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End-of-life care in the ICU: Supporting nurses to

provide high-quality care


By Sarah Crowe, MN, RN, CNCC(C)

Abstract
ICU care has traditionally focused on curative treatment, but making the decision to withdraw life-sustaining therapies, the
there is an increasing awareness of the key role palliative and barriers to providing good end-of-life care, factors that support
comfort care play. Through a review of recent literature on end- good end-of-life care, and specific guidelines for the withdrawal
of-life care and withdrawal of life-sustaining therapies in the of life-sustaining therapies. Using this information, a checklist to
intensive care unit, four themes have emerged: the challenges of support end-of-life care by critical care nurses was created.

Crowe, S. (2017). End-of-life care in the ICU: Supporting nurses to provide high–quality care. Canadian Journal of Critical Care Nursing, 28(1), 30–33.

T
raditional goals of intensive care unit (ICU) care centre
on curative interventions for patients with life-threaten-
Themes
On review of the literature, four general themes emerged: the
ing illnesses. Although some patients will fully recover,
challenges of making the decision to withdraw life-sustaining
many will not. Many conditions are not curable; some patients
therapies, the barriers to providing good end-of-life care, fac-
will have chronic care needs and some will die. As a general esti-
tors that support good end-of-life care, and specific guidelines
mate, approximately 20% of hospital deaths occur in ICU (Grant
for the withdrawal of life-sustaining therapies.
et al., 2013; Mirel & Hartjes, 2013). Critical care is, therefore, an
environment that supports cure and cares for the dying. In its Challenges. Challenges associated with making the decision
most narrow interpretation, palliative care is seen as the prac- to withdraw life-sustaining therapies were seen as a major
tice of preventing/relieving pain and suffering for those at end theme throughout the literature review. These challenges were
of life (Attia, Abd-Elaziz, & Kandeel, 2012). Although this is a often caused by a variety of factors including lack of agreement
central focus, the practice of palliative care includes approaches among the multidisciplinary team (Efstathiou & Clifford, 2011;
that address the quality of life for those facing life-threatening Iglesia, Pascual, & Becerro de Bengoa Vallejo, 2013; Jensen,
and life-limiting illnesses. Palliative care emphasizes the preven- Ammentorp, Johannessen, & Ording, 2013; Seaman, 2013).
tion and control of pain and other symptoms, while attending In particular, nurses who had the most intimate knowledge
to the patient and family’s psychological, social, and spiritual of patients and their families’ suffering were more likely to be
needs (Attia et al., 2012). As such, palliative care is increas- the first to deem treatment as futile and advocate for a change
ingly accepted as an integral component of comprehensive ICU to comfort care (Jensen et al., 2013). Nurses also found deci-
care for all critically ill patients, including those pursuing cure sion-making challenging when physicians were focused only
or every reasonable treatment to prolong life (Adolph, Frier, on mortality and morbidity, whereas they were concerned with
Stawicki, Gerlach, & Papadimos, 2011; Canadian Association quality of life, the potential for the patient to return to his/her
of Critical Care Nurses, 2011; Truog et al., 2008). The goals of previous state, and the suffering experienced by the patient
palliative and critical care are in accordance and, thus, compli- and family (Coombs, Addington-Hall, & Long-Sutehall, 2012;
mentary of each other. The purpose of this paper is to examine Stacy, 2012; Wilkinson & Truog, 2013). Another factor influ-
recent relevant literature for the purpose of developing and cre- encing the challenge of end-of-life decision-making was family
ating support for ICU nursing practice for the withdrawal of disagreement, either among themselves or with the multidisci-
life-sustaining therapies and end-of-life care. plinary team (Iglesia et al., 2013).
Barriers. The barriers to providing good end-of-life care were
Method well documented throughout the literature. The perceived bar-
A literature search was conducted using the key words: with-
riers to end-of-life care included the environment. This was
drawal of life support, terminal weaning from mechanical
described as the nurses’ workload, the physical layout of the
ventilation, end of life, and palliative care. The search was orig-
ICU, visiting restrictions, physically painful procedures/inter-
inally limited to the past three years, but was later expanded to
ventions, and the presence of technology and noise (Attia et
include several articles within the last 10 years. Articles were
al., 2012; Iglesia et al, 2013; Nelson, 2006; Nelson et al., 2006).
limited to those written in English. The databases CINAHL,
Nurses’ lack of education and training and, therefore, their lack of
Medline, OVID, and Biomedical Reference Collection were
comfort in providing palliative care was seen as another barrier to
used for these searches. One hundred and nineteen articles
good end-of-life care (Attia et al., 2012; Velarde-Garcia, Pulido-
were found to have met the above criteria, and were reviewed;
Mendoza, Moro-Tejedor, Cachon-Perez, & Palacios-Cena, 2016).
of these articles, 21 provided in-depth information on the actual
Not knowing the patient’s preferences or wishes regarding his/her
hands-on process of withdrawal of life-sustaining therapies.
care and treatment also created an obstacle for staff to provide
The articles were examined for major themes, current recom-
quality end-of-life care (Attia et al., 2012; Wiegand, Grant, Cheon
mendations, current practices, and nursing recommendations.

30 The Canadian Journal of Critical Care Nursing • Canadian Association of Critical Care Nurses
& Gergis, 2013). Two articles also listed physicians as a barrier substitute decision makers. There were also a number of recom-
to end-of-life care, whether due to being evasive and avoiding mendations for what constituted good end-of-life care and what
families, failure to allow patients to die from a terminal disease were perceived as barriers.
process, or due to general attitudes surrounding death and dying
With this in mind, the following are recommendations for the
(Attia et al., 2012; Iglesia et al., 2013).
support of nursing practice in the critical care environment to
Support. Factors that supported the staff ’s ability to provide assist bedside nurses in the withdrawal of life-sustaining therapies
excellent end-of-life care in the ICU were identified by several in ICU. To begin, considerations should be given to the facility’s
authors. These factors included effective open communica- palliative care program’s philosophy to ensure the ICU’s end-of-
tion, both within the multidisciplinary team and also with the life care policy is aligned with it (Mirel & Hartjes, 2013). Next,
patient and the family (Attia et al., 2012; Efstathiou & Clifford, guidelines or a framework under which the multidisciplinary
2011; Wiegand et al., 2013). Closely related to this is the use of team will conduct family/patient meetings should be determined
a family-centred care model and family involvement in clini- in order to facilitate effective communication and shared deci-
cal decision-making (Efstathiou & Clifford, 2011; Truog et al., sion-making (Truog et al., 2008). Using a framework ensures
2008; Wiegand et al., 2013). Nurses’ ability to draw on previ- patient and family involvement in decision-making, including
ous experiences and their ability to support one another were providing an opportunity for questions and time for reflection
also recognized as a positive factor to provide quality end-of- (Velarde-Garcia et al., 2016). On determination and consensus
life care in the ICU (Attia et al., 2012). The ability to provide of the choice to change the goal of care from curative to comfort,
care that aligned with the patient’s wishes, and ensured comfort a checklist to guide the bedside nurse through the withdrawal of
and dignity were also recognized as factors that supported good life-sustaining therapies should be implemented (see Table 1).
end-of-life care (Penrod et al., 2012).
The checklist provides a framework for the bedside ICU nurse
Guidelines. The final theme recognized in the literature was the to ensure proper process, and consistent care is provided to all
specific guidelines for the withdrawal of life-sustaining therapies. patients and families at end of life. The guideline is broken down
Many articles stressed the importance of providing the patient into sections, and while these sections may have already been
with comfort. A few authors provided generalities about using completed by the team, serve as an important reminder to ensure
opioids and sedatives as a way of achieving comfort (Rocker & a thorough procedure and attention to detail to ensure a smooth
Dunbar, 2000; Spinello, 2011; Stacy, 2012; Truog et al., 2008). The transition from curative to comfort care. The first section, labelled
concept of the actual physical withdrawal of life-sustaining ther- decision-making, is made up of questions that reflect the process
apies was hinted at, but there were no resources documented in of making the decision to withdraw life-sustaining therapies and
the literature that would help guide an ICU nurse through the move to comfort care. The questions serve as cues to ensure all
process of providing end-of-life care (Schimmer et al., 2012). relevant information is considered when planning the goals of
Although the practice of providing end-of-life care in the ICU care (Wiegand et al., 2013). Relevant information includes being
setting is becoming more prevalent, new ICU nurses or units that aware of patient and family directives, ensuring all necessary fam-
do not frequently engage in end-of-life care involving the with- ily members are present and part of the decision-making process,
drawal of life-sustaining therapies may benefit from additional family are provided adequate time for questions and reflection,
resources to guide them through the process in order to promote as needed, and ensuring the multidisciplinary team is aware of
the best care possible to these patients. the intended plan as well (Attia et al., 2012; Coombs et al., 2012;
Jensen et al., 2013; Truog et al., 2008).
Discussion The second section of the checklist involves the preparation for
The literature is clear that in the evolving state of intensive care
the withdrawal of life-sustaining therapies. This section involves
medicine, palliative care now has a clearly defined role in the ICU.
ensuring the patient and family are aware of the plan and how
With advancements in technology people are living longer with
it will likely be implemented, and ensuring all necessary orders
more co-morbidities hence leading to the increased possibilities
and documentation are completed (e.g., resuscitation orders
of life-threatening and life-limiting illnesses/injuries in the ICU.
changed, end-of-life orders written). Communication is vital,
This has created a situation where some of the patients in ICU do
and is recognized as a fundamental aspect of providing good
not respond to treatment, or deteriorate despite restorative treat-
end-of-life care (Wiegand et al., 2013). It is important to note
ment, thus creating the need for withdrawal of life-sustaining
that once the plan has been developed it is up to the team, in
therapies in order to allow a natural, dignified death.
collaboration with the patient and family, to determine how
The purpose of this literature review was to gather current and when the process takes place, and to make adjustments
information in order to create support for nursing practice in or changes, as required (Attia et al., 2012; Coombs et al., 2012;
the critical care environment to assist bedside nurses in the Jensen et al., 2013; Truog et al., 2008). In addition to the med-
withdrawal of life-sustaining therapies. The literature overall ical plan and documentation, ensuring end-of-life choices,
was lacking in research that provided specific steps and inter- such as religious or spiritual support/services, family presence
ventions for this purpose. There is an abundance of literature or support requirements, and the option for organ donation
available to help guide practitioners in making the decision to after death are important options to offer the patient and fam-
withdraw life-sustaining therapies, including considerations ily (Accreditation Canada, 2015; Penrod et al., 2012; Rocker &
of ethical implications, and the involvement of families and Dunbar, 2000; Truog et al., 2008).

Volume 28, Number 1, Spring 2017 • www.caccn.ca 31


Table 1: ICU Withdrawal of Life-Sustaining Therapies Bedside Nursing Checklist
ICU Withdrawal of Life-Sustaining Therapies Checklist Yes/No Comments
Decision Making
1. Does the patient have a living will, an advance directive, enduring Power of Attorney for health issues?
If YES, is the proposed decision to withdraw or withhold life-sustaining therapies in accordance with the
available information?
2. Has a multidisciplinary team meeting occurred to discuss the plan for withdrawal of life-sustaining
therapies?
If YES, ensure meeting information is documented in the patient’s chart.
3. If the patient is able, has he/she been involved in the decision-making process?
4. If the patient is not capable, or is unconscious, has the next of kin/substitute decision-maker been involved
in the decision-making process?
5. Has a family meeting occurred? The family should be involved with the initial and ongoing decision-making.
Have follow-up meetings occurred with the family?
All meetings are documented in the health record by all professionals involved (e.g., physicians, nurse, and
social worker).
Preparation
6. Has the option of organ and/or tissue donation been offered to the family (including eye bank referrals)?
7. Has the physician communicated the plan of care to the family?
Orders are written, or a signed copy of the ICU Withdrawal of Life-Sustaining Therapies pre-printed orders is
on the patient’s chart.
Updated code status documentation is on the patient’s chart.
All members of the health care team involved in the patient’s care are aware of the change of care focus.
8. Has the family been offered spiritual or religious support? And, if yes, have the appropriate people been
notified?
9. Have family preferences with regard to presence during the withdrawal of life-sustaining therapies been
identified, documented, and planned for?
10. Have family requests for interdisciplinary supports (e.g., social worker) during the withdrawal of life-
sustaining therapies been identified, documented, and arranged?
11. Have the patient and/or family had the opportunity to speak with a spiritual resource person if requested?
Are there any specific religious/cultural practices or other special requests to be followed prior to, during, or at
the time of death?
Implementation
12. In preparation for the withdrawal of life-sustaining therapies please ensure:
1) If able, move the patient to a private room.
2) Ensure patient is clean and comfortable (allow family to participate in final care if desired)
3) Prepare the room. (Remove as much technology / equipment from the room as possible; ensure adequate
chairs for family members; ensure tissues available to family; dim lights)
4) Turn off bedside cardiac and ventilator monitor alarms (either remove entirely or change to central
monitoring only)
5) Allow for special requests (e.g., favourite blanket to be placed on patient, music, etc…)
13. Have all comfort measures been implemented?
Have all other non-comfort treatments been discontinued?
14. During the withdrawal of life-sustaining therapies, the nurse will frequently monitor the patient for signs
and symptoms of distress (pain, anxiety, or other), and adjust medications accordingly. Document in the
nurses’ notes.
During the withdrawal of life-sustaining therapies the nurse will communicate frequently with family members
present to ensure their comfort, and their perceived comfort of the patient, and respond accordingly.

32 The Canadian Journal of Critical Care Nursing • Canadian Association of Critical Care Nurses
The final section of the checklist provides direction for the the ethics behind providing care and comfort versus eutha-
actual implementation of the withdrawal of life-sustaining nasia (Velarde-Garcia et al., 2016).
therapies. These questions were designed to guide nurses to
Although the gaps present in the literature make it challenging
implement comfort measures in preparation for death, includ-
to develop guidelines, the gaps also serve as a potential for fur-
ing preparing the physical environment, discontinuing any/all
ther research. Recognition of the importance of palliative care in
interventions that do not provide comfort, and preparing any
the ICU is increasing, and with it the need for further nursing
additional comfort-related interventions (e.g., additional anal-
research in order to maintain the best possible evidence-based
gesia or sedatives) that are not already implemented (Iglesias
practice for our patients and their families during end-of-life care.
et al., 2013; Stacy, 2012; Truog et al., 2008). The final question
provides a reminder for nurses to frequently monitor and treat Although ICU care traditionally focuses on curative treatment,
the patient for any signs of discomfort to prevent pain or anxi- there is an increasing awareness of the key role palliative and
ety from escalating. comfort care play. Through this review and identifications of
themes, recommendations for the support of bedside nurses
Overall, this checklist serves as a guide to promote best practice
were made and a potential checklist to support the end-of-life
and includes recommendations from the available literature to
practice in critical care was created.
help guide the bedside nurse through preparation of the patient
and family, preparation of the environment, and the physical
withdrawal of life-sustaining therapies and implementation of
About the author
Sarah Crowe, MN, RN, CNCC(C), Clinical Nurse Specialist
comfort measures.
Critical Care, Fraser Health Authority
Nurses should also be educated and provided training on the
Address for correspondence: Sarah Crowe, c/o Surrey Memorial
importance of comfort and end-of-life care. This training
Hospital Admin., 13750 96th Avenue, Surrey, BC V3V 1Z2
should include how the administration of analgesics and sed-
atives relates to this, and also provide clear understanding of Email: sarah.crowe@fraserhealth.ca

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Volume 28, Number 1, Spring 2017 • www.caccn.ca 33


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