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Improving Caregivers' Perceptions Regarding Patient Goals of Care/End-of-Life Issues For The Multidisciplinary Critical Care Team
Improving Caregivers' Perceptions Regarding Patient Goals of Care/End-of-Life Issues For The Multidisciplinary Critical Care Team
Brian T. Wessman, MD, FACEP1,2, Carrie Sona, RN, MSN, CCRN, CCNS, ACNS-BC3,
and Marilyn Schallom, PhD, RN, CCNS, FCCM4
Abstract
Objective: With population aging and growth, use of critical care medicine at the end of life continues to rise, while many critical
care providers are not adequately trained regarding goals of care/end-of-life (GOC/EOL) issues. A multidisciplinary intensive care
unit (ICU) team intervention regarding GOC/EOL communication will enhance the clinical abilities of all critical care providers
when discussing GOC/EOL issues and increase ICU staff comfort level while improving transitions for patients to a comfort care
approach. Design: This study was a preintervention/postintervention survey evaluation. Setting: This study was conducted at an
academic tertiary surgical burn trauma ICU. Population: The intervention was provided to nursing, ancillary staff, house staff,
and attending physicians. Intervention: An initial survey was circulated among the critical care staff for baseline expecta-
tions, satisfaction, and understanding of GOC/EOL care. A robust intervention was begun including the creation of a
multidisciplinary GOC/EOL team, communication tools for providers, patient–family pamphlets, standardized EOL order
sets, and formalized didactic sessions. Subsequently, the same survey was circulated and compared to baseline data.
Measurements: Preintervention/postintervention survey data were reviewed and statistically analyzed. Main Results:
Our survey response rate for preintervention/postintervention was 50.4% and 36.1%, respectively. The intervention gen-
erated heightened interest in improving family communication and provided focal direction to foster this growth. Based on
the serial surveys regarding our intervention, statistically significant staff improvements were seen in ‘‘work stress’’ (P ¼
.04), ‘‘EOL information’’ (P ¼ .006), and ‘‘space allotment’’ (P ¼ .001). Improved congruence of families and health care
providers regarding decision over intensity of care was also noted. Conclusion: We created a novel unit-based multi-
disciplinary program for improved EOL/GOC approaches in the critical care setting. A similarly formatted program could be
adapted by other ICUs. Benefits of such a program include improving caregivers’ perceptions regarding EOL/GOC issues and
fostering critical care team growth.
Keywords
end-of-life care, goals of care, multidisciplinary, communication, education, order sets
Received June 21, 2015. Received revised August 18, 2015. Accepted for publication August 25, 2015.
Introduction 1
Division of Critical Care Medicine, Department of Anesthesiology,
Despite a staggering 1 in 5 US patients dying in or soon after a Washington University in St. Louis School of Medicine, St. Louis, MO, USA
2
stay in the intensive care unit (ICU) and projected growth in the Division of Emergency Medicine, Washington University in St. Louis School of
aging population, many critical care providers are not ade- Medicine, St. Louis, MO, USA
3
Department of Nursing, Barnes-Jewish Hospital, St. Louis, MO, USA
quately trained or skilled at goals of care/end of life (GOC/ 4
Department of Research for Patient Care Services, Barnes-Jewish Hospital,
EOL)-focused discussions.1-5 At the end of life (EOL), many St. Louis, MO, USA
patients find themselves trapped between the need for critical
care expertise and assistance and the desire to avoid invasive Corresponding Author:
procedures.6,8,9 The majority of people would prefer to die at Brian T. Wessman, Critical Care Medicine, Emergency Medicine and Anes-
thesiology, Washington University in St Louis School of Medicine, St Louis, MO
home, however, studies show that over 67% end up dying in 63110, USA.
a hospital or nursing home.10-12 Almost one-third of Medicare Email: wessmanb@anest.wustl.edu
patients who die receive medical care in the critical care setting
during their last 6 months of life.1 Finally, although 80% of
people say that if they were seriously ill, they would want a
conversation with their physician regarding EOL issues, only •
7% of patients actually have this type of conversation.5,13
•
Oftentimes, patients and their families are exposed to con- o
flicting verbal messages and discrepant actions by the critical o
o
care team that leave them even more confused about patient •
care directions at the EOL.2,8,9 Studies show that states with •
increased focus on EOL support and education tend to have •
fewer ICU days in the last 6 months of life.14 A terminal
ICU hospitalization is approximately 4 days longer (12.9 vs
8.9 days) than a regular ICU admission, with a cost difference
of approximately US $16 000.1
Prior studies have shown that EOL communication with fam-
ilies of ICU patients is inadequate due to poor provider interac-
tions, misunderstanding of medical trajectory of the patient, and
•
lack of comprehension of employed medical phrases.7,9,15 Feel- •
ings of guilt or responsibility may permeate the thoughts of the •
family members and bedside providers. End-of-life discussions •
•
have been shown to reduce both the incidence of aggressive •
intervention and the subsequent psychological stress among sur-
viving family members.16 Previous educational interventions
have looked at separate individual curriculum for physicians and
nurses without any crossover discussions.4,17 Exceptional criti-
cal care requires a team multidisciplinary approach with coor-
dinated input from the intensivist, nurse, social worker (SW),
pharmacist, dietitian, respiratory therapist (RT), physical
therapist, and other staff members who are unified in their •
approach to the patient’s current treatment goals. •
To address this issue, we created a novel all-inclusive ICU- o
o
based GOC/EOL-focused program with the goal of providing a
multidisciplinary communication approach for families of the o
•
critically ill patient. We hypothesized that a multidisciplinary
•
ICU team intervention regarding GOC/EOL communication •
will enhance the clinical abilities of all critical care providers
when discussing GOC/EOL issues with patients and their fam-
ilies, increase ICU staff comfort level, and improve transitions Figure 1. Study design and implementation over the 3 phases.
to a comfort care approach. This study was done under Institu-
tional Review Board approval of Washington University in St
Louis School of Medicine. nurses, bedside nurses, pharmacists, dietitians, RTs, physical
therapists, SWs, pastoral care, patient care technicians, and
other support staff. An ICU-based focus group examining criti-
Materials and Methods cal care provided at the EOL identified the recurring issues
This study was conducted at an academic tertiary surgical/ among the health care team of poor communication and a poorly
trauma 24-bed surgical burn trauma intensive care unit (SICU) coordinated approach to GOC/EOL care.
expanded to a 36-bed SICU (during a planned remodeling Nursing leadership (clinical nurse manager and clinical
period) with an average of 15 deaths per month and 214 monthly nurse specialists [CNS]) of the SICU identified the need for
admissions. The preintervention/postintervention arms were improvement in EOL care and discussions regarding goals of
completed over a 2-year period (2011-2013; Figure 1). The care (GOC). A core group comprised of nurses, and key disci-
SICU staffing model embraces a multidisciplinary team approach plines were convened. The group included nurses, 2 CNSs, 2
with an in-house 24/7 attending intensivist supported by critical physicians, SW, chaplain, RT, clinical dietitian, and clinical
care fellows (background residency training in surgery, anesthe- pharmacist. The team met initially to identify issues and areas
siology, and emergency medicine), resident house staff from for improvement. Three major areas were identified: (1) com-
various disciplines, and advanced practice acute care nurse prac- fort care order set development and implementation, (2) patient
titioners. The critical care team is also comprised of charge and family needs during GOC transitions and at the EOL in
the ICU setting, and (3) multidisciplinary education of best A standardized GOC and comfort care computer order set
practices during communication and provision of EOL care. was created to help direct physicians to order appropriate com-
A search of the literature for best practices on each topic was fort care measures (Figure 5). This order set focused on discon-
conducted. One of the CNSs attended the 2-day American tinuing any unnecessary painful interventions and eliminating
Nurses Credentialing Center End-of-Life Nursing Education invasive monitoring. It also focused on the appropriate analge-
Curriculum (ELNEC).17 Palliative care nurse practitioners and sics and sedatives for EOL care.
hospice registered nurses (RNs) participated in several meet- Formalized didactic sessions were held with physicians, nur-
ings in the first 6 months as consultants. An ethicist from the sing, and the health care team to improve education regarding
affiliate university joined the team within the first year. GOC/EOL issues. Formal annual structured ‘‘Grand Rounds’’
A previously vetted survey of Nurses’ Perception of End-of- lectures were presented as part of the critical care educational
Life Care created by Hansen et al18 was modified to include the process. Role-playing across specialty disciplines (ie, nursing
multidisciplinary critical care team upon receiving permission and physician) in small groups with specific case examples was
from the authors. The original survey has 5 core domains: (1) also used.17 Focused education for all existing nursing staff on
knowledge and ability, (2) work environment, (3) support for EOL care was initiated. The addition of a 2.5-hour module of
staff, (4) support for patients and families, and (5) work stress. EOL care, based on ELNEC, to the critical care course for all
Cronbach a results ranged from .71 to .93 over 3 phases with new ICU nurses was also used. Specific course content included
the original survey. The same integrity of surveying these 5 overview of dying in the ICU, communication and ethics sur-
core domains was kept in the multidisciplinary modifications. rounding death, and EOL care discussions and ‘‘the final hours.’’
The revised survey was administered via an e-mail Survey A guideline for nurses outlining important steps on the day of
monkey link to unit nurses, intensivist physicians (attendings, comfort care order activation was developed and implemented.
fellows), surgery/anesthesiology/emergency medicine resi- Additionally, during this process, the unit was building a new
dents rotating through the unit, SICU nurse practitioners, RTs, 36-bed SICU physical plant. Ideas for family conference rooms,
SWs, chaplains, clinical dietitians, and clinical pharmacists. family-centered patient care rooms, and waiting rooms were
Two e-mail reminders were sent as follow-up. Upon closure incorporated into the design. The unit moved to the new SICU
of the survey, robust interventions were implemented over the footprint during the implementation phase of the interventions.
next year based on survey and literature review results. Subsequently, the same survey adopted from Nurses’ Per-
Interventions included the creation of a multidisciplinary ception of End-of-Life Care18 was circulated among the critical
GOC/EOL team, communication tools for providers, patient– care staff for comparing data regarding expectations, satisfac-
family pamphlets, standardized computerized GOC and comfort tion, and understanding of GOC/EOL care. Baseline data and
care order sets (ICU and non-ICU selections), and formalized postintervention data were then compared for the 5 subscale
didactic sessions (based partly on the ELNEC curriculum17). scores and for 4 individual items: (1) space (support for patients
Model communication templates for physicians and nurses and their families’ domain), (2) ethics consultation (support for
were created to help guide conversations with patients and fam- staff domain), (3) information (support for patients and their
ilies (Figures 2 and 3). These templates provided instructions families’ domain), and (4) family meetings (support for staff).
regarding scene setup, preparing for the conversation, involv- These 4 items were selected prior to analysis based on antici-
ing all health care participants, and model outline discussions pated changes from educational intervention and move to a
to guide the conversation. The physician templates were split new ICU physical space. Baseline data and postintervention
into 3 sections including ‘‘the initial GOC conversation,’’ ‘‘the data were then compared. Survey data were imported into
update conversation,’’ and ‘‘the EOL focusing on transition to SPSS (Chicago, Illinois) for analysis. Descriptive statistics,
comfort care conversation.’’ These templates were circulated Cronbach a coefficients, comparison of mean scores with
among the critical care staff via educational sessions, directed t tests between time periods, respondents combined and per
e-mails, and included in both the nursing resource handbook role in unit, and w2 analysis of role in unit were conducted.
and the house staff/fellow physician handbook.
A patient–family pamphlet was created to provide basic
education for patients and family members facing GOC/EOL Results
decisions (Figure 4). This pamphlet included explanations and
definitions of basic medical terminology. It also included a sec-
Sample
tion with details regarding ‘‘what to expect’’ during/at the EOL. The preintervention anonymous survey was sent to 242 providers.
The bedside nurses were empowered to review this educational A total of 122 respondents took part in the survey for a response
resource with families as well as conduct follow-up conversa- rate of 50.4%. The postintervention anonymous survey was sent
tions to answer any questions. Nurses performed coordination to an overlapping same group of providers (total 280 providers).
with guest and patient services for a food basket delivery on the A total of 101 respondents (Table 1) took part in the survey for a
day of comfort care order activation. After explanation to postintervention response rate of 36.1%. These responses were
family, the nurse placed a lotus flower sign outside the all deidentified, and therefore, we were unable to link pre-
patient’s room (Figure 4) when the decision to change to com- intervention and postintervention surveys. Compared with
fort care was made. the preintervention survey group, the postintervention survey
group included more attending physicians (w2[1] ¼ 4.66; P < 1 of 1 (100%), CNS 1 of 1 (100%) and chaplain 0 of 1 (0%).
.05) and fewer residents (w2[1] ¼ 11.05; P < .01). The postintervention response rate by specialty was RN 47 of
The percentage of respondents by specialty preintervention 100 (47%), attending MD 18 of 28 (64.2%), fellow MD 8 of
was RN 60 of 80 (75%), attending MD 10 of 20 (50%), fellow 12 (67%), resident MD 9 of 108 (8%), nurse practitioner 8
MD 7 of 10 (70%), resident MD 32 of 108 (29.6%), nurse of 12 (67%), RT 5 of 14 (35.7%), SW 1 of 1 (100%), RD 2
practitioner 2 of 5 (40%), RT 7 of 14 (50%), SW 1 of of 2 (100%), pharmacist 1 of 1 (100%), CNS 1 of 1 (100%),
1 (100%), registered dietitian (RD) 1 of 1 (100%), pharmacist and chaplain 1 of 1 (100%).
Discussion
We report significant improvements in the domains of ‘‘work
Figure 4. Lotus flower/pamphlet image. stress,’’ ‘‘EOL information,’’ and ‘‘space allotment’’ with the
Table 1. Responder Characteristics. Table 3. Overall Scores and Significant Individual Items.
rotation) is not only a potential limitation to the results but also This was provided as extra space in each patient room as well
typical of the scheduling nuances that occur at large academic as formalized patient/family conference rooms to allow private
institutions. EOL/GOC discussions in an adequate venue. Our findings sug-
Our survey was developed previously and published as an gest that future unit designs should incorporate family support
accepted evaluation tool for the perception of EOL care.18 space in the room as well as in the conference areas that accom-
We sought approval of the prior authors to change the potential modate privacy and large numbers.
respondents of the survey from nurses to the multidisciplinary As part of our education process, we created educational
practitioners who work in the critical care domain. However, discussion templates for both nurses and physicians. Our tem-
nurses and physicians dominated our responses, as they com- plates were designed with a 3-part process, based on develop-
prise the majority of our SICU workforce. It should also be ment of a trusting relationship model with the family. The
noted that at our large academic center, greater than 80% (pre) templates encourage engaging the family in the discussion with
and 70% (post) of our respondents have less than 10 years of appropriate prompts to allow for listening and showing empa-
critical care experience. This provides ample opportunity for thy. These discussion templates were reviewed in formalized
further education and career development in an area such as didactic sessions as well as added as available resources in
EOL/GOC. We also believe a similar mixture of ICU provider existing SICU handbooks. Subgroup analysis of the postinter-
population/experience level exists at other large academic vention survey found that this additional information was well
training centers. received by the physician (attending/fellow) subgroup. Previ-
One of our major goals was to improve the perception and ous studies have shown that EOL/GOC education is a short-
experience of the critical care provider, as they help both coming of current medical education.4 Simple resources can
patients and their families transition into the EOL spectrum at least provide a framework to help intensivists improve their
of care. In our opinion, this is an integral part of critical care EOL communication skills/tools while also providing them
but one that lacks organized formal training for both nurses and personal satisfaction with the extra guidance of published
physicians. Innate empathy can provide a nice framework, but information.
more formalized education and guidance will help the provider In the knowledge domain, the intervention appeared to help
with their own emotional challenges as they face these stressful the advanced practice clinicians the most. This group was pri-
interactions. One of our goals was to provide the multidisci- marily comprised of advanced practice RNs in the nurse practi-
plinary team with the building tools and strategies of how to tioner role. An increase in the number of nurse practitioners
approach these EOL/GOC discussions. This was done through due to ICU staffing requirements occurred in 2011 with a large
formalized didactics, mock discussion templates, role-playing, majority of them being recent graduates. Their initial inexperi-
and directed feedback. The respondents of our survey noted ence of managing patients at the EOL may explain the observed
that this overall intervention did lead to a statistically signifi- improvement being greater with them than the attendings and
cant improvement in work stress. fellows. However, we did not originally include further subana-
Our improvement strategy also focused on providing the lysis questions to explore reasons from the items asked on the
patient and families with applicable resources that they could survey.
refer to on their own time frame. A formalized EOL family A major weakness of our study is that it was completed
educational pamphlet was developed and then put through a at a single institution. As reported previously, this was done
group editing process to make sure all applicable components at a large academic center with a high-acuity SICU. As an
were covered. Per report, our nurses enjoyed having a forma- academic center, we have very ‘‘junior-level’’ trainees
lized resource that they could provide a patient’s family and involved in critical care. Some of the approaches to this
review with them as needed. Our postintervention survey rated EOL/GOC intervention may not be available at smaller
overall improved critical care provider satisfaction with this institutions. However, we do feel that this material is appli-
initiative. We also started the process of hanging a lotus flower cable to institutions of all sizes. The change in our physical
(accepted international flower for palliative care)23 sign outside ICU location during this study with construction of new
a patient room for a patient on a comfort care trajectory after family support spaces would not be a realistic expectation
completion of a formal comfort care discussion with the family. for all institutions. This study also did not evaluate sustain-
The lotus flower also became an easy way for all of our staff to ability of this intervention. Obviously, an intervention such
communicate and show quiet respect for that patient and their as this one needs to have longevity and integration into the
family. normal critical care culture. Anecdotally, we have noted that
Physical space allotment also received high satisfaction our physician fellow graduates who have remained as attend-
marks in the postintervention survey. Our EOL/GOC initiative ing faculty at our institution do have an improved skill set
overlapped with the redesign and movement of our physical at EOL/GOC discussions and patient care. We did not directly
ICU plant. Our SICU expanded from a 24-bed unit to a survey patients or family members to determine patient-
36-bed unit. Our preintervention data included feedback centered impact. Finally, although this study followed a prein-
regarding the need to improve family space resources. As part tervention/postintervention format, the data were gathered in
of the design for the new unit, we referenced these results and survey format and is subject to the innate weaknesses of this
made sure to stress the need for improved family support space. type of study.