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\begin{document}

\title{Redmann Provider moral distress in caring for tracheostomy and
ventilator dependent children: A cross-sectional evaluation.}



\author[1]{Andrew Redmann J}%
\author[2]{Catherine Hart}%
\author[2]{Matthew Smith}%
\author[2]{Carrie Martin}%
\author[2]{Adrienne Borschuk}%
\author[2]{DonnaMaria Cortezzo E}%
\author[2]{Dan Benscoter}%
\affil[1]{Children's Minnesota}%
\affil[2]{Cincinnati Children's Hospital Medical Center}%


\vspace{-1em}



  
  \date{May 24, 2024}


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\selectlanguage{english}
\begin{abstract}
\textbf{Objective:} To determine levels of moral distress in a pediatric
unit caring for patients with tracheostomy/ventilator dependence.
\textbf{Hypothesis:} Moral distress will be significant in a dedicated
pediatric trach/vent unit. \textbf{Methods:} The Moral Distress
Survey-Revised (MDS-R) is a 21-question survey measuring moral distress
in pediatrics. The MDS-R was anonymously distributed to MD/DOs, advanced
practice practitioners (APPs), RNs and RTs in a unit caring for
tracheostomy/ventilator dependent patients. Descriptive statistics,
bivariate and multivariate analysis were performed. \textbf{Results}:
Response rate was 48\% (61/127). Mean MDS-R score was 83 (range 43-119),
which is comparable to reported levels in the pediatric intensive care
unit. APPs had the highest median rate of moral distress (112, IQR
72-138), while MD/DOs had the lowest median score (49, IQR 43-77). RNs
and RTs had MDS-R scores between these two groups (Medians of 91 and 84
respectively). \textbf{Conclusions:} Moral distress levels in a unit
caring for long term tracheostomy and ventilator dependent patients are
high, comparable to levels in pediatric ICUs. APPs had higher levels of
distress compared to other groups. This may be attributable to the
constant stressors of being the primary provider for complex patients,
especially in a high-volume inpatient setting.%
\end{abstract}%



\sloppy


\textbf{Introduction:}

Moral distress is a phenomenon that often occurs in intensive care
settings and is defined as ``when one knows the right thing to do, but
institutional constraints make it nearly impossible to pursue the right
course of action'' (1). The concept has been described most
comprehensively in the pediatric nursing literature, as initial work
suggested nurses experienced high levels of moral distress due to their
proximity to patients and the hierarchy of decision-making leading
limited control of care decisions (2-6). However, recent data suggests
that moral distress also affects physicians and advanced practice
providers (APPs) caring for critically ill patients, indicating that it
is a broader issue than initially theorized (7-10).

While moral distress in critical care situations has been studied, there
is comparably scant information about the degree of moral distress
providers experience when caring for patients with chronic diseases
requiring long term care. Anecdotally, providers caring for children
requiring long term ventilatory support with tracheostomy dependence
express some degree of moral distress. It is known that families caring
for these children report some degree of distress (11), but little is
known about the impact on providers caring for this population. To this
end, we surveyed providers in an inpatient unit that specializes in the
long-term care of patients with tracheostomy and ventilator dependence
to determine the degree to which moral distress exists among these
providers.

\textbf{Methods:}

Approval was obtained from Cincinnati Children's Hospital Medical Center
(CCHMC) Institutional Review Board. The Transitional Care Center (TCC)
is a 24-bed unit housed within the main CCHMC campus that cares for
medically complex pulmonary patients who do not require Intensive Care
Unit (ICU) level care but require ventilatory support through either a
tracheostomy or long term non-invasive positive pressure ventilation.
The goal of the unit is to prepare children and their families to
transition from hospital to home care. The median length of stay in the
unit for children with new tracheostomy and ventilator support is 146
days. It is staffed by a pediatric pulmonologist who rotates on service
weekly, as well as a consistent team of APPs. Patients in the TCC are
also cared for by nursing staff and respiratory therapists with
experience in caring for children with chronic ventilatory needs, as
well as specialty teams (Physical Medicine \& Rehabilitation, Neurology,
Gastroenterology, Otolaryngology) as indicated for specific patients.

The revised moral distress scale (MDS-R) is a validated survey to
measure moral distress in those caring for pediatric patients (8-9). It
includes 21 statements describing situations known to cause moral
distress in clinical practice and is scored on a 4-point Likert scale
with respect to frequency and intensity (\textbf{Appendix 1} ). The
survey is scored by multiplying frequency and intensity, with each
individual statement having a range of scores from 0-16. The sum of all
21 products gives an overall score of 0-336. Three additional questions
regarding institutional support for morally distressing situations were
also included in the survey (9).

The MDS-R survey was administered to all pediatric pulmonologists who
regularly staff the TCC (N=13), all APPs who work in the TCC (N=18), all
full-time (0.8 FTE or higher) nurses who primarily work in the TCC
(N=66), and all full-time respiratory therapists who have the TCC as
their primary unit (N=30). A total of 127 surveys were administered
between January 2020 and March 2020. Surveys were given in paper format
to all respondents in their individual mailboxes and returned via an
anonymous envelope to study staff. Prior to distribution of the survey,
providers were made aware they would be receiving this at the monthly
TCC meeting, and a reminder message was shared with all providers one
month after initial distribution of the survey.

Survey responses were entered into a secure REDcap database for data
analysis. Descriptive statistics were calculated including means and
standard deviations or medians and interquartile ranges for continuous
data, and frequencies and percentages for categorical data. We examined
demographics and characteristics of each population under study,
examined response rates, and characterized responses in relation to
population characteristics using t-tests, Wilcoxon Rank Sum tests, or
chi square tests. We excluded questionnaires from the analysis that had
more than three missing MDS-R data points. All statistics were two
tailed and considered statistically significant if p\textless{}0.05. All
analyses were conducted using the SAS 9.4 software (SAS Institite, Cary,
NC). The primary outcome measure was the MDS-R score for the studied
populations.

\textbf{Results:}

A total of 127 surveys were distributed, and 61 complete responses were
recorded, for a response rate of 48\%. Six responses (4 RT, 2 APP) with
more than three missing MDS-R data points were received and not included
in analysis. 13/13 pulmonology MD/DOs completed the survey, 16/18 of
APPs completed the survey, 15/66 of RNs completed the survey and 17/30
of RTs fully completed the survey. Overall demographics are shown
in\textbf{Table 1} . The majority of respondents were female (73.3\%),
younger than 40 (78.3\%) and worked in the TCC less than five years
(56.67\%).

Overall MDS-R scores, Uncertainty scores, and Burnout scores in are
shown in \textbf{Table 2} . Overall MDS-R scores ranged from 0-204, with
a median score of 83 (IQR, 43-119). The mean burnout score was 7.4 (IQR
3-10), and this had a moderate positive correlation (R=0.58,
p\textless{}0.01) with MDS-R scores.

\textbf{Table 3} shows scores for the various provider groups. As a
group, APPs had the highest MDS-R scores, with a median score of 112
(IQR, 72-138), while MD/DOs had the lowest mean MDS-R scores, with a
median of 49 (IQR, 43-77). This was a statistically significant
difference (p\textless{}0.01). RNs had a median MDS-R score of 91 (IQR,
41-123), and RTs had a median MDS-R score of 84 (IQR, 32.5-106). There
were no other statistically significant differences by vocation. Females
had a higher median MDS-R score compared to males (94 vs 54,
p\textless{}0.01). There were no significant differences in MDS-R scores
when looking at years of practice when controlling for vocation.

\textbf{Discussion:}

This novel study evaluated moral distress among providers caring for
long term tracheostomy and ventilator dependent patients in a non-ICU
setting. Our results suggest that moral distress scores for providers
are similar in an inpatient unit caring for children with tracheostomy
and ventilator dependence compared to pediatric and neonatal ICUs
(4-6,8-9,12). There are similarities between ICU patients and non-ICU
tracheostomy dependent patients that may explain this. For example, it
is well known that caring for tracheostomy and ventilator dependent
children is expensive for both families and health care systems, have
high rates of readmission, are complicated by invasive procedures, can
entail discussions around goals of care or complex treatment plans, and
navigating the limited resources related to home healthcare (often
limiting discharge planning) (13-15). These complexities lead to long
hospital stays, and this may exacerbate moral distress in settings not
designed for long term acute care. Unlike non-hospital based long term
acute care facilities (LTAC), there are limitations to providing long
term care in the hospital setting. Often these patients are very
medically complex, limiting options that would normally mitigate
distress, such as planned outings, group activities, and predictable
schedules. In addition, patients with lengthy hospital stays of 1 year
or more can disrupt or cause bottlenecks in patient flow, placing
chronic systemic pressure on staff with respect to space and bed
availability.

One particularly novel finding in our study is the high rate of moral
distress experienced by APPs. This is likely attributable to a variety
of reasons. First, in the TCC, APPs do not rotate off service as often
as physicians (physicians cover between 2-6 weeks a year in the unit).
The APP's are also responsible for a larger number of patients in the
unit than the RN/RTs, which each APP covering 6-10 patients each shift.
APPs thus provide a high degree of continuity for all patients in the
TCC, and are subjected to the stressors for every patient in the unit
for an extended period of time. This is contrasted to attending
physicians, who are subjected to stressors for every patient in the TCC,
but who rotate off service on a regular basis. RN/RTs, by contrast, are
subjected to stressors for extended periods, but care for a discrete
number of patients. While all groups surveyed experience moral distress,
our hypothesis is that both the amount of patient exposure and the
constancy of this exposure plays a role in the degree of moral distress
that is experienced by APPs (5,6, 16). Second, APPs are responsible for
much of the day-to-day care of patients with the premise of practice
autonomy, however, this impacted by inconsistencies in professional
equity from attending physician to attending physician.~ The tension
between a high degree of responsibility accompanied by a lack of, or
inconsistency in, professional equity may lead to moral distress and
burnout. (16-19).

Understanding moral distress is important due to the significant impact
it has on burnout and staff turnover (3,8-9, 20-26). In addition,
burnout is associated with poorer quality of care, and significant
expenses due to decreased clinical productivity and early retirement
(24-26). Anecdotally, this has been seen in the TCC, with low rates of
engagement among providers for leadership activity outside of clinical
work. Understanding factors that are associated with moral distress is
important to provide options to decrease distress. Current strategies
recommended by the literature focus on mitigating the intensity of
stressors, and include education programs, reflective writing,
debriefing meetings, and moral empowerment programs (27-28). While some
early results are promising, the evidence is unfortunately mixed on the
durability of such interventions, and more research is necessary. Our
results suggest that along with decreasing the intensity of stressors,
decreasing the time of exposure (rotating off service) to distressing
situations and better balancing provider authority and responsibility
may also be necessary.

Our study has limitations consistent with any survey research. First, a
survey is a single snapshot in time, and recent patient interactions may
have influenced providers with salient distressing situations to fill
out the survey at a higher rate than those who had lower levels of
distress (non-responder bias). Second, this study was carried out before
the COVID-19 pandemic, and this may skew results, as recent data
suggests that the worldwide pandemic may change the degree of moral
distress felt by providers (29). Third, about a year prior to this
study, a clinical psychologist (APB) was embedded within the unit to
deliver evidence-based psychological interventions to patients and
families to promote coping and functioning as well as to help support
staff with feelings of distress. Due to this, our rates of moral
distress may be lower than similar units without this support in place.
Despite these limitations, our study remains the first quantitative
examination of moral distress in a non-ICU caring for long term
tracheostomy/ventilator dependent patients.

\textbf{Conclusion:}

Moral distress scores are similar in a non-ICU caring for children with
tracheostomy and ventilator dependence compared to published data in
pediatric intensive care units and neonatal intensive care units.
Advanced practice providers had higher rates of moral distress than
physicians. The degree of moral distress may be dependent on distress
intensity, the duration of exposure, and inconsistencies in professional
equity across medical providers.

\textbf{References}

1. McCarthy J, Monteverde S, ``The standard account of moral distress
and why we should keep it''. HEC Forum. 2018 Dec;30(4):319-328

2. Crippen D. ``Moral distress in medicine: Powerlessness by any other
name.'' J Crit Care. 2016 Feb;31(1):271-2.

3. Dodek PM, Wong H, Norena M, Ayas N, et al. J Crit Care. 2016
Feb;31(1):178-82.

``Moral distress in intensive care unit professionals is associated with
profession, age, and years of experience.''

4. Zomorodi M, Lynn MR. Instrument development measuring critical care
nurses' attitudes and behaviors with end-of-life care. Nurs Res. 2010
Jul-Aug;59(4):234-40.

5. Cavaliere TA, Daly B, Dowling D, Montgomery K. ``Moral distress in
neonatal intensive care unit RNs.'' Adv Neonatal Care. 2010
Jun;10(3):145-156.

6. Prentice T, Janvier A, Gillam L, Davis PG. ``Moral distress within
neonatal and paediatric intensive care units: a systematic review.''
Arch Dis Child 2016 2016;101:701-708

7. Chiu PP, Hilliard RI, Azzie G, Fecteau A. Experience of moral
distress among pediatric surgery trainees. J Pediatr Surg. 2008
Jun;43(6):986-93

8. Trotochaud K, Coleman JR, Krawiecki N, McCracken C. ``Moral Distress
in Pediatric Healthcare Providers.'' J Pediatr Nurs. 2015
Nov-Dec;30(6):908-14.

9. Larson CP, Dryden-Palmer KD, Gibbons C, Parshuram CS. ``Moral
Distress in PICU and Neonatal ICU Practitioners: a Cross Sectional
Evaluation''. Pediatr Crit Care Med. 2017 Aug;18(8):e318-e326.

10. Solomon MZ, Sellers DE, Heller KS, Dokken DL, et al. ``New and
lingering controversies in pediatric end-of-life care.'' Pediatrics.
2005 Oct;116(4):872-83.

11. Carnevale FA, Alexander E, Davis M, Rennick J, Troini R. ``Daily
Living with Distress and Enrichment: the Moral Experience of Families
with Ventilator-Assisted Children at Home''. Pediatrics. 2006
Jan;117(1):e48-e60.

12. Dodek PM, Cheung EO, Burns KEA, Martin CM, et al. ``Moral Distress
and Other Wellness Measures in Canadian Critical Care Physicians''. Ann
Am Thorac Soc 2021 Aug;18(8):1343-1351.

13. Berry JG, Goodman DM, Coller RJ, Agrawal R, et al. ``Association of
Home Respiratory Equipment and Supply Use with Health Care Resource
Utilization in Children''. J Pediatr. 2019 Apr;207:169-175.

14. Berry JG, Glader L, Stevenson RD, Hasan F, et al. ``Associations of
Coexisting Conditions with Healthcare Spending for Children with
Cerebral Palsy''. J Pediatr. 2018 Sep;200:111-117.

15. Watters K, O'Neill M, Zhu H, Graham RJ et al. ``Two-year mortality,
complications and healthcare use in children with medicaid following
tracheostomy''. Laryngoscope 2016 Nov;126(11):2611-2617

16. Pastores SM, Kvetan V, Coopersmith CM, Famer JC. ``Workforce,
Workload, and Burnout Among Intensivists and Advanced Practice
Providers: A Narrative Review''. Crit Care Med. 2019 Apr;47(4):550-557

17. Webb SS, Price SA, Coeling HE. ``Valuing authority/responsibility
relationships. The essence of professional practice''. J Nurs Adm. 1996
Feb;26(2):28-33

18. Ashooh MP, Barnette K, Moran TP, O'Shea J, Lall MD. ``Advanced
Practice Provider Burnout in a Large Urban Medical Center''. Adv Emerg
Nurs J. Jul/Sep 2019;41(3):234-243.

19. Klein CJ, Dalstrom M, Lizer S, Cooling M, et al. ``Advanced Practice
Provider Perspectives on Organizational Strategies for Work Stress
Reduction''. West J Nurs Res. 2020 Sep;42(9):708-717.

20. Lambden JP, Chamberlin P, Kozlov E, Lief L et al. ``Association of
Perceived futile or Potentially inappropriate care with burnout and
thoughts of quitting among health care providers''. Am J Hosp Palliat
Care. 2018 Aug 5. {[}Epub ahead of print{]}

21. Hally SM, Settle M, Nelson BD. ``Relationship Between Moral Distress
and Intent to Leave a Position Among Neonatal Intensive Care Nurses''.
Adv Neonatal Care. 2021 May 27 Online ahead of print.

22. Lu DW, Dresden S, McCloskey C, Branzetti J, et al. ``Impact of
Burnout on Self-Reported Patient Care Among Emergency Physicians.'' West
J Emerg Med. 2015 Dec;16(7):996-1001.

23. Russell K. ``Perceptions of Burnout, Its Prevention, and Its Effect
on Patient Care as Described by Oncology Nurses in the Hospital
Setting''. Oncol Nurs Forum. 2016 Jan;43(1):103-9.

24. Dewa CS, Loong D, Bonato S, Trojanowski L. ``The relationship
between physician burnout and quality of healthcare in terms of safety
and acceptability: a systematic review''. BMJ Open 2017 Jun
21;7(6):e015141

25. Dewa CS, Jacobs P, Thanh NX, Loong D. ``An estimate of the cost of
burnout on early retirement and reduction in clinical hours of
practicing physicians in Canada''. BMC health Serv Res. 2014 Jun
13;14:254.

25. Mills M, Cortezzoi DE. ``Moral Distress in the Neonatal Intensive
Care Unit: What Is It, Why It Happens, and How We Can Address It.''.
Front Pediatr. 2020 Sep 10;8:581.

27. Imbulana DI, Davis PG, Prentice TM. ``Interventions to reduce moral
distress in clinicians working in intensive care: A systematic review.''
Intensive Crit Care Nurs. 2021 Oct;66:103092. Epub 2021 Jun 17.

28. Davis M, Batcheller J. ``Managing Moral Distress in the Workplace:
Creating a Resiliency Bundle''. Nurse Lead. 2020 Dec;18(6):604-608.

29. Thomas TA, Davis FD, Kumar S, Thammasitboon S, Rushton CH.
``COVID-19 and Moral Distress: A Pediatric Critical Care Survey''. Am J
Crit Care 2021 Aug 19;e1-e19. Online ahead of print.

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