YJCRC-53630; No of Pages 7

Journal of Critical Care xxx (2020) xxx

Contents lists available at ScienceDirect

Journal of Critical Care

journal homepage: www.journals.elsevier.com/journal-of-critical-care

Ethical, legal, and communication challenges in managing goals-of-care

discussions in chronically critically ill patients
Shahla Siddiqui a,⁎,1, Wei Wei Zhang b,1, Katharina Platzbecker a, Molly J. Douglas c,
Laura K. Rock d, Matthias Eikermann a,e
a
Department of Anesthesia, Critical Care and Pain Medicine, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston, MA, USA
b
Division of Trauma and Critical Care Surgery, Rutgers Health University Hospital and Rutgers New Jersey Medical School, Newark, NJ, USA
c
Division of Trauma, Critical Care, Burn and Emergency Surgery, Banner University Medical Center and The University of Arizona College of Medicine – Tucson, Tucson, AZ, USA
d
Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston, MA, USA
e
Klinik für Anästhesiologie, Universitätsklinikum Essen, Essen, Germany

a r t i c l e i n f o a b s t r a c t

Available online xxxx Clinicians should expect controversial goals of care discussions in the surgical intensive care from time to time.
Differing opinions about the likelihood of meaningful recovery in patients with chronic critical illness often
exist between intensive care unit providers of different disciplines. Outcome predictions presented by health-
care providers are often reflections of their own point of view that is influenced by provider experience, profes-
sion, and personal values, rather than the consequence of reliable scientific evaluation. In addition, family mem-
bers of intensive care unit patients often develop acute cognitive, psychologic, and physical challenges. Providers
in the surgical intensive care unit should approach goals-of-care discussions in a structured and interprofessional
manner. This best practice paper highlights medical, legal and ethical implications of changing goals of care from
prioritizing cure to prioritizing comfort and provides tools that help physicians become effective leaders in the
multi-disciplinary management of patients with challenging prognostication.
© 2020 Elsevier Inc. All rights reserved.

1. Introduction
Approximately 5.7 million patients in the United States are admitted
each year to intensive care units (ICU) [1]. In 2009, an estimated
380,000 patients remained in the ICU for at least eight days, leading to
approximately $25 billion in hospital-related costs in the United States
[2]. In addition to additional costs overtreatment contributes to a
greater demand for ICU beds to provide adequate monitoring of such
patients who are offered these treatments. This may possibly result in
missed opportunities to provide care to patients who are in need of in-
tensive care treatment. Patients who stay for more than 1–2 weeks in
the ICU and have prolonged life supportive treatment can be classified
as chronically critically ill according to consensus definitions. The mor-
tality and cost of ICU care for these patients is higher for these patients
compared to patients who stay for shorter periods in the ICU [2].
Determining the most appropriate goals of careis challenging, as pa-
tients treated in the ICU often don't have the capacity of making
Abbreviations: ICU, Intensive Care Unit; CCI, Chronic Critical Illness.
⁎ Corresponding author at: Department of Anesthesia, Critical Care and Pain Medicine,
Beth Israel Deaconess Medical Center, 330 Brookline Ave., Boston, MA 02115, USA.
E-mail address: ssiddiq4@bidmc.harvard.edu (S. Siddiqui).
1
These authors made equal contributions.
informed decisions, and the medical team often faces discordant opin-
ions regarding medical treatment among family members. Cultural
and psychosocial differences among stakeholders in the ICU as well as
region-specific legal implications add further complexity to the defini-
tion of goals of care [4]. As for objective outcome prediction (such as
one year mortality), recent evidence suggests that data obtained in
the acute care setting may not always provide good predictors of long-
term patient outcomes [2][,6].
In the United States, end-of-life decision making is primarily based
on the autonomous choice of the patient and subsequently the health
care proxy or the surrogate decision maker if the patient lacks mental
capacity. By contrast, in Europe and Australia physicians are often lead-
ing such decisions, taking into account patient's preferences and the
physicians' estimation of a patients' best interest [7]. Cultural and legal
factors influence the frequencies of different decisions, and the strength
of the different determinants of these decisions but they do not change
the essence of the decision making. Some of these challenges arise from
cognitive biases that physicians and families may knowingly or un-
knowingly perceive, and awareness of these biases can result in more
rational decision making [8]. (Table 1) Cognitive biases hamper critical
thinking and, as a result, the validity of our decisions [9].
This focused best practice article defines the various ethical, legal,
clinical and inter-professional challenges that arise in the care of ICU

https://doi.org/10.1016/j.jcrc.2020.08.029
0883-9441/© 2020 Elsevier Inc. All rights reserved.

Please cite this article as: S. Siddiqui, W.W. Zhang, K. Platzbecker, et al., Ethical, legal, and communication challenges in managing goals-of-care
discussions in chronically cr..., Journal of Critical Care, https://doi.org/10.1016/j.jcrc.2020.08.029
S. Siddiqui, W.W. Zhang, K. Platzbecker et al.
Table 1
Cognitive biases involved in decision making for chronically critically ill patients.
Common challenges in the care of Examples of cognitive biases
chronically critically ill patients possibly
at play in decision making
1 Chronic critical illness Confirmation bias, Loss aversion bias
2 Futility and prognostication Confirmation bias, Omission bias
3 Moral distress among caregivers Sunk cost bias, Loss aversion bias
4 Provider specific perspectives Confirmation bias
5 Surrogate decision maker Availability bias, Cognitive load bias
determination
6 Conflicts in the ICU All biases
Key: ‘confirmation bias’ (the tendency to interpret new evidence as confirmation of one's
existing beliefs or theories), ‘loss aversion bias’ (people's tendency to prefer avoiding
losses to acquiring equivalent gains), ‘omission bias’ (the tendency to favor an act of omis-
sion over one of commission, such as psychological inertia), ‘availability bias’ (the human
tendency to think that examples of things that come readily to mind are more representa-
tive than is actually the case), and the ‘sunk cost effect’ (the tendency for loss aversion),
‘cognitive load bias’ (decisions that result from how and when information is presented
to patients and families).
patients with chronic critical illness and suggests a framework for pro-
viding quality patient centered care. Literature used for evidence was
selected by using keywords and Pub med as well as Google scholar arti-
cles. All authors reviewed the papers in a non-systematic manner.
2. Challenges
2.1. Chronic critical illness
Patients with chronic critical illness are dependant on ventilatory or
circulatory support for weeks or months. The consequences of chronic
critical illness on patients' quality of life are often not in the main
focus [10]. There is a need for studies that capture baseline functional
status, frailty status and prehospital illness trajectory in order to de-
velop and validate prediction instruments of postoperative outcome in
patients with chronic critical illness [11-14]. Some tools that can be
used to assess the functional status or quality of life of ICU patients at
baseline can be FSS ICU or SF-36 [15,16].
2.2. Ethical implications: the complex meaning of ‘Futility’
Medical futility remains a subjectively defined term without objec-
tive parameters that a wide spectrum of critical care providers can easily
agree on. Studies reveal that these clinical outcomes are poorly under-
stood by family decision-makers for chronically critically ill patients
and even by physicians [17]. According to the American Medical Associ-
ation, the concept of medical futility “cannot be meaningfully defined”
[18], also because the conclusion of “futility” is often specialty specific,
based on prior experiences, and may change based on current technol-
ogy and resources available [19]. There may also be a shift in an individ-
ual's expectations in the course of their illness and their views on their
acceptable quality of life affected by pain and disability [20].
2.3. Moral distress among the ICU team members
Moral distress is the emotional state that arises from a situation
when a provider (ofte a nurse) feels that the ethically correct action to
take is different from what he or she is tasked with doing. Moral distress
is one of the contributing factors for clinical burnout syndrome, a feeling
of helplessness and depersonalization that typically develops in a highly
stressful and professionally committed environment [21]. This phenom-
enon is applicable and prevalent in the ICU when goals-of-care deci-
sions are made [22]. The incidence of moral distress among ICU staff
can be up to 25% and is higher in staff involved in end-of-life care and
2
Journal of Critical Care xxx (2020) xxx
those who witness patient suffering [23]. Moral distress can negatively
impact clear communication and committed decision making.
2.4. Provider specific perspectives
Multiple providers are involved in the care of ICU patients in a mul-
tidisciplinary team. These may include intensivists, surgeons, nurses,
pharmacists, anesthesiologists, and respiratory therapists, among
others. Fig. 2 illustrates the inverse relationship that the appreciation
or aspiration of professional performance outcomes has with emotional
investment by the various stakeholders in the ICU. Family members
have the highest emotional investment in the care and well-being of
their critically ill loved one [24]. In contrast, the hospital administration
may have understandably little emotional investment but are invested
in overall better safety and quality metrics and outcomes, such as short-
ened length of stay in the ICU, cost of care or shifting the patient out to
avoid ICU mortality [25].
2.4.1. Primaryphysicians
Surgeons are trained to take ownership of the patient and feel that
the ultimate outcome of the patient is their responsibility [26]. In con-
trast to ICU nurses and critical care physicians, surgeons often have lon-
gitudinal relationships with their patients and families that may inform
their decisions. There is often an unspoken contractual relationship
called surgical “buy-in”, by which the patient not only agrees to the sur-
gery itself, but the post-operative care dictated by the surgeon [27]. De-
spite their perceived ownership of the patient, there is much variability
in a surgeon's comfort level with critically ill patients [28]. A major com-
plication can lead to feelings of guilt, crisis of confidence, anxiety, or
anger in a surgeon, which may hve effects on not only the surgeon but
those around him including patients, coworkers, and the healthcare
structure [29].
2.4.2. ICU attendings
In contrast to long term physicians, critical care physicians may not
have the same longitudinal relationship with families of ICU patients.
Critical Care Physicians spend a higher fraction of their pprofessional
working hours with the critically ill patient and with ICU nurses,
compared with surgeonz. Despite not knowing their patients
pre-morbidly, they can be deeply involved and invested in the care
and family dynamics of a dying patient [30].
2.4.3. Family (health care surrogate)
Prolonged ICU care causes stress on the patient's family members
[31]. Family members of both surviving and non-surviving ICU patients
often develop acute cognitive, psychologic, and physical problems
[32,33]. There is a large variability in the degree of involvement by
family members and health-care proxies [34].
2.4.4. Nursing
ICU nurses have a central role in the orchestration of goals-of-care
discussions in the ICU, since they spend long time at the bedside, and
often develop a strong emotional connection with patients and their
families [35]. Many ICU nurses see themselves as the patient's cham-
pion, advocating for their best interests within the healthcare system
[36]. Due to their close relationship with the patient and patient's
family, nurses are prone to burnout when taking care of a chronic ICU
patient [37].
2.5. Legal implications in goal setting at the end-of-life
To date, there is no clear legal consensus in the United States regard-
ing decision-making authority during end-of-life care conflicts regard-
ing the goals of care. Health care providers may be accused by
patients' legal representatives of patient abandonment when making
unilateral decisions to change the goals of care from cure to comfort.
S. Siddiqui, W.W. Zhang, K. Platzbecker et al. Journal of Critical Care xxx (2020) xxx

Fig. 1. Algorithm for identifying surrogate medical decision-maker. Adopted from Beth Israel Deaconess Medical Center (BIDMC) algorithm for surrogate decision-making, this diagram
describes the process of establishing mental capacity and finding a suitable decision-making proxy in the absence of mental capacity.

3
S. Siddiqui, W.W. Zhang, K. Platzbecker et al.
CRICO data shows that in 31% of cases there is a communication break-
down between various providers when goals are set for patient care.
In clinical scenarios where the clinical team unilaterally changes the
goals of care based on their conclusion "futility" the primary func-
tion of a court is to ensure that the rights of the incompetent are
exercised properly [39]. In the execution of its duty, the judge, act-
ing on behalf of the state, is tasked with determining the patient's
requirement for protection of the court and what care would be in
that patient's best interest if they do need protection. However,
the courts rely on the providers' best judgements where medical fu-
tility is concerned – so the courts' decisions are subjective. Some
argue that courts do not have the capabilities to fully grasp the com-
plexities of futility cases. Thus far, there still lacks universal guid-
ance regarding the clinician's authority regarding end-of-life
decisions from a legal perspective [40]. In an attempt to alleviate
controversy, certain hospitals have instituted formal protocols for
complex end-of-life decision-making.
2.6. Surrogate decision-maker determination
Only 25% of patients admitted to the ICU have decision- making ca-
pacity during the first 2 days of their ICU stay [41]. Thus, it is useful for
hospitals to have a defined process for recognizing surrogate
decision-makers in order to minimize confusion, such as the one
in Fig. 1. If a patient does not have capacity to make informed deci-
sions and is not able to identify a surrogate decision-maker through
completion of a health care proxy, then most states designate by law
or regulation a hierarchy of legally recognized surrogate decision-
makers. Such hierarchies typically rely on the next-of-kin– for ex-
ample, spouse, adult children, parent(s), sibling(s), in that order.
Even in the presence of health care proxies, data have shown that
there may not be concordance with patients' preferences and per-
sonal choices [42]. Cognitive load can bias the eventual decision
made by the family if the information imparted is too much to as-
similate in one go. In this case the families revert to previously
held beliefs and decisions, irrespective of what has been explained
by the healthcare providers [43].
2.7. Conflicts in the ICU
More than 70% of clinical staff experience conflict in the ICU on a
weekly basis, with over 50% experiencing severe conflict [44]. The con-
cept of conflicts causing multiple moral ‘injuries’ on the psychological
health of staff seems to be a precursor to burnout [45]. ICU conflicts
are often centered around end-of-life decision-making and poor
Fig. 2. Stereotypes of stakeholder-dependent and potentially competing views regarding
patients' goals of care in the intensive care unit. Fig. 2 illustrates the inverse relationship
that the appreciation or aspiration of professional performance outcomes has with
emotional investment by the various stakeholders in the ICU. For example, surgeons
may focus on professional outcome measures such as 30-day mortality. It may be
challenging to address the emotional implications of these decisions on the emotial
status of patients' families.
4
Journal of Critical Care xxx (2020) xxx
interprofessional communication [46,47] in a scenario of unclear
decision-making hierarchy [44]. There might be a correlation between
time spent at the bedside with the chronically critically ill patient and
the desire to direct care towards patient comfort over cure.
A recent qualitative study conducted in European ICUs demon-
strated that conflicts in intensive care units resulted in less patient-
centered and timely care delivered. Conflicts arising within teams led
to reduced quality of care, using the dimensions of care proposed
by the Institute of Medicine Committee on Quality of Health Care
in America (safety, effectiveness, patient-centeredness, timeliness,
efficiency, and equity) [49]. These conflicts can occur within the
same hierarchal levels, or between different ones. The authors con-
cluded that a greater understanding of such conflicts is needed in
quality management of ICU patients [50]. This may lead to conflict
in opinions further downstream if the trajectory of the patient
turns negative.
3. Methods of resolution
3.1. Effective communication and collaboration
3.1.1. Integrative approach for successful interprofessional communication
ICU physicians often takes the lead in the orchestration of goals-of-
care discussions, but successful implementation of a plan requires
buy-in from all team members involved. Personal animosities, mistrust,
and failures in communication need to be overcome in a structured
communication process [51]. Unfortunately, even physicians and
other team members with the best of intentions may not be aware of
the varying perspectives on their team as team members may not feel
comfortable speaking up with differing opinions. Training on
perspective-sharing, speaking up, leader inclusiveness behaviors and
promoting psychological resilience is generally lacking [52]. One inter-
vention that promotes an inclusive, “we're on the same team” attitude,
is reminding of a “Basic Assumption,” such as “we believe that everyone
on this team is intelligent, capable, and wants to provide the best possi-
ble care for our patients and families” [53].
3.1.2. Semantics matter
All providers need to employ accurate, precise, and non-
confrontational language, in order to avoid and resolve interprofes-
sional conflict. The term “futile” should be avoided whenever possible
and replacing it with “potentially inappropriate” when discussing treat-
ment plans that are unlikely to affect the patient's overall prognosis and
thus, is ethically questionable [34].
3.1.3. Advocate for your cause, keep an open mind, and invite other
perspectives
Health professionals are encouraged to “communicate and advo-
cate for the treatment plan they believe is appropriate”. Meetings
regarding treatment plan or goals of care should be done with mu-
tual respect and should occur at regular intervals. Each team should
have a representative at such a meeting. If a family meeting is
planned, a pre-briefing should occur in advance, so that a uniform
message is given to the health-care decision-makers [55]. Timely
communication can help resolve budding tensions which can lead
to conflicts [56]. (See Fig. 3).
3.1.4. Physicians of different specialties sharing care of a patient
Ideally, the physicians will be able to have an honest, open conversa-
tion about their emotions related to the ongoing care of the patient and
share how decision making is affecting them as well as competing inter-
ests of wanting to avoid care that will not lead to a desirable outcome, a
sense of obligation to the patient or family, and wanting to avoid any
unnecessary suffering.
S. Siddiqui, W.W. Zhang, K. Platzbecker et al.
Fig. 3. Pre-goals-of-care discussion checklist. A simple checklist can equip caregivers with the necessary process of conducting complex discussions.
3.1.5. Have a conflict resolution process
If there is persistent disagreement despite best efforts at communi-
cation, a fair and unbiased process should be in place to settle such dis-
putes. Existing evidence suggests that most ICU disputes can be resolved
through ongoing communication or with the help of expert consultants,
such as ethics or palliative care consultants [57]. If the dispute is be-
tween a clinician and surrogate, notify the surrogate prior to
implementing the process of resolution, and make sure to implement
the decision once a consensus is made [34].
3.1.6. Cultural considerations
There is little known as to how to optimally conduct culturally sen-
sitive communication in the ICU. For example, the concept of ‘filial
piety’ (or respect for the elderly) [59] among some cultures may lead
to families of elderly ICU patients to continue demanding non-
beneficial life prolonging care [60]. Further studies of intervention
5
Journal of Critical Care xxx (2020) xxx
programs are necessary and evidence-based guidelines should be
established to inform culturally competent care in the ICU [61].
3.2. Successful and effective communication with patient, family and
healthcare proxy
3.2.1. Opening the discussion
When opening a meeting, it is common to ask the patient or family
to state their understanding of the condition. However, this may be a
daunting task, and can actually set the family on edge rather than estab-
lishing common ground. An alternative is to provide some simple
choices: ask if they would like for you as the clinician to provide a
brief summary, or if they would like to articulate their current under-
standing and their most pressing questions. If they choose the clinician
summary, use the opportunity to not just summarize, but also check for
understanding frequently.
S. Siddiqui, W.W. Zhang, K. Platzbecker et al.
3.2.2. Explain illness in clear, simple terms
Even when care planning discussions take place in advance of a crit-
ical illness, patients and families often walk away with significant mis-
conceptions about the treatments offered. When questioned after an
outpatient care planning meeting, patients commonly describe a venti-
lator as a type of heart monitor and believe that patients on one are able
to talk [62]. Clinicians should avoid jargon, or if used, translate it in-line
with statements.
3.2.3. Don't talk too much
The patient or family should talk for at least 50% of the conversation.
Increased proportion of family speech has been shown to increase fam-
ily satisfaction and decrease the perception of conflict with the physi-
cian [63,64].
Non-verbal forms of expression, so long as they are safe, should also
be accepted and not taken as a personal affront [56]. Framing “frustrat-
ing” family behavior as one of many potential ways to show love and
support may allow the clinician to respond in a less defensive, more em-
pathetic way.
3.2.4. Allow opportunities for questions early
Longer opening monologues may lead to lower family satisfaction
[18]. This does not deprive clinicians of the opportunity to explain all
the information they feel is relevant, though it may alter the order and
pacing of its presentation to suit the family's needs.
3.2.5. Anticipate emotion and respond with empathy
It is common to respond to expressions of emotion with information,
or to miss an opportunity to support and respond with empathy [67].
Emotion is an opportunity to build trust and can be a window into
important concerns. Recognizing emotion and responding with
acknowledgement and validation allows people to feel heard and
supported, which creates an alliance, engenders honesty and more
collaboration [68].
3.2.6. Care for the family, as well as the patient
Current models of surrogate decision-making encourage the surro-
gate to decide as the patient would if they could speak for themselves
[69]. Acknowledging the difficulty of decision-making and of having a
loved one in the ICU are associated with increased family satisfaction,
as are statements that allay common fears, including that the patient
will be kept comfortable and not abandoned at the end of life [70,71].
Having laid the groundwork of clarifying patient's values will allow
the clinician to provide advice and reassurance.
3.2.7. Patient/family concerns
Team members should meet prior to the family meeting so that
there is consensus regarding the treatment plan (Fig. 3. Pre-Goals-of-
Care Discussion Checklist), as it is important to provide a unified and
consistent message for families during this turbulent and confusing
time. When addressing the family, effective communication is of the ut-
most importance. The healthcare team should use nonmedical lan-
guage, address family's questions and concerns, and be sensitive to the
needs of the family.
4. Conclusion
This article provides a framework for managing conflict in the or-
chestration of goals of care discussion in patients with chronic critical
illness. We encourage clinical teams to discuss the tools we provide at
their interprofessional critical care provider meetings.
Financial disclosures
None.
6
Journal of Critical Care xxx (2020) xxx
Author contributions
S. Siddiqui: This author helped with investigation, writing - origial
draft, review & editing; validation, and visualization.
W.W. Zhang: This author with conceptulization, investigation, writ-
ing - origial draft, review & editing; validation; visualization.
K. Platzbecker: This author helped with investigation, writing -
origial draft, review & editing; validation, and visualization.
M.J. Douglas: This author helped with investigation, writing - origial
draft, review & editing; validation, and visualization.
L.K. Rock: This author helped with investigation, writing - origial
draft, review & editing; validation, and visualization.
M. Eikermann: This author with conceptuliztion, investigation,
writing - origial draft, review & editing; validation; visualization. He is
the guarantor of the study who takes responsibility for all parts. All au-
thors discussed the recommendations provided and commented on the
manuscript.
Declaration of Competing Interest
None.
Acknowledgements
We wish to thank David N. Sontag JD for his help in giving a legal
perspective to the points raised in this paper.
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