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

Background: Body touch and close physical proximity are inevitable in some healthcare procedures and can evoke feelings of shame, humiliation, and anger in patients. Given the increasing recognition of human dignity, exploring the occurrence of these negative emotional experiences and identifying mechanisms for their prevention are crucial.Aim: To develop and define the concept of “patient’s sexual dignity discomfort.” Design: A hybrid model of concept development was utilized.Methods: In the theoretical phase, a scoping review was conducted to establish a working (...) definition of patient’s sexual dignity discomfort. This definition was refined and validated using qualitative data collected during the fieldwork phase. In the analytical phase, a final conceptual model of patient’s sexual dignity discomfort was proposed by integrating findings from both the theoretical and fieldwork phases.Ethical considerations: All participants completed an informed consent process, and interviews were conducted via Zoom or phone by a certified psychiatric nurse to ensure confidentiality, anonymity, and comfort.Results: Four themes describing attributes of patient’s sexual dignity discomfort were explored: experiencing shame and embarrassment, vulnerability-induced loss of control, dehumanization and objectification, and uncertain sexual autonomy. Patient’s sexual dignity discomfort occurs when patients perceive care procedures as sexually inappropriate or as involving unnecessary sexual activity, particularly when healthcare providers display unprofessional attitudes or when patients lack consent or are not mentally prepared for the procedure because of insufficient information. This discomfort leads patients to refuse or avoid healthcare treatments and prioritize finding better healthcare services over their health. It can also prompt providers to avoid patients, resulting in a compromised quality of care and poor health outcomes.Conclusions: Patient’s sexual dignity discomfort poses a significant threat to the quality of patient care and preservation of dignity. Nurses can trigger this intentionally or unintentionally, highlighting the need for comprehensive education and training to prevent it. (shrink)

This book provides the reader with a theoretical and practical understanding of two health care delivery models: the patient/child centred care and family-centred care. Both are fundamental to caring for children in healthcare organizations. The authors address their application in a variety of paediatric healthcare contexts, as well as the ethical and legal issues they raise. Each model is increasingly pursued as a vehicle for guiding the delivery of health care in the best interests of children. Such models of health (...) care delivery shape health care policies, programs, facility design, resource allocation decisions and day-to-day interactions among patients, families, physicians and other health care professionals. To maximize the health and ethical benefits these models offer, there must be shared understanding of what the models entail, as well as the ethical and legal synergies and tensions they can create. This book is a valuable resource for paediatricians, nurses, trainees, graduate students, practitioners of ethics and health policy. (shrink)

Influential holistic analyses of patient perspectives assume that the concepts that patients associate with medical terms are formed by their total social and cultural contexts. Holistic analyses presuppose conceptual role semantics in the sense that they imply that a medical term must have the same role for a nurse and a patient in order for them to associate the same concept with the term. In recent philosophy of mind, social externalism has emerged as a non‐holistic alternative to conceptual role (...) theories. According to social externalism, a nurse and a patient express the same concept by a term if they both have a minimal or better understanding of the term. Three arguments in favour of social externalism are presented in connection with nurse–patient interaction. The first concerns successful communication, the second focuses on belief reports made by patients and the third centres on the need for including medical terms in medical discourse. Finally, the practical implications of the arguments are clarified. The most important of these is that, in cases of misunderstanding, a nurse should not conform to a patient's idiosyncratic understanding, but instead correct the mistaken applications of the term in question. (shrink)

Providing a groundbreaking approach to reinventing health care, this book is a practical guide to placing patient healing back at the center of the hospital's mission. Drawing on a wealth of practical experience, the authors show health care professionals how to decrease costs and improve quality by restructuring hospital services around patients and their needs and by utilizing design and architecture to enhance the healing environment. Using the core concepts of systems theory, extensive research, and lessons from pioneering hospitals, (...) they present state-of-the-art health care practices that heal as well as cure. (shrink)

HLDING A‐G and HEGGDAL K. Nursing Inquiry 2012; 19: 345–356 Patients’ experiences of health transitions in pulmonary rehabilitationPeople who live with chronic obstructive pulmonary disease (COPD) experience major changes in health. Coping with the illness and caring for themselves places extensive demands on them. Thus, pulmonary rehabilitation (PR) is recommended as a means to facilitate healthy transitions in everyday life with COPD. This study explores the experience of patients with COPD in terms of their transitions in health during (...) and after PR. The research was inspired by interpretive phenomenology. Thirty‐three individual qualitative interviews were conducted with eighteen patients recruited from Norwegian PR units. A thematic analysis of the interviews was performed. The interviewees described participation in PR as a time of increasing awareness of opportunities for health and well‐being with strengthened hope. The year following PR was dominated by their ongoing challenge to acknowledge limitations and explore opportunities in everyday life. Continuation of healthy transitions was facilitated by peer and professional support. The study highlights the personal resources that patients with COPD have access to in order to promote their own health. The study also highlights their vulnerability during illness and rehabilitation. The findings critique time‐limited PR and support the current trends towards patient‐centred rehabilitation efforts that incorporate user involvement and self‐management education. (shrink)

Patient preference predictors (PPPs) promise to provide medical professionals with a new solution to the problem of making treatment decisions on behalf of incapacitated patients. I show that the use of PPPs faces a version of a normative problem familiar from legal scholarship: the problem of naked statistical evidence. I sketch two sorts of possible reply, vindicating and debunking, and suggest that our reply to the problem in the one domain ought to mirror our reply in the other. The (...) conclusion is thus conditional: if we think the problem of naked statistical evidence is a serious problem in the legal domain, then we should be concerned about the symmetrical problem for PPPs. (shrink)

This paper examines patient preparation and perceived outcomes of treatment given by the popular Brazilian Spiritist healer, Dr. Fritz. The data utilized include the results of 40 personal interviews of Spiritist patients conducted by the author during a seven month stay in Fortaleza, Brazil, plus subsequent follow-up information. The study finds that a clear majority of the patients expressed belief that their treatments were successful. Certain trends in the types of illnesses for which the Spiritist surgeries appear to (...) have greater success are also suggested. The author stresses the strength, sophistication, and appropriateness of the healing system in its cultural context and the extensive use of powerful symbolism in both the ritual preparations and the surgeries themselves as key factors in the healing system's success. The findings likewise have clear theoretical implications for the current literature on symbolic healing systems in general. (shrink)

Patient and public involvement (PPI) has gained widespread support in health research and health policy circles, but there is little consensus on the precise meaning or justifications of PPI. We argue that an important step towards clarifying the meaning and justification for PPI is to split apart the familiar acronym and draw a distinction between patient and public involvement. Specifically, we argue that patient involvement should refer to the practice of involving individuals in health research or policy on the basis (...) of their experience with a particular condition, while public involvement should refer to the practice of involving individuals in health policy or research based on their status as members of a relevant population. Analyzing cases from the UK, Australia, and the USA, we show how our proposed distinction can deliver much needed clarity to conversations on PPI, while guiding the development and evaluation of future PPI‐based policies. (shrink)

Wish to die statements are becoming a frequent phenomenon in terminally ill patients. Those confronted by these statments need to understand the complexity of such wishes, so they can respond competently and compassionately to the requests. If misunderstood, the statements can be taken at face-value and the practitioner may not recognise that a patient is in fact experiencing ambivalent feelings at the end of life, or they may misinterpret the expressed wish to die as a sign of clinical depression. (...) Public debate about the morality and ethics of various end-of-life care options has exploded in recent years. However, it has never been sensitive to the finer aspects of clinical reality or the experiences of patients. The Patient's Wish to Die: Research, Ethics, and Palliative Care brings together that reality and the patient's voice, combining them with different research approaches. It presents the best available knowledge and research methodologies about patients' wishes at the end-of-life, together with a series of ethical views and a discussion about the clinical implications for palliative care. The book presents material in an open and unbiased manner whilst remaining sensitive to the spiritual and existential dimensions of dying, and to the different cultural views that provide meaning to the individual. Written by the best specialists and ethics scholars from around the world, including palliative care practitioners and end-of-life scholars from countries where assisted dying practices are legalized and from those where it isn't, The The Patient's Wish to Die: Research, Ethics, and Palliative Care will prove essential reading for all those working or studying in the field of palliative care. (shrink)

Caring for the competent, fragile, elderly patient at the end of life is becoming increasingly challenging. This case explores several ethical areas of concern that arise when caring for patients who have written durable powers of attorney for health care decisions and face life or death choices. Areas covered are informed consent with the elderly patient, the family's right to be involved in decision-making, futility of treatment, and the nurse's role as patient advocate during times of difficult decision-making. Recommendations (...) for increased nursing intervention during these times are incorporated. Les soins des personnes âgés, fragiles mais toujours compétentes et dont la vie touche à sa fin, posent des problèmes de plus en plus urgents. Cet article discute de plusieurs aspets qui se manifestent dans les soins des malades ayant écrit des mandats concernants leurs soins et qui doivent maintenant prendre des décisions graves concernant la vie ou la mort. Les aspets dont il s'agit dans cet article sont: le consentement informé des personnes âgés: le droit de la famille de participer à la décision; les traitements inutiles; et le rôle des infirmiers/ères pour plaider leur cause pendant des moments difficles de prises de décisions. Des recommendations pour de plus importantes interventions infirmières sont comprises. Die Pflege der geistig kompetenten aber hinfälligen Personen im hohen Alter stellt immer grössere Anforderungen. Dieser Artikel untersucht verschiedene ethische Aspekte, die bei der Pflege von Patienten, die eine schriftliche Vollmacht über medizinische Behandlung ausgestellt haben für ihre Pflege und jetzt Entscheidungen über Leben oder Tod treffen müssen. Der Artikel umfasst folgende Bereiche: informierten Zustimmung des Patienten, das Mitbestimmungsrecht der Familie, Zwecklosigkeit der Behandlung, und die Rolle des Pflegepersonals als Fürsprecher der Patienten bei schwierigen Entscheidungen. Empfehlungen für eine grössere Beteiligung oder Mitbestimmung des Pflegepersonals in diesen Fällen sind eingeschlossen. (shrink)

Use of patient clinical photographs requires specific attention to confidentiality and privacy. Although there are policies and procedures for publishing clinical images, there is little systematic evidence about what patients and health professionals actually think about consent for publishing clinical images. We investigated the opinions of three stakeholder groups at 3 academic healthcare institutions and 37 private practices in Croatia. The questionnaire contained patient photographs with different levels of anonymization. All three respondent groups considered that more stringent forms of (...) permission for were needed identifiable photographs than for those with higher levels of anonymization. When the entire face was presented in a photo only 33% of patients considered that written permission was required, compared with 88% of the students and 89% of the doctors. Opinions about publishing patient photographs differed among the three respondent samples: almost half of the patients thought no permission was necessary compared with one-third of students and doctors. These results show poor awareness of Croatian patients regarding the importance of written informed consent as well as unsatisfactory knowledge of health professionals about policies on the publication of patients’ data in general. In conclusion, there is a need for increasing awareness of all stakeholders to achieve better protection of patient privacy rights in research and publication. (shrink)

Patients and their family members may become highly interdependent as patients near the end of life. To best help these patients, healthcare providers can try to become a member of the patient/family team. By becoming a member, careproviders can improve patients’ and family members’ access to medical information, more effectively offer advice, and assure patients and family members that they can still choose to do what they think is best.

In August 2001, the Israeli Ministry of Health issued its Limitation of Smoking in Public Places Order, categorically forbidding smoking in hospitals. This forced the mental health system to cope with the issue of smoking inside psychiatric hospitals. The main problem was smoking by compulsorily hospitalized psychiatric patients in closed wards. An attempt by a psychiatric hospital to implement the tobacco smoking restraint instruction by banning the sale of cigarettes inside the hospital led to the development of a black (...) market and cases of patient exploitation in return for cigarettes. This article surveys the literature dealing with smoking among psychiatric patients, the role of smoking in patients and the moral dilemmas of taking steps to prevent smoking in psychiatric hospitals. It addresses the need for public discussion on professional caregivers’ dilemmas between their commitment to uphold the law and their duty to act as advocates for their patients’ rights and welfare. (shrink)

Engaging patients in research conduct and agenda setting is increasingly considered as an ethical imperative, and a way to transcend views of patients as passive subjects by fostering their empowerment. However, patient engagement in research is still an emerging approach with debated definitional and operational frameworks. This song addresses the sometimes difficult encounter and elusive mutual understanding between researchers and patients. “What is PER?” is an impressionistic illustration of the challenges and issues that can be found in (...) the universe of patient engagement in research. (shrink)

In Pakistan, as in many non‐Western cultures, decisions about a patient's health care are often made by the family or the doctor. For doctors educated in the West, the Pakistani approach requires striking a balance between preserving indigenous values and carving out room for patients to participate in their medical decisions.

In this essay, the author reflects on his development as a physician by recounting two patient narratives of patients he cared for as a third year medical student. In the process of telling these stories of sickness, the author also provides a window on medical practice in the 1980’s in an academic medicine center and how practices have changed. Decades before what has been dubbed “narrative medicine,” the author learned the power of words to shape relationships and promote professional (...) formation. (shrink)

As a science and practice of intervention and control, medicine is concerned with cure and care, the promotion and protection of health, and the prevention of maladies and human suffering. This wide-ranging task is accomplished through medical practice and medical research, though no sharp boundary between them can be drawn. A widespread misconception about medicine has it that medicine is concerned with illness and disease. However, the subject of medicine is the patient, i.e., Homo patiens, but not illness or disease, (...) with the ends being directed toward the relief, prevention of human suffering, and saving human life. Accordingly, medicine needs a theory of the patient first of all. Nosology and pathology as studies of illness and disease may be viewed as elements of such a theory of the Homo patiens. Seen from this perspective, clinical research and practice are to be based on the question: What is a patient? That is, what characteristics distinguish a patient from a non-patient? The present chapter is concerned with this question. The inquiry into what a patient, i.e., Homo patiens, is, intersects with anthropology that is concerned with the question of what is a human being? This is the fundamental philosophical question of medicine because, as an experimental and diagnostic-therapeutic discipline, it undertakes momentous interventions in human life. It therefore needs an image of the human being so as to ascertain whether medical interventions are in accord with, or contravene, that image. For example, it is a legitimate question to ask whether the transplantation of animal cells, tissues, and organs into humans, i.e., xenotransplantation, or whether the designing of offspring by genetic engineering, is morally permissible. Since anthropology is basically a philosophical endeavor, medicine at its foundations turns out to intersect with philosophy. We shall consider the patient as a bio-psycho-social agent who is suffering or whose life is threatened by some occurrences inside or outside of her body, usually called diseases, pathogenic environments, etc. Our aim is to understand what these occurrences may look like and how they may be conceptualized, systematized, recognized, causally analyzed, and controlled. Thus, our discussion consists of the following five sections: 7.1 The Suffering Individual; 7.2 The Bio-Psycho-Social Agent; 7.3 Health, Illness, and Disease; 7.4 Systems of Disease; 7.5 Etiology (= Science of Clinical Causation). (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)

COVID-19 Pandemic might be considered as a catalyst for transformation in healthcare experience via the use of video consultation as a method for telemedicine. The aim of our qualitative study is to understand the patient perception of video consultations in telemedicine, which has been used by a single pulmonologist in only one university hospital in Turkey since the first three months of the pandemic. Research findings are essential when it comes to a more effective and widespread future use of telemedicine, (...) as it focuses on patient experience about a medical technology that is newly introduced. Totally 30 patients were randomly chosen and interviewed who get healthcare support via telemedicine. A semi-structured questionnaire was used to learn the experiences and opinions of the interviewees. The expressions of the patients highlight some advantages of using telemedicine such as being free from risk of contagion caused by exposure in the hospital, being able to save time and money while reaching to the physician online whenever needed, and success in technical details even though they were experiencing it for the first time. A very few of the patients are feeling discomfort to be in front of the screen. Almost all patients are applicants to suggest to other individuals the system they used, in conditions to be appropriate, and continuity after the pandemic period. Since the pandemic has propagated from one patient, the worldwide implementation of telemedicine might be catalyzed by following in the footsteps of the sporadic examples of decisiveness nourished from patient experiences. (shrink)

It describes and explains the patient-centered model examining and evaluating qualitative and quantitative research. It comprehensively covers the evolution and the six interactive components of the patient-centered clinical method, taking the reader through the relationships between the patient and doctor and the patient and clinician. All the editors are professors in the Department of Family Medicine at the University of Western Ontario, London, Canada.

Respecting privacy and patients’ satisfaction are amongst the main indicators of quality of care and one of the basic goals of health services. This study, carried out in 2007, aimed to investigate the extent to which patient privacy is observed and its correlation with patient satisfaction in three emergency departments of Tehran University of Medical Science, Iran. Questionnaire data were collected from a convenience sample of 360 patients admitted to emergency departments and analysed using SPSS software. The results (...) indicated that, according to 50.6% of the patients, the extent to which their privacy was respected was described as either ‘weak’ or ‘average’. Spearman’s coefficient indicated a significant correlation between respecting privacy and the patients’ satisfaction about the various aspects of privacy studied. Considering the levels of privacy observed together with the patients’ degree of satisfaction, it is imperative that clinical professionals address both aspects from conceptual and practical viewpoints. (shrink)

There has been considerable public debate on a range of complementary health practices throughout the western world, perhaps especially in Australia, United States and Europe. Most often, the research critique of these practices is restricted to quantitative or non-user qualitative research methodologies. Consequently, there is a significant gap in the research profile of complementary health services that needs to be addressed particularly in view of the rapid and ongoing increase in the use of complementary services, even in the face of (...) sometimes adverse media publicity. This paper demonstrates the contribution that phenomenologically based research can make to fill this lacuna by explicating, in detail, the client experience of a complementary health practice. The paper explores patient experience of a ginger compress, as applied by anthroposophically trained nurses, to demonstrate various therapeutic effects. Four key themes emerged including an increase in warmth and internal activity in the major organs of the body, changes in thought-life and sensory perception along with a greater sense of well-being and self-focus with the perception of clearer personal boundaries. These themes, emerging from a patient sample in New Zealand, compared favourably to the Filderklinik Study completed in 1992 in a large German state hospital. Indo-Pacific Journal of Phenomenology , Volume 4, Edition 1 July 2004. (shrink)

According to Epicurus, philosophy’s sole task is to ensure the well-being of the soul. Human souls are often riddled with diseases; the most serious are the fear of the gods and the fear of death. Thus, the Epicureans offered several arguments designed to demonstrate that, for instance, “death is nothing to us,” and should therefore not be feared. Since their creation there has been much discussion, both in antiquity and by contemporary philosophers, about these arguments. In this thesis, I argue (...) that Epicurean philosophical arguments are patient-relative; they necessarily adapt themselves so as to be therapeutically effective for their intended audience. The end result is that when we evaluate Epicurean philosophical arguments, we must do so in light of the audience for whom they were intended. (shrink)

While euthanasia and assisted suicide have been the subject of continuing public debate, few studies have examined the attitudes of relevant patient groups. This study systematically reviews the research literature on patients’ attitudes from 1989 to 2003, to i) identify the number of studies, ii) evaluate study methods and measures, and iii) examine prevalence of favourable attitudes. A systematic search was undertaken across five databases. Methods of the 21 studies identified varied considerably. General support for euthanasia and assisted suicide (...) was substantial across patient groups, with lower support for these as a personal option. The cancer / terminally ill / palliative care patient group had the lowest median general support for euthanasia (60% [IQ1=47, IQ3=65]) and assisted suicide (50% [IQ1=38, IQ3=71]), while the general/older/younger patient group had the lowest median personal preference for these (18% [IQ1=14, IQ3=27]). The effect of question context on level of support was unclear, due to the variety and number of contexts used across questions. There is still work that needs to be done in this controversial area before any robust conclusions can be made concerning the attitudes of patients to euthanasia and assisted suicide, and the adoption of a minimum set of standard questions would enhance this work. (shrink)

Although informed consent is an integral part of clinical practice, its current doctrine remains mostly a matter of law and mainstream ethics rather than empirical research. There are scarce empirical data on patients’ perceived purpose of informed consent, which may include administrative routine/courtesy gesture, simple honest permission, informed permission, patient-clinician shared decision-making, and enabling patient’s self decision-making. Different purposes require different processes.

Phenomenology gives rise to certain ontological considerations that have far-reaching implications for standard conceptions of patient autonomy in medical ethics, and, as a result, the obligations of and to patients in clinical decision-making contexts. One such consideration is the phenomenological reduction in classical phenomenology, a core feature of which is the characterisation of our primary experiences as immediately and inherently meaningful. This paper builds on and extends the analyses of the phenomenological reduction in the works of Husserl, Heidegger, and (...) Merleau-Ponty in order to identify and explain its implications for our current understanding of the principle of respect for patient autonomy and the norms of clinical decision making. (shrink)

Being a patient and living a life -- Clinical space and traits of healing -- False starts and frequent failures -- Three journeys : A.'Ibuprofen and love', B. 'Staying tuned up', C. 'We all want the same things' -- Being a patient : the moral field -- Rethinking healthcare ethics : the patient's moral authority.

In this thoughtful article analyzing a UK court decision upholding a patient’s refusal of dialysis, the authors make the provocative but ultimately unpersuasive argument tha...

The aim of this project was to study the way in which patients’ rights are being exercised in everyday hospital practice in Greece. Data were collected by using questionnaires and structured interviews with 600 patients. These patients were found to ignore the fact that special regulations exist regarding their rights. They considered their right to information was being respected, albeit to different degrees. Many patients allowed their doctors to make decisions. The right to confidentiality was not (...) considered as a major priority by these patients because they doubted its applicability. They hesitated to protest when their rights were being violated. They thought that the most effective way of protecting their rights is either through the existence of someone with specialized knowledge or an internal hospital committee. These Greek patients appeared to be relatively satisfied with the way in which their rights were being exercised in hospital. However, a number of improvements could increase patient satisfaction regarding this issue. (shrink)

In 1990, I voiced strong doubts about a bill entitled the Patient Self-Determination Act, which had been introduced in the U.S. Senate by John Danforth and Daniel Patrick Moynihan. I hoped to see it defeated. In 1991, after the bill had become a small part of a massive status adopted in the waning hours of the 101st Congress, I devoted countless hours to its implementation. I wanted to see it succeed. Why the change?

Introduction: The decision of “do not attempt resuscitation” in the event of cardiopulmonary arrest is usually made when the patients are critically ill and cannot make an informed choice. Although, various professional bodies have published guidelines, little is know about the patients’ own views regarding DNAR discussion.Aim: The aim of this study was to determine patients’ attitudes regarding discussing DNAR before they are critically ill.Methods: A prospective study was performed in a general out patients department. A (...) questionnaire was distributed to consecutive outpatients along with an explanatory leaflet in the adult outpatient clinic.Results: 364 patients completed the questionnaire . 90% of respondents wanted all patients to be asked regarding DNAR decision at some point during a hospital admission. The majority would not find a DNAR discussion distressing. Only 10% would find it upsetting, however, 48% of these still wanted a discussion. 37% of respondents wanted to discuss DNAR decisions on admission; 32% in outpatients; 17% at consent for surgery, 14% when they are critically ill. 87% of respondents would not object to their relatives being involved in making decisions about their resuscitation status. However, only 12% of the subjects in the study had been involved in discussing the resuscitation status of a relative and 21% would not be comfortable to discuss a relative’s resuscitation status. Although 33% of patients preferred their resuscitation status to simply be documented within their clinical notes, 77% wanted it to be more easily accessible.Conclusions: This study suggests that contrary to current practice most patients want to discuss their DNAR status prior to becoming critically ill. This includes half of the small number that find it distressing to discuss. Although most patients are comfortable with relatives being involved in discussing DNAR, a significant proportion do not want their relatives to be asked. Furthermore, once a decision has been made, the majority of patients want it to be more accessible than current practice allows. (shrink)

Abstract“Sit down,” Mr. R demanded. “I've got something to say to you.” I shot the medical student a querying glance as we simultaneously sunk into our chairs. He continued, “You don't know me, and I got some things to tell you.”I thought I knew Mr. R, and I certainly had some idea of what he was all about. But then he called to me. In his summoning, Mr. R arrested all my preconceived ideas about him. And as the medical student (...) and I began to understand him better, we wanted to know more. We began to engage him more deeply. In the subsequent days, caring for him somehow felt easier, akin to the care one gives a distraught friend rather than a difficult patient. (shrink)

This paper concerns itself with the concept of diminished competence with particular regard to the problems and options that mentally compromised patients raise for medical management. It proceeds through three general stages: (1) a restatement of the sense and grounds of the new patients' rights ethos which the existence of such patients calls into question; (2) a consideration of what expanded responsibilities and tactics physicians should embrace to protect and enhance such patients' autonomy; and (3) the (...) standards, criteria, and mechanisms by which paternalistic interventions might be justified in cases when the diminishment remains too substantial to merit acceptance of the patients' directives. (shrink)

The use of patient restrictions (e.g. involuntary admission, seclusion, restraint) is a complex ethical dilemma in psychiatric care. The present study explored nurses’ (n = 22) and physicians’ (n = 5) perceptions of what actually happens when an aggressive behaviour episode occurs on the ward and what alternatives to seclusion and restraint are actually in use as normal standard practice in acute psychiatric care. The data were collected by focus group interviews and analysed by inductive content analysis. The participants believed (...) that the decision-making process for managing patients’ aggressive behaviour contains some in-built ethical dilemmas. They thought that patients’ subjective perspective received little attention. Nevertheless, the staff proposed and appeared to use a number of alternatives to minimize or replace the use of seclusion and restraint. Medical and nursing staff need to be encouraged and taught to: (1) tune in more deeply to reasons for patients’ aggressive behaviour; and (2) use alternatives to seclusion and restraint in order to humanize patient care to a greater extent. (shrink)

The ethical pre-condition of randomised controlled trials is, at present, the presence of equipoise. This refers to an opinion of the investigator that there is uncertainty as to the merits of the treatments being compared. It is argued that since the decision to enrol is the potential subject’s, the investigator’s opinion is not ethically relevant. It is proposed instead that equipoise be patient-centred, and that a trial is in equipoise for a patient when enrolling gives them the same chance of (...) a good outcome as not enrolling. It is shown that trial enrolment is normally easily the best strategy for achieving a good outcome, and that trials currently thought to be unethical may be in patient-centred equipoise. This is so for three reasons: (1) patients in trials receive superior care, (2) trial enrolment minimises the risk of being a victim of a therapeutic disaster and (3) health professionals make mistakes, and a 50% chance of receiving the worse treatment until a trial reports is always better than any chance of receiving the worse treatment indefinitely. It is concluded that so long as the standard of professional conduct is the furtherance of patients’ objective interests randomised controlled trials are ethical. (shrink)

The current debate that surrounds the issue of patient rights and the transformation of health care, social insurance, and reimbursement systems has put the topic of patient responsibility on both the public and health care sectors' agenda. This climate of debate and transition provides an ideal time to rethink patient responsibilities, together with their underlying rationale, and to determine if they are properly represented when being called `patient' responsibilities. In this article we analyze the various types of patient responsibilities, identify (...) the underlying motivations behind their creation, and conclude upon their sensibleness and merit. The range of patient responsibilities that have been proposed and implemented can be reclassified and placed into one of four groups, which are more accurate descriptors of the nature of these responsibilities. We suggest that, within the framework of a free-market system, where health care services are provided based on the ability to pay for them, none of these can properly be justified as a patient responsibility. (shrink)

The ability to differentiate between what is just and what is unjust may be considered as the precondition to demand one's own rights. Starting from this point, this research was carried out to describe the level of awareness of patients concerning their rights. The main hypothesis was: the higher the socioeconomic and cultural level of patients, the higher is their awareness of their rights. This research was conducted in one of the state hospitals in Turkey in 1998. It (...) is a descriptive study carried out on 128 inpatients in medical and surgical wards. The data were collected by a questionnaire, which included questions on the rights of patients and gave sample cases. The sample cases were designed by referring to the World Health Organization Declaration on the Promotion of Patients' Rights in Europe. Only 23% of the participants were able to recognize patient rights, while 32% could not; the majority (45%) were undecided in recognizing patient rights. The awareness scores were statistically significantly different for educational level categories (F = 5.84; p<0.001). A continuously declining trend was observed for patient rights awareness scores from the highest educational level to the lowest. This partly proves the hypothesis of the research. However, the awareness scores were not significantly different for the other background variables (p>0.05). Most strikingly, 38% of the patients had no idea about their diagnosis and 63% of those who had undergone surgery did not know why they had had the operation. (shrink)

A Turkish patient with AIDS attempted to commit suicide. Turkey is one of the countries where AIDS education in society and for health personnel has started rather late. This article documents what this patient, his sister and his friends, who helped him to survive for a short while, experienced in the hospital environment. This is a real case history and should be considered from various aspects because suicide was attempted by a person with AIDS who was near the terminal stage. (...) The patient’s friends made a remarkable effort to help him to survive. They were unsure about what to do because they had not respected his wishes and they experienced deep alienation because of the extremely negative attitude of the medical staff. (shrink)

It is common to distinguish moral rules, reasons, or values that are agent-relative from those that are agent-neutral. One can also distinguish moral rules, reasons, or values that are moment-relative from those that are moment-neutral. In this article, I introduce a third distinction that stands alongside these two distinctions—the distinction between moral rules, reasons, or values that are patient-relative and those that are patient-neutral. I then show how patient-relativity plays an important role in several moral theories, gives us a better (...) understanding of agent-relativity and moment-relativity, and provides a novel objection to Derek Parfit’s “appeal to full relativity” argument. (shrink)

In this paper, I argue for a fundamentally different kind of moral luck, Patient Moral Luck (PML). Unlike traditional moral luck, PML concerns the amount of moral consideration that different moral patients — that is, creatures (including human beings) with moral status — will be owed, independent of factors in their control. PML, I argue, entails that morality itself appears to sanction and even obligate actions which, along predictable patterns, involve repeatedly failing to equally consider certain moral patients (...) - and repeatedly the same people - over sustained periods of time, through no fault of their own. And often these people will be members of groups who are already worse off through no fault of their own, thus exacerbating unjust inequalities. I defend the existence and normative puzzle of PML by introducing the notion of “moral force” - roughly, the amount of considerative weight a given moral patient is owed by some deliberating agent or group of agents. I then argue that this will vary widely between different moral patients through no fault or credit of their own. This, I claim, is inconsistent with the intuition that supports Equal Consideration principles in moral theory. I conclude by considering how we can minimize or mitigate PML without a radically revisionary normative theory. (shrink)