The purpose of this paper is to encourage reflection about the harm that could result if the positive aspects of team-organized health care are compromised during the health care reform process. While other models of health care delivery could replace teamwork and serve patients as well or better, the interdisciplinary health care team probably will not be abandoned. However, one or more disciplines whose members play important roles on various teams may be sacrificed in the hasty (...) effort to define essential health care. Moreover, a significant proportion of the types of IHCTs in existence could be rashly eliminated from health plans. These changes should not take place randomly or by default. (shrink)

The purpose of this paper is to encourage reflection about the harm that could result if the positive aspects of team-organized health care are compromised during the health care reform process. While other models of health care delivery could replace teamwork and serve patients as well or better, the interdisciplinary health care team probably will not be abandoned. However, one or more disciplines whose members play important roles on various teams may be sacrificed in the hasty (...) effort to define essential health care. Moreover, a significant proportion of the types of IHCTs in existence could be rashly eliminated from health plans. These changes should not take place randomly or by default. (shrink)

Background and aim Healthcare professionals are regularly exposed to moral challenges in patient care potentially compromising quality of care and safety of patients. Preventive clinical ethics support aims to identify and address moral problems in patient care at an early stage of their development. This study investigates the occurrence, risk factors, early indicators, decision parameters, consequences and preventive measures of moral problems. Method Semi-structured expert interviews were conducted with 20 interprofessional healthcare professionals from 2 university (...) hospitals in Basel, Switzerland. A Likert scale questionnaire was completed by the interviewees and analysed using descriptive and inferential statistics. Results Healthcare professionals are frequently exposed to a variety of moral problems, such as end-of-life decisions, resource allocation and assessing the patient's will or decisional capacity. Thirty-four different risk factors for moral problems are identified, e.g. patient vulnerability, divergent values or world views, inadequate resources or poor ethical climate. Twenty-one early indicators are recognised such as disagreement between healthcare professionals, patients and relatives, emotional disturbances, gut feeling or conflict of conscience. A variety of preventive measures are suggested and presented in a preventive clinical ethics support process model. The most helpful measures are early ethical conversations with colleagues, early team-internal ethical case discussions and an ethics-trained contact person on the ward. Ethics training, kerbside consultations, proactive ethics consultations, ethics screening and rounds are also considered helpful. Conclusions Clinical ethics support services should not only offer reactive and complex, but also proactive and low-threshold support for healthcare professionals, patients and relatives. (shrink)

Although COVID-19 vaccines are free and readily available in the United States, many healthcare workers remain unvaccinated, potentially exposing their patients to a life-threatening pathogen. This paper reviews the ethical and legal factors surrounding patient requests to limit their care teams exclusively to vaccinated providers. Key factors that shape policy in this area include patient autonomy, the rights of healthcare workers, and the duties of healthcare institutions. Hospitals must also balance the rights of interested parties in the (...) context of logistical constraints, equity, and public health considerations. (shrink)

Background Italy was the first European country to be involved with the COVID-19 pandemic. As a result, many healthcare professionals were deployed and suddenly faced end-of-life care management and its challenges. Aims To understand the experiences of palliative care professionals deployed in supporting emergency and critical care staff during the COVID-19 first and second pandemic waves. Research design A qualitative descriptive design was adopted, and in-depth interviews were used to investigate and analyse participants’ perceptions and points of (...) view. Participants and research context Twenty-four healthcare professionals (physicians, nurses, psychologists, physiotherapists, and spiritual support) from the most affected areas of Italy were recruited via the Italian society of palliative care and researchers’ network. Ethical considerations The University Institutional Board granted ethical approval. Participants gave written informed consent and agreed to be video-recorded. Findings The overarching theme highlighted participants’ experience supporting health professionals to negotiate ethical complexity in end-of-life care. Crucial topics that emerged within themes were: training emergency department professionals on ethical dimensions of palliative and end-of-life care, preserving dying patients’ dignity and developing ethical competence in managing end-of-life care. Conclusions Our study showed palliative care teams’ challenges in supporting health professionals’ ethical awareness in emergencies. However, while they highlighted their concerns in dealing with the emergency staff’s lack of ethical perspectives, they also reported the positive impact of an ethically-informed palliative care approach. Lastly, this study illuminates how palliative care professionals’ clinical and ethical competence might have assisted a cultural change in caring for dying patients during COVID-19 and future emergencies. (shrink)

As reproductive freedoms in the U.S. undergo significant rollbacks, vital reproductive health services — and the care teams delivering them — face escalating legal threats and complexity. This qualitative case-control community-based participatory research study describes how legal problem-solving supports for reproductive care teams serving mothers with opioid use disorder are protective for both patients and care team members. We describe how medical legal partnerships (MLPs) can promote Reproductive Justice and argue for wider adoption of care-team facing (...) legal supports. (shrink)

Bioethics is a relatively new addition to bedside medical care in Arab world which is characterized by a special culture that often makes blind adaptation of western ethics codes and principles; a challenge that has to be faced. To date, the American University of Beirut Medical Center is the only hospital that offers bedside ethics consultations in the Arab Region aiming towards better patient-centered care. This article tackles the role of the bedside clinical ethics consultant as an (...) active member of the medical team and the impact of such consultations on decision-making and patient-centered care. Using the case of a child with multiple medical problems and a futile medical condition, we describe how the collaboration of the medical team and the clinical ethics consultant took a comprehensive approach to accompany and lead the parents and the medical team in their decision-making process and how the consultations allowed several salient issues to be addressed. This approach proved to be effective in the Arab cultural setting and indeed did lead to better patientcentered care. (shrink)

The Institute of Medicine has called on health care leaders to transform their health systems into “learning health care systems,” capable of studying and continuously improving their practices. Learning health care systems commit to carrying out numerous kinds of investigations, ranging from clinical effectiveness studies to quality improvement research and implementation science. There has been progress in realizing the IOM's vision, but also many challenges. One of these challenges has been lingering uncertainty about whether the data collection (...) and monitoring central to learning health care systems is actually research and if so, what kind of ethical oversight it should have. This is not a new question. Yet so far, there has been no foundational analysis of the fit between the existing human subjects protection framework in use in the United States and the new kinds of data collection activities that are being, and increasingly will be, undertaken by learning health care systems. Two companion feature articles in this volume, by a team at Johns Hopkins, fill this void. (shrink)

Over the past two decades, we have seen an increase in the use of medical-legal partnerships in health-care and/or legal settings to address health disparities affecting vulnerable populations. MLPs increase medical teams' capacity to address social and environmental threats to patients' health, such as unsafe housing conditions, through partnership with legal professionals. Following the Preferred Reporting Items for Systematic Review and Meta-Analyses guidelines, we systematically reviewed observational studies published from January 1993-January 2016 to investigate the capacity of MLPs to (...) address legal and health disparities. We identified 13 articles for qualitative analysis from an initial pool of 355 records. The resulting pool of 13 articles revealed more information regarding the capacity of MLPs to address legal outcomes than their capacity to address health outcomes; only 4 studies directly addressed the impact of MLP intervention on patient wellbeing and/or patient utilization of healthcare services. We call for further evaluation/longitudinal studies that specifically address MLPs' short and long term effects upon patient health disparities. Finally, given the demonstrated capacity of MLPs to address unmet legal needs, and their evident potential in regards to improving health outcomes, we present the MLP model as a framework to address HIV-related legal and health disparities. (shrink)

Palliative Care Nursing: Caring for Suffering Patients explores the concept of suffering as it relates to nursing practice. This text helps practicing nurses and students define and recognize various aspects of suffering across the lifespan and within various patient populations while providing guidance in alleviating suffering. In addition, it examines spiritual and ethical perspectives on suffering and discusses how witnessing suffering impacts nurses' ability to assume the professional role. Further, the authors discuss ways nurses as witnesses to suffering (...) can optimize their own coping skills and facilitate personal growth. Rich in case studies, pictures, and reflections on nursing practice and life experiences, Palliative Care Nursing: Caring for Suffering Patients delves into key topics such as how to identify when a patient is suffering, whether they are coping, sources of coping facades, what to do to ease suffering, and how to convey the extent of suffering to members of the health care team.Palliative Care Nursing: Caring for Suffering Patients helps practicing nurses and students define and recognize various aspects of suffering across the lifespan and within various patient populations while providing guidance in alleviating suffering. (shrink)

Reconstructive allografts using Vascularized Composite Allotransplantation are providing individuals living with upper limb loss and facial disfigurement with new opportunities for a sensate, esthetically acceptable, and functional alternative to current treatment strategies. Important research attention is being paid to how best to assess and screen candidates for VCA, measure optimal patient outcomes, and support patient adherence to lifelong behaviors and medical regimens. Far less attention, however, has been dedicated to the team science required for these complex VCA teams (...) to form, prepare, and provide the highest quality clinical and psychosocial care to those receiving VCA. VCA teams are unique in that they require specialized team members whose scope of practice may not otherwise overlap. The team also needs to constantly negotiate balancing patient safety with multiple risks throughout the transplant process. This study aimed to elucidate the team science needed for this highly innovative and complex area of medicine. Using in-depth qualitative interviews with 14 VCA team members and observations at team meetings, we found that careful consideration of team composition, team structure, and organizational commitment influences team performance and patient outcomes, but that to be efficient and truly effective, teams need to commit to developing processes that foster collaboration. These processes are action-oriented, strategic and interpersonal. Dedication and commitment to team science allows teams to manage conflict under stress and exercise ways to leverage strengths to provide optimal performance or patient psychosocial and clinical outcomes. This study can provide insight into quality improvement efforts for VCA teams and guidance for other transplant programs that wish to consider expansion into VCA. (shrink)

This paper presents and evaluates a methodological approach aiming at analysing some of the complex interaction between patients and different health care practitioners working together in teams. Qualitative health care research describes the values, perceptions and conceptions of patients and practitioners. In modern clinical work patients and professional practitioners often work together on complex cases involving different kinds of knowledge and values, each of them representing different perspectives. We need studies designed to capture this complexity. The methodological approach (...) presented here is exemplified with a study in rehabilitation medicine. In this part of the health care system the clinical work is organized in multi-professional clinical teams including patients, handling complex rehabilitation processes. In the presented approach data are collected in individual in-depth interviews to have thorough descriptions of each individual perspective. The interaction in the teams is analysed by comparing different descriptions of the same situations from the involved individuals. We may then discuss how these perceptions relate to each other and how the individuals in the team interact. Two examples from an empirical study are presented and discussed, illustrating how communication, differences in evaluations and the interpretation of incidents, arguments, emotions and interpersonal relations may be discussed. It is argued that this approach may give information which can supplement the methods commonly applied in qualitative health care research today. (shrink)

Background:Moral distress occurs when constraints prevent healthcare providers from acting in accordance with their core moral values to provide good patient care. The experience of moral distress in nurses might be magnified during the current Covid-19 pandemic.Objective:To explore causes of moral distress in nurses caring for Covid-19 patients and identify strategies to enhance their moral resiliency.Research design:A qualitative study using a qualitative content analysis of focus group discussions and in-depth interviews. We purposively sampled 31 nurses caring for Covid-19 (...) patients in the acute care units within large academic medical systems in Maryland and New York City during April to June 2020.Ethical considerations:We obtained approval from the Institutional Review Board at the University of Maryland, Baltimore.Results:We identified themes and sub-themes representative of major causes of moral distress in nurses caring Covid-19 patients. These included (a) lack of knowledge and uncertainty regarding how to treat a new illness; (b) being overwhelmed by the depth and breadth of the Covid-19 illness; (c) fear of exposure to the virus leading to suboptimal care; (d) adopting a team model of nursing care that caused intra-professional tensions and miscommunications; (e) policies to reduce viral transmission (visitation policy and PPE policy) that prevented nurses to assume their caring role; (f) practicing within crisis standards of care; and (g) dealing with medical resource scarcity. Participants discussed their coping mechanisms and suggested future strategies.Discussion/Conclusion:Our study affirms new causes of moral distress related to the Covid-19 pandemic. Institutions need to develop a supportive ethical climate that can restore nurses’ moral resiliency. Such a climate should include non-hierarchical interdisciplinary spaces where all providers can meet together as moral peers to discuss their experiences. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Care of the terminal patient:Are we on the same page?Lauren WancataIn surgical training a “service” or care team consists of sick patients admitted to the hospital and the medical team caring for the patient. Each service consists of an attending physician, a chief resident, a senior resident and junior residents structured as a hierarchy. The chief was gone for the week. As a senior trainee (...) I would be the acting chief—a role I had assumed many times before this month. To prepare for the week of his absence, I read through each patient’s chart, and the chief and I discussed each patient—diagnosis, procedures, and plans.One was a 41–year–old male with cancer—he was young, but a patient like him was not uncommon at my institution. He originally came in through the emergency department with abdominal pain and difficulty with urination. His admitting medical team started the work–up for his symptoms—blood tests, a CAT scan, and consults to other physician services with specialized knowledge. He eventually underwent endoscopy with biopsies of his stomach and placement of stents into his ureter and kidney for his urinary issues. With return of the biopsies, he had a diagnosis—cancer. He required additional procedures, including the placement of stents into his bile ducts, as they, like his ureter, had become affected by the cancer. The next step was staging the cancer to determine his treatment options. Our surgical service was consulted for a diagnostic laparoscopy with washing—we would take a look inside his abdomen with a camera and obtain a fluid sample to be sent to the pathologist for review, the standard of care for this type of cancer. When the camera was placed nodules were seen—a sample of the nodules and the fluid were sent to a pathologist and determined to be positive for cancer: metastatic disease, stage IV. A special feeding tube was placed into his small intestine to aid in nutritional support, as he had already lost a significant amount of weight, and improving his nutrition would be imperative for any further treatments. Following this operation, oversight of his day–to–day care was taken on by our surgical service, and he had been under our care for a period of time before I rotated onto the service for the month.What was the plan for his care in the hospital, and what was his–long–term plan? His cancer could not be surgically removed due to the extent of its spread within his body. He had recently undergone another CAT scan due to an elevation in his white blood cell count (this elevation was a sign of possible infection) and a thoracentesis, a procedure to remove some of the fluid that was collecting around his lungs. Nephrologists (kidney specialist) had been consulted due to his declining kidney function. Throughout the days, his tube feeds, his source of nutrition, would often be turned off due to bloating and feeling full.Each morning, I rounded with our team, and we would see how he was doing. We would discuss how his night went, and make a plan for the day. He was a man of few words, but his wife was always at his bedside, to support him, listen to updates and keep tract of his progress. She had worked at the hospital and had seen a wide range of patients. She would ask about his kidney function, his tube feeds, and his labs. But, she never asked about his prognosis. I would leave his room each day with the unnerving feeling that the patient, family members and care team were not on the same page. Yes, we all wanted him to get better and to leave the hospital. [End Page 28] But, was he really going to get better? What defined better? Did the patient and his family really know the extent of his disease and his prognosis?Towards the end of my week as chief, I started to ask if they had any other questions. It had been a few weeks since his operation. Was there anything that they wanted to discuss or ask me about? At the... (shrink)

In the past 50 years, an ethical-legal boundary has been drawn between treatment and research. It is based on the reasoning that the two activities pursue different purposes. Treatment is aimed at achieving optimal therapeutic benefits for the individual patient, whereas the goal of scientific research is to increase knowledge, in the public interest. From this viewpoint, the patient’s experience should be clearly distinguished from that of a participant in a clinical trial. On this premise, two parallel and (...) mutually exclusive regimes have been established. Yet in the case of deep brain stimulation (DBS), this presentation is a poor fit, for both the patient’s lived experience and medical practice and research. The frictions may be explained by the specificities of the treatment (including surgery and medical devices) and of the pathologies concerned (chronic and evolutive), and by the characteristics of the medical team implementing the treatment. These particularities challenge the dominant frame of reference in medical bioethics and cause difficulties for the current legal framework in fulfilling its dual role: to protect patients while supporting the development of innovative treatments. The dominant model is still the clinical trial for medication safety and legal requirements of drug market regulation. However, DBS forces us to reflect on a medical device that is permanently implanted in the brain by highly specialized multi-disciplinary neurosurgical teams, for the treatment of chronic evolutive diseases. These devices demand fine-tuning on a case-by-case basis and there is still a lot to discover about why DBS is effective (or not). As a result, the wall between treatment and research is osmotic: many discoveries are made incidentally, in the course of treatment. The following study begins with these observations, and suggests that we review legal provisions (especially in French and United States law) so that they are better adapted to the first-person needs and experience of the patient undergoing brain stimulation. (shrink)

Although we normally have no difficulty with holding individuals accountable for the effects of their actions, we are still confused about holding a health care team accountable. I argue that we can hold teams accountable in the same way that we hold individuals accountable. In constructing this argument, I first examine the nature of a team, then look at the consequences of team decision and action, in particular, the problem of synergistic decisionmaking. Finally I relate this philosophical discussion to (...) patient care decisions by teams. (shrink)

Mr. Bernard was a homeless man, aged 58. His medical history revealed alcohol abuse, seizure disorder, and two suicide attempts. Brought to the emergency room at a local hospital after being found “semi-comatose,” his respiratory distress led to his being intubated and placed on a ventilator. The healthcare team suspected the patient ingested antifreeze. Transferred from that hospital to the intensive care unit of the university hospital, his diagnosis was “high osmolar gap with high-anion gap metabolic acidosis, most (...) likely secondary to ethylene glycol ingestion and renal insufficiency.”. (shrink)

BackgroundBurn patients are among the most vulnerable groups of patients requiring principled ethical care. Caring for these patients often brings various ethical challenges for the members of the health care teams, especially nurses, which affect the clinical decisions made for these patients. A limited number of studies have addressed the ethical challenges of caring for burn patients for the responsible caregivers, so the present study attempted to identify these challenges. The present study aimed to explore the health professionals' (...) experiences of the ethical challenges during caring for burn patients.MethodsThis was a qualitative study with a descriptive, phenomenological design. 22 health professional practiced in public burn centers in Iran who met the inclusion criteria of the study were selected via purposeful sampling to participate in the study from June to August 2019. Data were collected using semi-structured, in-depth interviews with the individuals as well as field notes. Sampling was continued up to the data saturation. Thereafter, the collected data were analyzed using Colaizzi's method.ResultsThe findings of the study yielded 3 themes, including respect for the patient's privacy, respect for the patient's personal identity, and care challenges, as well as 9 categories.ConclusionThe findings of this study showed that the burn patients’ caregivers face some challenges in the domains of maintaining the patient's privacy, respecting the patient’s personal identity, and making the best clinical decision. Thus, providing the cultural, professional, and organizational requirements of meeting the challenges of caring for burn patients can consequently result in the caregivers’ inner peace and the improved performance. (shrink)

In recent years the literature on bioethics has begun to pose the sociological challenge of how to explore organisational processes that facilitate a systemic response to ethical concerns. The present discussion seeks to make a contribution to this important new direction in ethical research by presenting findings from an Australian pilot study. The research was initiated by the Clinical Ethics Committee of Redland Hospital at Bayside Health Service District in Queensland, Australia, and explores health professionals’ understanding of the nature of (...) ethics and their experience with ethical decision-making within an acute medical ward. This study focuses on the actual experience, understanding and attitudes of clinical professionals in a general medical ward. In particular, the discussion explores the specific findings from the study concerned with how a multi-disciplinary team of health professionals define and operationalise the notion of ethics in an acute ward hospital setting. The key issue reported is that health professionals are not only able to clearly articulate notions of ethics, but that the notions expressed by a multi-disciplinary diversity of participants share a common definitional concept of ethics as patient-centred care. The central finding is that all professional groups indicated that there is a guiding principle to address their ethical sense of the ‘good’ or the ‘ought’ and that is to act in a way that furthered the interests of patients and their families. The findings affirm the importance of a sociological perspective as a productive new direction in bioethical research. (shrink)

As physicians, we have seen patients with substance use disorders leave the hospital against medical advice, slipping through the cracks of our health care system. In fact, despite a high burden of life‐threatening illnesses, patients with SUDs are at a nearly threefold increased risk of leaving the hospital against medical advice. Leaving against medical advice is associated with an increased thirty‐day mortality rate as well as an increased rate of hospital readmission. When a patient leaves in this way, (...) the health care system loses the opportunity to engage with someone who is struggling with an SUD and whose health is at imminent risk. Fortunately, there are ways to address some of these challenges within existing organizational frameworks. Addiction consult teams and supervised injection facilities are two interventions that have proven successful. (shrink)

Beginning my third year with the Kansas City Chiefs and being also a medical student at McGill University, I was at first a little reluctant to comment on Glenn Cohen et al.’s critique of the National Football League's structure involving player health and team doctors, but the opportunity to provide a perspective as both a football player and a medical student was too much to forgo. Because of my athletic and academic background, I am often asked what I think about (...) injuries in professional sports and about the role of sports medicine physicians, and Cohen et al.’s article demands a thoughtful reaction. I want to suggest that the fundamental principles concerning the medical profession and the doctor-patient relationship provide additional arguments for some of the solutions that Cohen et al. discuss. The professional self-regulation that the proposed medical committee could provide and the reliance on a doctor who was not hired by the player's employer—the club—for a second opinion are both good ways to minimize conflicts of interest. (shrink)

Defined as patients who ‘lack decision-making capacity and a surrogate decision-maker’, the unrepresented present a major quandary to clinicians and ethicists, especially in handling errors made in their care. A novel concern presented in the care of the unrepresented is how to address an error when there is seemingly no one to whom it can be disclosed. Given that the number of unrepresented Americans is expected to rise in the coming decades, and some fraction of them will experience (...) a medical error, creating protocols that answer this troubling question is of the utmost importance. This paper attempts to begin that conversation, first arguing that the precarious position of unrepresented patients, particularly in regards to errors made in their care, demands their recognition as a vulnerable patient population. Next, it asserts that the ethical obligation to disclose error still exists for the unrepresented because the moral status of error does not change with the presence or absence of surrogate decision-makers. Finally, this paper concludes that in outwardly acknowledging wrongdoing, a clinician or team leader can alleviate significant moral distress, satisfy the standards of a genuine apology, and validate the inherent and equivalent moral worth of the unrepresented patient. (shrink)

BackgroundSocial support plays an important role for health outcomes. Support for those living with chronic conditions may be particularly important for their health, and even for their survival. The role of support for the survival of cancer patients after receiving an allogeneic hematopoietic cell transplant is understudied. To better understand the link between survival and support, as well as different sources and functions of support, we conducted two studies in alloHCT patients. First, we examined whether social support is related to (...) survival. Second, we examined who provides which support and which specific support-related functions and tasks are fulfilled by lay caregivers and healthcare professionals.MethodsIn Study 1, we conducted a retrospective chart review of alloHCT patients and registered availability of a dedicated lay caregiver and survival. In Study 2, we prospectively followed patients after alloHCT from the same hospital, partly overlapping from Study 1, who shared their experiences of support from lay caregivers and healthcare providers in semi-structured in-depth interviews 3 to 6 months after their first hospital discharge.ResultsPatients with a dedicated caregiver had a higher probability of surviving to 100 days than patients without a caregiver, OR = 2.84, p = 0.042. Study 2 demonstrated the importance of post-transplant support due to patients’ emotional needs and complex self-care regimen. The role of lay caregivers extended to many areas of patients’ daily lives, including support for attending doctor’s appointments, managing medications and financial tasks, physical distancing, and maintaining strict dietary requirements. Healthcare providers mainly fulfilled medical needs and provided informational support, while lay caregivers were the main source of emotional and practical support.ConclusionThe findings highlight the importance of studying support from lay caregivers as well as healthcare providers, to better understand how they work together to support patients’ adherence to recommended self-care and survival. (shrink)

Health care work is interprofessional work. Nurses and physicians, members of the professions whose close collaboration is foundational to health care delivery, continue to be educated separately in most academic institutions. Their work also is organized in ways that challenge interprofessional collaboration. Understanding workplace realities faced by nurses and physicians, separately and jointly, is a starting place for exploring how to support ethically sound interprofessional work. In this essay, we look most closely at the work of nurses and (...) physicians who care for seriously ill hospitalized patients, a patient population closely associated with ethical challenges. (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)

The increasing incidence of ethical dilemmas in long-term care settings, in concert with recommendations from the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, has prompted long-term care institutions to develop mechanisms to address these concerns. Some facilities have chosen to set up an ethics committee, although estimates obtained in the past few years indicate that only between 2 and 27% of institutional long-term care settings have such committees. Ethics committees (...) are responsible for assisting staff, residents, and families with the resolution of ethi- cal concerns, and typically engage in policy review and development, case review, and education. Such committees usually count among their membership representatives from a variety of disciplines, with family members, patients, and representatives from patient advocacy groups supplementing the professional component of the committee. (shrink)

Abstract:This symposium includes twelve personal narratives from healthcare professionals who have worked with patients whose behavior, attitudes, or life situations make providing care challenging. At the lower end of the estimates, at least 15% of adult patient encounters are with patients described as "difficult" by the treating team, and these encounters often evoke feelings of dread, frustration, and anger in healthcare professionals. Verbal abuse of staff, repeat hospital admissions due to self-injurious behaviors, and negative beliefs about health may (...) make providing care to this group of patients a daily struggle. Despite these challenges, healthcare providers—especially those who work in an in-patient setting—are obligated to treat all comers, sometimes at the expense of their own mental health. This symposium aims to learn from health professionals' stories the kinds of struggles they face, the lessons they draw from those struggles, and the constructive responses they employ to work successfully with challenging patients. (shrink)

Discusses values from the perspective of different health care professionals and why teams and collaborations may succeed or fail.

BackgroundEthics consultations are established in contemporary health care. Informal ethics consultations often occur and are possibly beneficial, yet they have not been empirically studied. We sought to describe features of informal ethics consultations and to identify facilitators and disruptors of patient participation in such ethics consultations.MethodsWe used a mixed methods (quantitative and qualitative) evaluation design and conveniently sampled 64 sequential informal ethics consultations over a period of 3 years in two academic health care centers in one city (...) in Canada. Data were collected by the two participating ethicists. We used statistical description for the quantitative data and thematic analysis for the qualitative data.ResultsPatients participated in only two (3%) of the informal ethics consultations. Factors that disrupted patient participation in ethics consultations were related to patients’ issues (mental impairments), family issues (family withholding information from the patient), and team members’ issues (efficiency considerations).ConclusionInformal ethics consultations may be used for ethics capacity building of health care providers rather than for engagement with addressed patients. Further research on informal ethics consultations is required, including in different sites. (shrink)

A case of conflict in pediatric end-of-life decision making is presented to compare the complementary roles of clinical ethics consultants and palliative care specialists. The progression of the case illustrates the differing structures, goals, and methods of the majority of such teams. The strengths of each of consultation are emphasized. Particularly in centers where palliative care services are not available, it can be important for careproviders and clinical ethics consultants to focus on alliance-building and a longitudinal relationship with (...) patients and families. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Managing the Transition from Patient-Centered Care to ProtocolDavid SlakterI learned that I would need a kidney transplant in the summer of 2015. This was not a complete surprise to me, as I had been subjected to a number of tests and invasive procedures to investigate nephritis since I was a child. I had heard similar stories of clinicians performing repeated tests on my father for similar reasons (...) without any conclusions. Following my recommendation for transplant and consultation with genomics specialists, the cause of my kidney failure was determined to be Alport syndrome. What made Alport syndrome so difficult to diagnose in my case was that the associated mutation is a rare, autosomal-dominant one that has only recently been associated with the condition.After reviewing the data on survival rates for transitioning to dialysis versus a transplant, my family and I then considered the success rates for living versus cadaver donors, and the success rates at various transplant centers. The current data favor the long-term outcomes of transplant over dialysis and living over cadaver donors. Since we had decided to focus on searching for a live donor, my nephrologist recommended contacting Renewal, an organization that specializes in connecting those in need of a kidney transplant with live donors and providing support for donors to make the donation process less burdensome.On Renewal’s recommendation, my family and friends reached out across their social networks to search for potential donors. Many of those tested for compatibility were eliminated on basic matching criteria, others due to previously undiagnosed medical problems. Finally, the wife of a childhood friend came forward as an eligible donor and was also an incredibly close match on the antigens tested for kidney transplants.Having a living donor who was also a friend made the transplant experience somewhat less intimidating than it might have been. It meant the transformation of an existing relationship with someone already close to me, with fewer open questions about what may have motivated them to be so generous than if the donor had been someone I did not know. It also meant our families could be together in the waiting room, and that we shared in each other’s recoveries.Life post-transplant has been a significant improvement from what it was like immediately beforehand. Before my transplant, I regularly weighed food and consulted nutrition charts to gauge how much potassium I was consuming. To prevent too much potassium from building up in my bloodstream, I had to take sodium polystyrene [End Page 111] regularly. As one might guess from the name, it tastes much like burnt Styrofoam, and I could only ingest it with copious amounts of fruit-flavored syrup (strawberry covered up the awful flavor the best). There are other potassium binders on the market now, so fewer people with kidney failure will likely need to engage in such gustatory experimentation.I was also able to engage in more activities than what was possible even years before my transplant. I had long experienced difficulty with aerobic exercises, but assumed the reason was merely being out of shape. Though I have always walked regularly, even the one-mile walk from my office to my apartment had become a chore by the end. Within a few months after my transplant, I was riding a bicycle all over NYC, from Harlem to Brooklyn and back regularly, and hiking trails in nearby state parks. I began sessions with a personal trainer and attained a level of fitness I had not reached since I played soccer as a child.The transition from personalized care to one more driven by protocol has been a surprising and challenging aspect of the transplant process. While my previous experience with medical treatment has been individual meetings with physicians, my post-transplant care is managed by a team of nephrologists and other specialists in transplant care. My initial transplant nephrologist was automatically assigned to me. Because the standard of care for transplant patients is often driven by protocol, my assigned nephrologist recommended a biopsy on my transplanted kidney due to results in my recent lab tests. When pressed on the necessity of a biopsy in my case versus... (shrink)

Growing interest in embedded research approaches—where research is incorporated into clinical care—has spurred numerous studies to generate knowledge relevant to the real-world needs of patients and other stakeholders. However, it also has presented ethical challenges. An emerging challenge is how to understand the nature and extent of investigators’ obligations to patient-subjects. Prior scholarship on investigator duties has generally been grounded upon the premise that research and clinical care are distinct activities, bearing distinct duties. Yet this premise—and its (...) corresponding implications—are challenged when research and clinical care are deliberately integrated. After presenting three case studies from recent pragmatic clinical trials, we identify six differences between explanatory trials and embedded research that limit the application of existing scholarship for ascertaining investigator duties. We suggest that these limitations indicate a need to account for the implications of usual care and to move beyond a narrow focus on the investigator-subject dyad, one that better reflects the team- and institution-based nature of contemporary health systems. (shrink)

In some families, there is an inseparable connection between showing love, caring, and providing food. These conceptual connections can create tension between families and care teams over end-of-life care for critically ill late-stage cachexic patients with cancer when families demand that their loved one receive feeds. This case study describes how to dissolve these tensions without compromising the family’s values or the medical team’s ethical duty of nonmaleficence.

Examined as an isolated situation, and through the lens of a rare and feared disease, Mr. Duncan's case seems ripe for second-guessing the physicians and nurses who cared for him. But viewed from the perspective of what we know about errors and team communication, his case is all too common. Nearly 440,000 patient deaths in the U.S. each year may be attributable to medical errors. Breakdowns in communication among health care teams contribute in the majority of these errors. (...) The culture of health care does not seem to foster functional, effective communication between and among professionals. Why? And more importantly, why do we not do something about it? (shrink)

BackgroundDespite consensus about the importance of implementing shared decision-making (SDM) in clinical practice, this ideal is inconsistently enacted today. Evidence shows that SDM practices differ in the degree of involvement of patients or family members, or in the amount of medical information disclosed to patients in order to “share” meaningfully in treatment decisions. Little is known on which representations and moral justifications physicians hold when realizing SDM. This study explored physicians’ experiences of SDM in the management of paediatric patients with (...) prolonged disorders of consciousness (PDOC). Specifically, we focused on physicians’ SDM approaches, representations, and ethical justifications for engaging in SDM.MethodsWe used a qualitative approach to explore the SDM experiences of 13 ICU physicians, paediatricians, and neurologists based in Switzerland who have been or were involved in the care of paediatric patients living with PDOC. A semi-structured interview format was used and interviews were audio-recorded and transcribed. Data were analysed through thematic analysis.ResultsWe found that participants followed three main decision-making approaches: the “brakes” approach, characterized by maximized family’s decisional freedom, though conditional to physician’s judgment regarding the medical appropriateness of a treatment; the “orchestra director” approach, characterized by a multi-step decision-making process led by the main physician aimed at eliciting the voices of the care team members and of the family; and the “sunbeams” approach, characterized by a process oriented to reach consensus with family members through dialogue, where the virtues of the physician are key to guide the process. We also found that participants differed in the moral justifications sustaining each approach, citing the duty to respect parental autonomy, to invest in an ethics of care, and to employ physicians’ virtues to guide the decision-making process.ConclusionOur results show that physicians come to perform SDM in different ways, with several representations, and distinct ethical justifications. SDM training among health care providers should clarify the ductility of SDM and the several ethical motivations underpinning it, rather than insisting on the principle of respect for patient’s autonomy as its only moral foundation. (shrink)

BackgroundThe need for an ethical debate about the use of coercion in intensive care units (ICU) may not be as obvious as in other areas of medicine, such as psychiatry. Coercive measures are often necessary to treat critically ill patients in the ICU. It is nevertheless important to keep these measures to a minimum in order to respect the dignity of patients and the cohesion of the clinical team. A deeper understanding of what patients and their relatives perceive during (...) their ICU stay will shed different light on intensive care management. Patients' experiences of loss of control, dependency and abandonment may lead to a new approach towards a broader approach to the concept of coercion in intensive care. The aim of our research is to explore the experiences of patients and relatives in the ICU and to determine when it might be possible to reduce feelings and memories of coercion.MethodsWe conducted and analysed 29 semi-structured interviews with patients and relatives who had been in the ICU a few months previously. Following a coding and categorisation process in MAXQDA™, a rigorous qualitative methodology was used to identify themes relevant to our research.ResultsFive main themes emerged: memory issues; interviewees’ experiences of restricting measures and coercive treatment; patients’ negative perception of situational and relational dependency with the risk of informal coercion; patients’ perceptions of good care in a context of perceived dependency; progression from perception of coercion and dependency to respect for the person. All patients were grateful to have survived. However, coercion in the form of restraint, restriction of movement, and coercive treatment in the ICU was also acknowledged by patients and relatives. These included elements of informal coercion beyond restraints, such as a perceived negative sense of dependence, surrender, and asymmetrical interaction between the patient and health providers.ConclusionsTo capture the full range of patients' experiences of coercion, it is necessary to expand the concept of coercion to include less obvious forms of informal coercion that may occur in dependency situations. This will help identify solutions to avoid or reduce negative recollections that may persist long after discharge and negatively affect the patients' quality of life. (shrink)

BackgroundThe intensive care unit entails working as a team in rescuing patients from life-threatening conditions. The care being given by the team could also be done by nurses and other health professionals through the coordinated use of all medical practices.ObjectiveTo determine the opinion of nurses on the ethical problems they experienced while working as a team in the intensive care units of a university hospital.MethodThe descriptive research was conducted on nurses working in intensive care units. A (...) 56-item data collection form consisting of two parts developed by the researchers was used. Frequency and median were evaluated, and statistical calculations were used for group comparisons.ResultsOut of the 82 nurses who participated in the study, 65 were university graduates. About 52 of the participants were female with a mean age of 28.12 ± 5.84; 26 had intensive care certification, and 54 had ethical training. The internal intensive care unit nurses were less satisfied with their jobs, able to use tools, said that they had the right to refuse the patient compared to the surgical intensive care unit nurses. Discussion and conclusions: It is a positive situation for the participants to score low with ethical problems based on suggestion as the probability of meeting with their teammates. However, it is important that the problems that affect the motivation of the nurses are different according to the intensive care unit and the employees. (shrink)

Background:The concept of patient advocacy is still poorly understood and not clearly conceptualized. Therefore, there is a gap between the ideal of patient advocacy and the reality of practice. In order to increase nursing actions as a patient advocate, a comprehensive and clear definition of this concept is necessary.Research objective:This study aimed to offer a comprehensive and clear definition of patient advocacy.Research design:A total of 46 articles and 2 books published between 1850 and 2016 and related (...) to the concept of patient advocacy were selected from six databases and considered for concept analysis based on Rodgers’ evolutionary approach.Ethical considerations:This study was approved by the Research Ethics Committee of Tarbiat Modares University.Findings:The attributes of patient advocacy are safeguarding (track medical errors, and protecting patients from incompetency or misconduct of co-workers and other members of healthcare team), apprising (providing information about the patient’s diagnosis, treatment, and prognosis, suggesting alternatives of healthcare, and providing information about discharge program), valuing (maintaining self-control, enabling patients to make decisions freely, maintaining individualization and humanity, maintaining patient privacy, and acting in the patients’ values, culture, beliefs, and preferences), mediating (liaison between patients, families, and healthcare professionals, being patients’ voice, and communicate patient preferences and cultural values to members of the healthcare team), and championing social justice in the provision of healthcare (confronting inappropriate policies or rules in the healthcare system, identifying and correcting inequalities in delivery of health services, and facilitating access to community health services and health resources).Discussion and conclusion:The analysis of this concept can help to develop educational or managerial theories, design instruments for evaluating the performance of nurses in patient advocacy, develop strategies for enhancing patient advocacy, and improve the safety and quality of nursing care in the community and healthcare system. (shrink)

Caring for unrepresented patients encompasses legal, ethical, and moral challenges regarding decision-making, consent, the patient’s values, wishes, best interest, and the healthcare team’s professional integrity and autonomy. In this article, I consider the impact of the aging population and the effects of the social determinants of health and suggest that without preventive intervention, the number of unrepresented patients will continue to increase. The health, social, and legal risk factors for becoming unrepresented require a multidisciplinary response. Medical-Legal Partnerships (MLPs) bring (...) healthcare and legal professionals together to address risk factors and health-harming legal needs. The article discusses the role of MLPs in identifying at-risk individuals, providing preventive interventions, and providing support. I make recommendations and conclude that proactive MLPs offer a sustainable approach to the ethical challenges in caring for unrepresented patients by providing interventions to prevent individuals from becoming unrepresented. (shrink)

AimsThis study evaluates a protocol for early, routine ethics consultation for patients on extracorporeal membrane oxygenation to support decision-making in the context of clinical uncertainty with the aim of mitigating ethical conflict and moral distress.MethodsWe conducted a single-site qualitative analysis of EC documentation for all patients receiving ECMO support from 15 August 2018 to 15 May 2019. Detailed analysis of 20 ethically complex cases with protracted ethics involvement identifies four key ethical domains: limits of prognostication, bridge to nowhere, burden of (...) treatment and system-level concerns. There are three subthemes: relevant contextual factors, the role of EC and observed outcomes. Content analysis of transcripts from interviews with 20 members of the multidisciplinary ECMO team yields supplemental data on providers’ perceptions of the impact of the early intervention protocol.ResultsLimited outcome data for ECMO, unclear indications for withdrawal, adverse effects of treatment and an obligation to attend to programme metrics present significant ethical challenges in the care of this patient population. Upstream EC mitigates ethical conflict by setting clear expectations about ECMO as a time limited trial, promoting consistent messaging among multiple services and supporting surrogate decision-makers. When ECMO becomes a ‘bridge to nowhere’, EC facilitates decision-making that respects patient values yet successfully sets limits on non-beneficial use of this novel therapy.ConclusionData from this study support the conclusion that ECMO poses unique ethical challenges that necessitate a standardised protocol for early, routine EC—at least while this medical technology is in its nascent stages. (shrink)

BackgroundThe healthcare system is among the institutions operating under the most challenging conditions during the period of outbreaks like pandemic which affects the whole world and leads to deaths. During pandemics that affect the society in terms of socioeconomic and mental aspects, the mental health of healthcare teams, who undertake a heavy social and work load, is affected by this situation.AimThis research was conducted with the aim of determining the effect of stress, anxiety, and burnout levels of healthcare professionals caring (...) for COVID-19 patients on their quality of life.MethodThe sample of the study consisted of a total of 240 healthcare professionals, determined by random sampling method among the healthcare professionals working in pandemic hospitals in Tokat city center, Turkey. Perceived Stress Scale, Spielberger State-Trait Anxiety Inventory, Maslach Burnout Inventory and Quality of Life Scale were used in the study conducted in the relational screening model.FindingsWhile the stress, trait anxiety, and quality of life mean scores of healthcare professionals who were female, married and had children were higher than the other groups, high, moderate, negative, and positive correlations were found among all variables.ConclusionThe research concluded that the stress, anxiety, and burnout of healthcare workers caring for COVID-19 patients affected their quality of life. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Positive Change in Perception and Care for a Difficult PatientMelissa CavanaughIf you asked any healthcare professional if they had ever cared for a difficult patient, I am certain the answer would be a resounding "Yes!" I have encountered many over my forty-two years as an RN. The story of Ms. E. is one of exceptional challenge and, I hope, success.I met Ms. E. in 2012 when I (...) took a nursing position in an outpatient primary care Geriatric Clinic. The clinic was located within an inner city, Level 1 Trauma health system whose mission is to care for the underserved. This organization had cared for the most vulnerable in the area for decades. The clinic model is unique in that it provides a "one-stop shop" for the common medical needs of the older adult. Other specialties, including podiatry, rheumatology, dementia care, and stroke, held appointments in this clinic area. The supporting staff team members assisted in each of these clinics, leading them to interact with the same patients frequently.Most of my previous experiences had been in inpatient units with a quick turnover of patients. There was no time or need to develop a long-term relationship with the patients in these settings. However, the comprehensive services found in this clinic coupled with the low staff turnover, led to a stable group of seniors receiving care in this office. Many of these individuals had been attending this clinic for over twenty years.I heard about Ms. E. before I ever met her. She was well known to the clinic team as a "problem" patient. The general response when she was on the schedule was eye rolling and audible moans. I soon learned that in addition to her scheduled visits, she would randomly appear outside the full glass interior doors. She would hover in the area, tapping on the glass to get the attention of a staff member. She did not hesitate to interrupt staff and other patients to make her needs known when she was in the exam room hallway. Often team members would scatter and hide to avoid dealing with her. If she was not in the building, she was on the triage line with a question or physical complaint. To complicate matters even further, her husband was our patient as well, and they always attended appointments together.Ms. E. suffered from common geriatric chronic diseases such as hypertension, diabetes, and osteoarthritis. Her morbid obesity complicated her diagnoses. Though she was able to safely ambulate with an assistive device such as a cane or walker, she routinely used a motorized chair. She and her husband admitted visiting fast food restaurants often even though they had met with a dietician for counseling on several occasions. They often requested help obtaining medications, yet related stories about visiting the local casino. Ms. E. spoke with a small, weak voice that added to the countenance of helplessness and pity. Unfortunately, these behaviors of noncompliance, attention seeking, and dependency on others extended to her immediate community, and she is estranged from family and friends who may have been a source of support to her. [End Page E1]Ms. E.'s appointments were scheduled at the end of the day due to the expectation and pattern of the extended time they would take. No matter her expressed concerns or needs, our recommendations and interventions were never enough. She continually questioned the assessment information and did not want to accept the education and orders given as the correct response to her problems. As one can see, her appointments could be exhausting!Ms. E. certainly deserved the best and most comprehensive care available from our team. Developing a more therapeutic relationship for her within the clinic became a priority for me. However, it was a daunting task to provide this level of care and to convince her that she deserved and was receiving such care. She presented a laundry list of characteristics that could lead to biases from the staff. Overcoming such individual biases toward her may be a barrier as well. These included her obesity, her lack of initiative, her self-centered behaviors, and her constant need for attention.As healthcare professionals... (shrink)

The biopsychosocial model is characterized by the systematic consideration of biological, psychological, and social factors and their complex interactions in understanding health, illness, and health care delivery. This model opposes the biomedical model, which is the foundation of most current clinical practice. In the biomedical model, quest for evidence based medicine, the patient is reduced to molecules, genes, organelles, systems, diseases, etc. This reduction has brought great advances in medicine, but it lacks a holistic view of the person. (...) To solve the problem, we propose an early team based approach where the primary care physician leads a group of people that can help her/him address the psychosocial issues while she/he attends to the biomedical issues. This article addresses one case where the clinical ethicist facilitating a team based biopsychosocial model for the care of a patient worked as a bridge between the primary team, the critical care team, and the psychosocial team to advance the argument that good communication among the groups can lead to a true biopsychosocial model where the collaboration of the social worker, psychologist, chaplain, ethicist and the different medical teams can improve the overall patient experience. (shrink)