shrink)

An obstacle to abortion exists in the form of abortion ‘counselling’ that discourages women from terminating their pregnancies. This counselling involves providing information about the procedure that tends to create feelings of guilt, anxiety and strong emotional reactions to the recognizable form of a human fetus. Instances of such counselling that involve false or misleading information are clearly unethical and do not prompt much philosophical reflection, but the prospect of truthful abortion counselling draws attention to a delicate issue for healthcare (...) professionals seeking to respect patient autonomy. This is the fact that even accurate information about abortion procedures can have intimidating effects on women seeking to terminate a pregnancy. Consequently, a dilemma arises regarding the information that one ought to provide to patients considering an abortion: on the one hand, the mere offering of certain types of information can lead to intimidation; on the other hand, withholding information that some patients would consider relevant to their decision-making is objectionably paternalistic on any standard account of the physician-patient relationship. This is an unsettling conclusion for the possibility of setting fixed professional guidelines regarding the counselling offered to women who are considering abortion. Thus, abortion ought to be viewed as an illuminating example of a procedure for which the process of securing informed consent ought to be highly context-sensitive and responsive to the needs of each individual patient. This result underscores the need for health care professionals to cultivate trusting relationships with patients and to develop finely tuned powers of practical judgment. (shrink)

Background In the early 2010s, a phenomenon known as do-it-yourself (DIY) fecal microbiota transplant (FMT) emerged as lay individuals began self-administering FMTs at home. Although prior research indicates that many individuals who perform DIY FMT have sought advice from healthcare providers, to date there has been no investigation of physicians’ experiences with DIY FMT. The objective of this qualitative study was to examine the attitudes of physicians who offer FMT regarding the practice of DIY FMT and to assess how they (...) navigated the ethical challenges of patient requests for DIY FMT.Methods We recruited physicians listed on two patient-created online databases of FMT providers. All physicians who indicated having been approached for advice about DIY FMT were included in the study. Semi-structured interviews with physicians explored their attitudes toward and experiences with DIY FMT.Results Of 18 physicians interviewed, one reported having provided counsel in response to an initial patient inquiry about DIY FMT, 2 indicated they explicitly advised against DIY FMT and refused to provide advice, and 15 fell in a middle category of discouraging DIY FMT and discussing reasons why. Among the physicians in this third category, four reported that they had changed their approach to providing counsel in response to a patient telling them they were going to perform DIY FMT anyway.Conclusions Physicians in our study employed a wide range of strategies for promoting safety in the DIY FMT context, from explicitly advising against the procedure to the provision of guidance aimed at mitigating potential harms. While there has been increasing attention to the practices of DIY medicine, this study underscores the need for greater attention to the ethically complex situations that physicians face when patients request guidance for unapproved at-home treatments. (shrink)

This article analyzes narrative illustrations in genetic counseling textbooks as a way of understanding professional habitus--the dispositions that motivate professional behavior. In particular, this analysis shows that there are significant differences in how the textbooks' expository and narrative portions represent Down syndrome, genetic counseling practice, and patient behaviors. While the narrative portions of the text position the genetic counseling profession as working in service to the values of genetic medicine, the expository portions represent genetic counselors as (...) neutral parties. Ultimately, this article argues that this ambiguity is harmful to the production of a professional habitus that is consistent with espoused professional values concerning respect for persons with disabilities and the promotion of psychosocial counseling. (shrink)

This article discusses the rights of patients who are attending hospital for the most common laboratory examinations and who may also be taking part in research studies. A distinction is made between five kinds of rights to: protection of privacy, physical integrity, mental integrity, information and self-determination. The data were collected ( n = 204) by means of a structured questionnaire specifically developed for this study in the clinical chemistry, haematological, physiological and neurophysiological laboratories of one randomly selected university hospital (...) in Finland. The analysis of the data was statistical. On the whole, patients’ rights were realized reasonably well. This was most particularly the case with protection of privacy, as well as with the rights of physical and mental integrity. The rights to information and self-determination were less well realized. There are various steps that health care professionals and organizations can take to make sure that patients can enjoy their full rights, by counselling the patient, by giving opportunities to plan the examinations in advance, and by arranging a sufficient number of small examination rooms. (shrink)

Recently, focus groups and qualitative interviews with nurses who provide frontline care for persons living with HIV highlighted the contentiousness surrounding the seemingly innocuous activity of counselling clients about HIV‐status disclosure, hereafter disclosure counselling. These empirical studies highlighted that while some nurses felt they should instruct clients to disclose their HIV‐positive status if HIV transmission were possible, other nurses were equally adamant that such counselling was outside the nursing scope of practice. A review of these opposing perceptions about disclosure counselling, (...) including an examination of the empirical evidence which supports each point, revealed that the dichotomous arguments needed to be nuanced. The empirical evidence about serostatus disclosure neither supported nor refuted either of these assertions; rather, it substantiated parts of each. To create this understanding, both empirical and theoretical works are used. First, the results of empirical studies about serostatus disclosure, or lack thereof and HIV transmission is presented; as part of this, Marks and Crepaz's HIV disclosure and exposure framework is examined. Second, the work of Michel Foucault on disciplinary and pastoral power is drawn from. The outcome is a nuanced understanding about the interrelationships between disclosure counselling and nursing practice and a final interpretation about what this understanding means for public health practice. (shrink)

Heuser, Eller and Byrne provide important descriptive ethics data about how physicians counsel women on the clinical management of pregnancies complicated by severe fetal anomalies. The authors present an account of what such counselling ought to be based on, the ethical concept of the fetus as a patient and the professional responsibility model of obstetric ethics. When there is certainty about the diagnosis and either a very high probability of either death as the outcome of the anomaly or survival (...) with severe and irreversible deficit of cognitive developmental capacity as a result of the anomaly diagnosed, the pregnant woman should be offered the alternatives of aggressive and non-aggressive obstetric management and induced abortion before viability. It is also ethically permissible to offer feticide followed by termination of pregnancy after viability in such cases. This ethically justified approach will reduce the variation in the actual practices of specialists in maternal–fetal medicine described by Heuser, Eller and Byrne. (shrink)

Patient advocacy organizations provide patient- and caregiver-oriented education, advocacy, and support services. PAOs are formally organized nonprofit groups that concern themselves with medical conditions or potential medical conditions and have a mission and take actions that seek to help people affected by those medical conditions or to help their families. Examples of PAOs include the American Cancer Society, the National Alliance on Mental Illness, and the American Heart Association. These organizations advocate for, and provide services to, millions of (...) people with physical and mental conditions — such as cancer, mental illness, diabetes, and cardiovascular disease — via their outreach, meetings, counseling, websites, and published materials. A PAO usually seeks to raise public awareness of a disease’s symptoms, risk factors, and treatment options and promotes research to cure or to prevent that disease. (shrink)

In Philosophical Issues in Counseling and Psychotherapy, James Hansen proposes resolutions to four fundamental philosophical questions about knowing, effectiveness, and truth. Presented within the context of the author's struggle to reconcile these philosophical questions with his understanding of patient care, Hansen gives unity and meaning to diverse and seemingly contradictory counseling models.

BackgroundIn the Netherlands, Foundation De Einder offers counselling to people who wish to be able to self-determine the timing and manner of their end of life.AimThis study explores the experiences with counselling that counselees receive from counsellors facilitated by Foundation De Einder.MethodsOpen coding and inductive analysis of in-depth interviews with 17 counselees.ResultsCounselling ranged from solely receiving information about lethal medication to combining this with psychological counselling about matters of life and death, and the effects for close ones. Counselees appreciated the (...) availability of the counsellor, their careful and open attitude, feeling respected and being reminded about their own responsibility. Some counselees felt dependent on the counsellor, or questioned their competency. Most counselees collected lethal medication. This gave them peace of mind and increased their quality of life, but also led to new concerns. Few were inclined to use their self-collected medication. Counselling contributed to thinking about if, when and how counselees would like to end their life.ConclusionHaving obtained means to end their lives can offer people feelings of reassurance, which can increase their quality of life, but can also give rise to new concerns. Next to providing information on lethal medication, counsellors can play an important role by having an open non-judgemental attitude, providing trustworthy information and being available. These positively valued aspects of counselling are also relevant for physicians taking care of patients who wish to self-determine the timing and manner of their end of life. (shrink)

Infertility specialists may be confronted with the ethical dilemma of whether to disclose misattributed paternity (MP). Physicians should be prepared for instances when an assumed father’s evaluation reveals a condition known for lifelong infertility, for example, congenital bilateral absence of vas deferens (CBAVD). When there is doubt regarding a patient’s comprehension of his diagnosis, physicians must consider whether further disclosure is warranted. This article describes a case of MP with ethics analysis that concludes that limited nondisclosure is most consistent (...) with a physician’s principled duties to inform, to respect patients’ autonomy, and to employ nonmaleficence (including the avoidance of psychosocial harms). (shrink)

As in other areas of medical practice, relatives accompany patients to genetic consultations. However, unlike in other areas, the consultations may be relevant to the relatives’ health because they may be at risk of developing the same genetic condition as the patient. The presence of relatives in genetic consultation may affect the decision‐making process and it raises questions about the perception of patient autonomy and the way it is practiced in genetics. However, these issues have not been examined (...) in previous empirical studies. This article aims to fill this gap by reporting findings from a qualitative study with clinicians working in the area of inherited breast cancer. The findings indicate that family presence has an impact on the patient's decisions to undergo genetic testing and preventative operations when she is diagnosed as a carrier. The findings further indicate that, unlike in other areas of medical practice, blood relatives who are present in consultations are perceived by clinicians as patients or potential patients, and this in turn increases their involvement in discussions in the consultation room. Finally, the findings indicate that in genetics, a relational approach to autonomy is applied. Decisions are made in a social context, where the relatives’ views are heard and taken into account. The findings suggest that the conventional bioethical approach to autonomy, which perceives the decision‐making unit as comprising a clinician and an individual patient, is challenged in genetics. The findings thus suggest that bioethicists, lawyers and policy‐makers should consider whether this individualistic approach is still valid and applicable. (shrink)

The debate and implementation of Clinical Ethics Consultation is still in its beginnings in Europe and the issue of the patient's perspective has been neglected so far, especially at the theoretical and methodological level. At the practical level, recommendations about the involvement of the patient or his/her relatives are missing, reflecting the general lack of quality and practice standards in CEC. Balance of perspectives is a challenge in any interpersonal consultation, which has led to great efforts to develop (...) “technical”approaches, e.g., in psychological counseling or psychotherapeutic treatment. In ethics, unbalance or partiality is a matter of justice and has provoked significant theoretical work, also relevant for practical medical ethics. A lack of balance seems to be particularly serious in those situations, where ethical conflict is triggering a consultation and where the “parties” involved may try to persuade the consultant that their particular opinion is the most convincing; but to our knowledge the connection between patient/relatives involvement and balance has not yet been discussed in the context of CEC. Central questions of access and involvement of the patient and his/her relatives will be analysed and discussed regarding the challenge of balance and the adequate role or attitude of a Clinical Ethics Consultant. It is argued that the Clinical Ethics Consultant should have a methodological awareness regarding the concepts of “neutrality” versus “advocacy” in his/her role and try to achieve a balanced procedure that allows for an optimum of change of perspectives. The argumentation is developed along the narrative of a real case study. Recommendations concerning the involvement of the patient or the relatives are formulated for the practice of CEC. (shrink)

This paper is based on the second Jack Pritchard Memorial Lecture given at the Queen's University of Belfast (1). The author describes his own personal response to having multiple sclerosis (MS), and then examines the psycho-social aspects of the disease in a wider context. The distress caused by the emotional difficulties associated with MS is emphasised, and in particular the strain placed on the doctor-patient relationship at the time of diagnosis. The physician's ability to cope with the needs of (...) MS families is explored, together with the importance of offering counselling. Also discussed is the ethical question of whether or not the patient should be told the complete truth. Patients with MS are seen as having a potential not only for helping each other, but also for being able to share in the management of their own health care. (shrink)

This paper completes an argument that the problem of moral distress offers philosophical counselors an opportunity to do work that is both socially useful and philosophically interesting in its own right. A previous Philosophical Practice article answered the question, What's Philosophical About Moral Distress? by conceptualizing it as a phenomenon that arises within a moral worldview (Matchett 2018). The present paper investigates ways in which a philosophical counseling response to moral distress might differ from the strategies deployed by the (...) nursing profession to date. Though they are often quite subtle, the presence of some differences opens the possibility that philosophical counseling might be more effective than those strategies; in addition to helping individual nurses feel better, this could strengthen the nursing profession's efforts to mitigate nursing shortages and enhance quality of patient care. Though case studies are necessary to support these claims, there are reasons to think they are warranted. (shrink)

As Next Generation Sequencing technologies are increasingly implemented in biomedical research and care, the number of study participants and patients who ask for release of their genomic raw data is set to increase. This raises the question whether research participants and patients have a legal and moral right to receive their genomic raw data and, if so, how this right should be implemented into practice. In a first step we clarify some central concepts such as “raw data”; in a second (...) step we sketch the international legal framework. The third step provides an extensive ethical analysis which comprehends two parts: an evaluation of whether there is a prima facie moral right to receive one’s raw data, and a contextualization and discussion of the right in light of potentially conflicting interests and rights of the data subject herself and third parties; in a last fourth step we emphasize the main practical consequences of the ethical analyses and propose recommendations for the release of raw data. In several legislations like the new European General Data Protection Regulation, patients do in principle have the right to receive their raw data. However, the procedural implementation of this right and whether it involves genetic counselling is at the discretion of the Member States. Even more questions remain with respect to the research context. The ethical analysis suggests that patients and research subjects have a moral right to receive their genomic raw data and addresses aspects which are also of relevance for the legal discussion such as the costs of release of raw data and its impact on academic freedom. Taking into account the specific nature and implications of genomic raw data and the contexts of research and health care, several concerns and potentially conflicting interests of the data subjects themselves and involved researchers, physicians, biomedical institutions and relatives arise. Instead of using them to argue in favor of restrictions of the data subjects’ legal and moral right to genomic raw data, the concerns should be addressed through provision of information and other measures. To this end, we propose relevant recommendations. (shrink)

_Background:_ Breast Cancer susceptibility genes 1 and 2 are implicated in hereditary breast and ovarian cancer and women can test for the presence of these genes prior to developing cancer. The goal of this study is to examine psychological distress, quality of life, and active coping mechanisms in a sample of women during the pre-test stage of the genetic counseling process, considering that pre-test distress can be an indicator of post-test distress. We also wanted to identify if subgroups of (...) women, defined based on their health status, were more vulnerable to developing distress during the genetic counseling process. _Methods:_ This study included 181 female participants who accessed a Cancer Genetic Counseling Clinic. The participants were subdivided into three groups on the basis of the presence of a cancer diagnosis: Affected patients, Ex-patients, and Unaffected participants. Following a self-report questionnaire, a battery of tests was administered to examine psychological symptomatology, quality of life, and coping mechanisms. _Results:_ The results confirm that the genetic counseling procedure is not a source of psychological distress. Certain participants were identified as being more vulnerable than others; in the pre-test phase, they reported on average higher levels of distress and lower quality of life. These participants were predominantly Ex-patients and Affected patients, who may be at risk of distress during the counseling process. _Conclusions:_ These findings highlight that individuals who take part in the genetic counseling process are not all the same regarding pre-test psychological distress. Attention should be paid particularly to Ex-patients and Affected patients by the multidisciplinary treating team. (shrink)

Questions concerning the parent/ patient’s autonomy are seen as one of the most important reasons for requesting Ethics Consultations. Respecting parent/ patient’s autonomy also means respecting the patient’s wishes. But those wishes may be controversial and sometimes even go beyond legal requirements. The objective of this case series of 32 ECs was to illustrate ethically challenging parent / patients’ wishes during the first stages of life and how the principle of patient’s autonomy was handled. The case (...) series has a qualitative retrospective approach. A documentary sheet was designed de novo and information was gained from EC minutes and medical charts. The cases originate from the following specialties: reproductive medicine, obstetrics and neonatology as well as two interdisciplinary cases. Through the structured EC minutes aspects of patient / parents’ wishes could be identified explicitly. Overall the patient / parents’ wishes were not supported in 61% of the cases. Central reasons for rejection of patient / parent wishes were mainly the protection of the best interest of the unborn / new-born child as well as the rejection of clinical approaches that were regarded as being substandard treatment. The study shows that treatment decisions in reproductive medicine, obstetrics and neonatology raise substantial ethical questions leading to the request for ethics consultation. The systematic case series presented here gives insight into the ethical reflection carried out to support the clinicians in their decision-making and counselling. It shows that clinicians, after using ethics consultation, make deliberate decisions that do not “automatically” fulfil the treatment requests of the patients and parents. (shrink)

Background Non-invasive prenatal testing (NIPT), which can screen for aneuploidies such as trisomy 21, is being implemented in several public healthcare systems across Europe. Comprehensive communication and information have been highlighted in the literature as important elements in supporting women’s reproductive decision-making and addressing relevant ethical concerns such as routinisation. Countries such as England and France are adopting broadly similar implementation models, offering NIPT for pregnancies with high aneuploidy probability. However, we do not have a deeper understanding of how professionals’ (...) counselling values and practices may differ between these contexts. Methods In this paper, we explore how professionals in England and France support patient decision-making in the provision of NIPT and critically compare professional practices and values. We draw on data from semi-structured interviews with healthcare professionals. Results Both English and French professionals emphasised values relating to patient choice and consent. However, understandings and application of these values into the practice of NIPT provision differed. English interviewees placed a stronger emphasis on interpreting and describing the process of counselling patients and clinical care through a “principle” lens. Their focus was on non-directiveness, standardisation, and the healthcare professional as “decision-facilitator” for patients. French interviewees described their approach through a “procedural” lens. Their focus was on formal consent, information, and the healthcare professional as “information-giver”. Both English and French professionals indicated that insufficient resources were a key barrier in effectively translating their values into practice. Conclusion Our findings illustrate that supporting patient choice in the provision of NIPT may be held as an important value in common on a surface level, but can be understood and translated into practice in different ways. Our findings can guide further research and beneficially inform practice and policy around NIPT provision. (shrink)

Respect for patient autonomy has served as the dominant ethical principle of genetic counselling, but as we move into a genomic era, it is time to actively re-examine the role that this principle plays in genetic counselling practice. In this paper, we argue that the field of genetic counselling should move away from its emphasis on patient autonomy and toward the incorporation of a more balanced set of principles that allows counsellors to offer clear guidance about how best (...) to obtain or use genetic information. We begin with a brief history of how respect for patient autonomy gained such emphasis in the field and how it has taken on various manifestations over time, including the problematic concept of nondirectiveness. After acknowledging the field's preliminary move away from nondirectiveness, we turn to a series of arguments about why the continued dominance of patient autonomy has become untenable given the arrival of the genomic era. To conclude, we describe how a more complete set of bioethical principles can be adapted and used by genetic counsellors to strengthen their practice without undermining patient autonomy. (shrink)

This volume of papers is the long-awaited result of written contributions made by participants attending the conference entitled The Patient – Examining Realities, 5th Global Conference, held at Mansfield College, Oxford University, England, September, 2016. The conference organised by the multi-disciplinary academic forum Interdisciplinary Net attracted scholars and medical practitioners from across the world and became an intense three- day opportunity for fruitful discussion between professionals representing a number of disciplines: health and medical science, applied science such as occupational (...) therapy, counselling practices, more abstract and spiritual healing practices through symbolic intervention – with, e.g., mandalas opening up an emotional and much needed dialogue between doctor and patient and encouraging patients also to engage in their own healing process – film and media studies, literature, etc. This book sheds light on research conducted by some of these conference participants – most of them medical professionals and healthcare providers employed by reputable academic institutions and who take a both scientific and practical interest in the healthcare industry and its practices. The book also includes discourses by academics with a more theoretical interest in health and spirituality and the often complex, even problematic, doctor-patient relationship. Research presented in this volume of conference papers is both steeped in cultural traditions and reflective of new trends in certain countries across the globe. Theories, practices and trends highlighted in the book are ultimately universal in that they concern all of us on a global level. We will all at some stage become patients and are already patients, to a greater or lesser extent, throughout our lives. Given this, it feels vital to engage the reader in a discourse which highlights aspects of medical care that need to be brought to the fore and to the public attention, and to – both as readers and writers – also reflect on feelings and concerns expressed by patients themselves. This will hopefully lead to a greater understanding of what it means to be a patient and to increased levels of sympathy and empathy for what patients are going through. In saying this, the volume equally much highlights the role and significance of medical practitioners in times of increased patient rights and of pressing concerns, demands and expectations placed on the healthcare industry, at least in the Western world. (shrink)

I am grateful for these four wide-ranging and incisive commentaries on my paper discussing the ethical issues that arise when we consider the carbon footprint of inhalers.1 As I am unable to address every point raised, instead I focus on what I take to be the common thread running through these papers. Each response has something to say regarding the scope of healthcare’s responsibility to mitigate climate change. This can be explored at the intuitional or structural level, or at the (...) individual patient and practitioner level leading to a further issue of the relationship between these perspectives. Coverdale argues for broadening the scope of individual responsibilities regarding the climate.2 Discussing inhalers does not go far enough and doctors, argues Coverdale, are well placed to draw attention to the various behaviour changes patients can undertake both through role modelling and in the clinic. While Coverdale makes some excellent points, I have three worries about his proposal. One is relevance. Climate concerns may not always be pertinent in the clinical encounter; think of counselling a bereaved patient or somebody needing a fit note. Related to this is opportunity. General practitioners capacity to cover an inordinate amount in a 10 min consultation …. (shrink)

A cross-sectional study to ascertain what the Singapore population would regard as material risk in the anaesthesia consent-taking process and identify demographic factors that predict patient preferences in medical decision-making to tailor a more patient-centered informed consent. A survey was performed involving patients 21 years old and above who attended the pre-operative evaluation clinic over a 1-month period in Singapore General Hospital. Questionnaires were administered to assess patients’ perception of material risks, by trained interviewers. Patients’ demographics were obtained. (...) Mann–Whitney U test and Kruskal-Wallis one-way analysis of variance was used. Statistical significance was taken at p < 0.05. Four hundred fourteen patients were eligible of which 26 refused to participate and 24 were excluded due to language barrier. 364 patients were recruited. A higher level of education, being employed and younger age group are factors identified in patients who wanted greater participation in medical decisions. Gender, marital status, type of surgery, and previous surgical history did not affect their level of participation. The complications most patients knew about were Nausea, Drowsiness and Surgical Wound Pain. Patients ranked Heart Attack, Death and Stroke as the most significant risks that they wanted to be informed about in greater detail. Most patients wanted to make a joint decision with the anaesthetist, instead of letting the doctor decide or deciding for themselves. Discussion with the anaesthetist is the preferred medium of communication compared to reading a pamphlet or watching a video. Age and educational level can influence medical decision-making. Despite the digital age, most patients still prefer a clinic consult instead of audio-visual multimedia for pre-operative anaesthetic counselling. The local population appears to place greater importance on rare but serious complications compared to common complications. This illustrates the need to contextualize information provided during informed consent to strengthen the doctor-patient relationship. (shrink)

The present study aims to underline the current discussions on the religiosity-health outcome relation, highlighting the tensions that may arise in the course of the medical practice on the following questions: a) Is religiosity itself an (independent) factor capable to affect the outcome of patients with heart failure, or is the association between religiosity and health benefits mediated by other social and psychological factors?; b) To what extent do religious beliefs conduct to illness avoidance or acceptance and to adequate treatment (...) commitment, in other words those beliefs support or contradict the medical approach?; c) What measures on social policies and medical counselling level would be more effective and appropriate for the Romanian system?; d) In which of the following policy areas could the bioethical dimension be more flexible and efficiently integrated: the doctor-patient relationship, the steps of the medical act, the curative decision making and/or the long-term support of the patient? A large understanding and evaluation of the ethical and legal frame regarding the patient’s information, treatment and healthcare is required for the medical practitioners as long as the shared decision making between patient and clinician is one based on modern medical principles followed by clinicians. (shrink)

Since the introduction of drugs to prevent vertical transmission of HIV, the purpose of and approach to HIV testing of pregnant women has increasingly become an area of major controversy. In recent years, many strategies to increase the uptake of HIV testing have focused on offering HIV tests to women in pregnancy-related services. New global guidance issued by the World Health Organization (WHO) and the Joint United Nations Programme on HIV/AIDS (UNAIDS) specifically notes these services as an entry point for (...) provider-initiated HIV testing and counseling (PITC). The guidance constitutes a useful first step towards a framework within which PITC sensitive to health, human rights and ethical concerns can be provided to pregnant women in health facilities. However, a number of issues will require further attention as implementation moves forward. It is incumbent on all those involved in the scale up of PITC to ensure that it promotes long-term connection with relevant health services and does not result simply in increased testing with no concrete benefits being accrued by the women being tested. Within health services, this will require significant attention to informed consent, pre- and post-test counseling, patient confidentiality, referrals and access to appropriate services, as well as reduction of stigma and discrimination. Beyond health services, efforts will be needed to address larger societal, legal, policy and contextual issues. The health and human rights of pregnant women must be a primary consideration in how HIV testing is implemented; they can benefit greatly from PITC but only if it is carried out appropriately. (shrink)

In this paper several reasons as to why framing issues should be of greater interest to both medical ethicists and healthcare professionals are suggested: firstly, framing can help in explaining health behaviours that can, from the medical perspective, appear perverse; secondly, framing provides a way of describing the internal structure of ethical arguments; and thirdly, an understanding of framing issues can help in identifying clinical practices, such as non-directive counselling, which may, inadvertently, be failing to meet their own stated ethical (...) aims. The effect of framing on how individuals interpret information and how healthcare choices are influenced by framing are described. Next, the role of framing in ethical discourse is discussed with specific reference to Judith Jarvis Thomson’s philosophical mind experiment about abortion and the violinist. Finally, the implications of this analysis are examined for the practice of non-directive counselling, which aims at communicating information in a neutral, value-free way and thereby protecting patient autonomy. (shrink)

With the reduction in diseases due to nutritional deficiencies and infection, disorders which are wholly or partly genetic are becoming relatively more important in all branches of modern medicine. Genetic counselling has developed in recent years from just explaining to an individual or a couple the risk of them producing a handicapped child, to the possibility in many cases of better diagnosis and active intervention to reduce the risks. At the same time antenatal screening programmes have been introduced to detect (...) women who may be carrying a fetus with a severe handicapping anomaly. The ethical aspects of these advances are considered in this article. A practical approach to the resolution of any dilemmas is proposed which concentrates on the duties incumbent on doctors and other health care workers involved with patients who have or may carry genetic disorders. (shrink)

This book provides an elaboration and evaluation of the dominant conceptions of genetic counseling as they are accounted for in three different models: the teaching model; the psychotherapeutic model; and the responsibility model. The elaboration of these models involves an identification of the larger traditions, visions and theories of communication that underwrite them; the evaluation entails an assessment of each model’s theses and ultimately a comparison of their adequacy in response to two important concerns in genetic counseling: the (...) contested values of non-directiveness and the recognition of differences across perspectives, with special focus on how religious and spiritual beliefs of patients are coordinated with the networks of meaning in genetics. Several insights are made explicit in this project through the work of Robert Brandom. Brandom’s deontic scorekeeping model demonstrates how dialogue is at the root of grasping a conceptual content. Against this backdrop, professional communications such as genetic counseling can be seen as late developments in linguistic practices that have structural challenges. Brandom’s model reminds us that the professional needs the client’s understanding to grasp conceptual content in a particular context. (shrink)

If physicians and health practitioners could do one thing to markedly improve the health of their patients, what could that be? Counsel them to reduce or stop drinking sugar-sweetened beverages.The science is clear: sodas, juice drinks, iced teas, and vitamin, sports, and energy drinks provide the largest source of empty or non-nutritional calories in the American diet and accounted for an astonishing 46% of all added sugars consumed in 2010. Sodas top the list of all sugar-sweetened beverages consumed, with the (...) soda industry producing nearly one 12-ounce serving per person per day in 2011.While it's true that sugar consumption has decreased in recent years... (shrink)

Patients from religious minorities can face unique challenges reconciling their beliefs with the values that undergird Western Medical Ethics. This paper explores homologies between approaches of Orthodox Judaism and Islam to medical ethics, and how these religions’ moral codes differ from the prevailing ethos in medicine. Through analysis of religious and biomedical literature, this work examines how Jewish and Muslim religious observances affect decisions about genetic counseling, reproductive health, pediatric medicine, mental health, and end-of-life decisions. These traditions embrace a (...) theocentric rather than an autonomy-based ethics. Central to this conception is the view that life and the body are gifts from God rather than the individual and the primacy of community norms. These insights can help clinicians provide care that aligns Muslim and Jewish patients’ health goals with their religious beliefs and cultural values. Finally, dialogue in a medical context between these faith traditions provides an opportunity for rapprochement amidst geopolitical turmoil. (shrink)