In lieu of an abstract, here is a brief excerpt of the content:Lisa’s StoryLisa P. (wife of patient) and Jeanne KerwinMy husband suffered from sudden onset of heart failure with a very low ejection fraction and was on IV Milrinone at the age of 47. One of the most powerful things he told me was that he was not afraid to die and therefore did not want to move forward with Milrinone. He eventually “did it for the kids.” After the (...) Milrinone drip was no longer working, he was offered an LVAD (left ventricular assist device) to keep him alive. He refused, but the doctor again convinced him to “do it for your kids” and said, “we put these devices in 80-year-olds.” He did not have time to explore any other options and reluctantly accepted the LVAD. It was implanted in May of 2014 in a very long and complicated surgery with a long and difficult recovery. He was in the hospital for a long time, and then he refused to go to rehab upon discharge, making it difficult for our family to manage, as he was extremely weak and needed care of his wound dressing. He worried about the financial [End Page 7] impact of a heart transplant and the medications required, as we were already struggling with the medical bills. He refused to have more surgery with the potential complications and never agreed to get on the transplant waiting list.After the implanted LVAD, my husband was not able to do most of what he loved in life. He couldn’t work (he was a truck driver), he couldn’t go fishing or swimming in the ocean, he couldn’t go hunting and fishing, and his overall physical condition was so poor that he couldn’t cook, garden and, most aggravating to him, he could not take a regular hot shower. The LVAD had to be covered with plastic in order to avoid getting the drive-line area wet, so bathing was a complicated process. He had trouble with stairs, had neuropathic pain in his legs from diabetes, and because of the pain medications, he felt cloudy and dizzy and slept most of the day in his recliner. I took care of him, even after I had to go back to work, and at the same time, I managed our two children (ages 9 and 12 at the time of LVAD).After almost two years of living with the LVAD, multiple hospitalizations for GI bleeds then seizures, more medications, and weekly blood draws for INR1, my husband requested that the LVAD be de-activated and that he be allowed to die of his heart failure. He described his life as “miserable.” He watched as his misery impacted his children and me. He suffered daily and had none of the joys that made life worth living for him. When we approached the cardiac team that implanted and monitored his LVAD with his request, they said “no.” They would not de-activate the LVAD because it was working. It was keeping him alive and he had no other terminal illness. His palliative doctor, who was treating his pain, also heard his request and told us to call for an “ethics consult” to determine if he would be “allowed” to have the LVAD de-activated. We got the number and called on March 31, 2016.At the time of the call to Ethics, we had no idea what “Ethics” was, other than a general definition of the word ethics as in professional behaviors and such. We did not know what to expect but we called. We would never have known to call “Ethics” if the palliative doctor had not advised us to do so, and my husband might have suffered a longer, more painful life both mentally and physically prolonged by the LVAD.We explained the request to the ethics consultant. She listened to my husband describe his daily living and his dissatisfaction with the quality of his life, his physical and emotional suffering, and his wish to rid himself of the LVAD and allow nature to take its course. There was actually no decision to be made on his part. He had already made up... (shrink)

Incapacitated adult patients are commonly divided into two groups for purposes of decision making; those with a surrogate and those without. Respectively, these groups are often referred to as represented and unrepresented, and the relative ethics of decision making between them raises two particular issues. The first issue involves the differential application of the best interests standard between groups. Second is the prevailing notion that representedness and unrepresentedness are categorical phenomena, though it is more aptly understood as a multidimensional and (...) continuous variable based on relational moral authority. This paper examines the nature of representedness as it relates to ethical norms of surrogate decision making. (shrink)

This book approaches ethical and legal issues in medicine from the patient's viewpoint and argues that many patients do not want the full burden of decision making that contemporary bioethics has thrust upon them.

Patients have the right to refuse their treatment; however, this refusal should be informed. We evaluated the quality of the informed refusal process in Iranian hospitals from patients' viewpoints. To this end, we developed a questionnaire that covered four key aspects of the informed refusal process including; information disclosure, voluntariness, comprehension, and provider-patient relationship. A total of 284 patients who refused their treatment from 12 teaching hospitals in the Isfahan Province, Iran, were recruited and surveyed to produce a convenience sample. (...) Patients' perceptions about the informed refusal process were scored and the mean scores of the four components were calculated. The findings showed that the practice of information disclosure was perceived to be moderate, however, comprehension, voluntariness and provider–patient relationship were perceived to be relatively good. We found that patients, who refused their care before any treatment had commenced, reported a lower quality of information disclosure and voluntariness. Patients informed by nurses and those who had not had a previous related admission, reported lower scores for comprehension and relationship. In conclusion, the process of obtaining informed refusal was relatively satisfactory except for levels of information disclosure. To improve current practices, Iranian patients need to be better informed about; different treatment options, consequences of treatment refusal, costs of not continuing treatment and follow-ups after refusal. Developing more informative refusal forms is needed. (shrink)

This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients. We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK’s National Health Service. We explore two aspects of consent: first, (...) how healthcare professionals consider the act of ‘consenting’ patients; and second how these professional accounts, along with the accounts of patients, deepen our understanding of the consent process. Our findings suggest that while healthcare professionals working in genetic medicine put much effort into ensuring patients’ understanding about their impending genetic test, they acknowledge, and we show, that patients can still leave genetic consultations relatively uninformed. Moreover, we show how placing emphasis on the informational aspect of genetic testing is not always reflective of, or valuable to, patients’ decision-making. Rather, decision-making is socially contextualised – also based on factors outside of information provision. A more collaborative on-going consent process, grounded in virtue ethics and values of honesty, openness and trustworthiness, is proposed. (shrink)

In an analysis of recent work on nudging we distinguish three positions on the relationship between nudging founded in libertarian paternalism and the protection of personal autonomy through informed consent. We argue that all three positions fail to provide adequate protection of personal autonomy in the clinical context. Acknowledging that nudging may be beneficial, we suggest a fourth position according to which nudging and informed consent are valuable in different domains of interaction.

Patients with serious illnesses or injuries may decide to quit their medical treatment if they think paying the fees will put their families into destitution. Without treatment, it is likely that fatal outcomes will soon follow. We call this phenomenon “near-suicide”. This study attempted to explore this phenomenon by examining how the seriousness of the patient’s illness or injury and the subjective evaluation of the patient’s and family’s financial situation after paying treatment fees affect the final decision on the treatment (...) process. Bayesian Mindsponge Framework (BMF) analytics were employed to analyze a dataset of 1042 Vietnamese patients. We found that the more serious the illnesses or injuries of patients were, the more likely they were to choose to quit treatment if they perceived that paying the treatment fees heavily affected their families’ financial status. Particularly, only one in four patients with the most serious health issues who thought that continuing the treatment would push themselves and their families into destitution would decide to continue the treatment. Considering the information-filtering mechanism using subjective cost–benefit judgments, these patients likely chose the financial well-being and future of their family members over their individual suffering and inevitable death. Our study also demonstrates that mindsponge-based reasoning and BMF analytics can be effective in designing and processing health data for studying extreme psychosocial phenomena. Moreover, we suggest that policymakers implement and adjust their policies (e.g., health insurance) following scientific evidence to mitigate patients’ likelihood of making “near-suicide” decisions and improve social equality in the healthcare system. (shrink)

The question a judge has to ask in deciding whether or not life-sustaining treatment should be withdrawn is whether the continued treatment is lawful. It will be lawful if it is in the patient’s best interests. Identifying this question gives no guidance about how to approach the assessment of best interests. It merely identifies the judge’s job. The presumption in favour of the maintenance of life is part of the job that follows the identification of the question.The presumption is best (...) regarded as a presumption of law. It has long been recognised as part of the way in which the English law discharges its obligations under Article 2 of the European Convention on Human Rights (the right to life). But even if it is a ‘mere’ evidential presumption it cannot, on the facts of most cases involving applications for the withdrawal of life-sustaining treatment from patients in prolonged disorders of consciousness, be rebutted. (shrink)

BackgroundResearchers currently are not obligated to share individual research results with participants. This non-disclosure policy has been challenged on the basis of participants’ rights to be aware and in control of their personal medical information. Here, we determined how patients view disclosure of research PET results of brain amyloid and why they believe it is advantageous or disadvantageous to disclose.MethodAs a part of a larger diagnostic trial, we conducted semi-structured interviews with patients with amnestic Mild Cognitive Impairment. Participants had the (...) option to receive their brain amyloid PET scan result. Interviews were conducted before they received their IRR.ResultsA total of 38 aMCI patients wanted to know their IRR. The two most frequently mentioned reasons for choosing IRR disclosure were to better understand their brain health status and to be better able to make informed decisions about future personal arrangements. Emotional risk was mentioned as the primary disadvantage of knowing one’s IRR. On the other hand, non-disclosure was considered to be emotionally difficult also, as patients would be uncertain about their future health condition.ConclusionsMany patients diagnosed clinically with aMCI want to know their brain amyloid test results, even though this knowledge may be disadvantageous to them. Knowing what is going on with their health and the ability to make informed decisions about their future were the two principal advantages mentioned for obtaining their amyloid PET results. Because of the overwhelming consensus of aMCI patients was to disclose their brain amyloid PET scan results, researchers should strongly consider releasing this information to research subjects. (shrink)

An argument against the participation of physicians in capital punishment by means of lethal injection.

Background In the early stages of the COVID-19 pandemic, many health systems, including those in the UK, developed triage guidelines to manage severe shortages of ventilators. At present, there is an insufficient understanding of how the public views these guidelines, and little evidence on which features of a patient the public believe should and should not be considered in ventilator triage. Methods Two surveys were conducted with representative UK samples. In the first survey, 525 participants were asked in an open-ended (...) format to provide features they thought should and should not be considered in allocating ventilators for COVID-19 patients when not enough ventilators are available. In the second survey, 505 participants were presented with 30 features identified from the first study, and were asked if these features should count in favour of a patient with the feature getting a ventilator, count against the patient, or neither. Statistical tests were conducted to determine if a feature was generally considered by participants as morally relevant and whether its mean was non-neutral. Results In Survey 1, the features of a patient most frequently cited as being morally relevant to determining who would receive access to ventilators were age, general health, prospect of recovery, having dependents, and the severity of COVID symptoms. The features most frequently cited as being morally irrelevant to determining who would receive access to ventilators are race, gender, economic status, religion, social status, age, sexual orientation, and career. In Survey 2, the top three features that participants thought should count in favour of receiving a ventilator were pregnancy, having a chance of dying soon, and having waited for a long time. The top three features that participants thought should count against a patient receiving a ventilator were having committed violent crimes in the past, having unnecessarily engaged in activities with a high risk of COVID-19 infection, and a low chance of survival. Conclusions The public generally agreed with existing UK guidelines that allocate ventilators according to medical benefits and that aim to avoid discrimination based on demographic features such as race and gender. However, many participants expressed potentially non-utilitarian concerns, such as inclining to deprioritise ventilator allocation to those who had a criminal history or who contracted the virus by needlessly engaging in high-risk activities. (shrink)

BackgroundCancer patients often suffer from psychological distress during or after cancer treatment, but the use of psycho-oncological care among cancer patients is limited. One of the reasons might be that the way psycho-oncological care is organized, does not fit patients’ preferences. This study aimed to obtain detailed insight into cancer patients’ preferences regarding the organization of psycho-oncological care.Methods18 semi-structured interviews were conducted among cancer patients. Patients completed psycho-oncological treatment between 2015 and 2020 at the psychology department in a general hospital (...) or a center specialized in psychological cancer care in the Netherlands. The interview comprised questions related to preferences regarding the institute where to receive treatment, the psychologist who provides treatment, and the type of treatment, as well as questions related to experienced barriers and facilitators to receive psycho-oncological care. Interviews were digitally recorded and transcribed verbatim. Data were analyzed individually by two coders into key issues and themes.ResultsRegarding the institute, easy accessibility and prompt availability of psychol-oncological care were considered important. Regarding the psychologist, most participants had a strong preference to be treated by a psychologist specialized in cancer or other somatic diseases. Individual face-to-face therapy was preferred above other types of treatment. Several barriers were mentioned to receive psycho-oncological treatment, among which poor accessibility to psycho-oncological care, lack of knowledge on the possibilities for psycho-oncological treatment, and stigma. Most frequently mentioned facilitators were being assertive to ask for help, having a good relationship with the healthcare professional, and the integration of psycho-oncological support within medical cancer care.ConclusionFrom the patient’s perspective, the organization of psycho-oncological care for cancer patients should focus on easy accessibility and availability, delivered by specialized psychologists, and integration in medical cancer care. Online and group therapy are acceptable, but individual face-to-face therapy is preferred. It is warranted to increase awareness on psycho-oncological care targeting both patients and healthcare providers. (shrink)

People confront their doctors with three modes of unhealth - disease, illness and sickness. Each is discussed, and the question is asked and answered as to why in this situation people wish to become patients.

Clinical ethics committees (CECs) in the United Kingdom (UK) have developed significantly over the past 15 years. The issue of access to and participation in clinical ethics consultation by patients and family members has, however, gone largely unrecognized. There are various dimensions to this kind of contact, including patient notification, consent and participation. This study reports the first specific investigation of patient contact with UK CECs. A questionnaire study was carried out with representatives from UK CECs. Results suggest that patient (...) participation in clinical ethics consultation is low and unlikely to change significantly in the near future. Attitudes towards patients having a role in clinical ethics consultation are mixed, with a variety of reasons put forward both for and against patient participation. These results are discussed in the light of common themes in the literature and the practical and political context of clinical ethics support in the UK. (shrink)

The ArgumentOne disconcerting aspect of the role of culture in shaping human suffering is the gap between the explanatory models of therapists and patients in multicultural settings. This gap is particularly noted in working with Jewish ultra–Orthodox psychiatric patients whose idioms of distress are often derived from a sacred reality not easily reconcilable with psychomedical reality. To meet the challenge to therapeutic efficacy that this incompatibility may pose, we propose a culturally sensitive therapy based on strategic principles that focus on (...) the patient's mythic world and religious idioms of distress as the kernel of therapeutic interventions. Using one case of post–traumatic stress disorder (PTSD) as illustration, we seek to show how the religious symbols through which the patient's distress was articulated may be manipulated to effect cure. The case highlights the narrative quality of both illness construction and self–reconstruction. (shrink)

According to policy makers, telemedicine offers “huge opportunities to improve the quality and accessibility of health services.” It is defined as diagnosis, treatment, and monitoring, with doctors and patients separated by space but mediated through information and communication technologies. This mediation is explored through an ethnography of a U.K. teledermatology clinic. Diagnostic image transfer enables medicine at a distance, as patients are removed from knowledge generation by concentrating their identities into images. Yet that form of identity allows images and the (...) expert gaze to be brought into potentially lifesaving proximity. Following Latour’s thread, images must be captured and then mobilized to the knowledge base, where they must be stabilized into standard diagnoses, then combined with different images, waiting lists, skin lesions, dermatologists, paper records, and beds, so that ultimately, outcomes are produced. This huge task requires new knowledges and a widening of agency that, if unacknowledged, may see telemedicine projects continue to founder. (shrink)

Patients are often eager to get out of the hospital; so eager that some decide to leave before their treatment team feels it is medically appropriate for them to do so. This is known as an AMA disc...

As physicians encounter an increasingly diverse patient population, socioeconomic circumstances, religious values and cultural practices may present barriers to the delivery of quality care. Increasing cultural competence is often cited as a way to reduce healthcare disparities arising from value and cultural differences between patients and providers. Cultural competence entails not only a knowledge base of cultural practices of disparate patient populations, but also an attitude of adapting one's practice style to meet patient needs and values. Gender roles, relationship dynamics (...) and boundaries are culture specific, and are frequently shaped by religious teachings. Consequently, religion may be conceptualised as a cultural repertoire, or dynamic tool-kit, by which members of a faith adapt and negotiate their identity in multicultural societies. The manner in which Islamic beliefs and values inform Muslim healthcare behaviours is relatively under-investigated. In an effort to explore the impact of Islam on the relationship between patients and providers, we present an Islamic bioethical perspective on cross-gender relations in the patient-doctor relationship. We will begin with a clinical scenario highlighting three areas of gender interaction that bear clinical relevance: dress code, seclusion of members of the opposite sex and physical contact. Next, we provide a brief overview of the foundations of Islamic law and ethical deliberation and then proceed to develop ethicolegal guidelines pertaining to gender relations within the medical context. At the end of this reflection, we offer some practice recommendations that are attuned to the cultural sensitivities of Muslim patient populations. (shrink)

In the paper, after clarifying terms such as ‘identity’, ‘self’ and ‘personhood’, I propose an empirical account of identity based on the notion of “whole phenotype”. This move allows one to claim the persistence of the individuals before and after their being affected by dementia. Furthermore, I show how this account permits us to address significant questions related to demented individuals’ loss of the capacity of moral decisions.

A survey of the recent literature suggests that physicians should engage religious patients on religious grounds when the patient cites religious considerations for a medical decision. We offer two arguments that physicians ought to avoid engaging patients in this manner. The first is the Public Reason Argument. We explain why physicians are relevantly akin to public officials. This suggests that it is not the physician’s proper role to engage in religious deliberation. This is because the public character of a physician’s (...) role binds him/her to public reason, which precludes the use of religious considerations. The second argument is the Fiduciary Argument. We show that the patient-physician relationship is a fiduciary relationship, which suggests that the patient has the clinical expectation that physicians limit themselves to medical considerations. Since engaging in religious deliberations lies outside this set of considerations, such engagement undermines trust and therefore damages the patient-physician relationship. (shrink)

BackgroundIn our globalizing world, caregivers are increasingly being confronted with the challenges of providing intercultural healthcare, trying to find a dignified answer to the vulnerable situation of ethnic minority patients. Until now, international literature lacks insight in the intercultural care process as experienced by the ethnic minority patients themselves. We aim to fill this gap by analysing qualitative literature on the intercultural care encounter in the hospital setting, as experienced by ethnic minority patients.MethodsA systematic search was conducted for papers (...) published between 2000 and 2015. Analysis and synthesis were guided by the critical interpretive synthesis approach.ResultsFifty one articles were included. Four dimensions emerged, describing the intercultural care encounter as a meeting of two different cultural contexts of care, in a dynamic and circular process of balancing between the two cultural contexts, which is influenced by mediators as concepts of being human, communication, family members and the hospital’s organizational culture.ConclusionsThis review provides in-depth insight in the dynamic process of establishing intercultural care relationships in the hospital. We call for a broader perspective towards cultural sensitive care in which patients are cared for in a holistic and dignity-enhancing way. (shrink)

BackgroundEvidence suggests that organizational models that provide care interventions including patient support programs may increase patient adherence to multiple sclerosis therapies by providing tailored symptom management, informational support, psychological and/or social support, lifestyle changes, emotional adjustment, health education, and tailored coaching, thus improving patients' overall quality of life across the disease course.ObjectiveThe main objective of this study was to describe MS patients' self-reported experience of a nurse-led, telephone-based PSP and to explore its potential role in improving disease and therapy management (...) skills.MethodsSurvey data were analyzed from a subset of patients relapsing–remitting MS using interferon beta-1a already registered in the adveva® PSP from three Italian multiple sclerosis centers with a consolidated experience in RRMS disease, treatment management, and PSP programs.ResultsIn total, 244 patient data at baseline were analyzed, of which 115 had a follow-up of at least 6 months. Results from this study provide an early view into the role of this PSP in improving the patients reported overall experience regarding disease management and injectable therapy, thus potentially ameliorating treatment adherence and decreasing health care cost. Moreover, study findings confirm the role of providing a patient-focused support by addressing non-medication-related topics in the PSP consultations. Indeed, patients involved in the adveva® PSP program reported a better psychological status in the follow up as demonstrated by an increased optimism regarding their future, tolerance of disease uncertainty, and their perceived ability to benefit from external help and social support.ConclusionsAs such, it is reasonable to conclude that the involvement in the adveva® PSP and the PSP's assistance in guiding patients on proper treatment self-management techniques is of great value to patients as it might contribute to improving engagement in their health care journey in terms of perceived self-care skills, emotional coping toward the future and the unpredictability of the disease course and their general attitudes toward the injection itself, involving pain tolerance. (shrink)

Armstrong describes the rise of a new mode of medical practice that he calls in the following terms: Surveillance medicine gives rise to a novel and underexplored aspect of the long-standing tension between the different goals of clinical medicine and public health.

ObjectiveHormone positive breast cancer patients bear side effects of endocrine therapy and that may be related to depression and anxiety. We sought to find an association between mental health and side effects of endocrine therapy.MethodsA total of 398 patients participated. Sociodemographic, disease profile, and side effects questionnaires were administered. We screened for depressive and anxiety disorders by using the SDS and SAS.ResultsThe prevalence of depression and anxiety in our study were 33.4% and 13.3%, respectively. Depression was linked to education level, (...) night sweats, vaginal dryness, and fatigue ; anxiety was associated with education level, time to diagnosis, osteopenia, loss of hair, and fatigue. A stratified analysis according to age was performed as an exploratory. None of factor-age interactions was statistically significant.ConclusionSide effects of endocrine therapy were significantly associated with anxiety and depression. Side effects deserve greater emphasis and clinical interventions are needed to reduce anxiety and depression in breast cancer patients accepting ET. (shrink)

Background: A key message in the World Health Organization’s report on dementia emphasizes the need to improve public and professional attitudes to dementia and its understanding, while acknowledging the fact that the workforce in dementia care is becoming increasingly diverse culturally. Objectives: To explore possible differences among formal caretakers from varied cultural background in their attitudes toward the autonomy and human dignity of patients with dementia. Research design: Semi-structured interviews and content analysis, utilizing two fictional vignettes for eliciting caretakers’ attitudes (...) toward dignity and autonomy of their patients. Participants and context: A total of 20 formal caretakers of patients with dementia from three different cultural groups in Israel (“Sabras,” “Arabs,” and “Russians”), working in nursing homes and a hospital. Ethical consideration: Approvals of relevant research ethics committees were obtained and followed. Findings: In comparison with the other groups, most Arab caretakers offer markedly richer perceptions of human dignity and autonomy. Their human dignity’s conceptualization emphasizes “person-centered approach,” and their perception of patients’ autonomy includes provision of explanations and preservation and encouragement of independence. Discussion: The differences found in the attitudes toward the meaning of autonomy and human dignity between the Arab caretakers and the other caretakers stand in contrast to previous studies regarding human dignity, emphasizing the common nature of these attitudes. Offering a linkage (theoretical and empirical) between the Arab perceptions of dignity and autonomy, the study strengthen and further the importance attributed in existing literature to person-centered care in enhancing the quality of care for patients with dementia. Conclusion: The conceptualization of human dignity may vary among different cultural groups. It may also influence the extent to which the caretaker holds a full-fledged perception of the patients’ autonomy. (shrink)

The argument that a permanent vegetative state equates to death because it marks the death of the person is not a new one, but I wonder whether Ravelingien et al1 need to regard those in a PVS as dead to make a case for animal to human transplantation trials taking place in such people. It is not an argument likely to convince anyone who refuses to accept that only human persons have inherent value, dignity or a right to life, and (...) the arguments on both sides have been well rehearsed, with no sign of reconciliation. My own view is that people in a PVS are still alive, albeit with a poor quality of life. I see no objection in principle to the proposal that competent people can decide, in advance, to participate in research when they become incompetent. At the present time, it is generally accepted that an advance refusal of consent should be respected. Some controversy exists on whether someone can insist on treatment in advance, but in Ravelingien et al’s1 paper, what is being proposed is not that people can insist on becoming research participants, but rather that they can signal a willingness to become such a participant in the future. Indeed, this principle can be extended to competent people such as those with early …. (shrink)

This article analyses problem situations in the context of anaesthesia care. It considers what it means for nurse anaesthetists to be in problematic situations in the anaesthesia care of older patients. Benner’s interpretive phenomenological approach proved useful for this purpose. Paradigm cases are used to aid the analysis of individual nurses’ experiences. Thirty narrated problematic anaesthesia care situations derived from seven interviews were studied. These show that experienced nurse anaesthetists perceive anaesthesia care as problematic and highly demanding when involving older (...) patients. To be in problematic anaesthesia care situations means becoming morally distressed, which arises from the experience or from being prevented from acting according to one’s legal and moral duty of care. An important issue that emerged from this study was the need for an ethical forum to discuss and articulate moral issues, so that moral stress of the kind experienced by these nurse anaesthetists can be dealt with and hopefully reduced. (shrink)