Background:Caring for patients with serious illness may severely strain clinicians causing distress and probable poor patient outcomes. Unfortunately, clinician distress and its impact historically has received little attention.Research purpose:The purpose of this article was to investigate the nature of clinician distress.Research design:Qualitative inductive dimensional analysis.Participants and research context:After review of 577 articles from health sciences databases, a total of 33 articles were eligible for analysis.Ethical considerations:This study did not require ethical review and the authors adhered to appropriate academic standards (...) in their analysis.Findings:A narrative of clinician distress in the hospital clinician in the United States emerged from the analysis. This included clinicians’ perceptions and sense of should or the feeling that something is awry in the clinical situation. The explanatory matrix consequence of clinician distress occurred under conditions including: the recognition of conflict, the recognition of emotion, or the recognition of a mismatch; followed by a process of an inability to feel and act according to one’s values due to a precipitating event.Discussion:This study adds three unique contributions to the concept of clinician distress by (1) including the emotional aspects of caring for seriously ill patients, (2) providing a new framework for understanding clinician distress within the clinician’s own perceptions, and (3) looking at action outside of a purely moral lens by dimensionalizing data, thereby pulling apart what has been socially constructed.Conclusion:For clinicians, learning to recognize one’s perceptions and emotional reactions is the first step in mitigating distress. There is a critical need to understand the full scope of clinician distress and its impact on the quality of patient-centered care in serious illness. (shrink)

Background One of the biggest challenges of practicing medicine in the age of informational technology is how to conciliate the overwhelming amount of medical-scientific information with the multiple patients’ values of modern pluralistic societies. To organize and optimize the the Decision-Making Process of seriously ill patient care, we present a framework to be used by Healthcare Providers. The objective is to align Bioethics, Evidence-based Practice and Person-centered Care. Main body The framework divides the DMP into four steps, each (...) with a different but complementary focus, goal and ethical principle. Step 1 focuses exclusively on the disease, having accuracy is its ethical principle. It aims at an accurate and probabilistic estimation of prognosis, absolute risk reduction, relative risk reduction and treatments’ burdens. Step 2 focuses on the person, using empathic communication to learn about patient values and what suffering means for the patient. Emphasis is given to learning and active listening, not taking action. Thus, instead beneficence, we trust comprehension and understanding with the suffering of others and respect for others as autonomous moral agents as the ethical principles of Step 2. Step 3 focuses on the healthcare team, having the ethics of situational awareness guiding this step. The goal is, through effective teamwork, to contextualize and link rates and probabilities related to the disease to the learned patient’s values, presenting a summary of which treatments the team considers as acceptable, recommended, potentially inappropriate and futile. Finally, Step 4 focuses on provider-patient relationship, seeking shared Goals of Care, for the best and worst scenario. Through an ethics of deliberation, it aims for a consensus that could ensure that the patient’s values will be respected as well as a scientifically acceptable medical practice will be provided. In summary: accuracy, comprehension, understanding, situational awareness and deliberation would be the ethical principles guiding each step. Conclusion Hopefully, by highlighting and naming the different perspectives of knowledge needed in clinical practice, this framework will be valuable as a practical and educational tool, guiding modern medical professionals through the many challenges of providing high quality person-centered care that is both ethical and evidence based. (shrink)

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)

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)

:Empirical work has shown that patients and physicians have markedly divergent understandings of treatability statements in the context of serious illness. Patients often understand treatability statements as conveying good news for prognosis and quality of life. In contrast, physicians often do not intend treatability statements to convey improvement in prognosis or quality of life, but merely that a treatment is available. Similarly, patients often understand treatability statements as conveying encouragement to hope and pursue further treatment, though this (...) may not be intended by physicians. This radical divergence in understandings may lead to severe miscommunication. This paper seeks to better understand this divergence through linguistic theory—in particular, H.P. Grice’s notion of conversational implicature. This theoretical approach reveals three levels of meaning of treatability statements: the literal meaning, the physician’s intended meaning, and the patient’s received meaning. The divergence between the physician’s intended meaning and the patient’s received meaning can be understood to arise from the lack of shared experience between physicians and patients, and the differing assumptions that each party makes about conversations. This divergence in meaning raises new and largely unidentified challenges to informed consent and shared decision making in the context of serious illness, which indicates a need for further empirical research in this area. (shrink)

Purpose The debate about the end-of-life care decision is becoming a serious ethical and legal concern in the Far-Eastern countries of Korea, China and Japan. However, the issues regarding end-of-life care will reflect the cultural background, current medical practices and socioeconomic conditions of the countries, which are different from Western countries and between each other. Understanding the genuine thoughts of patients who are critically ill is the first step in confronting the issues, and a comparative descriptive study of these (...) perspectives was conducted by collaboration between researchers in all three countries. Methods Surveys using self-reporting paper questionnaire forms were conducted from December 2008 to April 2009 in Korea (six hospitals in two regions), China (five hospitals in four regions) and Japan (nine hospitals in one region). The subjects were patients who were critically ill who had been diagnosed as having cancer. A total of 235 participants (Korea, 91; China, 62; Japan, 52) were eventually recruited and statistically analysed. Results Most respondents had sometimes or often thought of their own death, mostly fear of ‘separation from loved ones’. They wanted to hear the news regarding their own condition directly and frankly from the physician. A quarter of them preferred making end-of-life care decisions by themselves, while many respondents favoured a ‘joint decision’ with their family members. The most favoured proxy decision maker was the spouse, followed by the children. Most admitted the necessity of ‘advance directives’ and agreed with artificial ventilation withdrawal in irreversible conditions. The most common reason was ‘artificial prolongation of life is unnecessary’. Most respondents agreed with the concept of active euthanasia; however, significant differences were sometimes observed in the responses according to variables such as patient's country of origin, age, gender and education level. Conclusion Patients in Far-Eastern countries gave various responses regarding end-of-life care decisions. Although familial input is still influential, most patients think of themselves as the major decision maker and accept the necessity of advance directives with Westernization of the society. Artificial ventilation withdrawal and even active euthanasia may be acceptable to them. (shrink)

Background Preserving persons’ dignity is integral to nursing. More research is needed to explore how a diversity of patients, particularly those that experience illness from a young age, experience dignity. Aim Describe the characteristics of dignity for persons living with serious illness. Research design Using a secondary data set of twenty audio-recorded interviews, a thematic content analysis was conducted to identify characteristics of dignity. The research team employed van Gennip et al.’s, 2013 “Model of Dignity in Illness” (1) to (...) create a codebook, which the authors utilized to independently code twenty narrative interview transcripts. Participants and research context Twenty persons living with serious illness of heart failure and/or dialysis-dependent renal failure who were admitted in an acute care hospital. Ethical considerations This study was approved on August 26, 2019, by the Colorado Multiple Institutional Review Board (COMIRB) IRB Protocol #19-1874. Findings Early-onset participants expressed markedly different dignity concerns than late-onset participants. In the individual domain, early-onset participants felt that their illness was “normal”; they did not experience the “healthy person to patient” transition described by older onset participants. In the relational domain, early-onset participants expressed that their relationships had already integrated their illness while late-onset participants felt that their illness harmed many of their relationships. In the societal domain, early-onset participants described dignity concerns related to how society impacted their ability to financially support themselves during their illness. Discussion Differences in the dignity experience of early-onset and late-onset participants are informed by Erikson’s “Model of Development” and by Aranda and Jones feminist critique of dignity in healthcare. Conclusions Persons with early-onset illness experience dignity differently. Awareness of the importance of work and financial independence to the experience of dignity for seriously ill patients may enhance persons’ dignity experience. (shrink)

Chronic kidney failure is a serious somatic disease. Addressing the issue of living with a chronic disease means fully considering the patients’ entourage, their families, and those close to them, especially their children and spouses.Objectives: The present paper focuses on the couple’s psychological experience when one of them suffers from a chronic disease, in this instance kidney disease. In particular, how is the spouse affected by the treatment provided? The aim is not only to see how care for sick (...) people can be improved, but also, more specifically, how relatives and especially partners can receive attention.Methodology: A qualitative approach is not only adopted, being based on the psychotherapeutic follow-up of the partners of patients with chronic kidney disease, but also of the patients themselves, addressing the matter of their life as a couple. Three couples were considered, and two case studies are presented here. The issues that cut across these different situations are examined.Results and Discussion: Some couples show considerable resourcefulness. However, over the years, that capacity for adaptation and inventiveness can also be interrupted by the periods of greater suffering and even despair, especially when the somatic pathology becomes chronic. Many spouses talk about how living with a sick partner weighs down on them, causing severe fatigue. Some aspects of the illness can also become traumatic. The disease regularly disrupts the daily life of the couple and the family. This leads to a reworking of family relations. Each couple has its own history with the condition. As it emerges, it can disrupt the bonds of filiation, especially when the illness is hereditary. Making psychological care more accessible to the partners involved constitutes a major challenge for our hospital care systems. (shrink)

OBJECTIVES: To study some ethical problems created by accession of a previously nomadic and traditional society to modern invasive medicine, by assessment of physicians' attitudes towards sharing information and decision-making with patients in the setting of a serious illness. DESIGN: Self-completion questionnaire administered in 1993. SETTING: Riyadh, Jeddah, and Buraidah, three of the largest cities in Saudi Arabia. SURVEY SAMPLE: Senior and junior physicians from departments of internal medicine and critical care in six hospitals in the above cities. RESULTS: (...) A total of 249 physicians participated in the study. Less than half indicated they provided information on diagnosis and prognosis of serious illnesses all the time. Physicians who were more senior and those who spoke Arabic fared better than other groups. The majority preferred to discuss information with close relatives rather than patients, even when the patients were mentally competent. Most of the physicians felt patients had the right to refuse a specific treatment modality, and 68% denied patients the right to demand such a treatment if considered futile. Further analysis showed that physicians' attitudes varied along a spectrum from passive to paternalistic with the largest group in a balanced position. CONCLUSIONS: In traditional societies where physicians are regarded as figures of authority and family ties are important, there is a considerable shift of access to information and decision-making from patients to their physicians and relatives in a manner that threatens patients' autonomy. Ethical principles, wider availability of invasive medical technology and a rise in public awareness dictate an attitude change. (shrink)

Cultural values influence how people understand illness and dying, and impact their responses to diagnosis and treatment, yet end-of-life care is rooted in white, middle class values. Faith, hope, and belief in God’s healing power are central to most African Americans, yet life-preserving care is considered “aggressive” by the healthcare system, and families are pressured to cease it.

Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care planning has been associated with improved outcomes; yet, (...) despite over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%).Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process. (shrink)

BackgroundAll hospital trusts in Norway have clinical ethics committees. Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have experienced being involved in CEC discussions.MethodsTen next of kin of six seriously ill children were interviewed. Their cases were discussed in two CECs between April of 2011 and March of 2014. The main ethical dilemma was limitation of life-prolonging treatment. Health (...) care personnel who could elucidate the case were also present in the discussion. The interviewer observed each discussion and then interviewed the next of kin shortly after the meeting, following a structured interview guide.ResultsAll next of kin emphasized that it had been important for them to be present. They stressed the important role of the CEC chair and appreciated that their case was discussed in a systematic way. Some next of kin appreciated that the child’s impending death was discussed openly, and believed that this would facilitate their future grieving. Having had an opportunity to hear all the arguments behind the decision to be made would probably help them to accept the road ahead.All of them felt that they were taken seriously and listened to. They felt that they had added vital information to the discussion. All but one couple did not want any decision-making responsibility, some of them even worried that they might have influenced the discussion too much.ConclusionsNone of the next of kin felt that being present during the CEC discussion had been too heavy a burden. On the contrary, they claimed that their presence in a CEC discussion may add vital information to the discussion and may improve the quality of the decision. It is important that the CEC’s role is explained to them so they are well prepared for what to expect. They need to be followed up after the discussion. (shrink)

Elisabeth Kübler-Ross’ seminal 1969 work, On Death and Dying, opened the door to understanding individuals’ emotional experiences with serious illness and dying. Patient’s emotions, however, are on...

Objective: Pulmonary complications could badly affect the recovery of neurological function and neurological prognosis of neurological critically ill patients. This study evaluated the effect of high-flow nasal cannula therapy on decreasing pulmonary complications in neurologically critically ill patients.Patients and Methods: The patients admitted to the intensive care unit with serious neurological disease and receiving oxygen therapy were retrospectively reviewed. Patients were divided into the HFNC group and the conventional oxygen therapy group. We analyzed the data (...) within these two groups, including patients’ baseline data, short-term outcomes of respiratory complications, general outcomes including hospital stay, ICU stay and mortality, and neurological functions. To analyze the relevant factors, we performed multivariable logistic regression analysis.Results: A total of 283 patients met the criteria, including 164 cases in the HFNC group and 119 cases in the COT group. The HFNC group had remarkably less mechanical ventilation requirement with lower phlegm viscosity. Even more, ICU stay and total hospital stay were significantly shortened in the HNFC group.Conclusion: HFNC decreased pulmonary complications in neurologically critically ill patients and improved recovery of neurological function and neurological prognosis. (shrink)

Life‐threatening illness is associated with financial burden among families. During this time, care‐related expenses often increase. The concept of financial burden has not fully been explored nor conceptually described in the literature. Our study coalesces the empirical literature on financial burden into a more comprehensive multidimensional theoretical framework to understand financial burden among patients and families dealing with serious illness. Using Jabareen's phased approach for building conceptual frameworks, we synthesized the existing scientific literature (including existing measures of financial burden) (...) to construct an empirically derived model. Definitions of financial burden are overlapping with similarities, but also inconsistencies. Many studies have focused more on objective and operational definitions, than subjective and conceptual aspects. Regarding measures for financial burden, many studies have only used a few items. The financial burden is dependent on the illness trajectories and duration. By considering multidimensionality, we illustrate potential financial burden factors (objective, coping, and subjective). Although anticipation and expectations about future financial issues are important, patients and caregivers generally experience objective aspects of burden, followed by subjective impressions of burden. Coping skills likely reduce subjective burden. Based on the results, we redefine the financial burden among patients with life‐threatening illness and caregivers. (shrink)

Bioethics, Volume 36, Issue 7, Page 765-773, September 2022.

This is a patient in the relatively early stages of a serious chronic disease requiring ongoing vigilant management if acute complications are to be minimized. In today's healthcare system, we see...

This book exploits the power of phenomenological methods to access and describe lived moral experiences of pain and suffering for patients, their families and the wider community. Creating new fields of communication for patients, their family members and health professionals in shared decision making processes, this book builds on knowledge about suffering to help and guide correct action in preventing and relieving chronic pain and improving systems of care. It offers a new phenomenology for understanding moral experience in (...) serious illness and suffering, and its implication for policy, practice and research. A series of applied chapters, looking at individual experiences of suffering and care experiences, present some areas of ethical inquiry, including: pain and suffering maternal care ethics evaluation and moral deliberation about treatment options decision-making and moral agency end-of-life experiences of care. Exploring how moral phenomenology could provide fruitful alternatives to traditional frameworks in bioethics, this is an important addition to the literature. It will be of interest to scholars and students of bioethics and phenomenological methods in the health and human services. (shrink)

Background Health care professionals have to judge the appropriateness of treatment in critical care on a daily basis. There is general consensus that critical care interventions should not be performed when they are inappropriate. It is not yet clear which chances of survival are considered necessary or which risk for serious disabilities is acceptable in quantitative terms for different stakeholders to start intensive care treatment. Methods We performed an anonymous online survey in a random sample of 1,052 participants recruited via (...) email invitation and social media. Age, sex, nationality, education, professional involvement in health care, critical care medicine and treatment decisions in critical care medicine as well as personal experience with critical illness were assessed as potential influencing variables. Participants provided their opinion on the necessary chances of survival and the acceptable risk for serious disabilities to start a high-risk or uncomfortable therapy for themselves, relatives or for their patients on a scale of 0–100%. Results Answers ranged from 0 to 100% for all questions. A three-peak pattern with different distributions of the peaks was observed. Sex, education, being a health care professional, being involved in treatment decisions and religiosity influence these opinions. Male respondents and those with a university education would agree that a risky and uncomfortable treatment should be started even with a low chance of survival for themselves, relatives and patients. More respondents would choose a lower necessary chance of survival when deciding for patients compared to themselves or relatives to start a risky and uncomfortable treatment. On the other hand, the majority of respondents would accept only a low risk of severe disability for both themselves and their patients. Conclusion No cut-off can be identified for the necessary chances of survival or the acceptable risk of disability to help quantify the “inappropriateness” of critical care treatment. Sex and education are the strongest influencing factors on this opinion. The large variation in personal opinions, depending on demographic and personality variables and education needs to be considered in the communication between health care professionals and patients or surrogates. (shrink)

Respecting and encouraging autonomy in the elderly is basic to the practice of geriatrics. In this paper, we examine the practice of cardiopulmonary resuscitation (CPR) and "artificial" feeding in a geriatric unit in a general hospital subscribing to jewish orthodox religious principles, in which the sanctity of life is a fundamental ethical guideline. The literature on the administration of food and water in terminal stages of illness, including dementia, still shows division of opinion on the morality of withdrawing nutrition. We (...) uphold the principle that as long as feeding by naso-gastric (N-G) or percutaneous endoscopic gastrostomy (PEG) does not constitute undue danger or arouse serious opposition it should be given, without causing suffering to the patient. This is part of basic care, and the doctor has no mandate to withdraw this. The question of CPR still shows much discrepancy regarding elderly patients' wishes, and doctors' opinions about its worthwhileness, although up to 10 percent survive. Our geriatric patients rarely discuss the subject, but it is openly ventilated with families who ask about it, who are then involved in the decision-making, and the decision about CPR or "do-not-resuscitate" (DNR) is based on clinical and prognostic considerations. (shrink)

The aim of this study was to investigate factors associated with seriously ill patients’ preferences for their family and physicians making resuscitation decisions on their behalf. Using SUPPORT II data, the study revealed that, among 362 seriously ill patients who were experiencing pain, 277 (77%) answered that they would want their family and physicians to make resuscitation decisions for them instead of their own wishes being followed if they were to lose decision-making capacity. Even after controlling (...) for other variables, patients who preferred the option of undergoing cardiopulmonary resuscitation (CPR) in the future were twice as likely, and those who had had ventilator treatment were four-fifths less likely, to rely on their family and physicians than those who did not want CPR (odds ratio (OR)-2.28; 95% confidence interval (CI) 1.18-4.38) or those who had not received ventilator treatment (OR-0.23; 95% CI 0.06-0.90). Psychological variables (anxiety, quality of life, and depression), symptomatic variables (severity of pain and activities of daily living) and the existence of surrogates were not significantly associated with patients’ preferences for having their family and physicians make resuscitation decisions for them. Age was not a significant factor for predicting the decision-making role after controlling for other variables. (shrink)

OBJECTIVES: To measure the preference regarding disclosure of a serious diagnosis, and its determinants, of the Lebanese public. DESIGN AND SETTING: Non-random sample survey of 400 persons interviewed in health care facilities in Beirut in 1995. RESULTS: Forty-two per cent of respondents generally preferred truth not to be disclosed directly to patients. Preference for disclosure was associated with younger age, better education and tendency to rapport-building with physicians. There were no meaningful associations between place of residence (urban/rural), level of (...) religious practice, or religious affiliation, and preference for disclosure. CONCLUSIONS: Under one plausible interpretation, this survey suggests that the expectation for concealment will decrease as the advantage of knowledge in better coping with disease is understood by an increasingly better educated public, and that the Lebanese public will increasingly come to expect direct and full disclosure of serious diagnoses. (shrink)

Failure to follow prescribed treatment has devastating consequences for those who are seriously and persistently mentally ill. Nurses, therefore, try to get clients to take psychotropic medication on a long-term basis. The goal is either compliance or adherence. Although current nursing literature has abandoned the term compliance because of its implications of coercion, in psychiatric nursing practice with patients suffering from serious long-term mental illness compliance and adherence are in fact different goals. The ideal goal is adherence, which (...) requires the patient to be an active participant in the team. This goal is consistent with nurses’ ethical values, but for such patients this is frequently unrealistic. If the person is severely psychotic, treatment may be involuntary and the goal compliance. Psychiatric nurses participate in involuntary treatment and thus should acknowledge the ethical implications of compliance as a goal and not obscure the issue by calling compliance adherence. (shrink)

This essay argues that the Chinese Mental Health Act of 2013 is overly individualistic and fails to give proper moral weight to the role of Chinese families in directing the process of decision-making for hospitalizing and treating the mentally ill patients. We present three types of reactions within the medical community to the Act, each illustrated with a case and discussion. In the first two types of cases, we argue that these reactions are problematic either because they comply with (...) the law but undermine the patient’s interests by refusing the family’s request to have the patient hospitalized, or violate the law by hospitalizing patients in response to the real concerns of their families. In the third type of situation, psychiatrists inappropriately encourage families to produce evidence of the patient’s behavior that is harmful to self or others in order legally to commit the patient. Each of these problems, we conclude, should be tackled by supplementing Article 30 of the Act with the stipulation that a psychiatrist may authorize the involuntary hospitalization of a patient, who is not at risk of causing physical harm to self or others, with the consent of all major family members. Drawing on the deeply culturally embedded moral traditions of Confucian medical familism, this proposal would facilitate the proper treatment of a significant number of Chinese mentally ill patients under the care of their families. (shrink)

The aim of this study was to explore experiences of participation in treatment planning decisions from the perspective of patients recently treated for colorectal cancer. Ten patients were purposively selected and interviewed. Constant comparative analysis, the core concept of grounded theory, was used. The dimensions were developed and organized into the main theme of ‘compliant participation in serious decisions’, which was composed of the two variations: complying with participation; and complying without participation. Complying with participation was characterized by (...) feelings of self-confidence and self-competence and by open dialogue between the participants, significant others and the physician. Complying without participation was characterized by participants’ feelings of uncertainty and distress, and of being rushed into submitting to decisions without having time to reflect on the information provided or the opportunity to influence the treatment and care process. To participate builds on open and affirming dialogue, information and knowledge about the illness. Patient participation in treatment and care decision making is interpreted as a health promoting way of coping with illness. (shrink)

When seriously ill patients reach the end of the standard treatment trajectory for their condition, they may qualify for the use of unapproved, investigational drugs regulated via expanded access programs. In medical-ethical discourse, it is often argued that expanded access to investigational drugs raises ‘false hope’ among patients and is therefore undesirable. We set out to investigate what is meant by the false hope argument in this discourse. In this paper, we identify and analyze five versions of (...) the false hope argument which we call: (1) the limited chance at benefit argument, (2) the side effects outweighing benefits argument, (3) the opportunity costs argument, (4) the impossibility of making informed decisions argument, and (5) the difficulty of gaining access argument. We argue that the majority of these five versions do not provide normative ground for disqualifying patients’ hopes as false. Only when hope is rooted in a mistaken belief, for example, about the likelihood of benefits or chances on medical risks, or when hope is directed at something that cannot possibly be obtained, should it be considered false. If patients are adequately informed about their odds of obtaining medical benefit, however small, and about the risks associated with an investigational treatment, it is unjustified to consider patients’ hopes to be false, and hence, to deny them access to investigational drug based on that argument. (shrink)

Xenotransplant patient selection recommendations restrict clinical trial participation to seriously ill patients for whom alternative therapies are unavailable or who will likely die while waiting for an allotransplant. Despite a scholarly consensus that this is advisable, we propose to examine this restriction. We offer three lines of criticism: (1) The risk–benefit calculation may well be unfavorable for seriously ill patients and society; (2) the guidelines conflict with criteria for equitable patient selection; and (3) the selection of (...) seriously ill patients may compromise informed consent. We conclude by highlighting how the current guidance reveals a tension between the societal values of justice and beneficence. (shrink)

When seriously ill patients for whom existing treatments are inadequate are invited to participate in clinical trials that offer a new treatment, should those persons be considered “vulnerable”? And if so, what additional protections should they be accorded? This article attempts to provide some answers.

The definition of ‘patient’ is commonly taken for granted and considered as obvious, but the term is rather underconceptualised in the literature. In this paper, it will be argued that the criterion of suffering can be considered a sufficient criterion for a parent to be considered a secondary patient when their seriously ill child is receiving medical care (i.e. not necessarily the parents themselves) – these parents are sufferers in virtue of the suffering of others. The nature of parental (...) and child health and well-being is clearly relational and bidirectional, thus also a bidirectional and relational integration of parental and paediatric patient care is necessary. A genuine expansion of the concept ‘patient’ to parents, both practically and theoretically, can help to bring awareness to the closely intertwining, interacting and interdependent vulnerabilities of both parties, the potential conflicts of interests involved, and also to demand support and reduce hurdles, for example, in reimbursement by health insurers. Treating parents as patients will (1) help the affected child (the primary patient), as unhealthy and/or mentally unstable parents are likely to negatively influence a child's treatment and (2) prevent the parents (the secondary patients) from becoming primary patients themselves due to their suffering because of their child's illness. (shrink)

Embodied knowledge in chronic illness and injury When people experience chronic illness or serious injury, changes occur not just within their physical bodies but also in their embodiments, that is, how they view the world through their bodies. For such patients, dualistic (mind–body) notions of the body as object and the mind as subject can devalue experiences that are necessary for healing and for managing everyday problems related to their illness or injury. Nurses need to be able to guide (...) people with illness or injury to new levels of wellness, but may lack appropriate theoretical conceptualizations. Philosophies that underlie embodied knowledge — in particular, philosophies of Merleau‐Ponty and Polanyi — were explored yielding two new ways to understand the body. The body as ‘silent partner’ fosters an appreciation of the body's own subjectivity that can be enhanced in nursing care through sensitivity, listening, and creative coaching. Nurses can assist their patients to identify new and positive understandings of what their bodies mean to them after bodily changes. The body as ‘informant’ holds much promise for solving some of the everyday problems that people with chronic illness or injury experience. By using phenomenological and other naturalistic methods, researchers and patients can find clues to solving such problems, clues that are known through daily living but hidden beneath conscious awareness. As a result, some of the practical know‐how of the body as ‘informant’ can be transformed into testable nursing interventions. (shrink)

This article provides a systematic analysis of the proposal to use Covid‐19 vaccination status as a criterion for admission of patients with Covid‐19 to intensive care units (ICUs) under conditions of resource scarcity. The general consensus is that it is inappropriate to use vaccination status as a criterion because doing so would be unjust; many health systems, including the UK National Health Service, are based on the principle of equality of access to care. However, the analysis reveals that there (...) are several unique features of Covid vaccination status in the context of a pandemic that make this issue disanalogous to cases (such as lung cancer caused by smoking) discussed previously. First, there is equality in access to care at the point of vaccination; the unvaccinated refuse the offer of preventive care when they decline vaccination, weakening their claim to ongoing care if they become ill (this is qualitatively different from ‘poor lifestyle choices’ such as smoking). Second, the decision of one person to refuse vaccination substantially increases the risk that they will become seriously ill and need ICU care; the person who chooses not to get vaccinated thus potentially increases the pressure on intensive care bed provision, as well as increasing the risk that he or she will infect others who in turn might end up needing ICU care. Third, justice cuts both ways, and giving unvaccinated patients equal priority may itself be unjust when other patients have reduced their risk of ending up on the ICU by getting vaccinated. (shrink)

Caring for seriously ill and dying patients plays a key role in the patient-physician story. The emotional experience, while at times gratifying, can also be quite burdensome. In “The Inner Lives o...

The definition of ‘patient’ is commonly taken for granted and considered as obvious, but the term is rather underconceptualised in the literature. In this paper, it will be argued that the criterion of suffering can be considered a sufficient criterion for a parent to be considered a secondary patient when their seriously ill child is receiving medical care (i.e. not necessarily the parents themselves) – these parents are sufferers in virtue of the suffering of others. The nature of parental (...) and child health and well-being is clearly relational and bidirectional, thus also a bidirectional and relational integration of parental and paediatric patient care is necessary. A genuine expansion of the concept ‘patient’ to parents, both practically and theoretically, can help to bring awareness to the closely intertwining, interacting and interdependent vulnerabilities of both parties, the potential conflicts of interests involved, and also to demand support and reduce hurdles, for example, in reimbursement by health insurers. Treating parents as patients will (1) help the affected child (the primary patient), as unhealthy and/or mentally unstable parents are likely to negatively influence a child's treatment and (2) prevent the parents (the secondary patients) from becoming primary patients themselves due to their suffering because of their child's illness. (shrink)

The lived body has structures of ability built up over time through habit. Serious illness, injury, and incapacity can disrupt these capacities, and thereby, one’s relationship to the body, and to time itself. This paper focuses attention on a series of healing strategies individuals then employ on the “chessboard” of possibilities intrinsic to lived embodiment. This can include restoring past abilities (pointing to the future to recreate the past); and/or transforming one’s bodily structure or use-patterns, or the external environment, to (...) compensate. With many conditions, including progressive aging, no full rehabilitation is possible. Nevertheless, one can also seek consolation, richness, or hope by remembering the past; anticipating the future; or presencing, that is, living fully in the now. Insofar as past, present, and future are interwoven in one’s life experience, many also meet adversity by a life-story revision, constructing a new narrative to render events meaningful. Some also access a sense of transpersonal timelessness, whether through anticipation of an afterlife, or a sense of the eternal present. There is a literature on the adaptive coping mechanism used by the chronically ill, but with its diverse patient populations, methodologies, and categories, it has proved difficult to systematize. This article suggests that the structures of lived embodiment, as explored by phenomenology, provide a way to understand the modes of wholeness individuals access over time, and in relation to time—what is here termed chronic healing. (shrink)

Where a decision has been made to stop futile treatment of critically ill patients on an intensive care unit – what is termed withdrawal of treatment in the UK – yet no doctor is available to perform the actions of withdrawal, nurses may be called upon to perform key tasks. In this paper I present two moral justifications for this activity by offering answers to two major questions. One is to ask if it can be in patients' best (...) interests for nurses to be the key actors in withdrawal of life‐sustaining treatment. The other is to ask if there is any reason that the nursing profession should not undertake such tasks if this is so. Both these questions require the resolution of weighty moral and philosophical issues. Thus, while offering a serious attempt to provide moral justifications for nurses undertaking withdrawal, this paper also invites debate over both the aim of task division between nurses and doctors, and how we might decide what is in the best interests of patients. (shrink)

This volume attempts to show why ontology matters for a proper grasp of issues in bioethics. -/- Contemporary discussions on bioethics often focus on seeking solutions for a wide range of issues that revolve around persons. The issues in question are multi-layered, involving such diverse aspects as the metaphysical/ontological, personal, medical, moral, legal, cultural, social, political, religious, and environmental. In navigating through such a complex web of issues, it has been said that the central problems philosophers and bioethicists face are (...) ethical in nature. In this regard, biomedical sciences and technological breakthroughs take a leading role in terms of shaping the sorts of questions that give rise to ethical problems. For example, is it ethical to keep terminally ill patients alive on dialysis machines or artificial ventilators? Is it ethical to take someone’s vital organs upon death and transplant them into another person’s body without any prior consent from a deceased person? Reproductive techniques also raise complicated ethical issues involving in vitro fertilization, contraceptives, prenatal testing, abortions, and genetic enhancements. Moreover, biomedical issues raise ethical problems in regards to research on human subjects, stem cell research, and enhancement biotechnology. The beginning and end of life issues bring up their own complicated ethical conundrums involving, among other things, terminating life support and euthanasia. -/- This book approaches such complex bioethical questions by engaging in ground-level debates about the ontology of persons. This is a non-negotiable first step in taking steps forward in seeking a plausible solution(s) for the complex ethical problems in bioethics. Although the contributors in this book advance their arguments in their own ways, they all agree on one crucial methodological point: the importance of taking the ontology of persons for bioethics seriously. This is the spirit that brings the contributors of this book together as they seek to build their case(s) concerning the nature of persons. (shrink)

The Stoics considered that in order to die well, one must previously have lived and not merely existed, an assertion which will not be contested in this paper. The question raised here is whether an individual whose life expectancy is jeopardized by serious illness or whose life has not been lived to the ‘full’ for whatever reason should have to abandon all hope or, alternately, whether that life could still somehow be saved. One clear obstacle to achieving this stems from (...) moral character, given that moral character is an element which conditions an individual’s moral behaviour, as pointed out by Beauchamp and Childress and particularly Pellegrino and Thomasma. The transformation of moral character requires time and effort but the testimonies of patients who have given their lives a radical new direction upon being diagnosed with a serious illness seem to show the existence of a peculiar phenomenon of moral catharsis. In this paper we attempt to illustrate that this alleged phenomenon is not the result of a kind of cataleptic impression but rather the result of a dialectic and narrative process, during which a first hope of healing is dashed, unveiling a new sense in the illness. Its fulfillment provides the patient with a final hope. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:You Can't Say "No" to That!(A "Difficult Patient" Story)Ingrid BergAs a sequela of COVID-19, my rural Wisconsin hospital has been jam-packed for months with patients for whom we routinely provide care and many for whom we do not. An exodus of health care workers and other constraints have made the transfer of critically ill patients very difficult. In this disquieting "new-normal" of our work life, we routinely (...) must call bigger cities throughout our state to find beds for complex patients.So, it was not surprising when a young patient, an IV drug user in sepsis from a heart infection, was admitted to me in the middle of the night. In less disheartening times, before the pandemic, this patient would have been transferred promptly to the big-city hospital. Now, though, the possibility of finding an open bed is next to impossible. Resigned, I placed admission orders, continued antibiotics and fluids, and crossed my fingers. Then the unexpected happened: a bed opened up, and we could send her at once!The patient had a harsh heart murmur. It was likely that a "vegetation" was clinging to the valve, between the right upper and lower chambers of her heart. A vegetation is a clump of debris, such as platelets, clotting proteins, and bacteria that is a menace to the body. Her chest imaging looked like her infection had already spread to her lungs.A definitive diagnosis for endocarditis requires a special ultrasound with a probe that goes down through the esophagus, a procedure performed by cardiologists. It's a serious infection, one that requires weeks of IV antibiotics and is best monitored by infectious disease specialists. Sometimes, cardiothoracic surgeons are called upon to strip away the infection at the site, depending on how badly the valve has been slayed or the size of the vegetation. My only recommendation for a young, otherwise healthy patient in this scenario, is transfer.All of these reasons for transfer were lolling around in my tired head when the night-time [End Page 14] nursing supervisor approached me and said, "We have a problem." When the patient was updated about the transfer, she balked: "She says she is tired and refusing to go," the supervisor began. "She doesn't feel like getting into an ambulance in the middle of the night and she doesn't care if her condition is life-threatening. She knows we can't force her to go and she will only talk about it again in the morning."The cartoon version of myself at that moment had bugged-out eyes, a dropped jaw, fists tight and clenched at my sides, and steam coming out of my head. I can look past a patient's self-neglect, poor medication adherence, abysmal communication, alcohol and drug addiction, and other crimes. But saying no to a bed at a tertiary care facility? Unacceptable!I marched down the quiet hallway and into her room. She was lying on her side, facing the door, one IV in a thin arm. I was confident I could reason with her once I explained the scarcity of beds and the medical necessity of transfer. But she was having none of it. I was calm until I could no longer maintain my cool: "You can't give up this bed!""Maybe in the morning," she insisted, yawning. "But not now. I am tired and want to rest!""But there might not be a bed in the morning," I countered. "And your infection can be life-threatening." (This is true, but we both knew she wasn't dying at this very moment.)"I am not going anywhere!" She raised her voice and then closed her eyes.And she was right. I had no choice but to keep her. I could not kick her out of the hospital because she was making a poor choice, and I was frustrated for having to manage the fallout of that decision. Giving her antibiotics and fluid boluses to bolster her blood pressure was certainly within my scope of practice. And fretting. Fretting is always within my scope of practice; not that my scope of practice matters when all the big... (shrink)

Caring for seriously ill patients and their families during times of extreme stress is a privilege, but it can also bring much sadness and ethical turmoil for everyone involved, particularly at end of life. Patients and their families and the nurses and physicians who care for them are uniquely bonded together as they discuss, discern, and deliberate on some of the most heart-wrenching life and death decisions any patient, parent, family member, or partner can make. Shifting from (...) a curative mode of thinking is never easy, simple, or clear-cut. All of us share hopeful moments with our patients when we see, for example, an unexpected limb movement, a period of lucidity, or short-term physiological stability in... (shrink)

The autonomy of chronic patients in Iranian hospitals is challenged by impaired functioning resulting from chronic illness, a negative image in society, and effects related to hospitalization. Comprehensive interviews and observations of 34 patients, nurses, and physicians were performed to assess the autonomy of chronic patients in Iran. Conceptualization, constant comparison, and the combination of data resulted in the identification of 5 main categories related to autonomy: welcoming paternalism, self-expression, self-proof, shared decision making, and self-determination. Authority scrambling (...) was a central category describing chronic patients’ perceptions of their autonomy during hospitalization. These patients sought to maintain their independence despite serious threats to their autonomy. (shrink)

In this paper, I address the marginalization of Russian immigrant patients within the American medical system. I argue that their already vulnerable position as immigrants with serious illnesses or conditions is exacerbated by unfamiliar social, cultural, and psychological terrain. This complex situation calls for a revision of the clinician–patient model in favor of a more comprehensive approach that takes seriously their double marginalization and its effects. I claim that one such approach, narrative medicine, can begin to address their (...) marginalized status by attending to not only the symptoms of the body, but to the story of the illness experience. (shrink)

The COVID-19 pandemic has introduced new ethical challenges in the care of patients with serious psychiatric illness who require inpatient treatment and who may have beeen exposed to COVID-19 or have mild to moderate COVID-19 but refuse testing and adherence to infection prevention protocols. Such situations increase the risk of infection to other patients and staff on psychiatric inpatient units. We discuss medical and ethical considerations for navigating this dilemma and offer a set of policy recommendations.

In the 2000s, several psychiatrists cited the lack of relational disorders in the DSM-IV as one of the two most glaring gaps in psychiatric nosology, and campaigned for their inclusion in the DSM-5. This campaign failed, however, presumably in part due to serious “ontological concerns” haunting such disorders. Here, I offer a path to quell such ontological concerns, adding to previous conceptual work by Jerome Wakefield and Christian Perring. Specifically, I adduce reasons to think that collective disorders are compatible with (...) key metaphysical commitments of contemporary scientific psychiatry, and argue that if one accepts the existence of mental disorders in individuals as medical, then one has good reasons to accept the existence of collective disorders as medical. First, I outline how collective disorders are reconcilable with both the harmful dysfunction model of disorder and a denial of mind-body dualism. I then identify some potential weaknesses in the main pre-existing example of a collective disorder, offering my own examples as supplements. These examples’ medical plausibility is bolstered by: work in philosophy of biology on the generalized selected effects theory of function, and work in analytic philosophy of mind on collective mentality. Finally, after offering preliminary responses to the objection that the recognition of collective disorders may lead to an overpathologization of everyday life, I spell out ways in which this recognition may have empowering effects for some would-be patients; for example, by providing substance to the notion of a “sane response to an insane world.”. (shrink)

In the 2000s, several psychiatrists cited the lack of relational disorders (what I call “collective disorders”—disorders of groups rather than individuals) in the DSM-IV as one of the two most glaring gaps in psychiatric nosology, and campaigned for their inclusion in the DSM-5. This campaign failed, however, presumably in part due to serious “ontological concerns” haunting such disorders. Here, I offer a path to quell such ontological concerns, adding to previous conceptual work by Jerome Wakefield and Christian Perring. Specifically, I (...) adduce reasons to think that collective disorders are compatible with key metaphysical commitments of contemporary scientific psychiatry, and argue that if one accepts the existence of mental disorders in individuals as medical, then one has good reasons to accept the existence of collective disorders as medical. First, I outline how collective disorders are reconcilable with both the harmful dysfunction model of disorder and a denial of mind-body dualism. I then identify some potential weaknesses in the main pre-existing example of a collective disorder, offering my own examples as supplements. These examples’ medical plausibility is bolstered by: (1) work in philosophy of biology on the generalized selected effects theory of function (largely from Justin Garson), and (2) work in analytic philosophy of mind on collective mentality (largely from Bryce Huebner). Finally, after offering preliminary responses to the objection that the recognition of collective disorders may lead to an overpathologization of everyday life, I spell out ways in which this recognition may have empowering effects for some would-be patients; for example, by providing substance to the notion of a “sane response to an insane world.”. (shrink)