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Difficult situations and moral questions raised during moral case deliberations in Swedish childhood cancer care – A qualitative nationwide study

  • C. Weiner
    Correspondence
    Corresponding author. Childhood Cancer Research Unit, Department of Women's & Children's Health, Karolinska Institutet, Stockholm, Sweden.
    Affiliations
    Childhood Cancer Research Unit, Department of Women's & Children's Health, Karolinska Institutet, Stockholm, Sweden

    Children Regional Health Care, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, Sweden
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  • P. Pergert
    Affiliations
    Childhood Cancer Research Unit, Department of Women's & Children's Health, Karolinska Institutet, Stockholm, Sweden

    Paediatric Haematology and Oncology, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, Sweden
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  • A. Castor
    Affiliations
    Department of Paediatrics, Lund University, Lund, Sweden
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  • B. Molewijk
    Affiliations
    Department of Medical Humanities, Amsterdam University Medical Center, Location VUmc, Amsterdam, the Netherlands

    Center for Medical Ethics, University of Oslo, Norway
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  • C. Bartholdson
    Affiliations
    Childhood Cancer Research Unit, Department of Women's & Children's Health, Karolinska Institutet, Stockholm, Sweden

    Paediatric Neurology and Musculoskeletal Disorders and Homecare, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, Sweden
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Open AccessPublished:August 12, 2022DOI:https://doi.org/10.1016/j.ejon.2022.102189

      Highlights

      Existing research knowledge.
      • Scientific compilations of difficult situations and moral questions in childhood cancer care are scarce
      New knowledge added.
      • Difficult situations included biopsychosocial information such as medical, psychosocial, and religious/cultural
      • There was a wide spread of moral questions which reflected three main themes: responsibility, mandate, and care action elements.
      • HCPs moral questions concerned shared decision-making related to the triad of stakeholders, i.e., the child, the family or other professions.

      Abstract

      Purpose

      To describe performed moral case deliberations and present a nationwide study of difficult situations and moral questions raised by healthcare professionals during moral case deliberations in Swedish childhood cancer care.

      Methods

      Written reports (n = 72) about difficult situations and moral questions were completed by healthcare professionals, trained as facilitators, who implemented moral case deliberations at all paediatric oncology centres in Sweden. A qualitative systematic text condensation was used for data analysis.

      Results

      A pattern of biopsychosocial factors was found in the difficult situations, including medical, psycho-social, and religious/cultural information. Three different themes of moral questions emerged. The first, “What is the limit of healthcare professionals' responsibilities?”, included whether, and to what degree, healthcare professionals should depart from professional values, and whether/when to interfere with parents’ choices in care. The second theme, “Who has a mandate to decide on care?”, covered conflicting perspectives on care related to decision making. The third theme, “What is the right care action to take?”, concerned the best interest of the child and moral questions about whether the chosen care action would promote a better or worse outcome.

      Conclusions

      This study contributes to increased understanding of difficult situations and moral questions raised during moral case deliberations in Swedish childhood cancer care. Biopsychosocial factors are important to take into account in order to achieve a holistic view of the situation. Although several moral questions concerned medical treatment and life and death, others were related to everyday clinical practice and the differing perspectives of children, parents, and healthcare professionals.

      Keywords

      1. Introduction

      Despite the fact that childhood cancer is rare, and that approximately 80% of afflicted children in high-income countries are cured (
      • Lam C.G.
      • Howard S.C.
      • Bouffet E.
      • Pritchard-Jones K.
      Science and health for all children with cancer.
      ), cancer is still one of the most common causes of death among children (0–15 years) in Sweden (
      National Board of Health and Welfare
      [Socialstyrelsen].
      ). Among the reasons for successful survival rates are often intensive treatment regimens and extensive supportive care provided to the child and family. When a child is treated for cancer, various stressful concerns often arise in the family. In addition to emotional exhaustion and concerns for the sick child, the logistics in the family could be challenging and the family often suffer a financial burden due to reduced working hours (
      • Abrams H.R.
      • Leeds H.S.
      • Russell H.V.
      • Hellsten M.B.
      Factors influencing family burden in pediatric hematology/oncology encounters.
      ). In some families, there are also other concerns, such as, other medical conditions or social vulnerabilities, for instance lack of social relationships, lack of proficiency in the country's majority language and/or unemployment (
      • Loh L.W.
      The importance of recognizing social vulnerability in patients during clinical practice.
      ).

      1.1 Moral uncertainty and value conflicts

      Complex decisions can be morally demanding in themselves, but also due to the different perspectives of a triad of stakeholders, i.e., the child, the family and healthcare professionals (HCPs) (
      • Badarau D.O.
      • Ruhe K.
      • Kühne T.
      • De Clercq E.
      • Colita A.
      • Elger B.S.
      • Wangmo T.
      Decision making in pediatric oncology: views of parents and physicians in two European countries.
      ;
      • Coyne I.
      • Amory A.
      • Gibson F.
      • Kiernan G.
      Information-sharing between healthcare professionals, parents and children with cancer: more than a matter of information exchange.
      ;
      • Lyren A.
      • Ford P.J.
      Special considerations for clinical ethics consultation in pediatrics: pediatric care provider as advocate.
      ). In childhood cancer care, as in all healthcare settings, moral uncertainty and value conflicts within and between stakeholders are inherent in daily care. This may create a need for HCPs to reflect on what good care entails and how to deal with moral uncertainties or disagreements. Moral uncertainty and value conflicts in childhood cancer care are often related to questions regarding what should be considered the most beneficial care actions for the child (
      • Johnson L.-M.
      • Church C.L.
      • Metzger M.
      • Baker J.N.
      Ethics consultation in pediatrics: long-term experience from a pediatric oncology center.
      ). Value conflicts regarding best care of the child can arise from situations when parents disagree with care/medical recommendations – for example, when parents prohibit HCPs from talking with the child about bad prognosis (
      • Bartholdson C.
      • Lützén K.
      • Blomgren K.
      • Pergert P.
      Experiences of ethical issues when caring for children with cancer.
      ;
      • Johnson L.-M.
      • Church C.L.
      • Metzger M.
      • Baker J.N.
      Ethics consultation in pediatrics: long-term experience from a pediatric oncology center.
      ;
      • Newman A.R.
      • Haglund K.
      • Rodgers C.C.
      Pediatric oncology nurses' perceptions of prognosis-related communication.
      ). Research into the ethics of childhood cancer practices have revealed that limits and futility of treatment and end-of-life questions are core elements in many of the value conflicts that occur (
      • Bartholdson C.
      • Lützén K.
      • Blomgren K.
      • Pergert P.
      Experiences of ethical issues when caring for children with cancer.
      ). Value conflicts could also stem from situations where HCPs question the extent to which they should protect the autonomy and integrity of the child when procedures or medical treatments have to be performed against the child's will (
      • Bartholdson C.
      • Lützén K.
      • Blomgren K.
      • Pergert P.
      Experiences of ethical issues when caring for children with cancer.
      ;
      • Johnson L.-M.
      • Church C.L.
      • Metzger M.
      • Baker J.N.
      Ethics consultation in pediatrics: long-term experience from a pediatric oncology center.
      ).

      1.2 Clinical ethics support services in healthcare

      In healthcare, various forms of clinical ethics support services (CESS) are increasingly being implemented in order to support HCPs to deal with the above-mentioned moral uncertainties and value conflicts and to improve quality of care (
      • Molewijk B.
      • Slowther A.
      • Aulisio M.
      Clinical Ethics Support.
      ). CESS aims to encourage HCPs to reflect on such questions and develop the ability to deal with moral difficulties (
      • Rasoal D.
      • Skovdahl K.
      • Gifford M.
      • Kihlgren A.
      Clinical ethics support for healthcare personnel: an integrative literature review.
      ). Furthermore, CESS offers several supportive methods including clinical ethics committees (
      • Førde R.
      • Pedersen R.
      Clinical ethics committees in Norway: what do they do, and does it make a difference?.
      ), ethics consultations (
      • Fournier V.
      • Rari E.
      • Førde R.
      • Neitzke G.
      • Pegoraro R.
      • Newson A.J.
      Clinical ethics consultation in Europe: a comparative and ethical review of the role of patients.
      ), and moral case deliberations (MCDs) (
      • Molewijk
      • Abma T.
      • Stolper M.
      • Widdershoven G.
      Teaching ethics in the clinic. The theory and practice of moral case deliberation.
      ), also referred to as ethics case reflections (
      • Bartholdson C.
      • Pergert P.
      • Helgesson G.
      Procedures for clinical ethics case reflections: an example from childhood cancer care.
      ). In this study, we will focus on MCD as a way to support HCPs in childhood cancer care.

      1.3 Moral case deliberations

      MCD is a form of ethics support which gives the interprofessional team the opportunity to systematically reflect on a specific moral question raised from a concrete clinical situation. The systematic reflection is usually guided by a trained facilitator (
      • Stolper M.
      • Molewijk B.
      • Widdershoven G.
      Learning by doing. Training health care professionals to become facilitator of moral case deliberation.
      ) who uses a specific conversation method for the moral inquiry. In this research project the Dilemma method has been used (Table 1). The Dilemma method is grounded in hermeneutic ethics including perspectives on ethics and moral learning, and focuses on practical rationality as well as stresses the importance of a critical yet constructive dialogue (
      • Stolper M.
      • Molewijk B.
      • Widdershoven G.
      Bioethics education in clinical settings: theory and practice of the dilemma method of moral case deliberation.
      ).
      Table 1The 10 steps of the Dilemma method.
      Introduction
      Presentation of the case (by the ‘case presenter’)
      Formulation of the moral question and dilemma
      Clarification questions in order to place oneself in the situation of the case presenter
      Presentation of perspectives, values and norms connected to the case
      Identification of alternative actions
      Decision on individual choice and making explicit one's considerations
      Reflection on possible group decision
      Conclusion
      Evaluation
      Led by one or two facilitators, MCD is a process that illuminates and explores the specific values and facts that arise in each individual case. The opportunity to get an overview of the different values among HCPs promotes both reflection and consideration of what is best to do in a specific situation, which can promote clinical decision-making (
      • Inguaggiato G.
      • Metselaar S.
      • Porz R.
      • Widdershoven G.
      A pragmatist approach to clinical ethics support: overcoming the perils of ethical pluralism.
      ). The reflection that takes place in the MCD session aims to contribute to one of the central goals of MCDs: to both define and improve the quality of patient care in daily clinical practice (
      • Abma T.A.
      • Molewijk B.
      • Widdershoven G.A.
      Good care in ongoing dialogue. Improving the quality of care through moral deliberation and responsive evaluation.
      ). Previous studies have revealed that implementing MCDs as a specific type of CESS can support HCPs in dealing with moral difficulties (
      • Bartholdson C.
      • Molewijk B.
      • Lutzen K.
      • Blomgren K.
      • Pergert P.
      Ethics case reflection sessions: enablers and barriers.
      ;
      • Molewijk
      • Verkerk M.
      • Milius H.
      • Widdershoven G.
      Implementing moral case deliberation in a psychiatric hospital: process and outcome.
      ;
      • Weidema F.
      • van Dartel H.
      • Molewijk B.
      Working towards implementing moral case deliberation in mental healthcare: ongoing dialogue and shared ownership as strategy.
      ). In addition, a recent study showed that HCPs in Swedish childhood cancer care, prior to the participation, had high expectations of MCDs. This was based on HCPs' perceptions that MCDs increased wellbeing individually and in the team, and improved the child's quality of care (
      • Weiner C.
      • Pergert P.
      • Molewijk B.
      • Castor A.
      • Bartholdson C.
      Perceptions of important outcomes of moral case deliberations: a qualitative study among healthcare professionals in childhood cancer care.
      ).
      In childhood cancer care, there are only a few studies that describe moral dilemmas raised during ethics consultations (
      • Johnson L.-M.
      • Church C.L.
      • Metzger M.
      • Baker J.N.
      Ethics consultation in pediatrics: long-term experience from a pediatric oncology center.
      ). In the Swedish context, one study was found regarding moral dilemmas addressed in MCDs in adult care in general (
      • Rasoal D.
      • Kihlgren A.
      • James I.
      • Svantesson M.
      What healthcare teams find ethically difficult: captured in 70 moral case deliberations.
      ). Thus, there is a lack of research and knowledge about what moral questions HCPs in childhood cancer care reflect upon during MCDs. With context-specific knowledge of these self-experienced moral questions and potentially difficult situations, the development of ethics support can be further tailored. Moreover, such knowledge could form a base for further research in how to improve both the quality of care and the triadic interactions in childhood cancer care.

      1.4 Purpose

      To describe performed MCDs and present a nationwide study of difficult situations and moral questions raised by HCPs during MCDs in Swedish childhood cancer care.

      2. Material and methods

      2.1 Design

      This nationwide qualitative study is based on written reports from MCDs in childhood cancer care.

      2.2 Setting of the study

      A training programme to become a MCD facilitator was offered during 2017–2018 to HCPs in paediatric oncology in the Nordic countries. The training programme was provided by a joint working group on ethics in the framework of the Nordic Society of Paediatric Haematology and Oncology (NOPHO) and the Nordic Society of Pediatric Oncology Nurses (NOBOS), the professional networks of physicians and nurses working in paediatric oncology in the Nordic countries. Faculty included specialized ethicists, nurses and physicians from both Sweden and the Netherlands. Managers at Nordic paediatric oncology centres identified HCPs for the course based on their interest in ethics and suitability as facilitators. During the training programme, MCDs were implemented at the facilitators’ paediatric oncology centres. The study was performed in Sweden and included all six paediatric oncology centres. Healthcare professions included in the training programme and in the study were nurses, physicians, and social worker.

      2.3 Data collection

      After each MCD the facilitators completed a written report and sent it to the research group digitally. Data collection was performed during four years (2017–2021). The written report included no sensitive or personal data. A form for a written report from facilitators of MCDs, previously used in research in Norway (
      • Molewijk B.
      • Engerdahl I.S.
      • Pedersen R.
      Two years of moral case deliberations on the use of coercion in mental health care: which ethical challenges are being discussed by health care professionals?.
      ), was translated and slightly reformulated for the purpose of describing the content of the Swedish MCDs. The reformulation included the removal of one open-ended question about actions and rephrasing the last questions. The form for the written report used in this study contained questions regarding general information, such as the date, time and place of the MCD, as well as number of participants, and open-ended questions as follows, a) “What was the moral question?” b) “Describe in two to three sentences the difficult situation presented” c) “What was the conclusion in relation to the moral question?” The written report also included questions about quality of the MCDs and facilitators experiences on what went well and what was difficult. Related to the purpose of the study the answers to the open-ended questions (a and b) forms the basis for the analysis in this article.

      2.4 Data analysis

      Performed MCDs and number of professions were calculated using descriptive statistics. The answers to the written reports were translated from Swedish to English and transcribed to digital documents. Data analysis was carried out in accordance with
      • Malterud K.
      Systematic text condensation: a strategy for qualitative analysis.
      qualitative systematic text condensation (STC), a method of qualitative analysis developed from several shared method traditions (
      • Malterud K.
      Systematic text condensation: a strategy for qualitative analysis.
      ). The analysis was performed in four main steps: 1) the transcripts were read carefully, reflectively and repeatedly to get an idea of the moral questions that were raised during MCDs and the kinds of difficult situations that were described; 2) meaning units were identified and coded into preliminary themes and sub-themes by colouring and highlighting HCPs' descriptions of the moral questions and difficult situations; and 3) a deeper analysis was performed by abstracting and thematising moral questions and difficult situations from all MCDs; and 4) the emerging themes and sub-themes were summarised and described in relation to the transcribed data. The first and the last author analysed data (steps 1 and 2) separately and discussed the themes before moving on to steps 3 and 4. By investigator triangulation, all authors were intensively involved in the analysis through discussion of the themes and their descriptions.

      2.5 Ethical considerations

      Participants were offered oral and written information about the research project, including the fact that they could withdraw their participation at any time without explanation. In completing and sending back the written report the participants gave their consent to participate in the study. The Regional Ethical Review Board in Stockholm, in its advisory statement, saw no objections to the study and decided that the study was of such a nature that the legislation concerning ethical review was not applicable (D-no: 2017/1447-31).

      3. Results

      3.1 Performed MCDs and number of professions

      At each childhood cancer centre in Sweden (n = 6), varying numbers of MCDs (n = 7–23) were conducted by the trained facilitators during 2017–2021 (Table 2). The Swedish facilitators (n = 16) included nine nurses, six physicians, and one social worker. MCDs were also performed at a paediatric unit caring for children with cancer connected to one of the childhood cancer centres. It is possible that the same HCPs participated in several MCDs performed at their centre. The majority of participants in each MCD were registered nurses, nursing assistants and physicians, but there was also a wide range of other professions represented (Table 3).
      Table 2Number of MCDs performed and number of various professions participating at each paediatric oncology centre.


      Centre
      Number of MCDs performed
      Moral Case Deliberations.
      Number of participating HCPs
      Healthcare Professions.
      ,
      The number of HCP participants presented may imply that one HCP participated in several MCDs at their centre.
      Number of participating professions
      I7356
      II97810
      III161529
      IV2314111
      V7445
      VI10917
      Total:7251016
      a Moral Case Deliberations.
      b Healthcare Professions.
      c The number of HCP participants presented may imply that one HCP participated in several MCDs at their centre.
      Table 3The various professions and their representation in the MCDs.
      ProfessionRepresented in the 72 MCDs n (%)
      Registered Nurse72 (100)
      Nursing Assistant56 (77)
      Physician44 (62)
      Sibling supporter14 (19)
      Manager (RN or MD)10 (14)
      Social worker7 (10)
      Psychologist4 (6)
      Student4 (6)
      Priest4 (6)
      Pedagogue/Play therapist3 (4)
      Physiotherapist2 (3)
      Dietician2 (3)
      Service/administrative personnel2 (3)
      Psychiatrist1 (1)
      Pharmacist1 (1)
      Occupational therapist1 (1)

      3.2 Background situations and typology of moral questions

      Background situations and moral questions were described in the facilitators' written reports from the 72 MCDs. The results are presented below in two sections: first, a summary of the background situations, and second, a typology of the moral questions. Quotes from the written reports are used to illustrate the themes. All descriptions of background situations have been modified to protect the children's identities.

      3.2.1 Background situations

      A specific pattern of biopsychosocial factors was found in the descriptions of patients’ background situations, including medical, psycho-social and religious/cultural information. This is presented as a separate part of the results, since it is related to all typology of moral questions. Medical situations included, for example, underlying diseases such as obesity and diabetes, and congenital disabilities. Complications of treatment or sequelae such as stroke and cognitive impairment were also described. Psycho-social contextual situations included situations such as unaccompanied refugees, difficult relationships between parents, and parents who for various reasons lacked the ability to support the child. Other situations described were communication barriers with colleagues, children and parents, due to lack of understanding, language diversity or undeveloped verbal communication. Religious/cultural situations included life perspectives and religious beliefs which, for example, led parents to refuse treatment.

      3.2.2 Typology of moral questions

      Through the qualitative analysis, three themes of moral questions emerged: What is the limit of HCPs’ responsibilities?, Who has a mandate to decide on care? and What is the right care action to take? (Table 4). The distribution of the themes across all childhood cancer centres is presented in Table 5.
      Table 4Overview of themes, sub-themes and illustrative quotes of moral questions raised during MCDs in childhood cancer care.
      Themes of moral questionsSub-themes of moral questionsExample quotations
      What is the limit of HCPs' responsibilities?Should we depart from professional values and care guidelines and if so, how much?Should we treat a five-month-old baby girl when we do not have the right competence?
      Should we interfere with parents' choices and if so, how much?Should we prevent the patient from travelling to Vietnam or not?
      Who has a mandate to decide on care?Should we follow the child's wishes and if so, how much?Should I try to persuade the adolescent to tell his mother about his incurable cancer?
      Should we follow parents' wishes and if so, how much?Should we listen to the mother who refuses anti-anxiety medication for her son, or should we treat the child against the mother's will?
      What is the right care action to take?Should we use coercion and if so, how much?Should I give the medicine using coercion or not?
      Should we treat and if so, how much?Should we treat with chemotherapy or not?
      Table 5Distribution of themes and sub-themes/centre.
      CentreWhat is the limit of HCPs' responsibilities?Who has a mandate to decide on care?What is the right care action to take?
      Professional values and care guidelines

      n (%)
      Percentage of all 72 MCDs
      Interfere with parents' choices

      n (%)
      Percentage of all 72 MCDs
      Child's wishes

      n (%)
      Percentage of all 72 MCDs
      Parents' wishes

      n (%)
      Percentage of all 72 MCDs
      Coercion

      n (%)
      Percentage of all 72 MCDs
      Treatment

      n (%)
      Percentage of all 72 MCDs
      I2311
      II1233
      III75112
      IV322736
      V1222
      VI5212
      Total:18 (25)13 (18)6 (8)12 (17)9 (13)14 (19)
      Theme total:31 (43)18 (25)23 (32)
      a Percentage of all 72 MCDs

      3.3 What is the limit of HCPs’ responsibilities?

      Moral questions regarding the limit of HCPs' responsibilities included situations where HCPs had doubts about their professional identity/self-understanding, related to the more virtuous question: what a good professional is. These moral conflicts involved uncertainty about whether, and to what degree, HCPs should depart from professional values, and how to deal with parents' choices in care. This theme contains two subthemes: Should we depart from professional values and care guidelines and if so, how much? and Should we interfere with parents’ choices and if so, how much?

      3.3.1 Should we depart from professional values and care guidelines and if so, how much?

      In particular, moral questions arose when HCPs believed that there was a lack of competence at the ward for treating the child's condition. Questions concerned whether HCPs at the oncology ward had an obligation to also treat other conditions, for example obesity, that were not crucial but could affect the child's care. HCPs asked whether such care was to be provided at the ward, as this could risk the patients' safety due to lack of competence.
      This sub-theme also addresses the delicate balance of offering care that is relevant to the patient, even if it is contrary to professional values and care guidelines. It also includes whether and how much it was the task of HCPs to defend care provided at the hospital when the parents were convinced that the child had been treated incorrectly. The risk of conducting unequal care provoked reflection on moral questions around adapting care to a child in a special situation.Background situation: A 14-year-old…(child) with recurrence of cancer gets visits from family members when other patients’ families are not allowed to visit their sick children because of the Covid-19 pandemic.Moral question: “Should we stick to the ward rules or make an exception for a child in a palliative and fragile situation?”
      Additionally, moral questions arose in relation to HCPs' involvement in the child's social and private sphere, such as reading the child's Facebook page/blog or attending a child's funeral or not. The question of how to deal with patients with whom HCPs have a private relationship, such as a friend or a neighbour, was also raised in MCDs. Furthermore, there were moral questions regarding work environment, for example whether HCPs were responsible for encouraging the teenager to clean the room.

      3.3.2 Should we interfere with parents’ choices and if so, how much?

      HCPs asked questions about what their responsibilities were in situations where parents' coping and parenting methods were perceived as inappropriate and considered to adversely affect the child's care. Specifically, HCPs reflected upon cases where parents failed to take responsibility in care. This included focused on their own problems or failed to follow the healthcare system's recommendations.Background situation: Boy in palliation where the mother wants to go to her home country. Air travel is not medically recommended [for the boy], but mother intends to go anyway [with her son].Moral question: “Should we prevent the patient from travelling to Vietnam or not?”
      Another question addressed in MCDs was whether and how to approach parents who negatively affected the sick child's opportunities to, for instance, socialise or eat the foods they want. Moreover, the questions included how HCPs should deal with parents' inability to support their child when they for unknown reasons did not want to be involved in care or due to their own fears. Interfering with parents' choices was also about how to handle parents' ideas about refusing certain forms of care due to their beliefs. In some cases, this led to the moral question of whether to contact social services or not.

      3.4 Who has a mandate to decide on care?

      The second theme covered moral questions about who has a mandate to decide on care. This includes HCPs' and children's/parents' conflicting perspectives on care, and contains two sub-themes related to decision-making: Should we follow the child's wishes and if so, how much? and Should we follow parents' wishes and if so, how much?

      3.4.1 Should we follow the child's wishes and if so, how much?

      This sub-theme describes HCPs' uncertainty in dealing with children's wishes, and sometimes reluctance, regarding care. HCPs questioned whether it was right or wrong to support adolescents' wishes when they had other views than their parents. Moral questions were also raised regarding the growing child's rights to decide on care actions and vital medical treatments.Background situation: 16-year-old… adolescent… mature for age. The parents thought it was up to the child to decide [about her treatment regimens].Moral question: “Should we give an adolescent blood against the family's [religious] beliefs or not?”
      Moreover, HCPs deliberated upon the balance between the child's growing autonomy and their relationship with their legal guardian; for example, the question of whether HCPs should try to convince a teenager to tell her/his parents that her/his cancer was incurable.

      3.4.2 Should we follow parents’ wishes and if so, how much?

      This sub-theme concerns the level of parental involvement and decision-making in treatment and care. Most of the moral questions raised here were about disagreements between parents and HCPs about whether treatment was beneficial. Some HCPs did not know how to deal with the parents’ desire not to talk to the child about poor prognosis and limited chance of recovery. Other difficult moral questions comprised parents who, for various reasons, refused care or certain drugs for their child.Background situation: We [HCPs] know that the patient is suffering from anxiety, that's why we want to offer antianxiety medication. The mother refuses anti-anxiety medication, …problems with the word “anxiety”.Moral question: “Should we listen to the mother who refuses anti-anxiety medication for her son, or should we treat the child against the mother's will?”
      Other questions regarding following parents’ wishes were whether parents should have a mandate to decide on life-sustaining treatment, and whether parents should be allowed to give the child complementary medicines in addition to chemotherapy, or not.

      3.5 What is the right care action to take?

      This theme concerns the best interests of the child and HCPs’ doubts about whether an identified care action will promote a better or worse outcome. This theme contains two sub-themes: Should we use coercion and if so, how much? and Should we treat and if so, how much?

      3.5.1 Should we use coercion and if so, how much?

      This sub-theme describes HCPs’ doubts about using coercion when the child is unwilling to cooperate in procedures or administration of medication. When important and sometimes life-saving procedures were at stake and the child responded fearfully, additional questions were whether or how long HCPs should wait for the child to cooperate before using coercion. Specific difficult circumstances were when children refused to receive rectal laxatives, important oral medications, nasogastric probes for nutrition/medicine, or needles for intravenous medical treatment.Background situation: Cancelled CT and biopsy [important examination due to the boy having had a suspect relapse] with deep sedation due to the 10-year-old patient refusing to cooperate.Moral question: How much coercion should we use to put an IV [intravenous] access in? Coercion or not?
      Moral questions around coercion further included situations where HCPs had to take blood samples that were neither life-saving nor crucial. Some questions also concerned whether it was right to try to persuade siblings as a kind of emotional pressure to become donors, which would involve undergoing painful procedures.

      3.5.2 Should we treat and if so, how much?

      Moral questions around the most beneficial medical treatment for the child were frequently reflected upon during MCDs. Several moral questions were identified concerning the aim of the treatment, e.g., whether continued curative therapy was meaningful or not when the chances of survival were limited.Background situation: Cognitively weakened child…… immigrant… 12 years old without [Swedish] language. … For unclear reasons, much vomiting and pain, the tumour is inoperable [uncertain prognosis]. It has not been possible to find out the child's wishes.Moral question: “Should we continue with curative or shift to [exclusively] palliative treatment?”
      There were also questions concerning the consequences and methods of treatment. Moral questions regarding methods were about whether serious medical conditions should be treated with surgery and/or chemotherapy, or not. Likewise, moral questions involved whether it was justifiable to perform medical or painful procedures on a child with incurable cancer. Other questions were whether HCPs should perform questionable procedures on sibling donors, for example, taking blood samples when there was a risk that the blood would be found to contain the same disease gene as in the sick sibling.

      4. Discussion

      This unique national study provides a description of difficult background situations and moral questions as experienced by HCPs in Swedish childhood cancer care during MCDs. Descriptions of the difficult background situations to these questions revealed patterns of medical, psychosocial, and religious/cultural information presented as biopsychosocial factors. According to
      • Engel G.L.
      The clinical application of the biopsychosocial bodel.
      , these factors should not be treated separately from the medical situation but rather in interaction with each other. In addition, these factors can be significant to take into account in moral reflections.
      There was a wide spread of moral questions which reflected three main themes: responsibility, mandate, and care action. In this section, we will discuss the findings and highlight the moral questions that emerged as central in Swedish childhood cancer care. In a previous study by
      • Fox E.
      • Bottrell M.M.
      • Berkowitz K.A.
      • Chanko B.L.
      • Foglia M.B.
      • Pearlman R.A.
      IntegratedEthics: an innovative program to improve ethics quality in health care.
      the model of “IntegratedEthics” is described and sorted into so-called ethical content domains that cover a variety of ethical problems in healthcare. In our study, moral questions are sorted into themes and sub-themes which appear to be similar to the ethical content domains found in the research by
      • Fox E.
      • Bottrell M.M.
      • Berkowitz K.A.
      • Chanko B.L.
      • Foglia M.B.
      • Pearlman R.A.
      IntegratedEthics: an innovative program to improve ethics quality in health care.
      . For example, “Professionalism in patient care” (
      • Fox E.
      • Bottrell M.M.
      • Berkowitz K.A.
      • Chanko B.L.
      • Foglia M.B.
      • Pearlman R.A.
      IntegratedEthics: an innovative program to improve ethics quality in health care.
      ) is comparable to the sub-theme “Should we depart from professional values and care guidelines and if so, how much?” The results of the present study, describing moral questions, are also confirmed by other studies that reveal that HCPs in childhood cancer care must deal with various morally difficult situations (
      • Bartholdson C.
      • Lützén K.
      • Blomgren K.
      • Pergert P.
      Experiences of ethical issues when caring for children with cancer.
      ;
      • Friebert S.E.
      • Kodish E.D.
      Kids and cancer: ethical issues in treating the pediatric oncology patient.
      ;
      • Johnson L.-M.
      • Church C.L.
      • Metzger M.
      • Baker J.N.
      Ethics consultation in pediatrics: long-term experience from a pediatric oncology center.
      ;
      • Newman A.R.
      • Haglund K.
      • Rodgers C.C.
      Pediatric oncology nurses' perceptions of prognosis-related communication.
      ;
      • Valdez-Martinez E.
      • Noyes J.
      • Bedolla M.
      When to stop? Decision-making when children's cancer treatment is no longer curative: a mixed-method systematic review.
      ;
      • Winter M.C.
      • Friedman D.N.
      • McCabe M.S.
      • Voigt L.P.
      Content review of pediatric ethics consultations at a cancer center.
      ) and difficulties in decision-making (
      • Badarau D.O.
      • Ruhe K.
      • Kühne T.
      • De Clercq E.
      • Colita A.
      • Elger B.S.
      • Wangmo T.
      Decision making in pediatric oncology: views of parents and physicians in two European countries.
      ;
      • Bartholdson C.
      • Lützén K.
      • Blomgren K.
      • Pergert P.
      Experiences of ethical issues when caring for children with cancer.
      ;
      • Whitney S.N.
      • Ethier A.M.
      • Frugé E.
      • Berg S.
      • McCullough L.B.
      • Hockenberry M.
      Decision making in pediatric oncology: who should take the lead? The decisional priority in pediatric oncology model.
      ).
      The results from this study, presented in “What is the limit of HCPs' responsibilities?” indicate that the triad of stakeholders involved in the child's care – i.e., the child, the parents and HCPs – was a common domain in which moral questions arose. Several of these questions concerned doubts among HCPs about how far their professional responsibilities should extend. We also wish to draw attention to HCPs ethical concerns related to parents and/or next-of-kin. This is presented in “Who has mandate to decide on care”. The results of this study clearly indicate that moral questions often derive from shared decision-making among these stakeholders. Controversial situations arose when parents did not follow healthcare recommendations, which has also proven to be morally difficult for paediatric HCPs (
      • McDougall R.J.
      • Notini L.
      What kinds of cases do paediatricians refer to clinical ethics? Insights from 184 case referrals at an Australian paediatric hospital.
      ). HCPs might, due to the risk of negative impact on their collaboration, be hesitant and reluctant to interfere with parents' choices for their children. They want to support and respect parents' preferences, even if their choices might not be in the best interest of the child. Research shows that it can also be challenging for parents themselves to know what their responsibility is and which role is expected of them in care situations, including the limits of their responsibility (
      • Coyne I.
      Families and health-care professionals' perspectives and expectations of family-centred care: hidden expectations and unclear roles.
      ), especially since parents are required to make decisions on behalf of their children (
      • Aarthun A.
      • Akerjordet K.
      Parent participation in decision-making in health-care services for children: an integrative review.
      ;
      • Lipstein E.A.
      • Brinkman W.B.
      • Britto M.T.
      What is known about parents' treatment decisions? A narrative review of pediatric decision making.
      ). Parents' ability to act as responsible decision makers can also be affected by their feelings of insecurity and loss of control, which is common among parents in childhood cancer care (
      • Gunter M.D.
      • Duke G.
      Social support to reduce uncertainty in childhood cancer in South Texas: a case study.
      ).
      It could sometimes be a challenge for HCPs to ensure the child's best interest, while also ensuring cooperation with the child's family in every situation (
      • Coyne I.
      • Holmström I.
      • Söderbäck M.
      Centeredness in healthcare: a concept synthesis of family-centered care, person-centered care and child-centered care.
      ). Perhaps HCPs can pro-actively deal with this challenge by involving all stakeholders in a meeting in order to reflect upon everybody's responsibility in the shared decision-making process. This explicit communication can contribute to a better understanding of all ideas and expectations regarding the various responsibilities. Furthermore, the triad of stakeholders gave rise to moral questions related to adolescents' growing autonomy, such as when the child had a different view of care than their parents. In these situations, it is clear that it is a challenge for HCPs to balance the wishes of the child and the parents, whilst also protecting the treatment alliance. It is likely that this is also a challenge for patients and families. In a study by
      • Cho H.L.
      • Grady C.
      • Tarzian A.
      • Povar G.
      • Mangal J.
      • Danis M.
      Patient and family descriptions of ethical concerns.
      it was found that parents depended on friends and family to deal with moral concerns in care, meaning that they were not involved in reflections in the clinic. We would therefore argue that children and parents should be involved in the structured process of reflection in the clinic on moral questions. However, it has not yet been determined what the best way to do this might be (
      • Bartholdson C.
      • Pergert P.
      • Helgesson G.
      Procedures for clinical ethics case reflections: an example from childhood cancer care.
      ). Research on how to include children and parents in ethics support in order to understand and overcome different perspectives on treatment and shared decision-making would be of great interest.
      The problem of uncertainty about treatment and level of care, presented in “What is the right care action to take?” is well known and has been discussed in previous studies (
      • Bartholdson C.
      • Lützén K.
      • Blomgren K.
      • Pergert P.
      Experiences of ethical issues when caring for children with cancer.
      ;
      • Johnson L.-M.
      • Church C.L.
      • Metzger M.
      • Baker J.N.
      Ethics consultation in pediatrics: long-term experience from a pediatric oncology center.
      ;
      • Odeniyi F.
      • Nathanson P.G.
      • Schall T.E.
      • Walter J.K.
      Communication challenges of oncologists and intensivists caring for pediatric oncology patients: a qualitative study.
      ;
      • Pye K.
      Exploring moral distress in pediatric oncology; a sample of registered practitioners.
      ). Moral questions concerning the use of coercion in relation to the best interest of the child are commonly encountered in paediatric care and were encountered in the MCDs in this study also. Care situations where the child does not cooperate may be demanding for all involved, as has been highlighted in previous research (
      • Svendsen E.J.
      • Pedersen R.
      • Moen A.
      • Bjork I.T.
      Exploring perspectives on restraint during medical procedures in paediatric care: a qualitative interview study with nurses and physicians.
      ). When HCPs are faced with the option of holding the child down or else risking that the child does not receive the treatment, he/she needs, a conflict of values between beneficence and nonmaleficence is likely (
      • Beauchamp T.L.
      • Childress J.F.
      Principles of Biomedical Ethics.
      ). An interesting aspect is that although it might always be distressing for HCPs to use coercion, research indicates that the situation becomes morally distressing only when the action is considered morally wrong (
      • Dudzinski D.M.
      Navigating moral distress using the moral distress map.
      ). Clarifying the morality of these actions by ethics support would most probably help HCPs to deal with these morally distressing situations.
      The wide range of moral questions – including medical, nursing and organisational – could indicate that the questions were presented by various professions. It is also worth noting that different kinds of moral questions have a tendency to be raised in different forms of CESS. In a study from Norway (
      • Forde R.
      • Vandvik I.H.
      Clinical ethics, information, and communication: review of 31 cases from a clinical ethics committee.
      ), the majority of moral questions brought to a clinical ethics committee concerned withholding or withdrawal of treatment, whilst in the present study, where HCPs themselves reflected on moral questions during MCDs, there was equal emphasis on everyday clinical situations. This difference suggests that the primary function of an ethics committee is to help with fraught decision-making, whereas the emphasis of MCD is more on helping HCPs clarify their own moral thinking and strengthen mutual understanding and cooperative relations.
      As discussed above, it will be useful and learningful to explore in future research how to involve children and parents in ethics support, and in which way this might be beneficial for paediatric care. Having children participate in ethics support could be a way for HCPs and parents to involve the child in the decision-making process. It would be of great interest to explore what kind of moral questions children and parents would bring to MCDs and in which way CESS can be meaningful for the quality of care and the triadic interactions.

      4.1 Study strengths and limitations

      A strength of this research is that it is the first to provide a description of authentic moral questions raised during MCDs at all six childhood cancer centres across Sweden. Our results complement other studies in different healthcare contexts that explore moral dilemmas. The investigator triangulation of the analysis strengthens the validation of the final results. When different researchers work together, misinterpretations and individual bias could be controlled (
      • Moon M.D.
      Triangulation: a method to increase validity, reliability, and legitimation in clinical research.
      ). Furthermore, this type of triangulation broadens the analytical space and increases insight (
      • Malterud K.
      The art and science of clinical knowledge: evidence beyond measures and numbers.
      ). A further strength is the four-year period of data collection, enabling a variation of experiences. A possible limitation may be that the answers to the written reports were quite condensed, which may have resulted in a lack of information. Another limitation could be that the facilitator written reports did not provide information about the professions of those who raised the questions. It is likely that different professional groups face slightly different moral questions related to their various roles and responsibilities in the healthcare setting. Although in this study participants in the MCDs included various professional groups, nurses and nurse assistants were predominantly represented. Moral questions of a different nature may have arisen if other professional groups had been predominantly represented.

      4.2 Clinical implications

      Additional attention to biopsychosocial factors, and knowledge about the types of moral questions HCPs perceive and reflect upon in childhood cancer care, could be used to improve care for the children and their families and further tailor CESS as well as the training of facilitators to this specific context. For example, developing a specific ethics support tool or moral compass for dealing with moral questions associated to decision-making. The moral compass could be a complement to MCDs as it could be used both individually and in the interprofessional team alone or together on a daily basis (
      • Hartman L.
      • Metselaar S.
      • Widdershoven G.
      • Molewijk B.
      Developing a 'moral compass tool' based on moral case deliberations: a pragmatic hermeneutic approach to clinical ethics.
      ). The moral compass could give both a normative and process support, potentially saving time. The findings of this study can be used in comparative studies on moral questions and can function as an incentive for further research into children's and parents' participation in CESS such as MCD.

      5. Conclusions

      This study contributes to an increased understanding of difficult situations and moral questions raised by HCPs during MCDs in Swedish childhood cancer care. Biopsychosocial factors are important to take into account in order to achieve a holistic view of the situation. The results of this study are thematised into moral questions about responsibility, mandate, and care action. The triad of stakeholders seems to be important for the occurrence of moral questions in childhood cancer care. Specifically, HCPs struggle to balance between children's and parents' wishes in relation to treatment recommendations and professional values. Although several moral questions reflected on by HCPs often concerned treatment and questions of life and death, they were also commonly related to everyday clinical practice.

      Funding

      Swedish Childhood Cancer Fund [ PR2016-0020 , TJ2017-0011 and TJ2019-0009 ], Strategic Research Area Health Care Science (SFO–V ) and Stockholm County Council [ LS 2018-0792 ] made this work possible by their funding.

      CRediT authorship contribution statement

      C. Weiner: Data curation, Formal analysis, Investigation, Validation, Visualization, Writing – original draft, Writing – review & editing. P. Pergert: Conceptualization, Formal analysis, Funding acquisition, Investigation, Methodology, Resources, Supervision, Validation, Visualization, Writing – review & editing. A. Castor: Formal analysis, Investigation, Supervision, Visualization, Writing – review & editing. B. Molewijk: Conceptualization, Formal analysis, Investigation, Methodology, Supervision, Visualization, Writing – review & editing. C. Bartholdson: Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Resources, Supervision, Validation, Writing – review & editing.

      Declaration of competing interest

      No conflict of interest was reported by the authors.

      Acknowledgements

      We would like to thank the facilitators for completing and sending the facilitator written reports to the researchers, and all HCPs who contributed to this study by participating in the MCDs.

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