"Struck down by cancer with no old life to fall back on" a clinical study of illness experiences among Norwegian adolescent and young adult cancer survivors investigating the ethical implications of their illness narratives.

BACKGROUND: Cancer is a leading cause of death among people 15-24 years of age. Increasing numbers of cancer patients survive. Extensive cancer therapy may cause wide-ranging somatic and psychosocial challenges in the lives of the survivors. Research indicates adolescent and young adult cancer (AYA) survivors need to be seen as a distinctive group of survivors having unique health care needs. The existing literature suggests the need for specific follow-up care programs addressing the challenges of AYAs and providing them access to specialized after care, as well as a need to explore AYA cancer survivors' own illness experiences. AIMS: Through the theoretical lens of narrative medicine and care ethics, our purpose was to investigate the particular challenges encountered by the AYA cancer survivors, and how they view themselves in light of their illness experiences. We ask how AYA cancer survivors are met and understood by their medical professionals? METHODS: This study applied a qualitative method using a narrative research design by collecting self-stories of illness in order to conceptualize human experiences of illness among AYA cancer survivors. Eight in-depth interviews were conducted using a narrative analysis according to the narrative plots of restitution, chaos and quest, as suggested by Arthur Frank. RESULTS: Hopelessness and a struggle to take part in the activities of daily life as survivors of cancer were revealed. Too ill to fully take part in the society, the AYA cancer survivors strive to be understood for what they are, namely young survivors. CONCLUSION: The survivors'stories reveal a moral imperative that needs to be honored by medical professionals in order to improve cancer care. Cancer survivorship may be a lifelong process necessitating long-term follow-up care. With the lack of specific care programs for AYA cancer survivors, follow-up care is provided by general practitioners or other medical professionals, who often lack expertise in the unique challenges faced by AYA survivors. Because they feel their needs are unmet and their stories not understood, the AYA survivors might experience a sense of abandonment. By adopting a care ethics and narrative medicine approach we provide medical professionals a theoretical framework to better understand and care for AYA cancer survivors. Clinical trial number is 2012/1141.

A vulnerable journey towards professional empathy and moral courage.

Background: Empathy and moral courage are important virtues in nursing and nursing ethics. Hence, it is of great importance that nursing students and nurses develop their ability to empathize and their willingness to demonstrate moral courage. Research aim: The aim of this article is to explore third-year undergraduate nursing students' perceptions and experiences in developing empathy and moral courage. Research design: This study employed a longitudinal qualitative design based on individual interviews. Participants and research context: Seven undergraduate nursing students were interviewed during or immediately following their final clinical placement. Ethical considerations: The Norwegian Social Science Data Services (NSD) approved the study. Participants were informed that their participation was voluntary and were assured confidentiality. They were informed that they could withdraw from the study at any time, without providing reasons. Findings: Affective empathy seemed to be strong among third-year undergraduate nursing students. However, they tried to handle the situations in a 'professional' way, and to balance their emotions. At the same time, they expressed how difficult it can be to show moral courage when confronted with poor patient care. In addition, they spoke about a lack of role models during clinical practice and supervision. Conclusions: Undergraduate nursing students are in a vulnerable position throughout their journey to become professional and to develop empathy and moral courage. The professional socialisation and forming of professional empathy and moral courage among nursing students, may be seen as a complex interaction of formal and hidden curriculum, where role models play an important role. We argue that the main theme 'Vulnerable students - a journey towards professional empathy and moral courage' may cover the longitudinal project as a whole. This vulnerability is something both teachers and supervisors should be aware of when following up with students in their clinical placements.

Safe and competent nursing care: An argument for a minimum standard?

There is no agreed minimum standard with regard to what is considered safe, competent nursing care. Limited resources and organizational constraints make it challenging to develop a minimum standard. As part of their everyday practice, nurses have to ration nursing care and prioritize what care to postpone, leave out, and/or omit. In developed countries where public healthcare is tax-funded, a minimum level of healthcare is a patient right; however, what this entails in a given patient's actual situation is unclear. Thus, both patients and nurses would benefit from the development of a minimum standard of nursing care. Clarity on this matter is also of ethical and legal concern. In this article, we explore the case for developing a minimum standard to ensure safe and competent nursing care services. Any such standard must encompass knowledge of basic principles of clinical nursing and preservation of moral values, as well as managerial issues, such as manpower planning, skill-mix, and time to care. In order for such standards to aid in providing safe and competent nursing care, they should be in compliance with accepted evidence-based nursing knowledge, based on patients' needs and legal rights to healthcare and on nurses' codes of ethics. That is, a minimum standard must uphold a satisfactory level of quality in terms of both professionalism and ethics. Rather than being fixed, the minimum standard should be adjusted according to patients' needs in different settings and may thus be different in different contexts and countries.

Beyond autonomy and care: Experiences of ambivalent abortion seekers.

BACKGROUND: While being prepared for abortions, some women experience decisional ambivalence during their encounters with health personnel at the hospital. Women's experiences with these encounters have rarely been examined. OBJECTIVE: The objective of this study was to explore ambivalent abortion-seeking women's experiences of their encounters with health personnel. RESEARCH DESIGN: The data were collected in individual interviews and analysed with dialogical narrative analyses. PARTICIPANTS AND RESEARCH CONTEXT: A total of 13 women (aged 18-36 years), who were uncertain of whether to terminate their pregnancies during the first trimester, were interviewed before and after they made their decisions. The participants were recruited at six Norwegian outpatient clinics. ETHICAL CONSIDERATIONS: Approval was granted by the Regional Committee for Medical and Health Research Ethics. FINDINGS: The ambivalent pregnant women sought to make autonomous decisions while simultaneously involving their closest confidants and health personnel in the process. The following three types of narratives of women's experiences with encounters with health personnel were identified: the respected women; the identified women; and the abandoned women. DISCUSSION: The findings are discussed in terms of the ambivalent pregnant woman's autonomous responsibility in considering an abortion and how her autonomy can be enabled or impaired during encounters with health personnel. CONCLUSION AND IMPLICATION: Although the women considered themselves autonomous and responsible for their final decisions, they wished health personnel were involved in their situations. The health personnel contributed by enabling or disabling the possibility of decision-making in accordance with the women's values. The findings indicate that health personnel who care for women considering abortions must be trained in dialogical competence.

Older patients with late-stage COPD: Their illness experiences and involvement in decision-making regarding mechanical ventilation and noninvasive ventilation.

AIMS AND OBJECTIVES: To explore the illness experiences of older patients with late-stage chronic obstructive pulmonary disease and to develop knowledge about how patients perceive their preferences to be taken into account in decision-making processes concerning mechanical ventilation and/or noninvasive ventilation. BACKGROUND: Decisions about whether older patients with late-stage chronic obstructive pulmonary disease will benefit from noninvasive ventilation treatment or whether the time has come for palliative treatment are complicated, both medically and ethically. Knowledge regarding patients' values and preferences concerning ventilation support is crucial yet often lacking. DESIGN: Qualitative design with a hermeneutic-phenomenological approach. METHODS: The data consist of qualitative in-depth interviews with 12 patients from Norway diagnosed with late-stage chronic obstructive pulmonary disease. The data were analysed within the three interpretative contexts described by Kvale and Brinkmann. RESULTS: The participants described their lives as fragile and burdensome, frequently interrupted by unpredictable and frightening exacerbations. They lacked information about their diagnosis and prognosis and were often not included in decisions about noninvasive ventilation or mechanical ventilation. CONCLUSION: Findings indicate that these patients are highly vulnerable and have complex needs in terms of nursing care and medical treatment. Moreover, they need access to proactive advanced care planning and an opportunity to discuss their wishes for treatment and care. RELEVANCE TO CLINICAL PRACTICE: To provide competent care for these patients, healthcare personnel must be aware of how patients experience being seriously ill. Advanced care planning and shared decision-making should be initiated alongside the curative treatment.

Undergraduate nursing students' ability to empathize: A qualitative study.

BACKGROUND: Empathy is of great importance in nursing, as it helps us to see and meet the needs of patients and hence to care for patients in an appropriate way. Therefore, it is of great importance that nursing students and nurses develop their ability to empathize. OBJECTIVE: The study aimed at gaining knowledge on what characterizes undergraduate nursing students' ability to empathize with patients during their first practice in a nursing home. In addition, the aim of the study was to investigate what nursing students think is important with regard to upholding their ability to empathize with patients in a professional way. RESEARCH DESIGN: This research has a phenomenological and hermeneutic design, based on qualitative interviews. Participants and research context: A total of 11 undergraduate nursing students participated in interviews during or right after their first practice in a nursing home. Ethical considerations: Norwegian Social Science Data Services approved the study. Participants were informed that their participation was voluntary. The participants were also assured confidentiality, and they were informed that they could withdraw from the study at any time, without providing any reasons. FINDINGS: What the findings show is that affective empathy is strong among undergraduate nursing students in their first practice. They think the emotions are important to be able to empathize, and they are afraid of becoming indifferent. At the same time, they are afraid that the feelings will hinder them from acting in a professional manner. DISCUSSION: The findings are discussed in light of previous theories on empathy, and especially perspectives on empathy, emotions, and morality. CONCLUSION: Affective empathy seems to be strong among nursing students, and this may be of great importance to be sensitive to patients' well-being. However, affective and cognitive empathy should be balanced if nurses will have to meet patients in a professional way.

Prioritising patient care: The different views of clinicians and managers.

BACKGROUND: There is little research comparing clinicians' and managers' views on priority settings in the healthcare services. During research on two different qualitative research projects on healthcare prioritisations, we found a striking difference on how hospital executive managers and clinical healthcare professionals talked about and understood prioritisations. AIM: The purpose of this study is to explore how healthcare professionals in mental healthcare and somatic medicine prioritise their care, to compare different ways of setting priorities among managers and clinicians and to explore how moral dilemmas are balanced and reconciled. Research design and participants: We conducted qualitative observations, interviews and focus groups with medical doctors, nurses and other clinical members of the interdisciplinary team in both somatic medical and mental health wards in hospitals in Norway. The interviews were recorded and transcribed verbatim. Ethical considerations: Basic ethical principles for research ethics were followed. The respondents signed an informed consent for participation. They were assured anonymity and confidentiality. The studies were approved by relevant ethics committees in line with the Helsinki Convention. FINDINGS: Our findings showed a widening gap between the views of clinicians on one hand and managers on the other. Clinicians experienced a threat to their autonomy, to their professional ideals and to their desire to perform their job in a professional way. Prioritisations were a cause of constant concern and problematic decisions. Even though several managers understood and empathised with the clinicians, the ideals of patient flow and keeping budgets balanced were perceived as more important. DISCUSSION: We discuss our findings in light of the moral challenges of patient-centred individual healthcare versus demands of distributive justice from healthcare management. CONCLUSION: The clinicians' ideals of autonomy and good medical and nursing care for the individual patients were perceived as endangered.

Apparent treatment-resistant hypertension - patient-physician relationship and ethical issues.

BACKGROUND: Poor drug adherence is a major cause of apparent treatment-resistant hypertension. As a consequence, several methods have been developed and attempted implemented in clinical practice to reveal non-adherence and to monitor drug adherence. There are, however, several hitherto unresolved ethical aspects regarding potential methods for drug monitoring in these patients. RESULTS: The most striking challenge is the balance between patient autonomy and the physician's desire for the patient to adhere to the prescribed therapy. Also, methods for monitoring must only be implemented in the treatment of well-informed and consenting patients. Major resources are used on non-adherent patients; how long the physician should encourage continuation of treatment is an important question. CONCLUSIONS: We believe that physicians should reflect and discuss these potential challenges, and that patient education, information and a solid patient-physician relationship are essential for achieving drug adherence. Methods for monitoring adherence represent, however, a useful and often necessary supplement.

Nurses' role and care practices in decision-making regarding artificial ventilation in late stage pulmonary disease.

BACKGROUND: Decisions regarding whether or not to institute mechanical ventilation during the later stages of chronic obstructive pulmonary disease is challenging both ethically, emotionally and medically. Caring for these patients is a multifaceted process where nurses play a crucial role. Research question and design: We have investigated how nurses experienced their own role in decision-making processes regarding mechanical ventilation in later stages of chronic obstructive pulmonary disease and how they consider the patients' role in these processes. We applied a qualitative approach, with six focus-group interviews of nurses (n = 26). Ethical considerations: The Regional Committees for Medical and Health Research Ethics approved the study. Voluntary informed consent was obtained. FINDINGS: The nurses found themselves operating within a cure-directed treatment culture wherein they were unable to stand up for the caring values. They perceived their roles and responsibilities in decision-making processes regarding mechanical ventilation to patients as unclear and unsatisfactory. They also experienced inadequate interdisciplinary cooperation. DISCUSSION: Lack of communication skills, the traditional hierarchical hospital culture together with operating in a medical-orientated treatment culture where caring values is rated as less important might explain the nurses' absence in participation in the decision about mechanical ventilation. CONCLUSION: To be able to advocate for the patients' and their own right to be included in decision-making processes, nurses need an awareness of their own responsibilities. This requires personal courage, leadership who are capable of organising common interpersonal meetings and willingness on the part of the physicians to include and value the nurses' participation in decision-making processes.

Attitudes towards assisted dying are influenced by question wording and order: a survey experiment.

BACKGROUND: Surveys on attitudes towards assisted dying play an important role in informing public debate, policy and legislation. Unfortunately, surveys are often designed with insufficient attention to framing effects; that is, effects on the respondents' stated attitudes caused by question wording and context. The purpose of this study was to demonstrate and measure such framing effects. METHODS: Survey experiment in which an eight-question survey on attitudes towards assisted dying was distributed to Norwegian citizens through a web-based panel. Two variations of question wording as well as two variations of question order were employed. Respondents were randomized to receive one of four questionnaire versions. RESULTS: Three thousand and fifty responses were received. There were moderate to large question wording and question order effects. A majority of Norwegian citizens favour the legalization of assisted dying for patients with terminal or chronic disease. CONCLUSIONS: Stakeholders in the assisted dying debate need to acknowledge potential framing effects, and accordingly should interpret survey results with caution. The same holds for researchers who conduct attitude surveys in the field of bioethics.

Dignity and care for people with dementia living in nursing homes.

This article presents and discusses findings from a qualitative study on how the dignity of patients with dementia is preserved or harmed when they live in a nursing home. The results build on participant observation in two nursing home wards, combined with qualitative interviews with seven relatives of patients with dementia. The most important issue for relatives was that their family member with dementia was confirmed as a relational human being. However, relatives experienced lack of resources and task-centred care as threats to confirming, relational care and to patients' dignity. Findings from participant observations confirmed this. In this article, we argue that care which focuses on the residents' personhood, combined with a relational focus, is of great importance in maintaining the dignity of people with dementia living in nursing homes.

Altruism and mature care: some rival moral considerations in care ethics.

INTRODUCTION: We discuss Carol Gilligan's original concept of mature care in the light of the altruistic approach to caring and good clinical judgment. DISCUSSION: In particular, we highlight how the concept of mature care can capture important challenges in today's nursing. Further, we illuminate how mature care might differ normatively from an altruistic approach to caring and the traditional prudential virtues in nursing. We also discuss similarities between mature care and virtue ethics. CONCLUSION: For nursing and nurses' identity, in today's health care system that is increasingly pressured to 'produce' health, we believe it is important to both developing further theories on mature care and having normative discussions about care.

Medical students' attitudes towards conscientious objection: a survey.

OBJECTIVE: To examine medical students' views on conscientious objection and controversial medical procedures. METHODS: Questionnaire study among Norwegian 5th and 6th year medical students. RESULTS: Five hundred and thirty-one of 893 students (59%) responded. Respondents object to a range of procedures not limited to abortion (up to 19%)-notably euthanasia (62%), ritual circumcision for boys (52%), assisted reproduction for same-sex couples (9.7%) and ultrasound in the setting of prenatal diagnosis (5.0%). A small minority (4.9%) would object to referrals for abortion. In the case of abortion, up to 55% would tolerate conscientious refusals, whereas 42% would not. Higher proportions would tolerate refusals for euthanasia (89%) or ritual circumcision for boys (72%). DISCUSSION: A majority of Norwegian medical students would object to participation in euthanasia or ritual circumcision for boys. However, in most settings, many medical students think doctors should not be able to refuse participation on grounds of conscience. A minority would accept conscientious refusals for procedures they themselves do not object to personally. Most students would not accept conscientious refusals for referrals. CONCLUSIONS: Conscientious objection remains a live issue in the context of several medical procedures not limited to abortion. Although most would want a right to object to participation in euthanasia, tolerance towards conscientious objectors in general was moderate or low.

Inadequate treatment for elderly patients: professional norms and tight budgets could cause "ageism" in hospitals.

We have studied ethical considerations of care among health professionals when treating and setting priorities for elderly patients in Norway. The views of medical doctors and nurses were analysed using qualitative methods. We conducted 21 in depth interviews and 3 focus group interviews in hospitals and general practices. Both doctors and nurses said they treated elderly patients different from younger patients, and often they were given lower priorities. Too little or too much treatment, in the sense of too many interventions and too much drugs, combined with too little care and comfort, was admitted as a relatively frequent yet unwanted consequence of the way clinical priorities were set for elderly patients. This was explained in terms of elderly patients not tolerating the same treatment as younger patients, and questions were raised about the quality of life of many elderly patients after treatment. These explanations were frequently referred to as medically sound decision making. Other explanations had little to do with medically sound decisions. These often included deep frustration with executive guidelines and budget constraints.

[Medical students' attitudes towards legalisation of euthanasia and physician-assisted suicide]. / Medisinstudenters holdninger til legalisering av eutanasi og legeassistert selvmord.

BACKGROUND: We wished to investigate prevailing attitudes among future doctors regarding legalisation of euthanasia and physician-assisted suicide. This issue is important, since any legalisation of these practices would confer a completely new role on doctors. MATERIAL AND METHOD: Attitudes were identified with the aid of a questionnaire-based survey among medical students in their 5th and 6th year of study in the four Norwegian medical schools. RESULTS: Altogether 531 students responded (59.5% of all students in these cohorts). Of these, 102 (19%) were of the opinion that euthanasia should be legalised in the case of terminal illness, 164 (31%) responded that physician-assisted suicide should be permitted for this indication, while 145 (28%) did not know. A minority of the respondents would permit euthanasia and physician-assisted suicide in other situations. Women and those who reported that religion was important to them were less positive than men to permitting euthanasia or physician-assisted suicide. INTERPRETATION: In most of the situations described, the majority of the students in this survey rejected legalisation. Opinions are more divided in the case of terminal illness, since a larger proportion is in favour of legalisation and more respondents are undecided.