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Characterisation of organisational issues in paediatric clinical ethics consultation: a qualitative study
  1. D J Opel1,2,
  2. B S Wilfond1,2,
  3. D Brownstein2,
  4. D S Diekema1,2,
  5. R A Pearlman3,4
  1. 1
    Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Hospital, Seattle, Washington, USA
  2. 2
    Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA
  3. 3
    Department of Medicine, University of Washington School of Medicine, Seattle, Washington, USA
  4. 4
    Geriatric Research Education and Clinical Center, Veterans Affairs Puget Sound Health Care System, Seattle, Washington, USA
  1. Dr D J Opel, Metropolitan Park West, M/S: MPW 8-2, 1100 Olive Way, Suite 800, Seattle, WA 98101, USA; djopel{at}u.washington.edu

Abstract

Background: The traditional approach to resolving ethics concerns may not address underlying organisational issues involved in the evolution of these concerns. This represents a missed opportunity to improve quality of care “upstream”. The purpose of this study was to understand better which organisational issues may contribute to ethics concerns.

Methods: Directed content analysis was used to review ethics consultation notes from an academic children’s hospital from 1996 to 2006 (N  =  71). The analysis utilised 18 categories of organisational issues derived and modified from published quality improvement protocols.

Results: Organisational issues were identified in 68 of the 71 (96%) ethics consult notes across a range of patient settings and reasons for consultation. Thirteen of the 18 categories of organisational issues were identified and there was a median of two organisational issues per consult note. The most frequently identified organisational issues were informal organisational culture (eg, collective practices and approaches to situations with ethical dimensions that are not guided by policy), policies and procedures (eg, staff knows policy and/or procedural guidelines for an ethical concern but do not follow it) and communication (eg, communication about critical information, orders, or hand-offs repeatedly does not occur among services).

Conclusions: Organisational issues contribute to ethical concerns that result in clinical ethics consults. Identifying and addressing organisational issues such as informal culture and communication may help decrease the recurrence of future similar ethics concerns.

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Historically, the focus of clinical ethics has been the resolution of ethics concerns.1 The traditional, case-based approach to clinical ethics consultation tends to frame ethical concerns as discrete problems caused by individual circumstances.2 Consequently, the organisational issues that may be important contributors to understanding the evolution of the concern itself are disregarded. This represents a potential missed opportunity to prevent the recurrence of similar ethics concerns.3

The prevention of recurring ethics concerns is particularly desirable when the concern evolves in the context of conflict between staff or between a patient and a provider. Ethical conflict is a common reason for consultation46 and has been shown to cause moral distress among nurses, which can negatively affect the quality of care they provide.7 8 In addition, time spent by providers and staff on addressing ethical conflicts takes away from other patient care duties,9 which may lead to inefficient care and poor utilisation of resources. For these reasons, the prevention of recurring ethical conflict is aligned with quality improvement initiatives that aim to develop a safe, effective, patient-centered, timely, equitable and efficient system for providing clinical care.10

In this context, an expanded approach to ethics consultation that includes attention to quality has been proposed2 and is gaining acceptance.3 1115 This systems-based approach “requires explicit, critical reflection on the institutional factors that influence patient care”,2 and therefore builds upon the traditional ethics consultation approach that tends to focus solely on resolution of the concern that provoked consultation.3 This systems-based approach to ethics concerns intentionally mirrors a standard quality improvement approach to a clinical adverse event—root cause analysis—in order to identify and address the organisational issues, or root causes, which contribute to the ethics concern. It has been hypothesised that suboptimal systems-level processes underlying clinical adverse events may also be relevant to ethics concerns. When these processes are fixed, recurring ethics concerns can be prevented.16

To be able to perform systems-based ethics consultation effectively, the range and type of organisational issues that contribute to ethics concerns first need to be better understood. The principal objective of this study is to characterise organisational issues related to ethics concerns that prompt ethics consultation in a paediatric setting.

METHODS

Directed content analysis17 was employed to determine whether a quality improvement framework of organisational issues relevant to the development of clinical adverse events extended to ethics concerns. By utilising existing quality improvement theory and predefined categories, directed content analysis offers a more structured methodology than conventional content analysis and helps provide supporting or non-supporting evidence for a theoretical framework in a new context. Directed content analysis is deductive in nature but necessarily involves an interpretation of the text in order to assign pre-existing categories.18

Ethics concerns that resulted in a documented ethics consultation at Seattle Children’s Hospital from 1996 to 2006 comprised the study’s sample (N  =  71). At Seattle Children’s Hospital, an ethics consultation could be requested by staff or parents of patients on both the general paediatric and medical or surgical subspeciality services. In the sample studied, the ages of patients ranged from 7 days to 21 years.

During the 11-year period studied, ethics consultations at Seattle Children’s Hospital were consistently performed by a small team of individuals. Ethics consult notes before 1996 (1990–6, N  =  46) were excluded because the ethics consultation process during that time—the full committee model—differed from the process currently used by the majority of ethics consultation services nationally.19 Ethics consults that were not patient based were also excluded, as were those consultation notes labelled as “informal” or containing less than a paragraph of text. This latter criterion was used because the text written in such cases did not have the descriptive capacity to allow for the identification of case characteristics or organisational issues.20

Defined categories of organisational issues were derived from published quality improvement protocols that identify systems variables underlying critical clinical incidents: the Joint Commission’s (formerly known as the Joint Commission for the Accreditation of Healthcare Organisations (JCAHO)) “Root cause analysis/sentinel event policy”21 and the National Quality Forum-endorsed, JCAHO-developed “Patient safety event taxonomy”.22 The organisational issues contained in these protocols were evaluated for their relevance to ethics concerns by abstracting examples of the issues in an ethics context using their clinical definitions as provided by the protocol. Those organisational issues that consequently did not appear to have a relationship to clinical ethics were excluded. Next, open coding of ethics consult notes from years before the sample (1990–6) was employed to identify additional organisational issues not already abstracted from the quality improvement protocols and to modify the ethics definitions and examples of the quality improvement protocol-derived organisational issues as they pertained to ethics cases. The result was four broad categories of organisational issues containing a total of 18 subcategories (table 1). Table 1 includes illustrative clinical and ethics examples from one subcategory within each larger category.

Table 1 Preliminary typology and examples of organisational issues

Descriptive characteristics of ethics consultation cases were also developed in order to understand better whether organisational issues were more relevant in certain types of ethics cases than others. These characteristics were adapted from published chart reviews of ethics consults in paediatric and adult settings.5 23 24 Four categories of characteristics were identified: place of consult; patient’s primary diagnosis; reason(s) for consult and primary consult activity. The primary consult activity categories included conflict mediation, ethical guidance, clarification of policies and procedures, determination/designation of decision-maker, assessment of decision-maker, education and other. To determine whether there were different organisational issues related to ethics concerns that involved conflict (identified as those consults that were coded as using conflict mediation as the primary consult activity), the primary consult activity categories were reduced to two after coding: “conflict mediation” and “other” (which contained all other categories).

A codebook following a standardised structure25 was created and contained the organisational issues and descriptive characteristics that had been developed. Organisational issues and the descriptive characteristic “reason for consult” were assigned a binary numerical code (yes/no) in order to capture whether or not they were present in the ethics consult note. The remaining descriptive characteristics were ordinal and numerically coded as such.

The consult notes were coded separately by two investigators (organisational issues: DJO, RAP; case characteristics: DJO, BSW) and then compared. The kappa statistic (κ) was used to determine how much better than chance the coding agreement was between coders.26 Upon review of each consult note, the numerical codes of the organisational issues and descriptive variables identified were entered into Microsoft Excel. After the first 20% of the consult notes, a κ of 0.6 was reached, suggesting greater than moderate agreement.27 The remaining consult notes were coded by the principal investigator (DJO); for the coding of the ethics consultation notes for organisational issues; however, every fourteenth consult was coded by both investigators independently (DJO, RAP) and compared to ensure coding had not drifted. Kappa remained greater than 0.6 during the coding of each of the subsequent consult notes. Data were analysed using descriptive statistics (Stata Intercooled 9).

Our epistemological orientation for this study was primarily positivist. Our use of directed content analysis and predefined categories of organisational issues was intended to gather evidence for whether or not a quality improvement framework for exploring root causes of clinical adverse events could be usefully extended to ethics cases. Although our methodology did include interpretation of text and therefore involved some subjectivity and bias, our preferences in this study were overall aligned with those described by Miles and Huberman:28 “to register and ‘transcend’ [subjective] processes by building theories to account for a real world that is both bounded and perceptually laden, and to test these theories in our various disciplines”.

This study was examined and approved by the Seattle Children’s Hospital’s Institutional Review Board. Quotations used in this article are representative of the coding category to which they have been assigned and have been excerpted directly from the consult note narratives. For reading ease, additions made to the quotations are indicated by the use of […] and excluded sections of the text are denoted by the use of an ellipsis.

RESULTS

At least one contributory organisational issue was found in 68 of the 71 ethics consult notes (96%). There was a median of two organisational issues identified per consult note (min 0, max 6). The most commonly identified contributory organisational issues were informal organisational culture (N  =  51; 72%), policies and procedures (N  =  46; 65%) and communication (N  =  35; 49%; table 2). Five of the 18 organisational issues were never coded for in the ethics consult notes: (1) maintenance of organisational resources (eg, inadequate staffing hampered ethical decision-making); (2) design/construction (eg, the physical layout of a ward hindered private, multidisciplinary conferences to discuss ethical issues); (3) supervision (eg, supervision of end-of-life discussions with a patient/family is not provided to staff not yet functioning independently); (4) training (eg, staff perform informed consent discussions to enroll inpatients into clinical trials without completing human subject protection certification) and (5) knowledge of organisational standards for performance (eg, unethical behaviour among staff is due to unclearly articulated job duties).

Table 2 Frequency of organisational issues in a paediatric institution’s clinical ethics consult notes*

Conflict mediation was identified as the primary activity utilised by the consultant in 27 of the 71 consults (38%). There was a median of three contributory organisational issues per consult note that had conflict mediation as its primary consultant activity (min 1, max 5). The most commonly identified organisational issues in these cases in which conflict mediation was the primary consultant activity were similar to those seen in all consults: (1) informal organisational culture (N  =  21, 78%); (2) policies and procedures (N  =  18, 68%); (3) communication (N  =  12, 63%) and (4) discordance between goals/objectives and actions/decisions among staff or lack of agreement in goals of care among staff (N  =  6, 22%). The number and type of organisational issues were comparable to those consults in which conflict mediation was not the primary consult activity (data not shown).

The median number of contributory organisational issues did not vary appreciably depending on the place in which the consult occurred, the patient’s primary diagnosis and the primary reason for the consult (table 3). The paediatric intensive care unit (ICU; N  =  25), neonatal ICU (N  =  21) and medical floor (N  =  10) were the three most common inpatient areas from which these cases that reached ethics consults took place, and their median numbers of organisational issues were 3, 2 and 2.5, respectively. Likewise, malignancy (N  =  13) and development/genetic disease (N  =  12) were the two most commonly coded primary diagnoses. The consult notes coded with these primary diagnoses had the same median number of two organisational issues present. Finally, end-of-life care (N  =  44) and treatment decisions (N  =  22) were the most frequently cited reasons for obtaining an ethics consult in these cases. Consults obtained for end-of-life care reasons had a median number of three organisational issues present and those obtained for treatment decision reasons had two.

Table 3 Number of organisational issues by place of consult, patient’s primary diagnosis, reason for consult and primary consult activity

Organisational issue descriptions and examples

Informal organisational culture

Informal organisational culture can be defined as the collective practices and approaches to the delivery of healthcare and the values they reflect. It is the tacit but predominant approach to patient management and involves long-standing norms that reflect tradition, practice and explicit or implicit values, beliefs, or behaviour. By occurring at the institutional level, it is distinct from both the idiosyncratic view of one individual and the broadly held societal norm. Therefore, informal organisational culture does not refer to the incorporation of one’s own values into the delivery of medical care. Rather, it is invoked when these values or beliefs are collectively held and challenge ethical practice. The following excerpt from a consult note is an example of text that invokes a problematical collective practice to patient management and its relationship to the ethical concern:

The cardiac ICU attending asked for a pulmonary and genetics consult to clarify issues of prognosis and treatment. Genetics confirmed the diagnosis … and included the information that these children usually die an early death…. [The] pulmonary [consultant] commented on the complexity of the issues … and indicated that an ethics consultation would be appropriate to help determine the course of treatment that would be in the child’s best interest. The parents … seemed to be very detached from their son. The stated preference of the parents at the time was that everything should be done for their child. The initial consult was requested by a nurse who felt that the child was without an advocate. She feared the parents were incapable of acting in the child’s best interests and the cardiac [surgery] group was not sensitive to the complex nature of the case and believed that surgery would fix everything. It did not appear that the cardiac group had listened to any of the recommendations of the consultants and was moving very quickly without careful consideration of all the alternatives for care and the complex psychosocial issues. Surgery refused [to allow time for a care conference] and carried out [the surgery] the following day.

The cardiac surgery group, in this case, seemed reluctant to offer an explanation of the alternatives to surgery that may have existed for this patient. Although the parents’ preferences were clear, it is inferred from the text passage that they may not have been able to make an informed decision because of the lack of discussion regarding treatment options. Furthermore, there seemed to be some question among other clinicians involved in the care of this patient (the nurse and pulmonary consultant) that surgery was potentially not in the child’s best interest. This ethics consult note was therefore coded as informal culture (several other organisational issues perceived to be contributory to its development were also identified) because it reflected an implicit belief—“surgery would fix everything”—that was both shared by the cardiac surgery group and was potentially problematical by precluding an appropriate discussion about treatment alternatives that may have better served the child’s interests.

A different consult note provides an additional example of informal culture reflecting values or beliefs that are implicit in patient management:

The patient and her family have requested a cochlear implant and have undergone a series of evaluations by the [hospital] cochlear implant programme. The patient qualifies for cochlear implant on the basis of her degree of hearing loss. However, members of the cochlear implant programme have considerable reservations as to the potential for success of the procedure based on “other criteria and concerns”. Such concerns include: (1) [patient] is a congenital/deaf adolescent struggling with all the identity issues of adolescence…; (2) [the patient] and her family have unrealistic expectations.

In this circumstance, the delivery of healthcare—a cochlear implant—seems to be subject to the cochlear implant programme’s long-standing norms at the institution. These norms seem to reflect the belief that those who fit the profile of the patient described above are not good candidates for the long-term success of a cochlear implant. While an objective risk and benefit analysis might contribute to these norms, this consult note was interpreted as involving informal culture because of the collective, implicit, and potentially problematical values held by the healthcare providers in determining who should receive cochlear implants and who should not.

Policies and procedures

Policies and procedures are organisational guidelines for delivering and providing patient care. Relative to the development of an ethics concern, policies and procedures may partly be characterised by staff knowing a policy and/or procedural guideline for an ethical concern but not following them. This grouping of organisational issues can include lack of knowledge about a policy and/or procedure, or the presence of competing priorities with the known policy as well as different perceptions of risk involved with not following the known policy. An excerpt that illustrates an ethics case involving staff not following an institutional procedure—the do-not-attempt-resuscitation (DNAR) procedure—is:

The staff … never actually discussed the likelihood that [the patient] would die if the support were withdrawn with her in terms that she could understand. The staff was counselled [by the ethics consultant] that … it was inadvisable to embark on a course of action that would likely end in the death of the patient unless they were certain that the patient and her family clearly understood that death was an expected outcome and that they agreed to accept that consequence should it occur. The staff was reminded that the DNAR was designed to support such conversations.

In addition, an ethical case requiring ethics consultation might arise because an explicit policy regarding an ethical concern does not exist and overarching standards are not applied, or there is confusion on how to apply such standards. The following excerpt illustrates this:

This consult was requested because the mother has once again threatened to leave AMA [against medical advice] despite what the medical team feels has been incomplete therapy. The child protective team has also been consulted and recommended psychiatric evaluation and a family care conference. The medical team has asked for an opinion as to whether a medical hold should be placed should [the patient’s] mother decide to leave AMA a third time, and whether CPS [child protective services] should be involved.

This ethics case occurred at a time when the institution lacked a policy for obtaining a medical hold and reflects uncertainty on the part of the providers as to whether a medical hold is appropriate for this patient.

Communication

Communication in the healthcare setting can be described as the timely conveying of information to relevant parties that is both understandable and pertinent to patient care. It has both interpersonal and organisational components. Communication as a contributing organisational factor to the development of an ethics concern is present in situations in which it is systematically lacking among services, whether for critical results, stat orders, or hand-offs between providers, or if information is repeatedly conveyed ineffectively. An example of this is the following:

After reviewing the case and interviewing all parties, it appeared that the concerns were based in errors of communication…. The staff had interpreted the patient’s verbal responses and actions [for wanting the endotracheal tube removed] in view of their own understanding of the consequences [that tube removal would result in her death]. But they had never actually discussed [this] with her in terms that she could understand.

Here, all of the providers on this particular hospital unit, on multiple occasions, had discussed with the patient and her family the implications of removing her endotracheal tube. This adolescent patient, however, did not fully understand that she would die as a result, primarily because this information was ineffectively conveyed to her. The communication issue in this case was more than a poor interaction between one provider and this patient, and reflected a broader, systematic organisational failure of a hospital unit to relay critical information in developmentally appropriate terms.

When different providers are taking care of the same patient, there is a risk that failure of adequate communication among clinical services can result in an ethics concern. The following excerpt illustrates this:

Parents requested to meet … to discuss and understand issues related to limiting care, palliative care, and withdrawal of life support…. They feel a weakness in the [Hospital] system is [that] they do not have a general paediatrician coordinating all their care issues. They recognise the pulmonary service as their main contact and are OK with having critical care help coordinate care during this period of time.

DISCUSSION

Using an organisational perspective to uncover systems-level vulnerabilities that contribute to an adverse event is a concept widely applied in quality improvement. In the USA, healthcare organisations, as part of the accreditation process by the Joint Commission, are required to have a process in place that systematically addresses undesirable outcomes by exploring their root causes.21 The goal is not only to understand what happened to the current patient but to protect future patients. Without altering the way work is done by similarly trained and motivated clinicians, the same error will continually recur. The Joint Commission,29 and other organisations, such as the Department of Veterans Affairs National Center for Patient Safety,30 have developed templates to facilitate this process of identifying root organisational issues in the clinical setting.

There has been a growing interest to incorporate a similar organisational perspective into clinical ethics consultation.3 1114 This study augments our understanding of how to pursue a systems-based approach. First, it confirms that most of the organisational issues derived from published quality improvement protocols, designed for identifying and addressing adverse events in the clinical setting, appear pertinent to clinical ethics consultation and could be considered in the approach to an ethics concern. Second, it illustrates that these organisational issues were frequently identified in the development of an ethics case that resulted in a clinical ethics consult in a paediatric setting.

The frequency with which these contributory organisational issues were found per consult note suggests that these issues often do not occur in isolation. This probably reflects the influence one organisational issue has on another. For example, informal culture can determine how staff members respond to policies or how staff communicates to patients. Recognising this interrelatedness has implications for what organisational factors are targeted in order to effect behaviour change.

We also found that organisational issues relevant to the development of an ethics concern are not confined to specific patient care settings, patient diagnoses, or reasons for obtaining an ethics consult. Furthermore, organisational issues appeared at the same frequency whether or not the consult was coded as primarily requiring conflict mediation.

The presence of conflict in ethics cases that reached ethics consultation (38%) is similar to other studies from other institutions.46 Conflict is perhaps the most persuasive reason for incorporating an organisational perspective into clinical ethics consultation. Ethical conflicts between patients and clinicians are analogous to clinical adverse events in the sense that they reflect outcomes we would like to prevent.16 Ethical conflicts can be difficult to resolve2 and incur high human costs for those involved.23 31 Providers and families “become increasingly preoccupied with defending their own strongly held positions” rather than working together to support and treat the patient in need.2 Quality care relies on a collaborative, trusting relationship between provider and patient. Therefore, in addition to lending support for applying a quality improvement framework to general ethics concerns, this study highlights the quality of care implications of understanding the organisational issues involved in the origin and evolution of ethical conflicts.

This study has several limitations. First, the description of organisational issues as they pertain to clinical ethics (table 1) is only a preliminary typology and may need further characterisation. For example, some organisational issues may be too broadly defined and consequently be inappropriately inclusive of concepts attributable to individual characteristics or isolated group dynamics. Also, some organisational issues may not be represented at all and other categories or subcategories may need refining as they relate to ethics. Second, whether or not the organisational issue was present and whether it was pertinent to the development of the ethics case is subject to coding bias. Intercoder reliability was used in an attempt to minimise this bias, however. The κ values achieved in the coding of the contributory organisational issues in each consult note suggest greater than moderate agreement and are similar to those in a comparable study.32

A third limitation is that our understanding of the organisational issues involved in an ethics case was limited by the ethics consult documentation. Whereas it is perhaps more likely that many relevant organisational issues were not included in the ethics consult narrative, it is also possible that those that were documented did not carry much significance with respect to the development of the ethics case. In addition, we were not able to gauge from the consult notes whether some organisational issues were more important to the ethics concern than others, or whether some were more amenable to intervention than others. Information about the severity or significance of contributory organisational issues to clinical ethics concerns would be valuable, and for this reason prospective studies are needed.

CONCLUSION

Organisational issues contributed to the development of most ethical concerns that resulted in clinical ethics consults. In addition, many of the organisational issues derived from published quality improvement protocols appear to be pertinent to clinical ethics consultation and could be used by consultants in efforts to undertake a systems-based approach to an ethics concern. Ethics consultants should attempt to identify whether organisational issues such as those relating to informal organisational culture, policies and procedures and communication are important to the origin and evolution of the ethics concerns they address in their role as ethics consultants. Ethics consultants and ethics committees may also find it useful to be explicit in conveying these identified issues to clinical administrators and quality improvement experts so that they can be addressed further. Prospective studies are needed to validate these findings.

REFERENCES

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Footnotes

  • Competing interests: None.

  • Ethics approval: This study was examined and approved by the Seattle Children’s Hospital’s Institutional Review Board.

  • A version of this paper was presented at the 10th Annual Meeting of the American Society for Bioethics and Humanities, Cleveland, Ohio, USA, in 2008.

  • Provenance and peer review: Not commissioned; externally peer reviewed.

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