"What if this is my chance to save my life?" A semistructured interview study on the motives and experiences of end-stage renal disease patients who engaged in public solicitation of a living kidney donor.

The increase in patients using public solicitation (PS) to find a living kidney donor has generated a debate about the ethical complexities of PS. To investigate why patients engaged in PS and what they experienced during PS, we conducted semistructured interviews with 20 Dutch patients with end-stage renal disease who had publicly solicited a living donor. Transcripts were thematically analyzed. We identified ten themes on patients' considerations preceding PS: cautiousness in discussing living donation within social network; reluctance to accept a kidney from loved ones; rejection/withdrawal of related donor candidates; moral objections to paid donation; the ease of social media; encouraged by others; ends justifying the means; despair and urge to take action; public disclosure of vulnerability; fear of being (perceived to be) selfish. We identified nine themes on patients' experiences: positive emotions and support generated by action; genuine and ulterior motives for donation; patients acting as educators and screeners; time- and energy-consuming process; emotionally taxing process; positive interactions with donor candidates; feeling of dependency and obligation; limited cooperation from health professionals; demands a proactive attitude and media strategy. These results can inform and complement (existing) policies on PS and provide content for education of patients who are considering PS.

Barriers in the Uptake and Delivery of Preconception Care: Exploring the Views of Care Providers.

Objectives To examine health care professionals' views of their role and responsibilities in providing preconception care and identify barriers that affect the delivery and uptake of preconception care. Methods Twenty health care professionals who provide preconception care on a regular basis were interviewed using semi-structured interviews. Results We interviewed twelve community midwives, three General Practitioners, three obstetricians, one cardiologist specialized in congenital heart diseases and one gastroenterologist.We identified four barriers affecting the uptake and delivery of preconception care (PCC): (1) lack of a comprehensive preconception care program; (2) limited awareness of most future parents about the benefits of preconception care, hesitance of GP's about the necessity and effectiveness of PCC; (3) poor coordination and organization of preconception care; (4) conflicting views of health care professionals on pregnancy, reproductive autonomy of patients and professional responsibility. Conclusion We have identified four barriers in the uptake and delivery of preconception care. Our findings support the timely implementation of a comprehensive program of PCC (already advocated by the Health Council of the Netherlands) and increasing awareness and knowledge of PCC from care providers and future parents. We emphasize the need for further research on how organizational barriers lead to suboptimal PCC and how interdisciplinary collaboration and referral can lead to optimally tailored intervention approaches.

Seriously ill patients as living unspecified kidney donors: rationale and justification.

BACKGROUND: Between 2000 and December 2013, 106 live donor nephrectomies from anonymous living-donors were performed at the Erasmus MC Rotterdam; five of the donors (5.4%) had a life-threatening disease. The aim of the present report is to give the rational and justification for this procedure. METHODS: All five donors underwent the national standard living-donor screening procedure. Additionally, motivation to donate and psychologic stability were assessed by a psychologist using in-depth interview techniques and a psychologic complaints questionnaire. Post-donor nephrectomy follow-up consisted of standard questionnaires and clinical check-ups. RESULTS: One patient had cerebral and caudal ependymomas, one had severe and progressive emphysema, two had Huntington's disease and one had a grade 2 oligodendroglioma. The psychologic screening revealed genuine motivation, adequate risk perception, and normal sense of reality. No contraindications for donation were found. The five donor nephrectomies made nine kidney transplantations possible. All donors were satisfied with the donation procedure. Three donors died during follow-up (0.6-4.9 years) as a result of their disease. CONCLUSION: In the absence of apparent additional health risks, medical, and psychologic contraindications, we consider it ethically justified to accept an offer from a cognitively competent patient with a life-threatening disease in view of their self-reported satisfaction during follow-up. Although based on a limited number of patients, we conclude that a stricter psychologic screening for seriously ill donors compared to healthy unspecified anonymous donors to unspecified patients is not necessary.

The short-term psychological impact of complications after breast reconstruction.

OBJECTIVES: Few studies have focused on the psychological impact of postoperative complications after breast reconstruction (BR). As postoperative complications after BR usually lead to a prolonged recovery time and sometimes require additional surgery, the short-term impact on distress was investigated. METHODS: Pre- and postoperatively, psychological questionnaires were sent to 152 women who underwent either implant BR or deep inferior epigastric artery perforator flap BR (DIEPBR). In addition, patients and physicians' reports of postoperative complications during the first 4-6 weeks after BR were scored. The course of anxiety, depression and cancer-specific distress, and the effect of complications on distress were investigated. RESULTS: Implant BR patients reported decreased anxiety after surgery, and both groups reported reduced cancer-specific distress after surgery. However, depressive symptoms tended to increase after DIEPBR. If complications occurred, both reconstruction groups reported increased depressive and anxiety symptoms, and DIEPBR patients even had depressive symptoms of clinical concern. A significant number of patients with complications reported alarming levels of distress. Timing and laterality were not significantly correlated with distress. CONCLUSIONS: Complications after BR have a significant impact on emotional well-being shortly after surgery. As distress affects quality of life and health outcomes, it is of great importance to offer psychological support to these patients. Distress can be evaluated by monitoring the emotional impact of BR during post-surgery consults, or with the standard use of short psychological questionnaires that patients can complete at home.

Moral issues in workplace health promotion.

PURPOSE: There is debate to what extent employers are entitled to interfere with the lifestyle and health of their workers. In this context, little information is available on the opinion of employees. Within the framework of a workplace health promotion (WHP) program, moral considerations among workers were investigated. METHODS: Employees from five companies were invited to participate in a WHP program. Both participants (n = 513) and non-participants (n = 205) in the program filled in a questionnaire on individual characteristics, lifestyle, health, and opinions regarding WHP. RESULTS: Nineteen percent of the non-participants did not participate in the WHP program because they prefer to arrange it themselves, and 13% (also) preferred to keep private life and work separate. More participants (87%) than non-participants (77%) agreed with the statement that it is good that employers try to improve employees' health (χ(2) = 12.78, p = 0.002), and 26% of the non-participants and 21% of the participants think employer interference with their health is a violation of their privacy. Employees aged 50 year and older were more likely to agree with the latter statement than younger workers (OR = 1.56, 95% CI 1.02-2.39). CONCLUSION: This study showed that most employees support the importance of WHP, but in a modest group of employees, moral considerations may play a role in their decision whether or not to participate in WHP. Older workers were more likely to resist employer interference with their health. Therefore, special attention on such moral considerations may be needed in the communication, design, and implementation of workplace health promotion programs.

Justification for a home-based education programme for kidney patients and their social network prior to initiation of renal replacement therapy.

In this article, an ethical analysis of an educational programme on renal replacement therapy options for patients and their social network is presented. The two main spearheads of this approach are: (1) offering an educational programme on all renal replacement therapy options ahead of treatment requirement and (2) a home-based approach involving the family and friends of the patient. Arguments are offered for the ethical justification of this approach by considering the viewpoint of the various stakeholders involved. Finally, reflecting on these ethical considerations, essential conditions for carrying out such a programme are outlined. The goal is to develop an ethically justified and responsible educational programme.

Information-seeking behaviour and coping style of women opting for either implant or DIEP-flap breast reconstruction.

BACKGROUND: High satisfaction rates have been reported after autologous breast reconstruction. Yet, most mastectomy patients receive implant reconstructions (ImBR). Independent and active decision makers have shown mainly to choose for autologous reconstructions, such as the Deep inferior epigastric perforator (DIEP) flap (DiepBR). To further explore the decision making to opt for either ImBR or DiepBR, we investigated patient knowledge, informational resources used, effect of plastic surgeons' advice, coping style and personal independence. METHODS: A total of 153 women, who were planned for DiepBR or ImBR preoperatively, completed a study-specific and standardised validated psychological questionnaire. Analyses were aimed at information-seeking behaviour, personal independence and coping styles associated with autonomous decision making regarding reconstruction. RESULTS: DiepBR women reported different informational resources to be very important and they were more active information seekers, compared with ImBR women. ImBR women found their physician's advice to be more important in their decision making than DiepBR women. Actively seeking for information regarding BR was positively correlated with active coping, sensitivity to others and the decision for DIEP-flap BR. CONCLUSIONS: Women opting for DIEP-flap BR were more active and independent in their decision making regarding the type of BR. Women opting for implant BR seemed less well-informed and more dependent on their physician in their decision compared with women opting for DIEP-flap BR. To undergo a complex type of BR, active and independent information seeking may be required. However, clinical and logistic characteristics need to be considered, as some patients were limited in their reconstruction options.

Women's motives to opt for either implant or DIEP-flap breast reconstruction.

OBJECTIVE: Understanding women's motives concerning breast reconstructive surgery will contribute to a better counselling and care for the increasing number of women choosing post-mastectomy breast reconstruction (BR). METHODS: We interviewed 31 women who opted for implant or deep inferior epigastric perforator (DIEP)-flap BR after therapeutic or prophylactic mastectomy. Motives for BR in general and for the selected type of BR were investigated following a phenomenological qualitative research approach. RESULTS: Women opting for implant BR were concerned with surgery-related issues, such as recovery time, number of scars and impact of surgery. They wanted to return to their daily life and restore their body image as soon as possible. Patients choosing DIEP-flap BR were more focussed on regaining a natural breast and wanted to benefit from the advantages of autologous tissue. Women scheduled for prophylactic mastectomy saw BR as an integral part of their treatment. Patients opting for BR after therapeutic mastectomy wanted to regain a complete body image with BR. CONCLUSIONS: Patients' motives for implant BR were primarily related to surgical issues, whereas women who chose DIEP-flap BR especially focussed on regaining a breast that resembles their own lost breast as well as possible. Clinical variables (such as therapeutic or prophylactic mastectomy, breast irradiation, and waiting lists) need to be taken into account when considering a certain type of BR, as these can be of great importance in the decision-making process.

Avoiding the issue: patients' (non)communication with potential living kidney donors.

OBJECTIVE: Kidney transplantation with a living donor has proved to be an effective solution for kidney patients on the waiting list for transplantation. Nevertheless, it may be difficult to find a living kidney donor. The purpose of this explorative study is to investigate how kidney transplant candidates may, or may not, find a living donor in the Netherlands. METHODS: We compared a group of 42 patients who did not find a living donor with a group of 42 patients who did, using semi-structured interviews. RESULTS: We found that, although almost all patients recognized the advantages of living kidney donation and were willing to accept the offer of a living kidney donor, many found it very difficult to ask a potential donor directly. This was true for both groups. CONCLUSION: Patients may gain from professional support to deal with this situation in ways that balance their medical needs and their personal relationships. PRACTICE IMPLICATIONS: Support programs should be developed to assist patients in developing strategies for discussing living kidney donation with potential donors.

Psychological barriers for living kidney donation: how to inform the potential donors?

BACKGROUND: This is the first large-scale interview study carried out in patients and potential donors who seem unwilling or unable to pursue living kidney donation. By investigating these groups, we explored whether further expansion of the living kidney donation program is feasible. METHODS: We interviewed 91 patients on the waiting list for a kidney transplant who did not pursue living kidney donation and their potential donors (n=53). We also included a comparison group. All respondents underwent an in-depth interview by a psychologist about topics that could influence their willingness to pursue living kidney donation. RESULTS: A total of 78% of the patients on the waiting list were willing to accept the offer of a living donor. The main reason for not pursuing living kidney donation was reluctance to discuss the issue with the potential donors. This was also found in the comparison group. Both groups indicated that if there was no donor offer, they tended to interpret this as a refusal to donate. This interpretation not always holds: more than one third (19 of 53) of the potential donors were open to consider themselves as a potential donor. On the other hand, a comparably sized group of potential donors (21 of 53) was reluctant about donation. The main reason for donor reluctance was fear for their health after donation. CONCLUSION: The majority of patients on the waiting list are willing to accept a living kidney donor, but adopt an awaiting attitude towards their potential donors. Offering those patients professional assistance should be considered.

Should health care professionals encourage living kidney donation?

Living kidney donation provides a promising opportunity in situations where the scarcity of cadaveric kidneys is widely acknowledged. While many patients and their relatives are willing to accept its benefits, others are concerned about living kidney programs; they appear to feel pressured into accepting living kidney transplantations as the only proper option for them. As we studied the attitudes and views of patients and their relatives, we considered just how actively health care professionals should encourage living donation. We argue that active interference in peoples' personal lives is justified - if not obligatory. First, we address the ambiguous ideals of non-directivity and value neutrality in counselling. We describe the main pitfalls implied in these concepts, and conclude that these concepts cannot account for the complex reality of living donation and transplantation. We depict what is required instead as truthful information and context-relative counselling. We then consider professional interference into personal belief systems. We argue that individual convictions are not necessarily strong, stable, or deep. They may be flawed in many ways. In order to justify interference in peoples' personal lives, it is crucial to understand the structure of these convictions. Evidence suggests that both patients and their relatives have attitudes towards living kidney donation that are often open to change and, accordingly, can be influenced. We show how ethical theories can account for this reality and can help us to discern between justified and unjustified interference. We refer to Stephen Toulmin's model of the structure of logical argument, the Rawlsian model of reflective equilibrium, and Thomas Nagel's representation of the particularistic position.

Altruistic living kidney donation challenges psychosocial research and policy: a response to previous articles.

BACKGROUND: Policies with respect to altruistic living kidney donation to strangers (both nondirected and directed donation) should, in addition to medical criteria, preferably be based on valid attitude research data. However, deciding on what data are relevant is a normative issue. The challenge for both research and policy making is to bring together empirical and normative issues. METHODS: By comparing two recent surveys, the authors shed light on the complex methodologic and ethical questions surrounding altruistic living kidney donation. RESULTS: The authors found that the main methodologic issues were the distinction between the willingness to donate and the acceptability of the offer, the difference between public attitudes observed in surveys ("facts") and well-considered moral judgments ("norms"), and biases caused by a misperception of central moral concepts (e.g., discrimination and injustice). The authors argue that transplantation centers have a good case for applying or initiating altruistic living donation programs. Centers should seek to influence public attitudes if these attitudes are shown to be biased by prejudice and misunderstanding. CONCLUSIONS: The authors advocate an interaction between research and policy making. Social research can best influence transplantation policies in altruistic living donation by in-depth interviews into the complicated background beliefs underlying personal preferences. In addition, the public should be encouraged to judge the immanent issues in a morally responsible way. In the end, a fair balance should be established between the impartial requirements of social justice and the partial motivations of individuals involved in altruistic living donation. Although discriminatory acts should be rejected categorically, donation policies should be willing to consider, support, and accept motivations based on personal loyalties.

Directed altruistic living organ donation: partial but not unfair.

Arguments against directed altruistic living organ donations are too weak to justify a ban. Potential donors who want to specify the non-related person or group of persons to receive their donated kidney should be accepted. The arguments against, based on considerations of motivation, fairness and (non-)anonymity (e.g. those recently cited by an advisory report of the Dutch Health Council), are presented and discussed, as well as the Dutch Government's response. Whereas the Government argues that individuals have authority with regard to the allocation of their organs, partial considerations have not been sufficiently explored. In addition, it is argued that partial relationships govern human life, are significant and should be valued highly. These relationships are at the core of accepted living kidney donation between relatives (family members, partners, friends). Respecting the particular act of living donation goes beyond respect for autonomy; it touches upon our personal and social identity. Donation, e.g. of a kidney, is not undertaken strictly for the benefit of the recipient, but also to meet the moral standards we wish to set for ourselves. This consideration, rooted in a view of moral identity, provides the basis for many forms of directed donation that are both partial and justified. If the importance of this is not recognized, social policies can be neither adequate nor effective.

Physical beauty: only skin deep?

Personal appearance and physical beauty are becoming increasingly important in our societies and, as a consequence, enter into the realm of medicine and health care. Adequate and just health care policies call for an understanding of this trend. The core question to be addressed concerns the very idea of beauty. In the following, a conceptual clarification is given in terms of beauty's meaning, value and function (i.e. beauty that is used instrumentally, and beauty that is attained). Furthermore, some relevant distinctions are drawn between physical and artistic beauty, and physical beauty in a human sense. The core idea for this is formed by a Kantian notion of the beauty concept. It is argued that beauty judgements should be understood as relative to persons and their contexts. Physical beauty should be taken seriously when it is understood in this deeper sense of being related to the shaping of a person's identity.