This paper provides a descriptive analysis encompassing two years of CECs in a regional health system across three states and multiple specialties, addressing new questions of consultation indications for a regional hospital with a mostly volunteer ethics committee. This research categorizes and describes data contained from initial ethics consult to resolution of each case, using the information to describe trends and guide quality improvement for this system and others like it. The following findings will be discussed with a focus on types of consult, consulting departments, decision making entities, and quality improvement recommendations for development of CEC policy.
Types of ethics consultations
Unsurprisingly, most of our cases involved patients who were admitted as inpatients in general medicine wards. Those who received consultations were admitted for a median time of 21 days, receiving the consultation a median time of eight-and-a-half days into their stay, and discharging a median seven days following consultation. The median time from admission to consultation among this patient population was roughly four days earlier than reviews containing patients of similar median hospitalization time [7, 8]. This data did not permit analysis of the timeline from ethics consultation request to recommendation, a measure used in some reviews to gauge ethics response [8]. As there is no standardized documentation for ethics consultations, this is not uncommon. Due to the on-call nature of these ethics committees, and documented resolution following initial call, it is concluded that the majority of this healthcare system’s CECs reached resolution immediately following initial consultation. It is most typical that cases are resolved when the ethicist (or team of ethicists) can provide a professionally supported recommendation. Resolution is reached when the consulting ethicist deems the CEC has reached a satisfactory outcome. As the complexity of ethics cases do not often permit specific metrics of quality, it is best left to the consulting ethicist to determine whether outcomes are satisfactory. Consult-to-resolution timeframe is not the case in many healthcare systems, where ethics consults often take 1–3 days to reach a resolution [7, 8]. The smaller size and robust committee numbers play a part in this, but the organizational commitment to having a team member on call at all times is something that could be implemented at larger systems as well. Volunteer members who are willing and able to be on call 24/7 implies that in systems with paid ethicists, the standard could and should be immediate or near-immediate consultations rather than only weekdays during working hours.
Consultation departments
While general medicine requested the largest share of CECs; departments caring for imminently dying patients, such as critical care, trauma surgery, and emergency, also accounted for a large portion of patients. Considering the critical nature of the ethics questions these departments face, on-call ethics teams are an essential tool. In this healthcare system, 19 of 21 recorded cases from these departments met immediate resolution following initial consultation. This further suggests the earlier stated need for immediate consultation. It is important to note that many of these cases are on a strict timetable, and thus earlier ethics resolution may have the ability to improve patient care. In comparison to similar research at larger urban hospitals with more academic committees, the breakdown by department looks to be largely the same. This suggests that there may not be a large difference in comfortability making consultations based on formulation of ethics committees. Whether a provider identifies more with a committee made up largely of peers may not play as large a part as other factors, such as knowledge about the role of their ethics committee or previous experience requesting consultation. Further research investigating attitudes about ethics consultation by department may be useful. Investigating differences in consult indications across different specialties as well as differences in consultation requests based on committee composition may add new possibilities for quality improvement in the future. To that end, the current ethics consultation request form does not include the field of “requester name”, this would be of great benefit to analyze CEC use trends and care team-patient dynamics. Like other studies, it is common for attending physicians to submit ethics requests, but it is unclear if other members of the care team or family members submitted CEC requests in this data set [8].
Decision-making entities
Considering only 19 of the total 77 patients with recorded decision makers had a designated health care agent, it was not surprising the second most common broader category of ethics consultation request were those involving the question of patient representation. These CECs involved cases in which there was difficulty assessing a patient’s capacity to represent themself or difficulty determining a patient representative. Patient representation in this population is unique in that Minnesota and Wisconsin do not have a hierarchy in determining patient surrogate decision makers. State statute does not name the order of patient decision makers in the case where one has not been named. This may have implications on the generalizability of these results in the states where there is a hierarchy of decision makers as written in state statute. While only twelve patient cases occurred in North Dakota, a state with surrogate decision-making hierarchy, differences in consultation cause were observed in our data. In Minnesota and Wisconsin, roughly one-third (31 of 91) of all consultations cited patient representation (unrepresented patient or determining appropriate decision maker) as cause for consultation, while only one-quarter (3 of 12) of North Dakota consultations cited the same cause. Observing larger patient populations for similar trends would allow better comparison of states with or without surrogate decision-making hierarchy, and further delineate the utility of ethics consultations in approaching patient representation.
Like many other healthcare systems, end-of-life decisions were the most prevalent reason for ethics consultation [8, 9]. Of the 73 admitted patients, 24 patients, nearly one-third, were documented deceased during the stay in which the consult occurred. Understandably, very few cases involving end-of-life care were those in which the patient could make their own decisions; patients represented themselves in only three of these 35 cases. Further, only four of 35 end-of-life CEC patients had advance directives filed at time of consultation. Overall, 18 of 83 patient cases with accessible medical records had advance directives. While the lack of documented advance directives may be explained considering that patients with advance directives may be less likely to require ethics consultations; the low number of these documents and overall number of consultations highlights the importance of promoting conversations regarding advance care planning with patients. The lack of articulated advance directives place immense pressure on care teams while deciding care when patients’ healthcare wishes are not known. Unfortunately it is these cases where care team members must decide what they think is best for the patient, cognizant of the fact that they may be going against the patient’s wishes unknowingly. This further illustrates the utility of a responsive on-call ethics team in aiding care team members in ethical decision making.
Ethics policy formulation
With existing healthcare policy used as a source in 25.2% (n = 26) of all CECs, review of such policies by ethics committees becomes critical in making sure that they are current and correct in following the mission of the healthcare system. Since many ethics teams have meetings monthly or quarterly, it would be reasonable for team members to have at least a yearly holistic review of the existing policy. When policy is created, endorsement from the Essentia Clinical Practice Committee is obtained, followed by approval from every hospital’s executive medical staff committee. The policy may be written once, and then reviewed triennially with minimal change to the actual policy. In the case of a major change to the ethics committee membership or policy, such as a large merger or new law, it would likely be necessary to have a more robust review or total revision of existing ethics policies. Enacting change in ethics policy is often a very involved process, but regular reviews, rather than sporadic large changes and rewrites will make the process go more smoothly, with the added benefit of having a more updated policy to work with.
Documentation of ethics consultations
Chart notation specific to an ethics consult is one of the most robust and easiest ways to make sure that CECs are documented for review, and so that departments, patients, and their families are aware that a consult has been made. As of April, 2021, federal ruling of the 21st Century Cures Act mandates that healthcare providers offer patients access to their medical records online, without delay or charge, called “open notes” [10, 11]. Given this transparency between providers and patients in the era of ‘open notes’ where patients have the right to read all personal medical records, there are questions about which notes should be included in records accessible by patients. Although there is ability for providers to hide a chart note in cases where it could cause a patient imminent distress or harm, there is still likely some hesitancy to document consult information, especially in cases with conflicting care plans or safety concerns [11, 12].
It is important to note the third most common cause (28 of 103 cases) for consultation was “conflict with care plan”. Documentation often made it unclear whether this conflict was between the patient and care team, between patient and family members, amongst family members, between family and the care team, or between members of the care team. Characterizing this conflict in the initial ethics consultation may be useful in delineating whether the consultation should be documented in the patient medical record. For example, documentation of conflicts between patients and the care team in the medical record may be cause for distrust and damage the provider-patient relationship.
With 37 of 83 cases in this set containing documentation specific to the consults, there is still clear room for growth in ethics documentation. To ensure satisfaction for both providers and patients (or their respective entities) and given the potential for providers to hide notes that could compromise patient safety, a policy mandating ethics-specific documentation in the patient chart would be beneficial. This would enable an ethics department to keep track of time and experience consulting, allow for trend assessment analysis, and make a clear registry of cases for further research [13]. However, the wide range of complexity in ethics cases may pose difficulty in standardization of documentation methods. Childers et al. suggests incorporating narrative features in ethics consultation documentation; this is thought to not only increase autonomy of patients by allowing them to be “more informed and involved in their care”, but also strengthen the care team’s understanding of the patient’s illness [12]. In supporting the patient’s narrative of care, Mangino and Danis suggest involving patients whenever possible in the consultation, and when involvement is not possible, minimize negative reactions from patients by including a preface to notes [14]. Mangino and Danis suggest adding a three part preface in these notes, one that: “1) describes the nature and purpose of ethics consultations, 2) alerts patients that they might be unaware that an ethics consultation has been requested, and 3), provides information for contacting the ethics consultation service about any questions or concerts” [14].
In cases where it is determined that documentation may cause harm to a patient, it may be of benefit to approach withholding documentation considering the basic ethical framework of non-maleficence. In these cases, it may be justified to enact a level of therapeutic privilege regarding CEC disclosure to the patient or surrogate decision maker. This would need to be done on a case-by-case basis to allow someone to forgo documentation of a specific CEC. In these cases, it would be of recommendation to receive endorsement of the ethics committee or healthcare ethicist in withholding ethics documentation. As it is best practice for physicians to document cause for withholding information in the cases of therapeutic privilege, cases where ethics consultation documentation is withheld from the medical record also call for stringent internal documentation. Of the total 103 consultations, three were also designated as organizational CECs. It may also be permissible to omit consultations from the patient record that do not involve the patient’s care, for example, those specific to organizational policy. Ultimately, it is recommended to promote patient involvement in consultations, and document CECs in the medical record with the rare exception of those cases where documentation may cause harm to the patient, or those where the ethics consultation did not pertain to the patient’s care.
Limitations
One of the major limitations of this study is the issue with logging the ethics consultations. Of the 99 unique patients, 20 patient medical records could not be retrieved due to lack of identifiable data; this is partially due to the fact that MRN numbers were not a required field on the ethics consultation form. This means chart review is not available and multiple pieces of data had to be left out of the study. There is currently no standard protocol for entry of consultation data, which led to issues categorizing data in some instances. Regardless, all findings from this two-year time period were logged and each case was used as part of some larger data set in this study.
Another one of the limitations is the relatively small number of consults done over the two-year period. Most other studies at larger hospital systems have larger numbers or longer time periods than what was used in this study (Tapper et al., 2010;Kaps & Kopf, 2020). This limits the power of the study, and therefore may limit the generalizability of it to other hospital systems of much larger or smaller size, or of those that have a significantly different demographic makeup (i.e. urban teaching hospitals).
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