Original Manuscript
Clarifying perspectives: Ethics case reflection sessions in childhood cancer care
Nursing Ethics 1–11 ª The Author(s) 2015 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733015570511 nej.sagepub.com
Cecilia Bartholdson, Kim Lu¨tze´n, Klas Blomgren and Pernilla Pergert Karolinska Institutet, Sweden
Abstract Background: Childhood cancer care involves many ethical concerns. Deciding on treatment levels and providing care that infringes on the child’s growing autonomy are known ethical concerns that involve the whole professional team around the child’s care. Objectives: The purpose of this study was to explore healthcare professionals’ experiences of participating in ethics case reflection sessions in childhood cancer care. Research design: Data collection by observations, individual interviews, and individual encounters. Data analysis were conducted following grounded theory methodology. Participants and research context: Healthcare professionals working at a publicly funded children’s hospital in Sweden participated in ethics case reflection sessions in which ethical issues concerning clinical cases were reflected on. Ethical considerations: The children’s and their parents’ integrity was preserved through measures taken to protect patient identity during ethics case reflection sessions. The study was approved by a regional ethical review board. Findings: Consolidating care by clarifying perspectives emerged. Consolidating care entails striving for common care goals and creating a shared view of care and the ethical concern in the specific case. The inter-professional perspectives on the ethical aspects of care are clarified by the participants’ articulated views on the case. Different approaches for deliberating ethics are used during the sessions including raising values and making sense, leading to unifying interactions. Discussion: The findings indicate that ethical concerns could be eased by implementing ethics case reflection sessions. Conflicting perspectives can be turned into unifying interactions in the healthcare professional team with the common aim to achieve good pediatric care. Conclusion: Ethics case reflection sessions is valuable as it permits the discussion of values in healthcarerelated issues in childhood cancer care. Clarifying perspectives, on the ethical concerns, enables healthcare professionals to reflect on the most reasonable and ethically defensible care for the child. A consolidated care approach would be valuable for both the child and the healthcare professionals because of the common care goals. Keywords Cancer, caregivers, ethics or moral perspectives, grounded theory, group interaction, pediatrics Corresponding author: Cecilia Bartholdson, Childhood Cancer Research Unit, Department of Women’s and Children’s Health, Karolinska Institutet, Astrid Lindgren Children’s Hospital Q6:05, 171 76 Stockholm, Sweden. Email: [email protected]
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Background Deciding on treatment levels and infringing on the child’s growing autonomy are ethical concerns in childhood cancer care.1 Deciding on treatment levels includes balancing pain relief and timing the breaking point. Infringing on the child’s growing autonomy includes limiting truth-telling and inflicting suffering in procedures when children do not cooperate.1 Several studies describe ethical issues related to continued futile treatment and consequential suffering.2–4 The medical and care perspectives on ethical issues are not always congruent with each other,1 which may lead to value conflicts in care. One explanation could be that perspectives on ethics most likely are connected to professional codes of ethics and responsibilities. Conflicting perspectives is an ethical concern in childhood cancer care that may be related to professional cultures, experience, and education, as well as personal values and moral beliefs.1 Previous research has shown that value conflicts can be handled through ethics case reflection (ECR) sessions.5 This builds on ethics relating to the systematic reflection on human values and actions and the reasons for them.6 Reflection can be defined as ‘‘careful consideration’’7 and is viewed as a key component of professional practice.8 The basic premise is that reflection involves a conscious process of thinking about a clinical situation, which leads to understanding and subsequent amendments to practice.8 This idea of reflection was applied in this project. The ECR sessions were organized as meetings involving the inter-professional team and an external facilitator and were initiated by any healthcare team member who experienced an ethical problem.9 An example of a case involving the inter-professional team could be a 5-year-old boy with a brain tumor, whose parents disagree about the available treatment alternatives. Thus, a central aim of the ECR session is to reflect on the case and to improve the quality of care within that case.10 Furthermore, ECR sessions are similar to ethics rounds, and previous research11 examined an approach to ethical reasoning, named imaginary ethics, during ethics rounds in childhood cancer care in Sweden. Imaginary ethics seeks to identify values and interests relating to the care of the patient and encourage participants to listen to alternative ethical experience. There are, however, several ways of conducting ECR sessions.5,9 The procedures vary between hospitals and countries, and some differences are related to whether the model of ethical analysis is case based, focusing on the values and moral principles that are identified in the specific case, or principle based.12 In principle-based ECR sessions, the analysis relies on applying pre-established moral principles.12 Other differences refer to who participates,13,14 ways of facilitating the reflection,15 and the decision-making process.16,17 ECR sessions can even increase the ethical competence of the healthcare professionals and create a common understanding.18 Ethical competence is the ability to identify and recognize ethical issues; to analyze conflicting interests, values, and moral principles; and to come to reasoned decisions in clinical practice.19 Nurses and physicians are likely to reflect separately on ethical aspects, and it is not common with reflections in the healthcare team. It is important to study how reflecting together in the care team can assist healthcare professionals dealing with ethical concerns. These concerns may be shared but handled differently in clinical practice. Previous research explored what happened during ethics case deliberations in clinical ethics committees when reflecting over a paper case.20 This study, which was carried out in the context of childhood cancer care, addresses healthcare professionals’ experiences of interprofessional ECR sessions on real clinical cases. It is important to study ECR sessions to gain knowledge of inter-professional social patterns.
Objectives The purpose of this study was to explore healthcare staff’s experiences of participating in ECR sessions in childhood cancer care. The general research question was: What is the main concern of healthcare professionals when participating in ECR sessions with the care team, and how do they deal with it? 2
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Table 1. Participant details of ethics case reflection (ECR) sessions and follow-up interviews. ECR Duration (h) Nurse assistant Nurses Physicians Other professions
Follow-up interviews
1 2 3 4 5 6
1 w nurse (informal) 2 w nurses 1 w nurse (informal) 1 w nurse 1 w nurse; 2 m physicians (informal) 1 w nurse; 1 w nurse assistant
1:30 1:25 1:05 1:02 1:20 1:21
1w 1w
2w 2w 3w 3w 2w 3w
1w
2m 3m 1 w playing; therapist 1m 1 w psychologist 3m 3m 1 m; 2 w
w: woman or women; m: man or men.
Methods This is an exploratory study based on qualitative observations of ECR sessions concerning clinical cases and interviews with healthcare professionals about their experience of participating in ECR sessions. Grounded theory methodology was chosen for its suitability for studying the participants’ interactions and their main concerns, and how they usually deal with them.21–23
Sampling/participants ECR sessions were carried out at a publicly funded children’s hospital in Sweden with healthcare professionals from the pediatric cancer care unit and the advanced homecare unit. The professions represented were physicians, nurses, nurse assistants, psychologists, and play therapists. Cases for the reflection sessions were identified by the healthcare professionals. The first author (C.B.), assisted by consultant nurses, invited healthcare team members involved in the care of the child to attend the ECR session. The first author (C.B.) attended the ECR session as an observer. Six ECR sessions, attended by 5–7 healthcare professionals from the inter-professional team (Table 1), were conducted. Furthermore, to gain a richer understanding of the dimensions of the categories, theoretical sampling22,23 was conducted of persons who had participated in the ECR sessions (Table 1) for individual interviews and individual encounters. A total of 35 healthcare professionals participated in the six ECR sessions, and 10 healthcare professionals were individually interviewed, formally and/or informally, afterwards.
Data collection Data were collected through observations of ECR sessions, individual interviews (formal), and individual encounters (informal). Observations. ECR sessions lasted 60–90 min. The first author (C.B.) attended the ECR session quietly as a participating observer, performing unstructured observations of nonverbal communication and the participant’s social interactions.24 Field notes were taken by the first author (C.B.) during the ECR sessions. All ECR sessions were audio recorded, except for one where the participants did not agree on audio recording. During the ECR session that was not audio recorded, more detailed and extensive field notes were taken, and comments were written down by the first author (C.B.). A facilitator with expertise in ethics and facilitation guided the reflection according to a modified version of the ‘‘Karolinska model for ethical analysis.’’9 The facilitators had different professions, such as specialist nurse, ethicist, and priest. Individual interviews. When the individual interviews were conducted, the first author (C.B.) invited the participants to tell their story of participating in an ECR session. The interviews, which lasted approximately 3
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30 min, were held in a private room at the hospital. Open questions were asked to gain a richer understanding of the participants’ experiences of the ECR sessions and the facilitators’ role. Laddered probing questions were also used: ‘‘What happened?’’ ‘‘How did you deal with it?’’ and ‘‘What do you think about that?’’25 Field notes were taken by the first author (C.B.) during the individual interviews. Four individual interviews were audio recorded. Individual encounters. According to Glaser,22 everything is data, and with that in mind, encounters with healthcare professionals in situations related to the substantive area enriched the data collection. Spontaneous encounters with follow-up questions, produced in a non-formal way, were performed; for example, in the hallway outside the meeting room of the ECR session. Field notes were taken.
Procedure When a case for reflection was identified, the physicians involved held a medical pre-meeting to ensure that the medical issues would not dominate the ECR session. In the ECR sessions, the facilitator followed the steps in the model:9 (a) briefly present the background or case; (b) identify the ethical problem; (c) bring in the relevant facts; (d) identify the parties involved; (e) identify what is at stake (interests, values, and moral principles); (f) identify available action alternatives; (g) evaluate each action alternative; and (h) carry out the ethical argumentation and try to reach agreement on a recommendation.
Data analysis Field notes were coded line by line directly after observations and interviews. Audio recordings were carefully listened to and transcribed. All data were read through several times to get an overall picture of what was going on. This was followed by open coding of transcribed observations and interviews, using the software program NVivo 9.26 Recurring interchangeable indicators in the data created substantive codes. Examples of indicators that created ‘‘clarifying perspectives’’ were when participants with different perspectives made great efforts to extend their perceptions, experiences, questions, expressions, and confirmed understanding. In line with classic grounded theory methodology, codes were grouped into categories through constant comparison.21 In the conceptualization, the categories were renamed to try to capture the pattern discovered in the empirical data. When the core category emerged, selective coding21 was applied delimiting analysis to those categories that related to the core. In line with grounded theory process, the next step was to saturate the categories using theoretical sampling,27 for example, by interviewing nurses to explore the category of ‘‘unifying interactions.’’ Ideas about anything that captured the point of a conceptualized pattern of the categories were written in memos.27 Memos were also generated when categories were compared because the comparisons themselves brought up new ideas.27 The next phase involved sorting the memos, resulted in the integration of categories through emergent theoretical coding, including approaches and consequences. Enabling validation, the last author (P.P.) independently read all of the transcribed data. Three of the authors then discussed the codes, the categories, and the theoretical codes, and how the core category captured how participants continually tried to resolve their main concern.
Ethical considerations Healthcare professionals were given oral and written information about the purpose of the study and information about the voluntary nature of participation stating that they could end their participation at any time without having to explain why. Participants were also given the option to decline audio 4
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recording. The children’s and their parents’ names were not mentioned during the reflection sessions or during the follow-up interviews in order to protect their anonymity. Oral informed consent was collected from parents in the prospective cases reflected on in the ECR sessions where the quotes are taken from. General information about the project was also posted on a notice board placed at the unit during the project. This study was approved by the regional ethical review board in Stockholm (2009/ 1666-31/5).
Findings Theory: consolidating care by clarifying perspectives Clarifying perspectives emerged during ECR sessions in pediatric cancer care, when specific clinical ethical concerns are reflected on. When healthcare professionals participate in ECR sessions with the care team, their main concern is to consolidate care. Consolidating care entails striving for common care goals and creating a shared view of care in the specific case. The inter-professional team is consolidating care by clarifying perspectives. The core category, clarifying perspectives, and two related categories explain how care is consolidated. The two related categories were named deliberating ethics (approaches) and unifying interactions (consequences). The purpose of the quotations presented, from ECR sessions and interviews, is to achieve greater understanding of the conceptualized content. The personal details have been changed in the quotes so that it is not possible to recognize the child and the family.
Clarifying perspectives The process of clarifying perspectives begins when the participants discuss their views on and experiences of a particular case. The inter-professional perspective is clarified by the expression of participants’ professional views. Participants in the team are making great effort in explaining their experiences and their concerns of clinical ethical situations in caring for the child and family being reflected on. They are eager to adequately and carefully define their views of the situation. Presenting examples, in the ECR session, of situations that are related to the participants’ own perspectives on the ethical concern is used to reinforce the presented experience. The different inter-professional perspectives result in a variety of dimensions and a breadth of reflection. The different perspectives provide a comprehensive view of the ethical concern, encompassing many different aspects of the child’s situation. In this study, the family perspective—including the interest of the child, parents, and siblings—was in the majority of cases brought up by nurses and nurse assistants but was reflected on by all of the participants. The medical perspective was often clarified by the physicians: Like, when I met them the first time, it was really, like, a discussion of poor prognosis, and I thought they understood that it’s really difficult to know how it [the disease of their child] is going to be cured. (Physician in ECR: 5)
Nurses and nurse assistants, on the other hand, elaborated on the ethical concern from the caring perspective, for example, about procedures when the child did not want to cooperate, as exemplified by the following quotation: In the end you have to hold her down to get the needle in. It doesn’t feel really right—it feels wrong, doing it makes you feel awful. She’s a big girl, so it takes more than one person. (Nurse in ECR: 3) 5
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Deliberating ethics Raising values and considering what would be wise and reasonable actions that are making sense in the context of the relevant ethical concern are approaches for clarifying perspectives. Raising values. This is about expressing, lifting, and deliberating on values that relate to the particular case and to the participants’ own perceptions of important values and what is at stake in the ethical clinical case under discussion. By considering what is important and ethically defensible, perspectives on values are clarified. Values are most often not expressed in specific value terms, such as autonomy, and are conveyed as a underlying and latent message. Raising values clarifies what is at stake from the individual perspective, and it also provides examples of how values might be expressed and helps the other participants reflect on ethical values. In our study, participants reasoned not only with each other but also aloud with themselves, as they explained that they did not really know what their own beliefs were and what ethical values to prioritize. ‘‘One should ‘do no harm’ and sometimes we can cure, but we’re not always able to cure; anyhow, we’re supposed to not to make things worse at least’’ (Physician in ECR: 5). They asked for the team’s thoughts and experiences to achieve clarity. Facilitator in ECR: 6: You are thinking ahead? If we do continue with the treatment, what does it mean for her? Nurse in ECR: 6: Yes, exactly, what kind of life would it be? Would it be 24 more months of suffering, or would it be 24 good months?
Participants were also very keen to reflect on the ethical values at stake based on their proxy experience of the child’s and its parents’ interests. By describing situations in which children and parents had clearly articulated or demonstrated what was important to them, they were able to express and thus to clarify the children’s and the parents’ perspectives: On many occasions she said ‘‘let me be!’’ And not only recently—it happened at earlier stages. The times that I’ve heard her say ‘‘Let me be’’ have not just been a demand to let go of her hand or something, but to leave her in peace in a larger sense. How much larger I don’t know, but she has said many times ‘‘Let me be, don’t hurt me anymore.’’ She was terrified of pain and protested after just this little amount of pain [shows with his fingers]. But she said ‘‘Let me be’’ many times. (Physician in ECR: 1)
When values are discussed, healthcare professionals can relate them to different conceivable courses of action that are reasonable in the prevailing situation and reflect on what makes sense. Making sense. Making sense is about reflecting on the overall plausibility of possible actions. Making sense is made possible through professional curiosity and is achieved through reflection on what seems sensible and wise and consideration of what might be considered equitable and meaningful. Asking questions about plausibility enables the healthcare professionals to further clarify the child’s situation, as the following quotations show: ‘‘In the event we are going to let her die or not, it’s a difficult and sensitive situation ... is there any alternative?’’ (Physician in ECR: 1) ‘‘But what is the goal of the treatment she has now received? Is it curative?’’ (Nurse in ECR: 4)
A temporal recapture of the child’s and the family’s situation is reflected on, and in such situations, the participants have a chance to contribute with their basic views. Raising values and making sense contribute to unifying interactions. 6
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Unifying interactions A consequence of clarifying perspectives is unifying interactions including increased inter-professional understanding and agreement and increased strength of the group. Arguments generated in the interactions provide a basis for decision making and for common care objectives. The consequences that emerged were increased understanding, group strengthening, and decision grounding that unify the healthcare team. Increased understanding. This involves various levels of understanding of the medical and the caring situation of the child and family and of the ethical concern. The increased understanding of the medical situation, in the team, creates a sense of relief because it resolves hitherto unanswered questions. Increased understandings also involve central caring issues, such as experiences of pain, the psychosocial situation, communication, and quality of life. Strong ‘‘Aha! moments’’ occur, and they contain elements of surprise. Physician A in ECR: 6 (PA): But curative? Is this maintenance treatment actually curative? Physician B in ECR: 6 (PB): No, it is not. It prolongs the person’s life.
Nursing staff clarifies the child’s and the family’s perspectives on the ethical concern, resulting in increased understanding of their situation: One of the last times they were here, I had the impression that the thing the mother thought was tough was that the patient struggled so hard. And then I’m thinking [I wonder] if her impression is not that we’re doing this as a palliative thing, but rather that we are trying to achieve a cure. (Nurse in ECR: 1)
In our study, understanding was increased in relation to procedures and situations related to specific professions. When shared understanding is achieved, the team is able to reflect on the ethical concern and unity arises, which leads to strength in the professional group. Group strengthening. Even if everyone does not agree on how they should handle the situation, the team is united over the child’s situation. Participants respond to each other’s comments and points of view, resulting in group strength and consisting of a sense of belonging. An atmosphere of mutual understanding and acknowledgement results in participants perceiving that they become closer to consolidate care. ‘‘But I think what you say is important. It was good that you said it’’ (Physician in ECR: 5). One nurse said, ‘‘Everyone was together: it created a united pathway. Respected. Physicians’ conversations are different—physicians approach patients differently—but the ethical discussion made it unanimous. Amazing! Everything came up.’’ (Nurse in interview)
Decision grounding. The decision that needs to be taken in relation to the ethical concern can, after the ECR session, be grounded in a multi-perspective view of the situation including the child’s and family’s perspective as well as the care and the medical perspective. Consolidating care often involves decision-making elements, and increased understanding ultimately leads to a viable basis for decision making: But I don’t see this as a decision-making forum, I see this [ECR sessions] as a way of reflecting on arguments and then bring the arguments with me when I am going to my room to think about the possible alternatives at hand. (Physician in ECR: 4) 7
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Discussion The purpose of this study was to explore healthcare staff’s experiences of participating in ECR sessions in childhood cancer care. The grounded theory of clarifying perspectives provides empirical knowledge and a deeper understanding of how healthcare professionals clarify their perspectives together to consolidate care through participation in ECR sessions. Because healthcare professionals are not alone in caring for their patients, reflecting together is beneficial. In our study, this became obvious as the main concern of consolidating care emerged. Healthcare professionals are striving to provide unified care based on a mutual understanding that is in the best interests of the child. Consolidating care is enriched by different perspectives. Reflecting on the medical perspective alone, for example, means important pieces of the picture will be missed. One might think that because the clarification of perspectives is one of the goals of ECR sessions, the findings might be considered obvious; however, clarifying perspectives is not the only goal. Arguing and raising arguments are also significant goals that did not emerge from the data. The participants were not arguing or compromising, but rather clarifying perspectives to resolve their main concern of consolidating care. Even though the theory of clarifying perspectives generates positive arguments for conducting ECR sessions, awareness of false reassurance is needed. There will always be a risk that not all perspectives are presented or heard, and the situation of the ethical concern might change leading to a need for reevaluation of values in care. Furthermore, in this study, decision grounding emerged, which is also in accordance with the goals of the ECR sessions. In a previous study, decision sharing emerged.28 Because the medical and legal responsibility of the decision in care will be with the physicians, we believe that there is a risk with false notions of decision sharing. We will discuss the related categories below. Approaches for deliberating ethics are comparable with a study of moral reckoning29 with an objective to elucidate the experiences and consequences of professional nurses’ moral distress. In the stage of reflection in moral reckoning, questions are raised about prior judgments, particular acts, and the essential self29 which is similar to the approaches for raising values and making sense in deliberating ethics. A previous study, on experiences of ethical issues,1 presents the ethical concern of ‘‘conflicting perspectives.’’ Conflicting perspectives refer to different beliefs regarding care.1 Healthcare professionals desired reflections on ethical concerns to be able to deal with them.1 This indicates that ethical problems, such as conflicting perspectives, can be turned into unifying interactions through ECR sessions. If we can handle the ethical problems, we can increase our ability to provide good and ethically tenable care. When perspectives were clarified, in this study, increased understanding, group strengthening, and decision grounding emerged, resulting in participants being able to consolidate care. Consolidating care does not equal the same view but rather a shared view, that is, there can still be different opinions in regard to what value is most important and how to deal with the ethical concern. The findings of consequences are additionally comparable to a study that evaluated moral case deliberations,18 which is synonymous with ECR sessions. Participants in that study evaluated the moral case deliberation positive and valued improved mutual understanding and mutual cooperation. This is similar to the increased understanding and unifying interactions, which became clear in our study. A goal that received high scores and that can be related to our findings was to better ground decisions and to reflect more on them.18 The results of the two studies reinforce each other and increase the credibility of the findings.
Methodological limitations A potential limitation of the study is that the outcome of the ECR session could depend on the skills of the facilitator. A previous study stated that the facilitator would benefit from skills in proper communication, responsiveness, and structure, in addition to ethics training.9 Different facilitators have different skills that could have contributed to differences regarding the outcome. Furthermore, the model being used could also 8
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influence what is discussed, even if it is not followed strictly. For example, step 5 has been modified to identify what is at stake, including interests, values, and moral principles.9 Thus, the finding that participants raise values might seem to be enforced by the model. However, one reason for the previous formulation, which only focused on interests, was that healthcare staff would find it challenging to answer questions about values. Therefore, the finding that healthcare staffs do raise values, even though they do not use typical value terms, is of importance. A data collection limitation was that data collection depended on the clinical conditions. Others have found that when ECR sessions are organized in institutions, they tend to be used continuously.30 However, our experience is that the very high workload adversely influences the ability to perform ECR sessions and collect data. Healthcare professionals did not have sufficient time to reflect over ongoing clinical ethical concerns. One can argue that ethical concerns could be more frequently represented in combination with high workloads and that some presumptive cases were, therefore, not reflected on. For example, when there is a high workload, the team does not have time to communicate with each other or with the patients and their families, which can lead to unnecessary suffering. On the other hand, potential costs of performing ECR sessions are time spent away from the patients. Nonetheless, at all times, when healthcare professionals are not sure, or do not agree on, what ought to be done, ethical reflections should be performed to potentially limit the suffering of the patient.
Implications for theory, research, and practice When studying patterns of behavior in the inter-professional team, clarifying perspectives emerged as a social pattern. Being aware of the approaches and consequences involved in clarifying perspectives can help improve clinical ECR sessions in the future. We believe that our grounded theory of clarifying perspectives is relevant not only for childhood cancer care but also for all healthcare settings in which ethical concerns are common and can serve as a knowledge base when ECR sessions are implemented. Given the knowledge of what happens during ECR sessions in the context of childhood cancer, ECR sessions could, after further theoretical sampling, be implemented into other contexts. Additionally, research could focus on qualitative evaluation of ECR sessions to identify patient- and family-related consequences and to determine whether ECR sessions can reduce the gaps between different perspectives on ethical concerns and professional responsibilities.
Conclusion Healthcare professionals are keen to consolidate care when participating in ECR sessions. By clarifying perspectives, healthcare professionals manage to reflect on the most reasonable and ethically defensible care for the child. Clarifying perspectives through organized and structured ECR sessions conducted by healthcare professionals in care teams that are close to the child helps unify interactions. The unified interactions occurred as increased understanding, group strengthening, and decision grounding in our study. Unified care is likely to result in care based on common goals, which is why ECR sessions are valuable in the care of seriously ill children. Conducting ECR sessions with the inter-professional team is valuable as it permits the discussion of values in healthcare-related issues in childhood cancer care. Acknowledgments We thank all the healthcare professionals who participated in both ethics case reflection sessions and individual interviews and encounters. We acknowledge the consultant nurses and facilitators for invaluable support. 9
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Declaration of conflicting interests The authors declare that there is no conflict of interest. Funding This work was supported by AFA Insurance (grant no. 120019), the Swedish Cancer Foundation (grant no. CAN 2009/912), and the Swedish Childhood Cancer Foundation (grant no. FoAss 13/07). References 1. Bartholdson C, Lu¨tze´n K, Blomgren K, et al. Experiences of ethical issues when caring for children with cancer. Cancer Nurs. Epub ahead of print 18 June 2014. DOI: 10.1097/NCC.0000000000000130. 2. Hinds PS, Oakes L, Furman W, et al. End-of-life decision making by adolescents, parents, and healthcare providers in pediatric oncology: research to evidence-based practice guidelines. Cancer Nurs 2001; 24: 122–134; quiz 35–36. 3. Hurst SA, Perrier A, Pegoraro R, et al. Ethical difficulties in clinical practice: experiences of European doctors. J Med Ethics 2007; 33: 51–57. 4. Solomon MZ, Sellers DE, Heller KS, et al. New and lingering controversies in pediatric end-of-life care. Pediatrics 2005; 116: 872–883. 5. Pedersen R, Hurst S, Schildmann J, et al. The development of a descriptive evaluation tool for clinical ethics case consultations. Clin Ethics 2010; 5: 136–141. 6. Rachels J and Rachels S. The elements of moral philosophy. 6th ed. New York: McGraw-Hill, 2010. 7. Dictionary.com, 2014, http://dictionary.reference.com/browse/reflection?s¼t 8. Asselin ME, Schwartz-Barcott D and Osterman PA. Exploring reflection as a process embedded in experienced nurses’ practice: a qualitative study. J Adv Nurs 2013; 69: 905–914. 9. Bartholdson C, Pergert P and Helgesson G. A procedure for clinical ethics case reflections: examples from childhood cancer care. Clin Ethics 2014; 9: 87–95. 10. Abma TA, Molewijk B and Widdershoven GA. Good care in ongoing dialogue. Improving the quality of care through moral deliberation and responsive evaluation. Health Care Anal 2009; 17: 217–235. 11. Hansson MG. Imaginative ethics–bringing ethical praxis into sharper relief. Med Health Care Philos 2002; 5: 33–42. 12. Artnak KE. A comparison of principle-based and case-based approaches to ethical analysis. HEC Forum 1995; 7: 339–352. 13. Forde R and Hansen TWR. Involving patients and relatives in a Norwegian clinical ethics committee: what have we learned? Clin Ethics 2009; 4: 125–130. 14. Fournier V, Rari E, Forde R, et al. Clinical ethics consultation in Europe: a comparative and ethical review of the role of patients. Clin Ethics 2009; 4: 131–138. 15. Hurst SA, Chevrolet J-C and Loew F. Methods in clinical ethics: a time for eclectic pragmatism? Clin Ethics 2006; 1: 159–164. 16. Molewijk B, Zadelhoff E, Lendemeijer B, et al. Implementing moral case deliberation in Dutch health care: improving moral competency of professionals and quality of care. Bioethics Forum 2008; 1: 57–65. 17. Terry LM and Sanders K. Best practices in clinical ethics consultation and decision-making. Clin Ethics 2011; 6: 103–108. 18. Molewijk B, Verkerk M, Milius H, et al. Implementing moral case deliberation in a psychiatric hospital: process and outcome. Med Health Care Philos 2008; 11: 43–56. 19. Larkin GL. Evaluating professionalism in emergency medicine: clinical ethical competence. Acad Emerg Med 1999; 6: 302–311. 20. Pedersen R, Akre V and Forde R. What is happening during case deliberations in clinical ethics committees? A pilot study. J Med Ethics 2009; 35: 147–152. 10
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21. Glaser BG. Theoretical sensitivity: advances in the methodology of grounded theory. Mill Valley, CA: Sociology Press, 1978, 164 pp. 22. Glaser BG. Doing grounded theory: issues and discussions. Mill Valley, CA: Sociology Press, 1998, p. vii, 254 pp. 23. Glaser BG and Strauss AL. The discovery of grounded theory: strategies for qualitative research. New York: Aldine, 1967, 271 pp. 24. Polit DF and Tatano Beck C. Nursing research. Philadelphia, PA: Lippincott Williams & Wilkins, 2008. 25. Price B. Laddered questions and qualitative data research interviews. J Adv Nurs 2002; 37: 273–281. 26. QSR International. QSR NVivo 9 new generation software for qualitative data analysis. Doncaster, VIC, Australia: QSR International Pty Ltd, 2010. 27. Glaser BG. Stop, write: writing grounded theory. Mill Valley, CA: Sociology Press, 2012. 28. Hem MH, Pedersen R, Norvoll R, et al. Evaluating clinical ethics support in mental healthcare: a systematic literature review. Nurs Ethics. Epub ahead of print 4 August 2014. DOI: 10.1177/0969733014539783. 29. Nathaniel AK. Moral reckoning in nursing. West J Nurs Res 2006; 28: 419–438; discussion 39–48. 30. Dauwerse L, Stolper M, Widdershoven G, et al. Prevalence and characteristics of moral case deliberation in Dutch health care. Med Health Care Philos 2014; 17: 365–375.
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Clarifying perspectives: Ethics case reflection sessions in childhood cancer care
Nursing Ethics 1–11 ª The Author(s) 2015 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733015570511 nej.sagepub.com
Cecilia Bartholdson, Kim Lu¨tze´n, Klas Blomgren and Pernilla Pergert Karolinska Institutet, Sweden
Abstract Background: Childhood cancer care involves many ethical concerns. Deciding on treatment levels and providing care that infringes on the child’s growing autonomy are known ethical concerns that involve the whole professional team around the child’s care. Objectives: The purpose of this study was to explore healthcare professionals’ experiences of participating in ethics case reflection sessions in childhood cancer care. Research design: Data collection by observations, individual interviews, and individual encounters. Data analysis were conducted following grounded theory methodology. Participants and research context: Healthcare professionals working at a publicly funded children’s hospital in Sweden participated in ethics case reflection sessions in which ethical issues concerning clinical cases were reflected on. Ethical considerations: The children’s and their parents’ integrity was preserved through measures taken to protect patient identity during ethics case reflection sessions. The study was approved by a regional ethical review board. Findings: Consolidating care by clarifying perspectives emerged. Consolidating care entails striving for common care goals and creating a shared view of care and the ethical concern in the specific case. The inter-professional perspectives on the ethical aspects of care are clarified by the participants’ articulated views on the case. Different approaches for deliberating ethics are used during the sessions including raising values and making sense, leading to unifying interactions. Discussion: The findings indicate that ethical concerns could be eased by implementing ethics case reflection sessions. Conflicting perspectives can be turned into unifying interactions in the healthcare professional team with the common aim to achieve good pediatric care. Conclusion: Ethics case reflection sessions is valuable as it permits the discussion of values in healthcarerelated issues in childhood cancer care. Clarifying perspectives, on the ethical concerns, enables healthcare professionals to reflect on the most reasonable and ethically defensible care for the child. A consolidated care approach would be valuable for both the child and the healthcare professionals because of the common care goals. Keywords Cancer, caregivers, ethics or moral perspectives, grounded theory, group interaction, pediatrics Corresponding author: Cecilia Bartholdson, Childhood Cancer Research Unit, Department of Women’s and Children’s Health, Karolinska Institutet, Astrid Lindgren Children’s Hospital Q6:05, 171 76 Stockholm, Sweden. Email: [email protected]
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Background Deciding on treatment levels and infringing on the child’s growing autonomy are ethical concerns in childhood cancer care.1 Deciding on treatment levels includes balancing pain relief and timing the breaking point. Infringing on the child’s growing autonomy includes limiting truth-telling and inflicting suffering in procedures when children do not cooperate.1 Several studies describe ethical issues related to continued futile treatment and consequential suffering.2–4 The medical and care perspectives on ethical issues are not always congruent with each other,1 which may lead to value conflicts in care. One explanation could be that perspectives on ethics most likely are connected to professional codes of ethics and responsibilities. Conflicting perspectives is an ethical concern in childhood cancer care that may be related to professional cultures, experience, and education, as well as personal values and moral beliefs.1 Previous research has shown that value conflicts can be handled through ethics case reflection (ECR) sessions.5 This builds on ethics relating to the systematic reflection on human values and actions and the reasons for them.6 Reflection can be defined as ‘‘careful consideration’’7 and is viewed as a key component of professional practice.8 The basic premise is that reflection involves a conscious process of thinking about a clinical situation, which leads to understanding and subsequent amendments to practice.8 This idea of reflection was applied in this project. The ECR sessions were organized as meetings involving the inter-professional team and an external facilitator and were initiated by any healthcare team member who experienced an ethical problem.9 An example of a case involving the inter-professional team could be a 5-year-old boy with a brain tumor, whose parents disagree about the available treatment alternatives. Thus, a central aim of the ECR session is to reflect on the case and to improve the quality of care within that case.10 Furthermore, ECR sessions are similar to ethics rounds, and previous research11 examined an approach to ethical reasoning, named imaginary ethics, during ethics rounds in childhood cancer care in Sweden. Imaginary ethics seeks to identify values and interests relating to the care of the patient and encourage participants to listen to alternative ethical experience. There are, however, several ways of conducting ECR sessions.5,9 The procedures vary between hospitals and countries, and some differences are related to whether the model of ethical analysis is case based, focusing on the values and moral principles that are identified in the specific case, or principle based.12 In principle-based ECR sessions, the analysis relies on applying pre-established moral principles.12 Other differences refer to who participates,13,14 ways of facilitating the reflection,15 and the decision-making process.16,17 ECR sessions can even increase the ethical competence of the healthcare professionals and create a common understanding.18 Ethical competence is the ability to identify and recognize ethical issues; to analyze conflicting interests, values, and moral principles; and to come to reasoned decisions in clinical practice.19 Nurses and physicians are likely to reflect separately on ethical aspects, and it is not common with reflections in the healthcare team. It is important to study how reflecting together in the care team can assist healthcare professionals dealing with ethical concerns. These concerns may be shared but handled differently in clinical practice. Previous research explored what happened during ethics case deliberations in clinical ethics committees when reflecting over a paper case.20 This study, which was carried out in the context of childhood cancer care, addresses healthcare professionals’ experiences of interprofessional ECR sessions on real clinical cases. It is important to study ECR sessions to gain knowledge of inter-professional social patterns.
Objectives The purpose of this study was to explore healthcare staff’s experiences of participating in ECR sessions in childhood cancer care. The general research question was: What is the main concern of healthcare professionals when participating in ECR sessions with the care team, and how do they deal with it? 2
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Table 1. Participant details of ethics case reflection (ECR) sessions and follow-up interviews. ECR Duration (h) Nurse assistant Nurses Physicians Other professions
Follow-up interviews
1 2 3 4 5 6
1 w nurse (informal) 2 w nurses 1 w nurse (informal) 1 w nurse 1 w nurse; 2 m physicians (informal) 1 w nurse; 1 w nurse assistant
1:30 1:25 1:05 1:02 1:20 1:21
1w 1w
2w 2w 3w 3w 2w 3w
1w
2m 3m 1 w playing; therapist 1m 1 w psychologist 3m 3m 1 m; 2 w
w: woman or women; m: man or men.
Methods This is an exploratory study based on qualitative observations of ECR sessions concerning clinical cases and interviews with healthcare professionals about their experience of participating in ECR sessions. Grounded theory methodology was chosen for its suitability for studying the participants’ interactions and their main concerns, and how they usually deal with them.21–23
Sampling/participants ECR sessions were carried out at a publicly funded children’s hospital in Sweden with healthcare professionals from the pediatric cancer care unit and the advanced homecare unit. The professions represented were physicians, nurses, nurse assistants, psychologists, and play therapists. Cases for the reflection sessions were identified by the healthcare professionals. The first author (C.B.), assisted by consultant nurses, invited healthcare team members involved in the care of the child to attend the ECR session. The first author (C.B.) attended the ECR session as an observer. Six ECR sessions, attended by 5–7 healthcare professionals from the inter-professional team (Table 1), were conducted. Furthermore, to gain a richer understanding of the dimensions of the categories, theoretical sampling22,23 was conducted of persons who had participated in the ECR sessions (Table 1) for individual interviews and individual encounters. A total of 35 healthcare professionals participated in the six ECR sessions, and 10 healthcare professionals were individually interviewed, formally and/or informally, afterwards.
Data collection Data were collected through observations of ECR sessions, individual interviews (formal), and individual encounters (informal). Observations. ECR sessions lasted 60–90 min. The first author (C.B.) attended the ECR session quietly as a participating observer, performing unstructured observations of nonverbal communication and the participant’s social interactions.24 Field notes were taken by the first author (C.B.) during the ECR sessions. All ECR sessions were audio recorded, except for one where the participants did not agree on audio recording. During the ECR session that was not audio recorded, more detailed and extensive field notes were taken, and comments were written down by the first author (C.B.). A facilitator with expertise in ethics and facilitation guided the reflection according to a modified version of the ‘‘Karolinska model for ethical analysis.’’9 The facilitators had different professions, such as specialist nurse, ethicist, and priest. Individual interviews. When the individual interviews were conducted, the first author (C.B.) invited the participants to tell their story of participating in an ECR session. The interviews, which lasted approximately 3
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30 min, were held in a private room at the hospital. Open questions were asked to gain a richer understanding of the participants’ experiences of the ECR sessions and the facilitators’ role. Laddered probing questions were also used: ‘‘What happened?’’ ‘‘How did you deal with it?’’ and ‘‘What do you think about that?’’25 Field notes were taken by the first author (C.B.) during the individual interviews. Four individual interviews were audio recorded. Individual encounters. According to Glaser,22 everything is data, and with that in mind, encounters with healthcare professionals in situations related to the substantive area enriched the data collection. Spontaneous encounters with follow-up questions, produced in a non-formal way, were performed; for example, in the hallway outside the meeting room of the ECR session. Field notes were taken.
Procedure When a case for reflection was identified, the physicians involved held a medical pre-meeting to ensure that the medical issues would not dominate the ECR session. In the ECR sessions, the facilitator followed the steps in the model:9 (a) briefly present the background or case; (b) identify the ethical problem; (c) bring in the relevant facts; (d) identify the parties involved; (e) identify what is at stake (interests, values, and moral principles); (f) identify available action alternatives; (g) evaluate each action alternative; and (h) carry out the ethical argumentation and try to reach agreement on a recommendation.
Data analysis Field notes were coded line by line directly after observations and interviews. Audio recordings were carefully listened to and transcribed. All data were read through several times to get an overall picture of what was going on. This was followed by open coding of transcribed observations and interviews, using the software program NVivo 9.26 Recurring interchangeable indicators in the data created substantive codes. Examples of indicators that created ‘‘clarifying perspectives’’ were when participants with different perspectives made great efforts to extend their perceptions, experiences, questions, expressions, and confirmed understanding. In line with classic grounded theory methodology, codes were grouped into categories through constant comparison.21 In the conceptualization, the categories were renamed to try to capture the pattern discovered in the empirical data. When the core category emerged, selective coding21 was applied delimiting analysis to those categories that related to the core. In line with grounded theory process, the next step was to saturate the categories using theoretical sampling,27 for example, by interviewing nurses to explore the category of ‘‘unifying interactions.’’ Ideas about anything that captured the point of a conceptualized pattern of the categories were written in memos.27 Memos were also generated when categories were compared because the comparisons themselves brought up new ideas.27 The next phase involved sorting the memos, resulted in the integration of categories through emergent theoretical coding, including approaches and consequences. Enabling validation, the last author (P.P.) independently read all of the transcribed data. Three of the authors then discussed the codes, the categories, and the theoretical codes, and how the core category captured how participants continually tried to resolve their main concern.
Ethical considerations Healthcare professionals were given oral and written information about the purpose of the study and information about the voluntary nature of participation stating that they could end their participation at any time without having to explain why. Participants were also given the option to decline audio 4
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recording. The children’s and their parents’ names were not mentioned during the reflection sessions or during the follow-up interviews in order to protect their anonymity. Oral informed consent was collected from parents in the prospective cases reflected on in the ECR sessions where the quotes are taken from. General information about the project was also posted on a notice board placed at the unit during the project. This study was approved by the regional ethical review board in Stockholm (2009/ 1666-31/5).
Findings Theory: consolidating care by clarifying perspectives Clarifying perspectives emerged during ECR sessions in pediatric cancer care, when specific clinical ethical concerns are reflected on. When healthcare professionals participate in ECR sessions with the care team, their main concern is to consolidate care. Consolidating care entails striving for common care goals and creating a shared view of care in the specific case. The inter-professional team is consolidating care by clarifying perspectives. The core category, clarifying perspectives, and two related categories explain how care is consolidated. The two related categories were named deliberating ethics (approaches) and unifying interactions (consequences). The purpose of the quotations presented, from ECR sessions and interviews, is to achieve greater understanding of the conceptualized content. The personal details have been changed in the quotes so that it is not possible to recognize the child and the family.
Clarifying perspectives The process of clarifying perspectives begins when the participants discuss their views on and experiences of a particular case. The inter-professional perspective is clarified by the expression of participants’ professional views. Participants in the team are making great effort in explaining their experiences and their concerns of clinical ethical situations in caring for the child and family being reflected on. They are eager to adequately and carefully define their views of the situation. Presenting examples, in the ECR session, of situations that are related to the participants’ own perspectives on the ethical concern is used to reinforce the presented experience. The different inter-professional perspectives result in a variety of dimensions and a breadth of reflection. The different perspectives provide a comprehensive view of the ethical concern, encompassing many different aspects of the child’s situation. In this study, the family perspective—including the interest of the child, parents, and siblings—was in the majority of cases brought up by nurses and nurse assistants but was reflected on by all of the participants. The medical perspective was often clarified by the physicians: Like, when I met them the first time, it was really, like, a discussion of poor prognosis, and I thought they understood that it’s really difficult to know how it [the disease of their child] is going to be cured. (Physician in ECR: 5)
Nurses and nurse assistants, on the other hand, elaborated on the ethical concern from the caring perspective, for example, about procedures when the child did not want to cooperate, as exemplified by the following quotation: In the end you have to hold her down to get the needle in. It doesn’t feel really right—it feels wrong, doing it makes you feel awful. She’s a big girl, so it takes more than one person. (Nurse in ECR: 3) 5
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Deliberating ethics Raising values and considering what would be wise and reasonable actions that are making sense in the context of the relevant ethical concern are approaches for clarifying perspectives. Raising values. This is about expressing, lifting, and deliberating on values that relate to the particular case and to the participants’ own perceptions of important values and what is at stake in the ethical clinical case under discussion. By considering what is important and ethically defensible, perspectives on values are clarified. Values are most often not expressed in specific value terms, such as autonomy, and are conveyed as a underlying and latent message. Raising values clarifies what is at stake from the individual perspective, and it also provides examples of how values might be expressed and helps the other participants reflect on ethical values. In our study, participants reasoned not only with each other but also aloud with themselves, as they explained that they did not really know what their own beliefs were and what ethical values to prioritize. ‘‘One should ‘do no harm’ and sometimes we can cure, but we’re not always able to cure; anyhow, we’re supposed to not to make things worse at least’’ (Physician in ECR: 5). They asked for the team’s thoughts and experiences to achieve clarity. Facilitator in ECR: 6: You are thinking ahead? If we do continue with the treatment, what does it mean for her? Nurse in ECR: 6: Yes, exactly, what kind of life would it be? Would it be 24 more months of suffering, or would it be 24 good months?
Participants were also very keen to reflect on the ethical values at stake based on their proxy experience of the child’s and its parents’ interests. By describing situations in which children and parents had clearly articulated or demonstrated what was important to them, they were able to express and thus to clarify the children’s and the parents’ perspectives: On many occasions she said ‘‘let me be!’’ And not only recently—it happened at earlier stages. The times that I’ve heard her say ‘‘Let me be’’ have not just been a demand to let go of her hand or something, but to leave her in peace in a larger sense. How much larger I don’t know, but she has said many times ‘‘Let me be, don’t hurt me anymore.’’ She was terrified of pain and protested after just this little amount of pain [shows with his fingers]. But she said ‘‘Let me be’’ many times. (Physician in ECR: 1)
When values are discussed, healthcare professionals can relate them to different conceivable courses of action that are reasonable in the prevailing situation and reflect on what makes sense. Making sense. Making sense is about reflecting on the overall plausibility of possible actions. Making sense is made possible through professional curiosity and is achieved through reflection on what seems sensible and wise and consideration of what might be considered equitable and meaningful. Asking questions about plausibility enables the healthcare professionals to further clarify the child’s situation, as the following quotations show: ‘‘In the event we are going to let her die or not, it’s a difficult and sensitive situation ... is there any alternative?’’ (Physician in ECR: 1) ‘‘But what is the goal of the treatment she has now received? Is it curative?’’ (Nurse in ECR: 4)
A temporal recapture of the child’s and the family’s situation is reflected on, and in such situations, the participants have a chance to contribute with their basic views. Raising values and making sense contribute to unifying interactions. 6
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Unifying interactions A consequence of clarifying perspectives is unifying interactions including increased inter-professional understanding and agreement and increased strength of the group. Arguments generated in the interactions provide a basis for decision making and for common care objectives. The consequences that emerged were increased understanding, group strengthening, and decision grounding that unify the healthcare team. Increased understanding. This involves various levels of understanding of the medical and the caring situation of the child and family and of the ethical concern. The increased understanding of the medical situation, in the team, creates a sense of relief because it resolves hitherto unanswered questions. Increased understandings also involve central caring issues, such as experiences of pain, the psychosocial situation, communication, and quality of life. Strong ‘‘Aha! moments’’ occur, and they contain elements of surprise. Physician A in ECR: 6 (PA): But curative? Is this maintenance treatment actually curative? Physician B in ECR: 6 (PB): No, it is not. It prolongs the person’s life.
Nursing staff clarifies the child’s and the family’s perspectives on the ethical concern, resulting in increased understanding of their situation: One of the last times they were here, I had the impression that the thing the mother thought was tough was that the patient struggled so hard. And then I’m thinking [I wonder] if her impression is not that we’re doing this as a palliative thing, but rather that we are trying to achieve a cure. (Nurse in ECR: 1)
In our study, understanding was increased in relation to procedures and situations related to specific professions. When shared understanding is achieved, the team is able to reflect on the ethical concern and unity arises, which leads to strength in the professional group. Group strengthening. Even if everyone does not agree on how they should handle the situation, the team is united over the child’s situation. Participants respond to each other’s comments and points of view, resulting in group strength and consisting of a sense of belonging. An atmosphere of mutual understanding and acknowledgement results in participants perceiving that they become closer to consolidate care. ‘‘But I think what you say is important. It was good that you said it’’ (Physician in ECR: 5). One nurse said, ‘‘Everyone was together: it created a united pathway. Respected. Physicians’ conversations are different—physicians approach patients differently—but the ethical discussion made it unanimous. Amazing! Everything came up.’’ (Nurse in interview)
Decision grounding. The decision that needs to be taken in relation to the ethical concern can, after the ECR session, be grounded in a multi-perspective view of the situation including the child’s and family’s perspective as well as the care and the medical perspective. Consolidating care often involves decision-making elements, and increased understanding ultimately leads to a viable basis for decision making: But I don’t see this as a decision-making forum, I see this [ECR sessions] as a way of reflecting on arguments and then bring the arguments with me when I am going to my room to think about the possible alternatives at hand. (Physician in ECR: 4) 7
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Discussion The purpose of this study was to explore healthcare staff’s experiences of participating in ECR sessions in childhood cancer care. The grounded theory of clarifying perspectives provides empirical knowledge and a deeper understanding of how healthcare professionals clarify their perspectives together to consolidate care through participation in ECR sessions. Because healthcare professionals are not alone in caring for their patients, reflecting together is beneficial. In our study, this became obvious as the main concern of consolidating care emerged. Healthcare professionals are striving to provide unified care based on a mutual understanding that is in the best interests of the child. Consolidating care is enriched by different perspectives. Reflecting on the medical perspective alone, for example, means important pieces of the picture will be missed. One might think that because the clarification of perspectives is one of the goals of ECR sessions, the findings might be considered obvious; however, clarifying perspectives is not the only goal. Arguing and raising arguments are also significant goals that did not emerge from the data. The participants were not arguing or compromising, but rather clarifying perspectives to resolve their main concern of consolidating care. Even though the theory of clarifying perspectives generates positive arguments for conducting ECR sessions, awareness of false reassurance is needed. There will always be a risk that not all perspectives are presented or heard, and the situation of the ethical concern might change leading to a need for reevaluation of values in care. Furthermore, in this study, decision grounding emerged, which is also in accordance with the goals of the ECR sessions. In a previous study, decision sharing emerged.28 Because the medical and legal responsibility of the decision in care will be with the physicians, we believe that there is a risk with false notions of decision sharing. We will discuss the related categories below. Approaches for deliberating ethics are comparable with a study of moral reckoning29 with an objective to elucidate the experiences and consequences of professional nurses’ moral distress. In the stage of reflection in moral reckoning, questions are raised about prior judgments, particular acts, and the essential self29 which is similar to the approaches for raising values and making sense in deliberating ethics. A previous study, on experiences of ethical issues,1 presents the ethical concern of ‘‘conflicting perspectives.’’ Conflicting perspectives refer to different beliefs regarding care.1 Healthcare professionals desired reflections on ethical concerns to be able to deal with them.1 This indicates that ethical problems, such as conflicting perspectives, can be turned into unifying interactions through ECR sessions. If we can handle the ethical problems, we can increase our ability to provide good and ethically tenable care. When perspectives were clarified, in this study, increased understanding, group strengthening, and decision grounding emerged, resulting in participants being able to consolidate care. Consolidating care does not equal the same view but rather a shared view, that is, there can still be different opinions in regard to what value is most important and how to deal with the ethical concern. The findings of consequences are additionally comparable to a study that evaluated moral case deliberations,18 which is synonymous with ECR sessions. Participants in that study evaluated the moral case deliberation positive and valued improved mutual understanding and mutual cooperation. This is similar to the increased understanding and unifying interactions, which became clear in our study. A goal that received high scores and that can be related to our findings was to better ground decisions and to reflect more on them.18 The results of the two studies reinforce each other and increase the credibility of the findings.
Methodological limitations A potential limitation of the study is that the outcome of the ECR session could depend on the skills of the facilitator. A previous study stated that the facilitator would benefit from skills in proper communication, responsiveness, and structure, in addition to ethics training.9 Different facilitators have different skills that could have contributed to differences regarding the outcome. Furthermore, the model being used could also 8
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influence what is discussed, even if it is not followed strictly. For example, step 5 has been modified to identify what is at stake, including interests, values, and moral principles.9 Thus, the finding that participants raise values might seem to be enforced by the model. However, one reason for the previous formulation, which only focused on interests, was that healthcare staff would find it challenging to answer questions about values. Therefore, the finding that healthcare staffs do raise values, even though they do not use typical value terms, is of importance. A data collection limitation was that data collection depended on the clinical conditions. Others have found that when ECR sessions are organized in institutions, they tend to be used continuously.30 However, our experience is that the very high workload adversely influences the ability to perform ECR sessions and collect data. Healthcare professionals did not have sufficient time to reflect over ongoing clinical ethical concerns. One can argue that ethical concerns could be more frequently represented in combination with high workloads and that some presumptive cases were, therefore, not reflected on. For example, when there is a high workload, the team does not have time to communicate with each other or with the patients and their families, which can lead to unnecessary suffering. On the other hand, potential costs of performing ECR sessions are time spent away from the patients. Nonetheless, at all times, when healthcare professionals are not sure, or do not agree on, what ought to be done, ethical reflections should be performed to potentially limit the suffering of the patient.
Implications for theory, research, and practice When studying patterns of behavior in the inter-professional team, clarifying perspectives emerged as a social pattern. Being aware of the approaches and consequences involved in clarifying perspectives can help improve clinical ECR sessions in the future. We believe that our grounded theory of clarifying perspectives is relevant not only for childhood cancer care but also for all healthcare settings in which ethical concerns are common and can serve as a knowledge base when ECR sessions are implemented. Given the knowledge of what happens during ECR sessions in the context of childhood cancer, ECR sessions could, after further theoretical sampling, be implemented into other contexts. Additionally, research could focus on qualitative evaluation of ECR sessions to identify patient- and family-related consequences and to determine whether ECR sessions can reduce the gaps between different perspectives on ethical concerns and professional responsibilities.
Conclusion Healthcare professionals are keen to consolidate care when participating in ECR sessions. By clarifying perspectives, healthcare professionals manage to reflect on the most reasonable and ethically defensible care for the child. Clarifying perspectives through organized and structured ECR sessions conducted by healthcare professionals in care teams that are close to the child helps unify interactions. The unified interactions occurred as increased understanding, group strengthening, and decision grounding in our study. Unified care is likely to result in care based on common goals, which is why ECR sessions are valuable in the care of seriously ill children. Conducting ECR sessions with the inter-professional team is valuable as it permits the discussion of values in healthcare-related issues in childhood cancer care. Acknowledgments We thank all the healthcare professionals who participated in both ethics case reflection sessions and individual interviews and encounters. We acknowledge the consultant nurses and facilitators for invaluable support. 9
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Declaration of conflicting interests The authors declare that there is no conflict of interest. Funding This work was supported by AFA Insurance (grant no. 120019), the Swedish Cancer Foundation (grant no. CAN 2009/912), and the Swedish Childhood Cancer Foundation (grant no. FoAss 13/07). References 1. Bartholdson C, Lu¨tze´n K, Blomgren K, et al. Experiences of ethical issues when caring for children with cancer. Cancer Nurs. Epub ahead of print 18 June 2014. DOI: 10.1097/NCC.0000000000000130. 2. Hinds PS, Oakes L, Furman W, et al. End-of-life decision making by adolescents, parents, and healthcare providers in pediatric oncology: research to evidence-based practice guidelines. Cancer Nurs 2001; 24: 122–134; quiz 35–36. 3. Hurst SA, Perrier A, Pegoraro R, et al. Ethical difficulties in clinical practice: experiences of European doctors. J Med Ethics 2007; 33: 51–57. 4. Solomon MZ, Sellers DE, Heller KS, et al. New and lingering controversies in pediatric end-of-life care. Pediatrics 2005; 116: 872–883. 5. Pedersen R, Hurst S, Schildmann J, et al. The development of a descriptive evaluation tool for clinical ethics case consultations. Clin Ethics 2010; 5: 136–141. 6. Rachels J and Rachels S. The elements of moral philosophy. 6th ed. New York: McGraw-Hill, 2010. 7. Dictionary.com, 2014, http://dictionary.reference.com/browse/reflection?s¼t 8. Asselin ME, Schwartz-Barcott D and Osterman PA. Exploring reflection as a process embedded in experienced nurses’ practice: a qualitative study. J Adv Nurs 2013; 69: 905–914. 9. Bartholdson C, Pergert P and Helgesson G. A procedure for clinical ethics case reflections: examples from childhood cancer care. Clin Ethics 2014; 9: 87–95. 10. Abma TA, Molewijk B and Widdershoven GA. Good care in ongoing dialogue. Improving the quality of care through moral deliberation and responsive evaluation. Health Care Anal 2009; 17: 217–235. 11. Hansson MG. Imaginative ethics–bringing ethical praxis into sharper relief. Med Health Care Philos 2002; 5: 33–42. 12. Artnak KE. A comparison of principle-based and case-based approaches to ethical analysis. HEC Forum 1995; 7: 339–352. 13. Forde R and Hansen TWR. Involving patients and relatives in a Norwegian clinical ethics committee: what have we learned? Clin Ethics 2009; 4: 125–130. 14. Fournier V, Rari E, Forde R, et al. Clinical ethics consultation in Europe: a comparative and ethical review of the role of patients. Clin Ethics 2009; 4: 131–138. 15. Hurst SA, Chevrolet J-C and Loew F. Methods in clinical ethics: a time for eclectic pragmatism? Clin Ethics 2006; 1: 159–164. 16. Molewijk B, Zadelhoff E, Lendemeijer B, et al. Implementing moral case deliberation in Dutch health care: improving moral competency of professionals and quality of care. Bioethics Forum 2008; 1: 57–65. 17. Terry LM and Sanders K. Best practices in clinical ethics consultation and decision-making. Clin Ethics 2011; 6: 103–108. 18. Molewijk B, Verkerk M, Milius H, et al. Implementing moral case deliberation in a psychiatric hospital: process and outcome. Med Health Care Philos 2008; 11: 43–56. 19. Larkin GL. Evaluating professionalism in emergency medicine: clinical ethical competence. Acad Emerg Med 1999; 6: 302–311. 20. Pedersen R, Akre V and Forde R. What is happening during case deliberations in clinical ethics committees? A pilot study. J Med Ethics 2009; 35: 147–152. 10
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