Here we present the personal perspectives of two authors on the important and unfortunately frequent scenario of ambulance clinicians facing a deceased individual and family members who do not wish them to attempt cardiopulmonary resuscitation. We examine the professional guidance and the protection provided to clinicians, which is not matched by guidance to protect family members. We look at the legal framework in which these scenarios are taking place, and the ethical issues which are presented. We (...) consider the interaction between ethics, clinical practice and the law, and offer suggested changes to policy and guidance which we believe will protect ambulance clinicians, relatives and the patient. (shrink)

Family members can provide crucial support to individuals participating in clinical trials. In research on the “newest frontier” of Deep Brain Stimulation (DBS)—the use of DBS for psychiatric conditions—family member support is frequently listed as a criterion for trial enrollment. Despite the significance of family members, qualitative ethics research on DBS for psychiatric conditions has focused almost exclusively on the perspectives and experiences of DBS recipients. This qualitative study is one of the first to include (...) both DBS recipients and their family members as interview participants. Using dyadic thematic analysis—an approach that takes both the individuals and the relationship as units of analyses—this study analyzes the complex ways in which family relationships can affect DBS trial participation, and how DBS trial participation in turn influences family relationships. Based on these findings, we propose ways to improve study designs to better take family relationships into account, and better support family members in taking on the complex, essential roles that they play in DBS trials for psychiatric conditions. (shrink)

Objectives: Childhood cancer is a life-threatening disease that poses significant challenges to the life of the diagnosed child and his/her family members. Based on the ABCX-model, the aim of the current study was to explore the association between family functioning, cancer appraisal and the individual adjustment of patients, parents and siblings. Method: Participants were 60 children with leukemia or non-Hodgkin lymphoma, 172 parents and 78 siblings (115 families). Time since diagnosis varied from zero to 33 months. Patients, (...) parents and siblings completed the Family Environment Scale, Perceived Stress Scale, Situation-Specific Emotional Reactions Questionnaire and Pediatric Quality of Life Inventory/Maudsley Marital Questionnaire. Results: Family functioning and the appraisal of the cancer diagnosis proved to be related to patients’, parents’ and siblings’ cancer-related emotions and quality of life post-diagnosis. In addition, family members differed in their perception of some family functioning domains, the appraisal of the cancer diagnosis, positive feelings and quality of life. Discussion: Our findings led to the conclusion that family functioning and the appraisal of the cancer diagnosis are important for the individual adjustment of patients, parents and siblings when facing a diagnosis of cancer in the child. Differences across members within one family speak to the need of screening all family members and intervening at the level of the family unit. (shrink)

The paper builds on the stakeholder salience framework and applies a social identity approach to explain family firm dynamics and how these could impact on family firm governance and ethics. In particular, we consider the family as the main stakeholder for family firms and we refer to the recent approaches to stakeholder theory based on ‘names-and-faces’ and on social identity to focus on family members at the individual and organizational level. Family businesses offer (...) an opportunity to study stakeholder salience in settings with multiple logics. Our paper acknowledges how the attributes of legitimacy, power and status, for family business members, can derive from three different institutional settings (family, business and local community) and how these attributes are assigned and gained by family members on the basis of the stakes they put (or could put) on the business. From the analysis of these dynamics specific ethical considerations emerge. (shrink)

If a hereditary predisposition to colorectal cancer or breast cancer is diagnosed, most guidelines state that clinical geneticists should request index patients to inform their at-risk relatives about the existence of this condition in their family, thus enabling them to consider presymptomatic genetic testing. Those identified as mutation carriers can undertake strategies to reduce their risk of developing the disease or to facilitate early diagnosis. This procedure of informing relatives through the index patient has been criticised, as it results (...) in relatively few requests for genetic testing, conceivably because a certain number of relatives remain uninformed. This pilot study explored attitudes toward informing family members and relevant practices among clinical geneticists. In general, clinical geneticists consider it to be in the interests of family members to be informed and acknowledge that this goal is not accomplished by current procedures. The reasons given for maintaining present practices despite this include clinical ‘mores’, uncertainty about the legal right of doctors to inform family members themselves, and, importantly, a lack of resources. We discuss these reasons from an ethical point of view and conclude that they are partly uninformed and inconsistent. If informing relatives is considered to be in their best interests, clinical geneticists should consider informing relatives themselves. In the common situation in which index patients do not object to informing relatives, no legal obstacles prevent geneticists from doing so. An evaluation of these findings among professionals may lead to a more active approach in clinical practice. (shrink)

We describe and analyze 13 cases handled by our ethics consultation service (ECS) in which families requested continuation of physiological support for loved ones after death by neurological criteria (DNC) had been declared. These ethics consultations took place between 2005 and 2013. Patients’ ages ranged from 14 to 85. Continued mechanical ventilation was the focal intervention sought by all families. The ECS’s advice and recommendations generally promoted “reasonable accommodation” of the requests, balancing compassion for grieving families with other ethical and (...) moral concerns such as stewardship of resources, professional integrity, and moral distress. In cases we characterized as finitegoal accommodation, a “reasonable accommodation” strategy proved effective in balancing stakeholders’ interests and goals, enabling steady progress toward resolution. When a family objected outright to a declaration of DNC and asked for an indefinite accommodation, the “reasonable accommodation” approach offered clinicians little practical direction, and resolution required definitive action by either the family or the clinical team. Based on our analysis and reflections on these 13 cases, we propose ethically justified and practical guidelines to assist healthcare professionals, administrators, and ECSs faced with similar cases. (shrink)

Purpose Although surrogate decision-making is prevalent in intensive care units and concerns with decision quality are well documented, little is known about how clinicians help family members understand the surrogate role. We investigated whether and how clinicians provide normative guidance to families regarding how to function as a surrogate. Subjects and methods We audiorecorded and transcribed 73 ICU family conferences in which clinicians anticipated discussing goals of care for incapacitated patients at high risk of death. We developed (...) and applied a coding framework to identify normative statements by clinicians regarding what considerations should guide surrogates’ decisions, including whether clinicians explained one or more of Buchanan and Brock’s three standard principles of SDM to family members. Results Clinicians made at least one statement about how to perform the surrogate role in 24 conferences ). We observed three general types of normative guidance provided to surrogates, with some conferences containing more than one type of guidance: counselling about one or more standard principles of SDM ; counselling surrogates to make decisions centred on the patient as a person, without specifying how to accomplish that ; and counselling surrogates to make decisions based on the family’s values. Conclusions Clinicians did not provide normative guidance about the surrogate role in two-thirds of family conferences for incapacitated patients at high risk for death. When they did, clinicians’ guidance was often incomplete and sometimes conflicted with standard principles of SDM. Future work is needed to understand whether providing explicit guidance on how to perform the surrogate role improves decision-making or mitigates surrogates’ psychological distress. (shrink)

Purpose Although surrogate decision-making is prevalent in intensive care units and concerns with decision quality are well documented, little is known about how clinicians help family members understand the surrogate role. We investigated whether and how clinicians provide normative guidance to families regarding how to function as a surrogate. Subjects and methods We audiorecorded and transcribed 73 ICU family conferences in which clinicians anticipated discussing goals of care for incapacitated patients at high risk of death. We developed (...) and applied a coding framework to identify normative statements by clinicians regarding what considerations should guide surrogates’ decisions, including whether clinicians explained one or more of Buchanan and Brock’s three standard principles of SDM to family members. Results Clinicians made at least one statement about how to perform the surrogate role in 24 conferences ). We observed three general types of normative guidance provided to surrogates, with some conferences containing more than one type of guidance: counselling about one or more standard principles of SDM ; counselling surrogates to make decisions centred on the patient as a person, without specifying how to accomplish that ; and counselling surrogates to make decisions based on the family’s values. Conclusions Clinicians did not provide normative guidance about the surrogate role in two-thirds of family conferences for incapacitated patients at high risk for death. When they did, clinicians’ guidance was often incomplete and sometimes conflicted with standard principles of SDM. Future work is needed to understand whether providing explicit guidance on how to perform the surrogate role improves decision-making or mitigates surrogates’ psychological distress. (shrink)

Background Little is known about communication between patients, families, and healthcare providers regarding ethical concerns that patients and families experience in the course of illness and medical care. To address this gap in the literature, we surveyed patients and family members to learn about their ethical concerns and the extent to which they discussed them with their healthcare providers. Methods We surveyed adult, English-speaking patients and family members receiving inpatient care in five hospitals in the Washington (...) DC-Baltimore metropolitan area from July 2017 to March 2020. Descriptive statistics were used to determine the frequency, comfortableness, and helpfulness of discussions regarding ethical concerns experienced when sick or receiving medical care. Univariable and multivariable stepwise logistic regression models were used to identify associations between healthcare provider and respondent characteristics and attitudes and (1) the likelihood of speaking to a healthcare provider about their ethical concern and (2) their level of comfort during these discussions. Results Of 468 respondents who experienced ethical issues, 299 (64%) reported discussing the situation with a member of their healthcare team; 74% (197/265) of respondents who had such a discussion found the discussion comfortable, and 77% (176/230) of respondents found the discussion helpful. To make discussions more comfortable and helpful, respondents proposed suggestions in open-ended responses involving (1) content and quality of communication; (2) positive healthcare provider qualities such as empathy, open-mindedness, knowledge, honesty, and trustworthiness; and (3) other contextual factors including having adequate time and available resources. Conclusions Patients and families often have ethical concerns that they discuss with clinicians, and they want clinicians to be routinely receptive and attentive to such discussions. (shrink)

This ‘story from the field’ emerges from qualitative research conducted with relatives of patients admitted to intensive care. A disturbing feature of researching the needs of family members of critically ill patients is the intense emotion that is often generated during the course of interviewing. For some the opportunity to talk about the experience of having a loved one in an intensive care unit was therapeutic; for others it meant anguish and despair as they relived the event that (...) resulted in a life‐threatening illness. Despite being a reasonably experienced educator and critical care nurse, I was unprepared for the intensity of feelings shown by many of the participants. I found that exposure to this kind of suffering was emotionally draining, experiencing the various roles of confidante, nurse, counsellor and researcher. It became important to share my thoughts and feelings and unwind with an independent friend and colleague as a way of debriefing. Methodological and ethical issues that arose included: generating a situation that potentially required therapeutic intervention; the impact on the ‘purity’ of data of becoming emotionally enmeshed; and the level of investigator preparedness when researching sensitive topics. The issue of walking away from an intensely emotional and intimate interview often leaves one with a sense of ‘unfinished business’. (shrink)

Background When a patient commits suicide while hospitalized in the psychiatric ward, the mental healthcare professionals (MHCPs) who have had the patient in their care encounter the family members immediately following the suicide. Professionals who encounter the bereaved in this first critical phase may have a significant impact on the grieving process. By providing ethically responsible and professionally competent care, they have the opportunity to influence what can alleviate and reduce suffering and promote health in a longer perspective. (...) Aim The aim of this study is to investigate MHCPs’ experiences in the encounter with family members who has been bereaved by suicide. Methods Data material consists of text from in-depth interviews with six MHCPs belonging to a total of five different psychiatric units in two hospitals. The findings have emerged through analysis using a hermeneutical approach based on Gadamer’s philosophical hermeneutics. Ethical considerations The study was approved by the Ombudsman for Privacy of the Norwegian Social Science Data Services and is based on informed consent and confidentiality. Findings Three themes emerged: Confirming the suffering. Creating encounter through dialogue. Providing consolation and reconciliation. Findings illuminate how MHCPs understand their responsibilities and how they act in the encounter with the bereaved following suicide. Conclusion The participants appear to be led by the responsibility that grows through witnessing the suffering of the bereaved. Encountering the family member’s aggression and threats against staff members is an ethical challenge to the professional’s ability to confirm the bereaved, create dialogue and provide consolation and reconciliation at the start of their grieving process. MHCPs need to be aware of the different reactions and needs of family members following suicide. More research is needed about how to provide sensitive and flexible care in ways that can be perceived as helpful for those left behind. (shrink)

The goal of this article is to describe the new experiences that close female family members of disappeared persons have after the enforced disappearance. These relatives experience rupture with their pre-disappearance lives. Their everyday routines cease and the search for the disappeared person takes over. Some relatives experience impoverishment and many lose their children or spouse to emigration. Parts or all of their extended family cut off ties, friendships end, and some neighbors avoid them. A local humanitarian (...) or human rights organization and an association of relatives of disappeared persons come to occupy a central place in relatives’ lives and become “like a second family.” Focusing on enforced disappearance during the Pinochet dictatorship in Chile, this research is based on interviews with relatives of people who disappeared, on a year’s participant observation with a group of these relatives, and on the examination of relatives’ denunciatory art. (shrink)

The disclosure of information that identifies deceased organ donors and/or organ transplant recipients by organ donation agencies and transplant centres is regulated in Australia by state and territory legislation, yet a significant number of donor family members and transplant recipients independently establish contact with each other. To describe and synthesize Australian laws and guidelines on the disclosure of identifying information. Legislation and guidelines relevant to organ donation and transplantation were obtained following a search of government and DonateLife network (...) websites. Information about the regulation of identity disclosure was extracted and synthesised using a process guided by Walt and Gilson’s (1994) policy analysis framework. Nineteen documents were examined. Six guidelines refer to and were consistent with current legislation. Four documents did not address identity disclosure. All jurisdictions prohibit healthcare professionals from disclosing identifying information. In three states, the prohibition extends to all members of the public including donor family members and transplant recipients. Restrictions on identity disclosure have implications for public promotion of donation and transplantation where sharing of stories and images of organ donors and transplant recipients is common. Further research is required to understand the perspective of donor family members, transplant recipients, and healthcare professionals impacted by the current laws. (shrink)

Patients and family members (N = 671) were surveyed in five Mid-Atlantic U.S. hospitals to ascertain the number and kinds of ethical concerns they are presently experiencing or have previously experienced while being sick or receiving medical care. Seventy percent of participants had at least one (range 0–14) type of ethical concern or question. The most commonly experienced concerns pertained to being unsure how to plan ahead or complete an advance directive (29.4%), being unsure whether someone in the (...) family was able to make their own decisions (29.2%), deciding about limiting life-sustaining treatments (28.6%), wondering about disclosing personal medical information to others in the family (26.4%) and not being sure whether to undergo treatment because of cost (26.2%). Most were interested to some degree in getting help from ethics consultants in the future (76.6%). Given this prevalence, common concerns might usefully be addressed systematically, rather than exclusively on a case-by-case basis. (shrink)

Patient-and-family-centered care (PFCC) is critical in end-of-life (EOL) settings. PFCC serves to develop and implement patient care plans within the context of unique family situations. Key components of PFCC include collaboration and communication among patients, family members and healthcare professionals (HCP). Ethical challenges arise when the burdens (e.g., economic, psychosocial, physical) of family members and significant others do not align with patients’ wishes. This study aims to describe the concept of vulnerability and the ethical (...) challenges faced by HCPs in these circumstances. Further, it assesses the contribution of clinical ethics consultation (CEC) in assisting HCPs to face these difficult ethical conundrums. Two clinical cases are analyzed using the Circle Method of CEC. The first regards the difficulty faced by the doctor in justifying treatments previously agreed upon between the patient and his/her friends. The second regards the patient’s concern about being a burden on their family. Family burdens in EOL settings challenge PFCC in that patient autonomy may be disregarded. This compromises shared decision-making between the patient, family and HCPs as a core component of PFCC. In their ability to promote a collaborative approach, CECs may assist in the successful implementation of PFCC. (shrink)

FEX A, FLENSNER G, EK A‐C and SÖDERHAMN O. Nursing Inquiry 2011; 18: 336–347 Living with an adult family member using advanced medical technology at homeAn increased number of chronically ill adults perform self‐care while using different sorts of advanced medical technology at home. This hermeneutical study aimed to gain a deeper understanding of the meaning of living with an adult family member using advanced medical technology at home. Eleven next of kin to adults performing self‐care at home, (...) either using long‐term oxygen from a cylinder or ventilator, or performing peritoneal or haemodialysis, were interviewed. The qualitative interviews were analysed using a Gadamerian methodology. The main interpretation explained the meaning as rhythmical patterns of connectedness versus separation, and of sorrow versus reconciliation. Dependence on others was shown in the need for support from healthcare professionals and significant others. In conclusion, next of kin took considerable responsibility for dependent‐care. All next of kin were positive to the idea of bringing the technology home, even though their own needs receded into the background, while focusing on the best for the patient. The results were discussed in relation to dependent‐care and transition, which may have an influence on the self‐care of next of kin and patients. The study revealed a need for further nursing attention to next of kin in this context. (shrink)

Volume 20, Issue 6, June 2020, Page 80-82.

The collagen family of extracellular matrix proteins has played a fundamental role in the evolution of multicellular animals. At the present, 28 triple helical proteins have been named as collagens and they can be divided into several subgroups based on their structural and functional properties. In tissues, the cells are anchored to collagenous structures. Often the interaction is indirect and mediated by matrix glycoproteins, but cells also express receptors, which have the ability to directly bind to the triple helical (...) domains in collagens. Some receptors bind to sites that are abundant in all collagens. However, increasing evidence indicates that the coevolution of collagens and cell adhesion mechanisms has given rise to receptors that bind to specific motifs in collagens. These receptors may also recognize the different members of the large collagen family in a selective manner. This review summarizes the present knowledge about the properties of collagen subtypes as cell adhesion proteins. BioEssays 29:1001–1010, 2007. © 2007 Wiley Periodicals, Inc. (shrink)

This case explores the ethical landscape around recontacting a subject's relatives to return genetic research results when the informed consent form signed by the original cohort of subjects is silent on whether investigators may share new information with the research subject's family. As a result of rapid advances in genetic technology, methods to identify genetic markers can mature during the life course of a study. In this case, the investigators identified the genetic mutation responsible for the disorder after a (...) number of their original subjects had died. The researchers now have the ability to inform relatives of the subject about their risk of developing the same disease. Mark Rothstein, JD, from the University of Louisville School of Medicine, provides an overview of the medical/scientific, legal, and ethical issues underlying this case. Lauren Milner, PhD, and colleagues at Stanford University explore how the relationship between researcher and subject affect this debate. Seema Shah, JD, and colleagues at the National Institutes of Health and University of California, Los Angeles discuss whether and how requirements of the duty to warn are applicable in this case. (shrink)

Artificial intelligence (AI) technologies in medicine are gradually changing biomedical research and patient care. High expectations and promises from novel AI applications aiming to positively impact society raise new ethical considerations for patients and caregivers who use these technologies. Based on a qualitative content analysis of semi-structured interviews and focus groups with healthcare professionals (HCPs), patients, and family members of patients with Parkinson’s Disease (PD), the present study investigates participant views on the comparative benefits and problems of using (...) human versus AI predictive computer vision health monitoring, as well as participants’ ethical concerns regarding these technologies. Participants presumed that AI monitoring would enhance information sharing and treatment, but voiced concerns about data ownership, data protection, commercialization of patient data, and privacy at home. They highlighted that privacy issues at home and data security issues are often linked and should be investigated together. Findings may help technologists, HCPs, and policymakers determine how to incorporate stakeholders’ intersecting but divergent concerns into developing and implementing AI PD monitoring tools. (shrink)

Laws in China relating to HIV disclosure are inconsistent. After a patient has tested HIV‐positive, service providers struggle to decide who should be informed first: patients, family members, or both. To understand service providers' attitudes and practices regarding the HIV notification process in China, 1101 service providers from a southwestern province of China were surveyed. Opinions were gathered from providers at five different levels of health care facilities (provincial, city, county, township and village). A mixed methods approach was (...) used to analyze perceptions of informing family members of a patient's HIV status. Quantitative analysis was used to examine whether providers held a favorable attitude toward notifying family members first and qualitative analysis was used to explore the reasons and consequences of notifying family members first. Nearly half of service providers felt family members should be informed of a patient's HIV status first. Providers who were older, had contact with HIV patients, or had less medical education were more likely to agree with a family‐first notification practice. Psychological pressure, concern about protecting family members, the need for family support, and consideration for local regulations were cited as the main reasons for this practice. There is an immediate need to re‐examine HIV notification policies so that there are consistent guidelines and procedures for providers throughout China. (shrink)

Platforms for sharing genomic and phenotype data have been developed to promote genomic research, while maximizing the utility of existing datasets and minimizing the burden on participants. The value of genomic analysis of trios or family members has increased, especially in rare diseases and cancers. This article aims to argue the necessity of protection when sharing data from both patients and family members. Sharing patients’ and family members’ data collectively raises an ethical tension between (...) the value of datasets and the rights of participants, and increases the risk of re-identification. However, current data-sharing policies have no specific safeguards or provisions for familial data sharing. A quantitative survey conducted on 10,881 general adults in Japan indicated that they expected stronger protection mechanisms when their family members’ clinical and/or genomic data were shared together, as compared to when only their data were shared. A framework that respects decision-making and the right of withdrawal of participants, including family members, along with ensuring usefulness and security of data is needed. To enable this, we propose recommendations on ancillary safeguards for familial data sharing according to the stakeholders, namely, initial researchers, genomic researchers, data submitters, database operators, institutional review boards, and the public and participants. Families have played significant roles in genetic research, and its value is re-illuminated in the era of genomic medicine. It is important to make progress in data sharing while simultaneously protecting the privacy and interests of patients and families, and return its benefits to them. (shrink)

Background: Genomic analysis may reveal both primary and secondary findings with direct relevance to the health of probands’ biological relatives. Researchers question their obligations to return findings not only to participants but also to family members. Given the social value of privacy protection, should researchers offer a proband’s results to family members, including after the proband’s death? Methods: Preferences were elicited using interviews and a survey. Respondents included probands from two pancreatic cancer research resources, plus biological (...) and nonbiological family members. Hypothetical scenarios based on actual research findings from the two cancer research resources were presented; participants were asked return of results preferences and justifications. Interview transcripts were coded and analyzed; survey data were analyzed descriptively. Results: Fifty-one individuals (17 probands, 21 biological relatives, 13 spouses/partners) were interviewed. Subsequently, a mailed survey was returned by 464 probands, 1,040 biological family members, and 399 spouses/partners. This analysis highlights the interviews, augmented by survey findings. Probands and family members attribute great predictive power and lifesaving potential to genomic information. A majority hold that a proband’s genomic results relevant to family members’ health ought to be offered. While informants endorse each individual’s choice whether to learn results, most express a strong moral responsibility to know and to share, particularly with the younger generation. Most have few concerns about sharing genetic information within the family; rather, their concerns focus on the health consequences of not sharing. Conclusions: Although additional studies in diverse populations are needed, policies governing return of genomic results should consider how families understand genomic data, how they value confidentiality within the family, and whether they endorse an ethics of sharing. A focus on respect for individual privacy—without attention to how the broad social and cultural context shapes preferences within families—cannot be the sole foundation of policy. (shrink)

Oral history makes a critical contribution in articulating the perspectives of people often overlooked in histories written from the standpoint of dominating class, gender, ethnic or professional groups. Using three interrelated approaches — life stories, oral history, and narrative analysis — this paper analyzes family responses to psychiatric care and mental illness in oral history interviews with family members who experienced mental illness themselves or within their family between 1930 and 1975. Interviews with three family (...) members in Alberta, Canada are the primary focus. These stories provide an important avenue to understand the meaning and transformations of mental health‐care from the point of view of families. Family members’ stories reveal contradictory responses to the dominant cultural discourse. Using a performative framework of interpretation, the narratives reveal a complex interplay between medical, social and cultural conceptions of mental illness, deepening our understanding of its meaning. The history of mental health‐care can be substantially enriched by the analysis of family members’ stories, not only revealing the constructed nature of mental illness, but also illustrating the family as a mediating context in which the meaning of mental illness is negotiated. (shrink)

Patient families sometimes ask health professionals, ‘What would you do if this were your family member?’ The purpose of this paper is to examine appropriate responses to this Question. Health professionals may say, ‘It all depends on the patient's wishes’, or ‘I don't know what is best, because my family is different from yours in many ways’. Some may believe that the most favourable course of action is the same regardless of who the patient is and explain this (...) to the patient's family, while others may refuse to answer the Question saying it is personal, or argue that such a Question should neither be asked nor answered because it is unreasonable and unprofessional to do so. We believe that, in principle, health professionals should give an honest answer as to what they would do if the patient was their family member, recognising and empathising with the fact that the patient's family is in a difficult and vulnerable position, and that their circumstances forced them to ask such a Question. Moreover, personal and emotional views of health professionals regarding treatment options may help the patient's family make important decisions. An honest answer will help strengthen the trusting relationship between health professionals and the patient's family and support their decision-making. (shrink)

Background and AimsEnd-of-life discussions can be difficult for seriously ill adolescents and young adults. Researchers aimed to determine whether completing Voicing My CHOiCES —a research-informed advance care planning guide—increased communication with family, friends, or health care providers, and to evaluate the experience of those with whom VMC was shared.MethodsFamily, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, conversation quality, and (...) whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis.ResultsOne-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family and friends reported a positive change in their relationship with the AYA. Participant descriptions of the experience fell into five themes: positive experience, difficult experience, appreciated a guide to facilitate discussion, provided relief, and created worry/anxiety. Only 1 HCP noted a treatment change. Family, friends, and HCP did not think the AYA would have discussed EoL preferences without completing VMC.ConclusionsVMC has potential to enhance communication about ACP between AYA and their family and friends, though less frequently with HCPs. Participants reported a positive change in their relationship with the AYA after discussing VMC, and described experiencing the conversation as favorable, even when also emotionally difficult. (shrink)

Objective: The COVID-19 pandemic is negatively impacting the mental health of COVID-19 patients and family members. Given the restrictions limiting in person contact to reduce the spread of the virus, a digital approach is needed to tackle the psychological aftermath of the pandemic. We present the development of a brief remote psychotherapy program for COVID-19 patients and/or their relatives.Methods: We first reviewed the literature on psychotherapeutic interventions for COVID-19 related symptoms. Based on this evidence, we leveraged ongoing clinical (...) experiences with COVID-19 survivors and family members to design an intervention model that could be disseminated and integrated into the workflow of the mental health system.Results: This 8-session model –inspired by constructivist and hermeneutic-phenomenological therapies– serves COVID-19 patients during hospitalization, remission and recovery. This model can also be delivered to people dealing with the COVID-19 hospitalization/discharge of a family member, or the loss of a family member due to COVID-19.Conclusion: We described a remote psychotherapeutic approach to tackle the COVID-19 pandemic psychological aftermath. To date, the approach seems feasible and highly customizable to patients’ needs. Studies are underway to test its preliminary efficacy. Once proven efficacious, this treatment model could provide a blueprint for future tele-psychology wide-scale interventions. (shrink)

This study explores nurses' experiences of workplace conflict with patients and their family members, how it differs by ethnic/racial identity, and highlights the coping strategies engaged to lessen these conflicts. Using a qualitative research design, this study draws on phenomenology and in‐depth interviews of 66 registered nurses and registered practical nurses from multiple sites in two Canadian cities to explore the experiences of nurses with multiple marginalized identities in relation to nurse–patient and nurse–patient's family member conflicts in (...) direct care practice. The results show that horizontal conflicts, especially, ones involving nurses, patients, and their family members are quite pervasive in the nursing profession. Direct care nurses, especially, ethnic minorities relative to majority groups experience excessive physical assaults, verbal aggressive behaviors, racial stereotyping and discrimination, and sexual harassment from patients and patients' family members. Institutional support through policies and practices designed to de‐escalate aggressive behavior from patients and their family members were identified as important support systems. We conclude that policies aimed at creating a safe and strong health‐care system call for holding patients and th'eir family members legally responsible for uncivil and aggressive behavior against caregivers. (shrink)

Objective: To investigate the prevalence of and risk factors associated with mental health symptoms in psychiatric outpatients and their family members in China during the COVID-19 pandemic.Methods: This cross-sectional, survey-based, region-stratified study collected demographic data and mental health measurements for depression, anxiety and acute stress from 269 psychiatric patients and 231 family members in the Second Xiangya Hospital in China from April 27, 2020 to May 8, 2020. Binary logistic regression analysis was performed to identify risk (...) factors associated with mental health outcomes.Result: The results of this survey revealed that symptoms of depression, anxiety, and acute stress were highly prevalent symptoms in the psychiatric patient group. Respondents who were female, unmarried or highly educated were significantly more likely to have the above symptoms. In the family member group, more than half of them felt that the burden of nursing had increased during the epidemic. Subjects with a high degree of burden of care were significantly more likely to exhibit the above mental health symptoms, while females were significantly more likely to have acute stress.Conclusions: The results of this survey revealed a high prevalence of mental health disorder symptoms among psychiatric patients and an increased burden of nursing among their family members after the COVID-19 outbreak in China. Understanding the risk factors in those particular groups of people help improve the public health service system for mental health problems during public health events. For further study, exploration of the needs of mental health services and dynamic change tracking will be needed. (shrink)

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported (...) decision-making. Thirty-six interviews were undertaken with fifty-seven participants across three states in Australia. Interpretative Phenomenological Analysis was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants’ experiences with decision-making: “the person in relationship over time” and “maintaining involvement.” Participant views on the practical issues associated with supported decision-making are addressed under the themes of “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” While participants endorsed the principles of supported decision-making as part of their overarching strategy of “maintaining involvement” in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual “constraints on decision-making” also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a “spectrum approach” to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population. (shrink)

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported (...) decision-making. Thirty-six interviews were undertaken with fifty-seven participants across three states in Australia. Interpretative Phenomenological Analysis was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants’ experiences with decision-making: “the person in relationship over time” and “maintaining involvement.” Participant views on the practical issues associated with supported decision-making are addressed under the themes of “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” While participants endorsed the principles of supported decision-making as part of their overarching strategy of “maintaining involvement” in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual “constraints on decision-making” also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a “spectrum approach” to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population. (shrink)

Laws in China relating to HIV disclosure are inconsistent. After a patient has tested HIV-positive, service providers struggle to dec.

Negative prognostic communication is often delayed in intensive care units, which limits time for families to prepare for end‐of‐life. This descriptive study, informed by ethnographic methods, was focused on exploring critical care physician communication of negative prognoses to families and identifying timing influences. Prognostic communication of critical care physicians to nurses and family members was observed and physicians and family members were interviewed. Physician perception of prognostic certainty, based on an accumulation of empirical data, and the (...) perceived need for decision‐making, drove the timing of prognostic communication, rather than family needs. Although prognoses were initially identified using intuitive knowledge for patients in one of the six identified prognostic categories, utilizing decision‐making to drive prognostic communication resulted in delayed prognostic communication to families until end‐of‐life (EOL) decisions could be justified with empirical data. Providers will better meet the needs of families who desire earlier prognostic information by separating prognostic communication from decision‐making and communicating the possibility of a poor prognosis based on intuitive knowledge, while acknowledging the uncertainty inherent in prognostication. This sets the stage for later prognostic discussions focused on EOL decisions, including limiting or withdrawing treatment, which can be timed when empirical data substantiate intuitive prognoses. This allows additional time for families to anticipate and prepare for end‐of‐life decision‐making. (shrink)

Alzheimer’s disease is a very common, progressive and still incurable disease. Future possibilities for its cure lie in the promotion of research that will increase our knowledge of the disorder’s causes and lead to the discovery of effective remedies. Such research will necessarily involve individuals suffering from Alzheimer’s disease. This raises the controversial issue of whether patients with Alzheimer’s disease are competent to give their consent for research participation.

Recent law and ethics literature has been inundated with recommendations of the "best interests" criterion as the appropriate guide for neonatal and maternal-fetal decision-making. Increasingly, however, its adequacy is being questioned. In Chapter 1, I survey the arguments of "best interests" defenders and critics and suggest one problem is that the "best interests" criterion has yet to be subjected to a systematic conceptual and ethical analysis. In Chapter 2, therefore, I conduct such an analysis to evaluate more systematically its appropriateness (...) as a decision-making guide in neonatal and maternal-fetal medicine, concluding that the "best interests" criterion cannot assist us in seeing and addressing all that is at stake in neonatal and maternal-fetal decision-making because it excludes any consideration of the "interdependent" and other interests of family members. Therefore, I suggest that an ethical criterion or set of criteria which can explicitly consider and adequately balance the interests of infants or fetuses and family members would be a more helpful guide for neonatal and maternal-fetal decision-making. ;In Chapters 3-7, I attempt to move beyond the "best interests" criterion, drawing on fieldwork I conducted in the United States, Sweden, and India to point out some conceptual and normative gaps to be addressed in the development of a more adequate guide for neonatal and maternal-fetal decision-making. In Chapter 3, I describe this fieldwork and explain its purpose as illustrating the clinical ethical strategies employed in these countries to balance the interests of various parties in actual decision-making. In Chapters 4-6, I describe these strategies. Finally, in Chapter 7, I point out some conceptual and normative gaps in these decision-making strategies, noting that these gaps have also been unaddressed by the "best interests" critics reviewed in Chapters 1 and 2. I suggest that we must address these gaps to develop theoretical structures that will enable us to explicitly consider and adequately balance the "interdependent" and other interests of infants or fetuses, their family members, and even society in neonatal and maternal-fetal decision-making. (shrink)

The purpose of this paper is to compare disagreement in two different WhatsApp groups: one for members of the same family, and another for work colleagues. After the analysis, 427 instances of disagreement were identified in the family group, and 161 in the interactions between work colleagues. The most common strategy in both corpora is ‘Giving opposite opinions’. Nevertheless, the rest of the results present very significant dissimilarities, most notably the higher presence of disagreement in the (...) class='Hi'>family WhatsApp group. This higher tolerance for disagreement is corroborated by the choice of linguistic strategies made. Whereas the family members tended to give emotional or personal reasons for disagreement, as well as negative comments on the topic, the colleagues preferred to express their disagreement with mitigating expressions and token agreement. Thus, in the corpora studied, the expression of disagreement seems to be less face threatening for family members than for work colleagues. (shrink)

Many state laws specify procedures for determining surrogate or proxy decision-makers for end-of-life care in the absence of an advance directive, living will, or other designation. Some laws also set forth criteria that the decision-maker must follow when making medical decisions for an incapacitated patient and determining whether to withdraw life-sustaining treatment. This article provides analysis of a medical ethics case on the question of how to address family allegations that the proxy decision-maker suffers from dementia and is unable (...) to make decisions for the patient. Cases such as this involve interwoven legal and ethical considerations including: how to address concerns that the proxy is making questionable or unreasonable decisions, how to evaluate the proxy's decisional capacity, strategies for enhancing communication, and standards for removing a proxy. This article suggests that “surrogacy ladders” in state law serve not only as a procedural mechanism, but also protect important ethical values such as tiers of moral authority for decision-making, relational autonomy, and privacy. (shrink)

In recent years, hospitals, clinics, and professional organizations have with increasing frequency pledged their commitment to “patient-and family-centered care”. The movement toward PFCC is especially pronounced in pediatrics, where the American Academy of Pediatrics has a long-held, explicit commitment to PFCC. However, the unified movement toward PFCC obscures differing conceptions of its purpose. First, patient-centered care, as opposed to provider- or disease-centered care, focuses on increasing patient involvement in care to accomplish two related, but distinct objectives: improving health outcomes (...) and better respecting patients’ wishes. The Institute of... (shrink)