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Cecilia Bartholdson, RN, BN, PhD Candidate Kim Lu¨tze´n, RN, PhD Klas Blomgren, MD, PhD Pernilla Pergert, RN, PhD
Experiences of Ethical Issues When Caring for Children With Cancer K E Y
W O R D S
Background: The treatment for pediatric cancer is often physically,
Cancer care
socially, and psychologically demanding and often gives rise to ethical issues.
Ethics
Objective: The purpose of this study was to describe healthcare professionals’
Interprofessional care
experiences of ethical issues and ways to deal with these when caring for children
Palliative care
with cancer. Methods: A study-specific questionnaire was given to healthcare
Pediatrics
professionals at a pediatric hospital in Sweden. Qualitative content analysis was used to analyze answers to open-ended questions. The data were sorted into 2 domains based on the objective of the study. In the next step, the data in each domain were inductively coded, generating categories and subcategories. Results: The main ethical issues included concerns of (1) infringing on autonomy, (2) deciding on treatment levels, and (3) conflicting perspectives that constituted a challenge to collaboration. Professionals desired teamwork and reflection to deal with ethical concerns, and they needed resources for dealing with ethics. Implications for Practice: Interprofessional consideration needs to be improved. Forums and time for ethics reflections need to be offered to deal with ethical concerns in childhood cancer care. Conclusions: Experiences of ethical concerns and dealing with these in caring for children with cancer evoked strong feelings and moral perplexity among nursing staff. The study raises a challenging question: How can conflicting perspectives, lack of interprofessional consideration, and obstacles related to parents’ involvement be ‘‘turned around,’’ that is, contribute to a holistic perspective of ethics in cancer care of children?
Author Affiliation: Department of Women’s and Children’s Health, Karolinska Institutet, Stockholm, Sweden. This research was supported by grants from the Swedish Cancer Foundation and AFA Insurance. The authors have no conflicts of interest to disclose. Pergert received a grant for this project from the Swedish Cancer Foundation (grant number
Ethical Issues When Caring for Children With Cancer
CAN 2009/912) and AFA Insurance (grant number 120019). For the remaining authors, none were declared. Correspondence: Cecilia Bartholdson, RN, BN, PhD Candidate, Department of Women’s and Children’s Health, Karolinska Institutet, Astrid Lindgren Children’s Hospital, Q6:05, 171 76 Stockholm, Sweden ([email protected]). Accepted for publication December 30, 2013. DOI: 10.1097/NCC.0000000000000130
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I
n Sweden, about 300 children and adolescents up to the age of 19 years are diagnosed with cancer every year. In 2011, a total of 388 children and adolescents aged 0 to 19 years were diagnosed with some type of cancer.1 Of these children, 40% had leukemia or lymphoma, whereas about 30% had brain tumors. Leukemia is the most common malignancy in infancy, and its incidence peaks around the ages of 2 to 3 years, whereas brain tumors occur about as frequently among the youngest as among the oldest children.1 It is important to note that children’s cancers differ from those of adults. Children’s tumors are more often aggressive and fast growing.2 Although 75% of children diagnosed with cancer today are cured,2 the treatment is often physically, socially, and psychologically demanding. Each child’s specific situation often gives rise to ethical issues and disagreements about treatment and care.3Y5 Ethical issues occur when there is a clash of values between individuals, or within an individual, concerning which of the possible options should be chosen.6 Previous research has shown that the experience of ethical difficulties varies depending on cultural differences7 and different professions.8 In pediatric care, common ethical issues include what procedures to adopt when children are unwilling to cooperate and complex decisions about life and death.5,9 Pediatric care is special because of children’s need to have a parent/guardian present and participating in caring procedures and decisions but also because of the rights of children for respect of their views and wishes, according to their developmental level and growing autonomy.10
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Objective
The purpose of this study was to describe healthcare professionals’ experiences of ethical issues and ways to deal with these when caring for children with cancer.
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Data Collection We placed a questionnaire containing both open-ended and multiple-choice questions in the personal mailboxes of all the healthcare professionals and in a pile beside the mailboxes of physicians. Nursing staff at the neuro pediatric unit answered the questionnaire during an educational session. In this article, we focused on the responses to the open-ended questions. A pilot of the questionnaire was conducted with 9 participants with specific expertise in ethics, and the open-ended questions were added as a result of the pilot. The open-ended questions were as follows: 1. Please mention examples of external circumstances that have prevented you from doing what you believe is right/best in relation to ethical issues in clinical care/treatment of patients. 2. Please briefly describe the ethical issues you feel are the most frequent in your work. 3. Please briefly describe the ethical issues you feel are most difficult when it comes to knowing what is right/wrong in your work. 4. Please briefly describe the ethical issues which, in your experience, lead to the most frequent conflicts with your coworkers. 5. Please mention different ways of dealing with ethical issues that you commonly use at your unit. 6. Do you have any other ideas about what you could do to deal with ethical issues? 7. Please briefly describe your experiences of teamwork in dealing with ethical issues in healthcare/treatment of patients at your unit. In summary, what is your experience of ethical issues when caring for children with cancer? After the pilot study had been conducted, the questionnaire was distributed to the 3 participating units. A total of 87 completed questionnaires were collected (Table 1).
Data Analysis Qualitative content analysis11 was applied to the answers in the returned questionnaires. First, all the answers from the open-ended questions were transcribed verbatim into digital documents. Next, the first author read through the text several times to get an overall picture of what the respondents had
Methods
Study Participants Participants included physicians, registered nurses, and nurse aides. With nurse aides, we mean nonYregistered nursing assistants educated on a college level in general care or child care. The healthcare professionals were working at a publicly funded children’s hospital in Sweden on a pediatric oncology unit and inpatient units for children with chronic diseases and for neurological diseases. In 2 of the participating units, both nursing staff and physicians participated. In the third unit, only 1 physician participated. Each participating healthcare professional received written information about the purpose of the study as well as information regarding confidentiality and anonymity. Because children with a cancer diagnosis are admitted at the other 2 units as well, apart from the pediatric oncology unit, we assumed that healthcare professionals from these units would also experience ethical issues related to pediatric cancer.
Table 1 & Response Rates to the Questionnaire for the Different Hospital Units
Hospital Unit
Physicians Nurses Nurse Aides
Pediatric hematology and oncology Neuro pediatric Pediatric chronic diseases
8/13
11/25
9/14
6/a 1/a
14/14 9/25
19/19 10/24
Data are presented as responding participants/total participants. a It is not possible to know the number of questionnaires that were distributed to physicians in these 2 groups because the questionnaires were placed in a pile beside the mailboxes as well as in personal mailboxes. An estimated number are 10 to 30 distributed questionnaires for these 2 groups. Furthermore, this Children’s Hospital is a teaching hospital, and many physicians work at several units and some do not even work in the clinic (researchers) even though they have their personal mailbox placed there.
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expressed. The data were divided into 2 domains as a way of roughly dividing the text into different subject areas.12 The 2 domains are ethical concerns and dealing with ethical concerns. Meaning units were coded into subcategories (for examples, see Table 2)11 using a computer program for qualitative analysis, N Vivo 9.13 The software program gives the researcher the opportunity to structure data. Memos about each category were written by the first author. The categories were then compared in order to group data. The aim of grouping data was to reduce the number of categories by combining those that were similar in meaning and intent.11 Finally, main categories in the different domains were identified. The last author read all the transcribed text to get a deeper understanding, and discussions were then held between all the authors regarding the domains, memos, categories, and subcategories.
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Table 3 & Overview of the Analysis Domain Ethical concerns
Categories Infringing on autonomy Deciding on treatment levels Conflicting perspectives
Subcategories Inflicting suffering Limiting truth-telling Timing the breaking point Balancing pain relief
Interprofessional differences Parents perspectives Cultural differences Dealing with Interprofessional Teamwork ethical concerns consideration Reflections on ethical concerns Resources for Time and personal space ethics Ethical competence
Results
The participants reported similar experiences. However, some differences between professional groups are described below. Although several participants wrote that they thought that it was difficult to write about ethical issues and would have preferred group interviews, many answers were extensive. The categories are exemplified with quotes and are also presented in Table 3. The data were divided into 2 domains: ethical concerns, including answers from questions 1 to 4 and 7, and dealing with ethical concerns, including answers from questions 5 to 7. Ethical concerns included value conflicts when caring for children with cancer. The domain dealing with ethical concerns contained desired tools for dealing with ethical concerns, to be able to provide an ethically justifiable cancer care.
Ethical Concerns The healthcare professionals described many examples of ethical concerns that they experienced, and these have been categorized as infringing on autonomy, deciding on treatment levels, and conflicting perspectives. INFRINGING ON AUTONOMY
To infringe on a child’s autonomy is to go against the child’s will and perform actions and interventions that the child does
Table 2 & Examples of Meaning Units,
Subcategories, and a Category From the Domain Ethical Concerns
Meaning Unit
Subcategories
‘‘Giving injections to children against their will, painful procedures, holding down’’ ‘‘Parents want to protect their children from tough information, eg, that the patient is going to die’’
Inflicting suffering
Category Infringing on autonomy
Limiting truth-telling
Ethical Issues When Caring for Children With Cancer
not want or not to give the child a chance to be included in his/her own care decisions. Nurse participants described children’s autonomy as something that can be violated. Data reveal that nurses and nurse aides experienced powerlessness and reported intense experiences of interventions that were against the child’s wish. This was perceived as an ethical concern and caused upset feelings and thoughts about children’s care. Physicians did not specifically mention anything concerning infringed autonomy as an ethical concern. Infringing on autonomy includes inflicting suffering and limiting truth-telling. Inflicting suffering. Nursing staff reported the experience of forced procedures, and they saw causing pain to children as an ethical concern. Procedures against the child’s will were described as a possible infringement on the child’s autonomy. Forced procedures created unnecessary suffering and were carried out on a daily basis in terms of holding the child down when taking blood samples, for radiology and in other situations. In some cases, forced procedures were carried out on a routine basis and flexibility was missing. Furthermore, forcible procedures were carried out even when the child had very small chances of surviving. Nurses and nurse aides experienced frustration and powerlessness; they had to perform nursing interventions that they did not want to carry out. The person who delegated/prescribed the intervention was usually not present when it was carried out. Children’s autonomy is violated e.g. through holding them down by force. (Nurse) Limiting truth-telling. When healthcare professionals felt that they were being prevented by parents, medical circumstances, and colleagues from telling the truth about the child’s illness and prognosis, they perceived that they were infringing on the child’s autonomy. The child’s opportunities for giving his/her views on care issues were limited when truth-telling was limited. Healthcare professionals experienced an ethical problem when they were impeded from telling the child the truth. Nurses and nurse aides perceived not telling the truth as a frequent ethical concern. They described how parents restricted the information given to the child.
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Parents want to cover up information. (Nurse) Informing the children about their own disease. To be forced to avoid telling the truth when a child asks about samples being taken, for example. (Nurse) DECIDING ON TREATMENT LEVELS
Deciding on the treatment was experienced as an ethical problem when it was not clear what was best for the patient. Different perspectives affected what treatment the healthcare professionals considered was right, especially when the treatment had uncertain benefits for the patient. What is meaningful and correct treatment for a severely ill/injured child when no curative treatment is available? (Physician) Deciding on treatment levels includes timing the breaking point and balancing pain relief. Timing the breaking point. The breaking point is an invisible point in time when the transition from curative to end-of-life treatment occurs. Opinions differed among physicians, nurses, and parents as to when the breaking point occurred/should occur. We think differently about where the line is drawn. (Nurse) The breaking point was a major concern for all professional groups and often led to conflicts within the care team. For example, 1 nurse aide wrote: ‘‘The transition to end-of-life care, physicians aiming for cure.’’ Thus, the transition was of interdisciplinary interest. Physicians had to make the decisions regarding limitations of life-sustaining treatment and the changed aim of the treatment. They often felt uncertain about when to make this decision to achieve the best possible care for the patient. It is unclear what the best treatment for an individual patient is. When should the decision to end treatment and begin end-of-life care be taken? (Physician) Balancing pain relief. Pain relief is highly influenced by the overall goal of the treatment. When the purpose is end-of-life care, the attitude to pain relief is often very generous. However, when there is a curative intention, other aspects need to be taken into consideration, such as pharmacological adverse effects and possible chemical addiction. Furthermore, the parents may want their child to be awake as much as possible, rather than asleep on high doses of analgesics. When a child had pain, it affected parents and healthcare professionals. Nursing staff perceived that it was hard to collaborate with parents who had a different opinion concerning the pain relief of their child. The disagreement could be about parents and nursing staff wanting more or less medication for pain relief. On some occasions, nursing staff had a different view of whether medication for pain relief really was necessary. Anxiety in children added complexity. There were difficulties involved in treating pain in a child/teenager who had a diagnosed addiction, fearing that the patient wanted pain relief for the ‘‘wrong’’ reasons. At the same time, participants felt powerless when a patient was in pain and they could not do anything to ease the burden of the pain. The level of acceptance
regarding pain was experienced differently by different professionals. Pain relief sometimes led to conflicts between healthcare professionals. In many cases there are large disagreements between us. This can lead to discussions, pretty heated ones sometimes. Especially on the issue of pain relief. (Nurse) CONFLICTING PERSPECTIVES
Conflicting perspectives describes different values regarding care. Interprofessional differences, parent’s perspectives, and culture differences affect the perception of the ethical concern. Interprofessional differences. Interprofessional differences were related to different professional cultures, experiences, and education as well as deriving from personal values and moral beliefs. Nurses felt that they were unable to influence the medical treatment and thought that the treating physician had a different view and another goal. One nurse wrote: ‘‘Physicians and the other professions are working towards different goals.’’ Nursing staff had a caring role aimed at relief and comfort and experienced the patients’ suffering at close hand, which affected their perspective. They made decisions about nursing actions, but they did not make the crucial decisions regarding medical treatment. Mostly I think nurses and nurse aides have the same opinion about what should be done or not. The physicians do not always see the same things we do, because they don’t see the patient in the same way/as frequently as we do. (Nurse) Physicians described how nursing staff often had a different point of view regarding medical treatment and procedures and acknowledged that dialogue was absent in these cases. The lack of dialogue was viewed as secondary to time constraints and to different views on the role/function of suffering. Physicians had the role of medical decision makers, with ultimate responsibility for the child’s future health. Parent’s perspectives. This is about the challenging situations in pediatric cancer care caused by ethical concerns related to parents’ involvement in the child’s care. The parents were described as a link between the child and the healthcare professionals and thus important when deciding present or future care for the child. Ethically problematic situations occurred when healthcare professionals were aware of what the parents wanted but at the same perceived that the parents did not fully grasp and understand the situation or if they had conflicting values. The parents may, for example, have wanted to continue to treat the child at any price, or they wished to terminate the curative treatment when physicians wanted to continue it. Of course it is difficult for the parents to accept that you cannot save the child and sometimes the parents perceive that we’ve given upIthough they still see that there is hopeI. Since parents do not want to accept that the end is near, they sometimes forget to make the most of their last days with the child. This is very difficult. (Nurse)
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Cultural differences. Cultural differences is about challenges when families and staff of different cultures met in pediatric care and were dependent on collaboration to provide cancer care where the patients’ dignity and integrity were maintained. Collaboration between parents and professionals was believed to be essential for good healthcare. Participants sometimes experienced conflicting perspectives with parents with religious convictions or foreign backgrounds; in particular, they were often mentioned as having different preferences. For example, foreignborn parents often chose not to inform their child about the severity of the illness because they wanted to protect their child. Physicians faced difficult ethical issues when parents wanted to refrain from treatment because of religious convictions, exemplified by the following quote from a physician: ‘‘The patient would not accept treatment because of religious convictions.’’
Dealing With Ethical Concerns In their answers to questions about ways to deal with ethical concerns, participants expressed a desire to deal with these difficult situations in a better way. Dealing with ethical concerns includes a desire for interprofessional consideration and resources for ethics. INTERPROFESSIONAL CONSIDERATION
This category includes subcategories such as teamwork and reflection on ethical concerns as an expressed need from the participants and as essential for dealing with ethical concerns. Teamwork. In our data, teamwork was described as different professionals working together while having different tasks based on their professional roles. These professionals were interdependent to fully provide for proper care. There was a variation in how participants experienced teamwork. Sometimes, it did not function properly. Healthcare personnel reported a lack of interprofessional interaction and not having a forum for reflection. We have no teamwork. (Nurse) At other times, teamwork was satisfactory. For example, 1 physician wrote: ‘‘Iwe have a good teamwork, nurse aides, physicians and nursesI.’’ A strong desire for improved respect, communication, and trust was also expressed by participants. Nurses wanted to be listened to and they also wanted the team to spend more time with and listen to patients and relatives.
tests prescribed that destroy the peace of the dying child and create the wrong kind of hope or frustration for parents. (Nurse aide) A need for teamwork was perceived to exist even among colleagues of the same discipline. For example, colleagues might deviate from the original care plan in order to be ‘‘nice.’’ This led to conflicts. Several physicians repeatedly described how they were satisfied with the teamwork within the group of physicians, although having less experience of teamwork in interprofessional clinical ethics case reflections. A very good climate for discussion among colleagues, little experience of teamwork. I have no experience of teamwork; we already have a good basis for the discussion among physicians. (Physician) Reflection on ethical concerns. To come together as an interdisciplinary team and reflect about the ethical challenge was a desired change. Clinical ethics case reflections did occur to some extent and were a helpful way of handling ethical concerns. These reflections were spontaneous and informal as well as organized and formal and were carried out within the professional groups and with parents. Physicians reflected with their colleagues on a daily basis. Reflections could be in the form of coffee-break discussions, scheduled briefings at the end of the day, rounds, consultation with an external expert, and finally, consultation with the ethics committee at the hospital. Some clinical ethics case reflections were seen as taking place ‘‘too late’’ in the care process even though the ethical issue was obvious to study participants. ‘‘I believe that ethical problems are discussed too late.’’ (Nurse) Ito pick up on it at an earlier stage, when an ethical dilemma has developed or is developing. (Nurse Aide) Study participants across clinical units described wanting forums for discussing patient-related ethical concerns in a structured way that took place earlier in the process; nursing staff specified wanting the physician to attend. Participants also wanted advice on decision making and sufficient time allocated for the interdisciplinary reflections. Structure can help to ensure that everyone is heard and that you communicate conclusions to everyone. (Physician) RESOURCES FOR ETHICS
Professional hierarchy was seen as contributing to a lack of interprofessional interaction. In some cases, physicians believed that the nurses’ knowledge level was insufficient regarding the medical decision, thus preventing full understanding. Nurses reported the experience of not feeling that they were listened to, involved, or supported by physicians.
Resources for ethics, described in subcategories as time and personal space as well as ethical competence, were perceived as likely to promote handling of ethical concerns. Lack of resources created obstacles to do what was believed as ethically correct in the clinical context. Time and personal space. Participants perceived that lack of time and space repeatedly led to ethical concerns in care. Lack of time meant that children could not be prepared for procedures, which increased the use of force that limited the child’s autonomy. Lack of time affected being able to gather information and communicate with others.
The physicians’ own insecurity in dealing with severely ill and dying children. There are so many (unnecessary)
Stress and lack of time makes it hard to be able to reflect together. (Nurse)
Enhanced teamwork can create better communication between the various professional categories. (Nurse)
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Physicians pointed out that teamwork was adversely affected by lack of time, which led to poor communication and potential conflicts related to ethical concerns. Lack of space (availability of private rooms) reduced opportunities for private conversations and reflections. A shortage of time and space for individual conversations. Only certain types of conversations are treated with that level of respect (e.g. the social worker). Rounds are made even when others can hear. (Nurse Aid) Ethical competence. Further training was described as a needed resource in dealing with ethical concerns. Being uncertain about moral principles and core values and feeling a lack of ethical competence contributed to uncertainty in decisions.
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Discussion
The major findings have been divided into 2 domains, reflecting the objectives of the study: ethical concerns and dealing with ethical concerns. Infringing on a child’s autonomy is an ethical concern identified in this study. Even though from a legal point of view, children might not have full autonomy, children’s autonomy is something that can be violated, according to our results. Infringing on autonomy includes concern about inflicting suffering and carrying out unnecessary treatment. This is similar to a study of nurses in Italy in which items such as ‘‘carrying out a physician’s order for unnecessary tests and treatment’’ had a high average frequency of items that generated moral distress.14 According to previous studies, interventions are carried out by nurses against the child’s wishes in pediatric units, becoming an ethically problematic situation that creates moral stress in nurses, particularly if they do not agree with the procedures.14Y16 Nurses risk becoming caught between the child’s wishes and the prescribed intervention. This is a challenge for the involved healthcare professionals. Knowledge and training may be key here, as healthcare professionals call attention to ethical concerns and contribute by being a part of ethics case reflections, less suffering may be achieved for the patient. Another autonomy-related issue is dealing with the truth about the child’s diagnosis, treatment, and prognosis. Several participants stated that parents prevented them from telling the truth. Being prevented from truth-telling has been identified as an ethical problem in previous studies14,15 and is related to moral stress.14Y16 Healthcare professionals may protect themselves and preserve hope in end-of-life care situations by balancing truth-telling.17 Complex ethical issues occur in all healthcare settings, especially in end-of-life situations.3,4 Treatment limitation is an example of an ethical problem. Interprofessional conflicts are common in these situations, and research indicates that parents and healthcare professionals in pediatric care may have conflicting opinions about what is best for the child.18 In our study, deciding on treatment levels included the ethical concern of timing the breaking point. The transition, described as an invisible point in time when the purpose of care changes
from cure oriented to nonYcure oriented, was a major concern related to ethically problematic situations. The transition process can be protracted because the decision of the breaking point has a major impact on the transition itself. Experiences of the breaking point were based on whether the participant had a decision making role or not. Different perspectives influence reasoning at this critical time. A study on barriers to palliative care for children showed that physicians and nurses perceived different barriers to palliative care. Three contrasts between physicians and nurses were identified: culture, treatment goals, and lack of an ethics committee.19 The most common barriers were uncertainties in prognosis and discrepancies in treatment goals.19 Another study of pediatricians’ perception of palliative care concluded that the generation of practical definitions of palliative care may increase chances of palliative care being introduced at an earlier stage for children with limited chances of survival.20 On the basis of the results from our study, healthcare professionals appear to strive toward the best interests of the child. However, there are disagreements between nursing staff and physicians on treatment levels, and this is related to the differing perspectives on what is actually in the best interest of the child. This may be explained, in part, by the dramatic improvement in the treatment outcomes for childhood cancer in the Western world, as well as the fact that some pediatric oncologists have personally experienced this improvement during their careers. Some report experiencing ‘‘miracles,’’ when children have been cured after receiving a treatment with no previously documented effect. This experience may well make it even harder to decide to cease trying to cure a child’s disease. In a Swedish study, physicians with extensive experience in pediatric oncology were interviewed, and the following quote exemplified how they sought to do everything to obtain more knowledge and information: It’s an ethical exhortationIa part of our professional ethicsI. Never ever to give up before you have exhausted every prospect of knowledge concerning that specific type of cancerIand nothing more can be done.21(p479) On top of that, pediatric cancer care affects the whole family; it is very stressful for relatives, especially parents and siblings, when a child is diagnosed with cancer.22,23 In the present study, deciding on treatment levels included balancing pain relief. This has been identified in several studies as an ethical problem experienced by nurses and contributing to feelings of insecurity and guilt and has been defined as coping with patients’ suffering.15 Furthermore, participants described how interprofessional interaction sometimes did not function properly. It was principally nursing staff who described experiencing a lack of interprofessional collaboration and having no forum for reflection. Both caused great frustration and may, as reported previously, represent real obstacles to our interprofessional working ability.24 These obstacles may be rooted in a sense of another discipline being different from our own profession and thus ‘‘not like us.’’24 The core challenge to collaboration in the present study was conflicting perspectives. Conflicting perspectives included different professional perspectives; according to Leininger,25
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there are different professional cultures, including a nursing culture and a medical culture. Even though Swedish physicians have not sworn the Hippocratic oath since 1886,26 their professional duty has focused on treatment and cure. The skills description for Swedish nurses includes, among other things, the ability to satisfy the patient’s basic and specific needsVphysical, mental, social, cultural, and spiritual.27 Comparing these 2 descriptions of duties, it is clear that we are dealing with 2 different professions with different training and different guidelines but who are supposed to care for and treat the same patient. Suitability of medical treatment has previously been identified as an ethical problem causing conflict and resulting from the different perspectives of nurses and physicians.15 Conflicting perspectives in the present study also include parents’ perspectives. Parents’ perspectives may differ from healthcare perspectives and may be influenced by their close relationship with their child. Parents are closest to the child and the child’s suffering, and they have to live through both the child’s pain and disease and the thought and fear of losing their child.28 This may result in them doing everything that they can to keep their child alive as long as possible and may contribute to a complicated relationship with professionals. In a previous study, ‘‘Follow the family’s wishes to continue life support even though it is not in the best interest of the child’’ was an item that generated moral stress in nurses.14 In the domain of dealing with ethical concerns, all identified wishes were on a practical level: desiring interprofessional consideration on ethical concerns. Structured interprofessional clinical ethics case reflections, in which healthcare professionals are able to state their perspective and arguments, in relation to patient cases may be a practical solution to this energy-consuming issue. A previous study found that interprofessional ethics reflections could be a forum for creating awareness across professional boundaries29 and thus create a foundation for improved teamwork. The category of resources for ethics includes time and personal space as well as competence. Organizational rules and norms have been shown to be a potential threat to nurses’ ethical integrity.15 Lack of moral time has been described as a healthcare nemesis, as healthcare organizations and professionals are encouraged to make time for ethics.30
Method Discussion A possible limitation of the study is that because the participants were from 3 different pediatric units, their perceptions of the questions and their interpretation of their content may have contributed to different answers based on the unit they were working at. However, because all the units treated children with cancer and other pediatric diagnoses with similar issues, it is likely that they refer to similar situations. One data collection limitation was identified when several participants expressed that it was difficult to write about ethical issues, and this, in combination with time constraints due to the heavy workload in healthcare today, might also explain why some of those who received the questionnaire did not respond. The data also relied on the participants’ understanding of what is meant by ethical issues and their ability to express in writing their perceptions and
Ethical Issues When Caring for Children With Cancer
experiences. Moreover, we have no data describing the working conditions under which the healthcare professionals wrote their responses. The advantages of a questionnaire, which include cost, anonymity, and avoiding interviewer bias,31 were among the reasons for choosing this method, but had we known in advance the frustration this would cause, we would probably have changed the data collection method, opting for focus group interviews as a method for the open-ended questions.
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Implications for Practice
Awareness of ethical issues, raised by healthcare professionals, can contribute to having meetings with the families, patients, and caregivers to ensure that all are ‘‘on the same page’’ regarding prognosis and the care needed. Educating healthcare professionals in basic ethics and in identifying ethical concerns and then having a plan for where to bring issues could facilitate caring for children with cancer. The leaders of the organization need to take into count that reflection is needed to deal with the ethical concerns and that ethically problematic situations could be made easier by fulfilling the needs expressed by healthcare professionals, and this may involve contributing new or differently distributed resources.
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Conclusions
Healthcare professionals’ experiences of ethical issues and dealing with these in caring for children with cancer seem to evoke strong feelings and moral perplexity among nursing staff. Not wanting to inflict suffering on the child, anticipating the moment of transition from active treatment to end-of-life treatment, and feeling prevented from telling the truth about the state of the child’s illness are some examples of nursing care responsibilities that often are connected to medical treatment decisions. The most frequent suggestion of dealing with ethical concerns was ‘‘teamwork,’’ interpreted as an underlying appeal to be ‘‘listened to’’ by collaborators. The low response rate of physicians in this study is significant in that it seems to corroborate, to some extent, the nursing staffs’ experiences that the lack of interprofessional dialogue about ethical issues is a major concern in the care of the child with cancer. The study thus raises a challenging question: How can conflicting perspectives, lack of interprofessional consideration, and obstacles related to parents’ involvement be ‘‘turned around,’’ that is, contribute to a holistic perspective of ethics in cancer care of children? We are aware that healthcare professionals must follow professional guidelines in the best interest of the child, and a mutual understanding of how these and how they are applied in practice may contribute to solving ethical conflicts. It seems that most participants were open to a tentative structured forum in which all personnel could feel that they can voice their experiences and receive support from colleagues. Cancer NursingTM, Vol. 38, No. 2, 2015
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ACKNOWLEDGMENT
We thank all the healthcare professionals at the participating units.
References 1. National Board of Health and Welfare. Statistics from the Cancer Register 1970Y2009. 2012. http://192.137.163.40/epcfs/index.asp?kod=engelska. Accessed January 23, 2013. 2. Socialstyrelsen, Cancerfonden. Cancer i siffror 2013 [Cancer in numbers 2013]. 2013. http://www.socialstyrelsen.se/Lists/Artikelkatalog/Attachments/ 19108/2013-6-5.pdf. Accessed December 17, 2013. 3. 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(2):122Y134; quiz 135Y136. 4. Solomon MZ, Sellers DE, Heller KS, et al. New and lingering controversies in pediatric end-of-life care. Pediatrics. 2005;116(4):872Y883. 5. Sorlie V, Jansson L, Norberg A. The meaning of being in ethically difficult care situations in paediatric care as narrated by female registered nurses. Scand J Caring Sci. 2003;17(3):285Y292. 6. Molewijk B, Zadelhoff E, Lendemeijer B, Widdershoven G. Implementing moral case deliberation in Dutch health care: improving moral competency of professionals and quality of care. Bioethics Forum. 2008; 1(1):57Y65. 7. Hurst SA, Perrier A, Pegoraro R, et al. Ethical difficulties in clinical practice: experiences of European doctors. J Med Ethics. 2007;33(1): 51Y57. 8. Soderberg A, Norberg A. Intensive care: situations of ethical difficulty. J Adv Nurs. 1993;18(12):2008Y2014. 9. Bricher G. Paediatric nurses, children and the development of trust. J Clin Nurs. 1999;8(4):451Y458. 10. Justitiedepartementet. The code relating to parenthood and guardianship [Fo¨ra¨ldrabalk] (1949:381) 6:11. 2013. https://lagen.nu/1949:381#K6. Accessed December 6, 2013. 11. Elo S, Kyngas H. The qualitative content analysis process. J Adv Nurs. 2008;62(1):107Y115. 12. Lundman B, Graneheim HU. Kvalitativ inneha˚llsanalys. Tilla¨mpad kvalitativ forskning inom ha¨lso-och sjukva˚rden [Qualitative content analysis. Applied qualitative research in health care] Lund, Sweden: Studentlitteratur; 2008. 13. QSR NVivo 9 new generation software for qualitative data analysis [computer program]. Doncaster, Australia: QSR International Pty Ltd.; 2010. 14. Lazzarin M, Biondi A, Di Mauro S. Moral distress in nurses in oncology and haematology units. Nurs Ethics. 2012;19(2):183Y195.
15. Georges JJ, Grypdonck M. Moral problems experienced by nurses when caring for terminally ill people: a literature review. Nurs Ethics. 2002;9(2): 155Y178. 16. Wilkinson JM. Moral distress in nursing practice: experience and effect. Nurs Forum. 1988;23(1):16Y29. 17. Pergert P, Lutzen K. Balancing truth-telling in the preservation of hope: a relational ethics approach. Nurs Ethics. 2012;19(1):21Y29. 18. Hallstrom I, Elander G. Decision-making during hospitalization: parents’ and children’s involvement. J Clin Nurs. 2004;13(3):367Y375. 19. Davies B, Sehring SA, Partridge JC, et al. Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatrics. 2008; 121(2):282Y288. 20. Thompson LA, Knapp C, Madden V, Shenkman E. Pediatricians’ perceptions of and preferred timing for pediatric palliative care. Pediatrics. 2009;123(5):e777Ye782. 21. Stenmarker M, Hallberg U, Palmerus K, Marky I. Being a messenger of life-threatening conditions: experiences of pediatric oncologists. Pediatr Blood Cancer. 2010;55(3):478Y484. 22. Lutzen K, Blom T, Ewalds-Kvist B, Winch S. Moral stress, moral climate and moral sensitivity among psychiatric professionals. Nurs Ethics. 2010; 17(2):213Y224. 23. Lutzen K, Cronqvist A, Magnusson A, Andersson L. Moral stress: synthesis of a concept. Nurs Ethics. 2003;10(3):312Y322. 24. Cooper A. Soapbox: interprofessional working: choice or destiny? Clin Child Psychol Psychiatry. 2009;14(4):531Y536. 25. Leininger MM. Cultures and tribes of nursing, hospitals, and the medical culture. In: Leininger MM, McFarland MR, eds. Transcultural Nursing: Concepts, Theories, Research and Practice. New York, NY: McGraw-Hill, Medical Pub. Division; 2002:181Y204. ¨ berg L. Varfo¨r sva¨r inte svenska la¨kare ed? [Why don’t Swedish doctors 26. O swears oath?]. Lakartidningen. 2001;98(37):3935Y3937. 27. Socialstyrelsen. Kompetensbeskrivning fo¨r legitimerad sjuksko¨terska [Description of competence for registered nurses]. 2005. http://www.socialstyrelsen.se/ lists/artikelkatalog/attachments/9879/2005-105-1_20051052.pdf. Accessed January 21, 2013. 28. Bjork M, Wiebe T, Hallstrom I. An everyday struggle-Swedish families’ lived experiences during a child’s cancer treatment. J Pediatr Nurs. 2009; 24(5):423Y432. 29. Svantesson M, Lofmark R, Thorsen H, Kallenberg K, Ahlstrom G. Learning a way through ethical problems: Swedish nurses’ and doctors’ experiences from one model of ethics rounds. J Med Ethics. 2008;34(5):399Y406. 30. Lutzen K. Lack of moral timeVa health care nemesis. Health Ethics Today. 2012;20(2):6Y9. 31. Polit DC, Tatano B. Nursing Research. Philadelphia, PA: Lippincott Williams & Wilkins; 2008.
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Cecilia Bartholdson, RN, BN, PhD Candidate Kim Lu¨tze´n, RN, PhD Klas Blomgren, MD, PhD Pernilla Pergert, RN, PhD
Experiences of Ethical Issues When Caring for Children With Cancer K E Y
W O R D S
Background: The treatment for pediatric cancer is often physically,
Cancer care
socially, and psychologically demanding and often gives rise to ethical issues.
Ethics
Objective: The purpose of this study was to describe healthcare professionals’
Interprofessional care
experiences of ethical issues and ways to deal with these when caring for children
Palliative care
with cancer. Methods: A study-specific questionnaire was given to healthcare
Pediatrics
professionals at a pediatric hospital in Sweden. Qualitative content analysis was used to analyze answers to open-ended questions. The data were sorted into 2 domains based on the objective of the study. In the next step, the data in each domain were inductively coded, generating categories and subcategories. Results: The main ethical issues included concerns of (1) infringing on autonomy, (2) deciding on treatment levels, and (3) conflicting perspectives that constituted a challenge to collaboration. Professionals desired teamwork and reflection to deal with ethical concerns, and they needed resources for dealing with ethics. Implications for Practice: Interprofessional consideration needs to be improved. Forums and time for ethics reflections need to be offered to deal with ethical concerns in childhood cancer care. Conclusions: Experiences of ethical concerns and dealing with these in caring for children with cancer evoked strong feelings and moral perplexity among nursing staff. The study raises a challenging question: How can conflicting perspectives, lack of interprofessional consideration, and obstacles related to parents’ involvement be ‘‘turned around,’’ that is, contribute to a holistic perspective of ethics in cancer care of children?
Author Affiliation: Department of Women’s and Children’s Health, Karolinska Institutet, Stockholm, Sweden. This research was supported by grants from the Swedish Cancer Foundation and AFA Insurance. The authors have no conflicts of interest to disclose. Pergert received a grant for this project from the Swedish Cancer Foundation (grant number
Ethical Issues When Caring for Children With Cancer
CAN 2009/912) and AFA Insurance (grant number 120019). For the remaining authors, none were declared. Correspondence: Cecilia Bartholdson, RN, BN, PhD Candidate, Department of Women’s and Children’s Health, Karolinska Institutet, Astrid Lindgren Children’s Hospital, Q6:05, 171 76 Stockholm, Sweden ([email protected]). Accepted for publication December 30, 2013. DOI: 10.1097/NCC.0000000000000130
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I
n Sweden, about 300 children and adolescents up to the age of 19 years are diagnosed with cancer every year. In 2011, a total of 388 children and adolescents aged 0 to 19 years were diagnosed with some type of cancer.1 Of these children, 40% had leukemia or lymphoma, whereas about 30% had brain tumors. Leukemia is the most common malignancy in infancy, and its incidence peaks around the ages of 2 to 3 years, whereas brain tumors occur about as frequently among the youngest as among the oldest children.1 It is important to note that children’s cancers differ from those of adults. Children’s tumors are more often aggressive and fast growing.2 Although 75% of children diagnosed with cancer today are cured,2 the treatment is often physically, socially, and psychologically demanding. Each child’s specific situation often gives rise to ethical issues and disagreements about treatment and care.3Y5 Ethical issues occur when there is a clash of values between individuals, or within an individual, concerning which of the possible options should be chosen.6 Previous research has shown that the experience of ethical difficulties varies depending on cultural differences7 and different professions.8 In pediatric care, common ethical issues include what procedures to adopt when children are unwilling to cooperate and complex decisions about life and death.5,9 Pediatric care is special because of children’s need to have a parent/guardian present and participating in caring procedures and decisions but also because of the rights of children for respect of their views and wishes, according to their developmental level and growing autonomy.10
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Objective
The purpose of this study was to describe healthcare professionals’ experiences of ethical issues and ways to deal with these when caring for children with cancer.
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Data Collection We placed a questionnaire containing both open-ended and multiple-choice questions in the personal mailboxes of all the healthcare professionals and in a pile beside the mailboxes of physicians. Nursing staff at the neuro pediatric unit answered the questionnaire during an educational session. In this article, we focused on the responses to the open-ended questions. A pilot of the questionnaire was conducted with 9 participants with specific expertise in ethics, and the open-ended questions were added as a result of the pilot. The open-ended questions were as follows: 1. Please mention examples of external circumstances that have prevented you from doing what you believe is right/best in relation to ethical issues in clinical care/treatment of patients. 2. Please briefly describe the ethical issues you feel are the most frequent in your work. 3. Please briefly describe the ethical issues you feel are most difficult when it comes to knowing what is right/wrong in your work. 4. Please briefly describe the ethical issues which, in your experience, lead to the most frequent conflicts with your coworkers. 5. Please mention different ways of dealing with ethical issues that you commonly use at your unit. 6. Do you have any other ideas about what you could do to deal with ethical issues? 7. Please briefly describe your experiences of teamwork in dealing with ethical issues in healthcare/treatment of patients at your unit. In summary, what is your experience of ethical issues when caring for children with cancer? After the pilot study had been conducted, the questionnaire was distributed to the 3 participating units. A total of 87 completed questionnaires were collected (Table 1).
Data Analysis Qualitative content analysis11 was applied to the answers in the returned questionnaires. First, all the answers from the open-ended questions were transcribed verbatim into digital documents. Next, the first author read through the text several times to get an overall picture of what the respondents had
Methods
Study Participants Participants included physicians, registered nurses, and nurse aides. With nurse aides, we mean nonYregistered nursing assistants educated on a college level in general care or child care. The healthcare professionals were working at a publicly funded children’s hospital in Sweden on a pediatric oncology unit and inpatient units for children with chronic diseases and for neurological diseases. In 2 of the participating units, both nursing staff and physicians participated. In the third unit, only 1 physician participated. Each participating healthcare professional received written information about the purpose of the study as well as information regarding confidentiality and anonymity. Because children with a cancer diagnosis are admitted at the other 2 units as well, apart from the pediatric oncology unit, we assumed that healthcare professionals from these units would also experience ethical issues related to pediatric cancer.
Table 1 & Response Rates to the Questionnaire for the Different Hospital Units
Hospital Unit
Physicians Nurses Nurse Aides
Pediatric hematology and oncology Neuro pediatric Pediatric chronic diseases
8/13
11/25
9/14
6/a 1/a
14/14 9/25
19/19 10/24
Data are presented as responding participants/total participants. a It is not possible to know the number of questionnaires that were distributed to physicians in these 2 groups because the questionnaires were placed in a pile beside the mailboxes as well as in personal mailboxes. An estimated number are 10 to 30 distributed questionnaires for these 2 groups. Furthermore, this Children’s Hospital is a teaching hospital, and many physicians work at several units and some do not even work in the clinic (researchers) even though they have their personal mailbox placed there.
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expressed. The data were divided into 2 domains as a way of roughly dividing the text into different subject areas.12 The 2 domains are ethical concerns and dealing with ethical concerns. Meaning units were coded into subcategories (for examples, see Table 2)11 using a computer program for qualitative analysis, N Vivo 9.13 The software program gives the researcher the opportunity to structure data. Memos about each category were written by the first author. The categories were then compared in order to group data. The aim of grouping data was to reduce the number of categories by combining those that were similar in meaning and intent.11 Finally, main categories in the different domains were identified. The last author read all the transcribed text to get a deeper understanding, and discussions were then held between all the authors regarding the domains, memos, categories, and subcategories.
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Table 3 & Overview of the Analysis Domain Ethical concerns
Categories Infringing on autonomy Deciding on treatment levels Conflicting perspectives
Subcategories Inflicting suffering Limiting truth-telling Timing the breaking point Balancing pain relief
Interprofessional differences Parents perspectives Cultural differences Dealing with Interprofessional Teamwork ethical concerns consideration Reflections on ethical concerns Resources for Time and personal space ethics Ethical competence
Results
The participants reported similar experiences. However, some differences between professional groups are described below. Although several participants wrote that they thought that it was difficult to write about ethical issues and would have preferred group interviews, many answers were extensive. The categories are exemplified with quotes and are also presented in Table 3. The data were divided into 2 domains: ethical concerns, including answers from questions 1 to 4 and 7, and dealing with ethical concerns, including answers from questions 5 to 7. Ethical concerns included value conflicts when caring for children with cancer. The domain dealing with ethical concerns contained desired tools for dealing with ethical concerns, to be able to provide an ethically justifiable cancer care.
Ethical Concerns The healthcare professionals described many examples of ethical concerns that they experienced, and these have been categorized as infringing on autonomy, deciding on treatment levels, and conflicting perspectives. INFRINGING ON AUTONOMY
To infringe on a child’s autonomy is to go against the child’s will and perform actions and interventions that the child does
Table 2 & Examples of Meaning Units,
Subcategories, and a Category From the Domain Ethical Concerns
Meaning Unit
Subcategories
‘‘Giving injections to children against their will, painful procedures, holding down’’ ‘‘Parents want to protect their children from tough information, eg, that the patient is going to die’’
Inflicting suffering
Category Infringing on autonomy
Limiting truth-telling
Ethical Issues When Caring for Children With Cancer
not want or not to give the child a chance to be included in his/her own care decisions. Nurse participants described children’s autonomy as something that can be violated. Data reveal that nurses and nurse aides experienced powerlessness and reported intense experiences of interventions that were against the child’s wish. This was perceived as an ethical concern and caused upset feelings and thoughts about children’s care. Physicians did not specifically mention anything concerning infringed autonomy as an ethical concern. Infringing on autonomy includes inflicting suffering and limiting truth-telling. Inflicting suffering. Nursing staff reported the experience of forced procedures, and they saw causing pain to children as an ethical concern. Procedures against the child’s will were described as a possible infringement on the child’s autonomy. Forced procedures created unnecessary suffering and were carried out on a daily basis in terms of holding the child down when taking blood samples, for radiology and in other situations. In some cases, forced procedures were carried out on a routine basis and flexibility was missing. Furthermore, forcible procedures were carried out even when the child had very small chances of surviving. Nurses and nurse aides experienced frustration and powerlessness; they had to perform nursing interventions that they did not want to carry out. The person who delegated/prescribed the intervention was usually not present when it was carried out. Children’s autonomy is violated e.g. through holding them down by force. (Nurse) Limiting truth-telling. When healthcare professionals felt that they were being prevented by parents, medical circumstances, and colleagues from telling the truth about the child’s illness and prognosis, they perceived that they were infringing on the child’s autonomy. The child’s opportunities for giving his/her views on care issues were limited when truth-telling was limited. Healthcare professionals experienced an ethical problem when they were impeded from telling the child the truth. Nurses and nurse aides perceived not telling the truth as a frequent ethical concern. They described how parents restricted the information given to the child.
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Parents want to cover up information. (Nurse) Informing the children about their own disease. To be forced to avoid telling the truth when a child asks about samples being taken, for example. (Nurse) DECIDING ON TREATMENT LEVELS
Deciding on the treatment was experienced as an ethical problem when it was not clear what was best for the patient. Different perspectives affected what treatment the healthcare professionals considered was right, especially when the treatment had uncertain benefits for the patient. What is meaningful and correct treatment for a severely ill/injured child when no curative treatment is available? (Physician) Deciding on treatment levels includes timing the breaking point and balancing pain relief. Timing the breaking point. The breaking point is an invisible point in time when the transition from curative to end-of-life treatment occurs. Opinions differed among physicians, nurses, and parents as to when the breaking point occurred/should occur. We think differently about where the line is drawn. (Nurse) The breaking point was a major concern for all professional groups and often led to conflicts within the care team. For example, 1 nurse aide wrote: ‘‘The transition to end-of-life care, physicians aiming for cure.’’ Thus, the transition was of interdisciplinary interest. Physicians had to make the decisions regarding limitations of life-sustaining treatment and the changed aim of the treatment. They often felt uncertain about when to make this decision to achieve the best possible care for the patient. It is unclear what the best treatment for an individual patient is. When should the decision to end treatment and begin end-of-life care be taken? (Physician) Balancing pain relief. Pain relief is highly influenced by the overall goal of the treatment. When the purpose is end-of-life care, the attitude to pain relief is often very generous. However, when there is a curative intention, other aspects need to be taken into consideration, such as pharmacological adverse effects and possible chemical addiction. Furthermore, the parents may want their child to be awake as much as possible, rather than asleep on high doses of analgesics. When a child had pain, it affected parents and healthcare professionals. Nursing staff perceived that it was hard to collaborate with parents who had a different opinion concerning the pain relief of their child. The disagreement could be about parents and nursing staff wanting more or less medication for pain relief. On some occasions, nursing staff had a different view of whether medication for pain relief really was necessary. Anxiety in children added complexity. There were difficulties involved in treating pain in a child/teenager who had a diagnosed addiction, fearing that the patient wanted pain relief for the ‘‘wrong’’ reasons. At the same time, participants felt powerless when a patient was in pain and they could not do anything to ease the burden of the pain. The level of acceptance
regarding pain was experienced differently by different professionals. Pain relief sometimes led to conflicts between healthcare professionals. In many cases there are large disagreements between us. This can lead to discussions, pretty heated ones sometimes. Especially on the issue of pain relief. (Nurse) CONFLICTING PERSPECTIVES
Conflicting perspectives describes different values regarding care. Interprofessional differences, parent’s perspectives, and culture differences affect the perception of the ethical concern. Interprofessional differences. Interprofessional differences were related to different professional cultures, experiences, and education as well as deriving from personal values and moral beliefs. Nurses felt that they were unable to influence the medical treatment and thought that the treating physician had a different view and another goal. One nurse wrote: ‘‘Physicians and the other professions are working towards different goals.’’ Nursing staff had a caring role aimed at relief and comfort and experienced the patients’ suffering at close hand, which affected their perspective. They made decisions about nursing actions, but they did not make the crucial decisions regarding medical treatment. Mostly I think nurses and nurse aides have the same opinion about what should be done or not. The physicians do not always see the same things we do, because they don’t see the patient in the same way/as frequently as we do. (Nurse) Physicians described how nursing staff often had a different point of view regarding medical treatment and procedures and acknowledged that dialogue was absent in these cases. The lack of dialogue was viewed as secondary to time constraints and to different views on the role/function of suffering. Physicians had the role of medical decision makers, with ultimate responsibility for the child’s future health. Parent’s perspectives. This is about the challenging situations in pediatric cancer care caused by ethical concerns related to parents’ involvement in the child’s care. The parents were described as a link between the child and the healthcare professionals and thus important when deciding present or future care for the child. Ethically problematic situations occurred when healthcare professionals were aware of what the parents wanted but at the same perceived that the parents did not fully grasp and understand the situation or if they had conflicting values. The parents may, for example, have wanted to continue to treat the child at any price, or they wished to terminate the curative treatment when physicians wanted to continue it. Of course it is difficult for the parents to accept that you cannot save the child and sometimes the parents perceive that we’ve given upIthough they still see that there is hopeI. Since parents do not want to accept that the end is near, they sometimes forget to make the most of their last days with the child. This is very difficult. (Nurse)
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Cultural differences. Cultural differences is about challenges when families and staff of different cultures met in pediatric care and were dependent on collaboration to provide cancer care where the patients’ dignity and integrity were maintained. Collaboration between parents and professionals was believed to be essential for good healthcare. Participants sometimes experienced conflicting perspectives with parents with religious convictions or foreign backgrounds; in particular, they were often mentioned as having different preferences. For example, foreignborn parents often chose not to inform their child about the severity of the illness because they wanted to protect their child. Physicians faced difficult ethical issues when parents wanted to refrain from treatment because of religious convictions, exemplified by the following quote from a physician: ‘‘The patient would not accept treatment because of religious convictions.’’
Dealing With Ethical Concerns In their answers to questions about ways to deal with ethical concerns, participants expressed a desire to deal with these difficult situations in a better way. Dealing with ethical concerns includes a desire for interprofessional consideration and resources for ethics. INTERPROFESSIONAL CONSIDERATION
This category includes subcategories such as teamwork and reflection on ethical concerns as an expressed need from the participants and as essential for dealing with ethical concerns. Teamwork. In our data, teamwork was described as different professionals working together while having different tasks based on their professional roles. These professionals were interdependent to fully provide for proper care. There was a variation in how participants experienced teamwork. Sometimes, it did not function properly. Healthcare personnel reported a lack of interprofessional interaction and not having a forum for reflection. We have no teamwork. (Nurse) At other times, teamwork was satisfactory. For example, 1 physician wrote: ‘‘Iwe have a good teamwork, nurse aides, physicians and nursesI.’’ A strong desire for improved respect, communication, and trust was also expressed by participants. Nurses wanted to be listened to and they also wanted the team to spend more time with and listen to patients and relatives.
tests prescribed that destroy the peace of the dying child and create the wrong kind of hope or frustration for parents. (Nurse aide) A need for teamwork was perceived to exist even among colleagues of the same discipline. For example, colleagues might deviate from the original care plan in order to be ‘‘nice.’’ This led to conflicts. Several physicians repeatedly described how they were satisfied with the teamwork within the group of physicians, although having less experience of teamwork in interprofessional clinical ethics case reflections. A very good climate for discussion among colleagues, little experience of teamwork. I have no experience of teamwork; we already have a good basis for the discussion among physicians. (Physician) Reflection on ethical concerns. To come together as an interdisciplinary team and reflect about the ethical challenge was a desired change. Clinical ethics case reflections did occur to some extent and were a helpful way of handling ethical concerns. These reflections were spontaneous and informal as well as organized and formal and were carried out within the professional groups and with parents. Physicians reflected with their colleagues on a daily basis. Reflections could be in the form of coffee-break discussions, scheduled briefings at the end of the day, rounds, consultation with an external expert, and finally, consultation with the ethics committee at the hospital. Some clinical ethics case reflections were seen as taking place ‘‘too late’’ in the care process even though the ethical issue was obvious to study participants. ‘‘I believe that ethical problems are discussed too late.’’ (Nurse) Ito pick up on it at an earlier stage, when an ethical dilemma has developed or is developing. (Nurse Aide) Study participants across clinical units described wanting forums for discussing patient-related ethical concerns in a structured way that took place earlier in the process; nursing staff specified wanting the physician to attend. Participants also wanted advice on decision making and sufficient time allocated for the interdisciplinary reflections. Structure can help to ensure that everyone is heard and that you communicate conclusions to everyone. (Physician) RESOURCES FOR ETHICS
Professional hierarchy was seen as contributing to a lack of interprofessional interaction. In some cases, physicians believed that the nurses’ knowledge level was insufficient regarding the medical decision, thus preventing full understanding. Nurses reported the experience of not feeling that they were listened to, involved, or supported by physicians.
Resources for ethics, described in subcategories as time and personal space as well as ethical competence, were perceived as likely to promote handling of ethical concerns. Lack of resources created obstacles to do what was believed as ethically correct in the clinical context. Time and personal space. Participants perceived that lack of time and space repeatedly led to ethical concerns in care. Lack of time meant that children could not be prepared for procedures, which increased the use of force that limited the child’s autonomy. Lack of time affected being able to gather information and communicate with others.
The physicians’ own insecurity in dealing with severely ill and dying children. There are so many (unnecessary)
Stress and lack of time makes it hard to be able to reflect together. (Nurse)
Enhanced teamwork can create better communication between the various professional categories. (Nurse)
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Physicians pointed out that teamwork was adversely affected by lack of time, which led to poor communication and potential conflicts related to ethical concerns. Lack of space (availability of private rooms) reduced opportunities for private conversations and reflections. A shortage of time and space for individual conversations. Only certain types of conversations are treated with that level of respect (e.g. the social worker). Rounds are made even when others can hear. (Nurse Aid) Ethical competence. Further training was described as a needed resource in dealing with ethical concerns. Being uncertain about moral principles and core values and feeling a lack of ethical competence contributed to uncertainty in decisions.
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Discussion
The major findings have been divided into 2 domains, reflecting the objectives of the study: ethical concerns and dealing with ethical concerns. Infringing on a child’s autonomy is an ethical concern identified in this study. Even though from a legal point of view, children might not have full autonomy, children’s autonomy is something that can be violated, according to our results. Infringing on autonomy includes concern about inflicting suffering and carrying out unnecessary treatment. This is similar to a study of nurses in Italy in which items such as ‘‘carrying out a physician’s order for unnecessary tests and treatment’’ had a high average frequency of items that generated moral distress.14 According to previous studies, interventions are carried out by nurses against the child’s wishes in pediatric units, becoming an ethically problematic situation that creates moral stress in nurses, particularly if they do not agree with the procedures.14Y16 Nurses risk becoming caught between the child’s wishes and the prescribed intervention. This is a challenge for the involved healthcare professionals. Knowledge and training may be key here, as healthcare professionals call attention to ethical concerns and contribute by being a part of ethics case reflections, less suffering may be achieved for the patient. Another autonomy-related issue is dealing with the truth about the child’s diagnosis, treatment, and prognosis. Several participants stated that parents prevented them from telling the truth. Being prevented from truth-telling has been identified as an ethical problem in previous studies14,15 and is related to moral stress.14Y16 Healthcare professionals may protect themselves and preserve hope in end-of-life care situations by balancing truth-telling.17 Complex ethical issues occur in all healthcare settings, especially in end-of-life situations.3,4 Treatment limitation is an example of an ethical problem. Interprofessional conflicts are common in these situations, and research indicates that parents and healthcare professionals in pediatric care may have conflicting opinions about what is best for the child.18 In our study, deciding on treatment levels included the ethical concern of timing the breaking point. The transition, described as an invisible point in time when the purpose of care changes
from cure oriented to nonYcure oriented, was a major concern related to ethically problematic situations. The transition process can be protracted because the decision of the breaking point has a major impact on the transition itself. Experiences of the breaking point were based on whether the participant had a decision making role or not. Different perspectives influence reasoning at this critical time. A study on barriers to palliative care for children showed that physicians and nurses perceived different barriers to palliative care. Three contrasts between physicians and nurses were identified: culture, treatment goals, and lack of an ethics committee.19 The most common barriers were uncertainties in prognosis and discrepancies in treatment goals.19 Another study of pediatricians’ perception of palliative care concluded that the generation of practical definitions of palliative care may increase chances of palliative care being introduced at an earlier stage for children with limited chances of survival.20 On the basis of the results from our study, healthcare professionals appear to strive toward the best interests of the child. However, there are disagreements between nursing staff and physicians on treatment levels, and this is related to the differing perspectives on what is actually in the best interest of the child. This may be explained, in part, by the dramatic improvement in the treatment outcomes for childhood cancer in the Western world, as well as the fact that some pediatric oncologists have personally experienced this improvement during their careers. Some report experiencing ‘‘miracles,’’ when children have been cured after receiving a treatment with no previously documented effect. This experience may well make it even harder to decide to cease trying to cure a child’s disease. In a Swedish study, physicians with extensive experience in pediatric oncology were interviewed, and the following quote exemplified how they sought to do everything to obtain more knowledge and information: It’s an ethical exhortationIa part of our professional ethicsI. Never ever to give up before you have exhausted every prospect of knowledge concerning that specific type of cancerIand nothing more can be done.21(p479) On top of that, pediatric cancer care affects the whole family; it is very stressful for relatives, especially parents and siblings, when a child is diagnosed with cancer.22,23 In the present study, deciding on treatment levels included balancing pain relief. This has been identified in several studies as an ethical problem experienced by nurses and contributing to feelings of insecurity and guilt and has been defined as coping with patients’ suffering.15 Furthermore, participants described how interprofessional interaction sometimes did not function properly. It was principally nursing staff who described experiencing a lack of interprofessional collaboration and having no forum for reflection. Both caused great frustration and may, as reported previously, represent real obstacles to our interprofessional working ability.24 These obstacles may be rooted in a sense of another discipline being different from our own profession and thus ‘‘not like us.’’24 The core challenge to collaboration in the present study was conflicting perspectives. Conflicting perspectives included different professional perspectives; according to Leininger,25
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there are different professional cultures, including a nursing culture and a medical culture. Even though Swedish physicians have not sworn the Hippocratic oath since 1886,26 their professional duty has focused on treatment and cure. The skills description for Swedish nurses includes, among other things, the ability to satisfy the patient’s basic and specific needsVphysical, mental, social, cultural, and spiritual.27 Comparing these 2 descriptions of duties, it is clear that we are dealing with 2 different professions with different training and different guidelines but who are supposed to care for and treat the same patient. Suitability of medical treatment has previously been identified as an ethical problem causing conflict and resulting from the different perspectives of nurses and physicians.15 Conflicting perspectives in the present study also include parents’ perspectives. Parents’ perspectives may differ from healthcare perspectives and may be influenced by their close relationship with their child. Parents are closest to the child and the child’s suffering, and they have to live through both the child’s pain and disease and the thought and fear of losing their child.28 This may result in them doing everything that they can to keep their child alive as long as possible and may contribute to a complicated relationship with professionals. In a previous study, ‘‘Follow the family’s wishes to continue life support even though it is not in the best interest of the child’’ was an item that generated moral stress in nurses.14 In the domain of dealing with ethical concerns, all identified wishes were on a practical level: desiring interprofessional consideration on ethical concerns. Structured interprofessional clinical ethics case reflections, in which healthcare professionals are able to state their perspective and arguments, in relation to patient cases may be a practical solution to this energy-consuming issue. A previous study found that interprofessional ethics reflections could be a forum for creating awareness across professional boundaries29 and thus create a foundation for improved teamwork. The category of resources for ethics includes time and personal space as well as competence. Organizational rules and norms have been shown to be a potential threat to nurses’ ethical integrity.15 Lack of moral time has been described as a healthcare nemesis, as healthcare organizations and professionals are encouraged to make time for ethics.30
Method Discussion A possible limitation of the study is that because the participants were from 3 different pediatric units, their perceptions of the questions and their interpretation of their content may have contributed to different answers based on the unit they were working at. However, because all the units treated children with cancer and other pediatric diagnoses with similar issues, it is likely that they refer to similar situations. One data collection limitation was identified when several participants expressed that it was difficult to write about ethical issues, and this, in combination with time constraints due to the heavy workload in healthcare today, might also explain why some of those who received the questionnaire did not respond. The data also relied on the participants’ understanding of what is meant by ethical issues and their ability to express in writing their perceptions and
Ethical Issues When Caring for Children With Cancer
experiences. Moreover, we have no data describing the working conditions under which the healthcare professionals wrote their responses. The advantages of a questionnaire, which include cost, anonymity, and avoiding interviewer bias,31 were among the reasons for choosing this method, but had we known in advance the frustration this would cause, we would probably have changed the data collection method, opting for focus group interviews as a method for the open-ended questions.
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Implications for Practice
Awareness of ethical issues, raised by healthcare professionals, can contribute to having meetings with the families, patients, and caregivers to ensure that all are ‘‘on the same page’’ regarding prognosis and the care needed. Educating healthcare professionals in basic ethics and in identifying ethical concerns and then having a plan for where to bring issues could facilitate caring for children with cancer. The leaders of the organization need to take into count that reflection is needed to deal with the ethical concerns and that ethically problematic situations could be made easier by fulfilling the needs expressed by healthcare professionals, and this may involve contributing new or differently distributed resources.
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Conclusions
Healthcare professionals’ experiences of ethical issues and dealing with these in caring for children with cancer seem to evoke strong feelings and moral perplexity among nursing staff. Not wanting to inflict suffering on the child, anticipating the moment of transition from active treatment to end-of-life treatment, and feeling prevented from telling the truth about the state of the child’s illness are some examples of nursing care responsibilities that often are connected to medical treatment decisions. The most frequent suggestion of dealing with ethical concerns was ‘‘teamwork,’’ interpreted as an underlying appeal to be ‘‘listened to’’ by collaborators. The low response rate of physicians in this study is significant in that it seems to corroborate, to some extent, the nursing staffs’ experiences that the lack of interprofessional dialogue about ethical issues is a major concern in the care of the child with cancer. The study thus raises a challenging question: How can conflicting perspectives, lack of interprofessional consideration, and obstacles related to parents’ involvement be ‘‘turned around,’’ that is, contribute to a holistic perspective of ethics in cancer care of children? We are aware that healthcare professionals must follow professional guidelines in the best interest of the child, and a mutual understanding of how these and how they are applied in practice may contribute to solving ethical conflicts. It seems that most participants were open to a tentative structured forum in which all personnel could feel that they can voice their experiences and receive support from colleagues. Cancer NursingTM, Vol. 38, No. 2, 2015
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ACKNOWLEDGMENT
We thank all the healthcare professionals at the participating units.
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