Literature Review: End-of-Life Care in the ICU: The Impact of Nursing Care on
the Spiritual and Religious Needs of Patients and Families
Kristi Bruno
DePaul University
March 13, 2015
Literature Review: End-of-Life Care in the ICU: The Impact of Nursing Care on the Spiritual and Religious Needs of
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Patients and Families
Time spent in the Intensive Care Unit (ICU) can be a stressful, emotionally
draining, and often-traumatic experience for both patients and families. Patients are
often unable to communicate independently due to patient sedation, intubation, or
respiratory ventilation (Hupcey, 1998), and families are forced to provide surrogate
decision making on the patient’s behalf. Families may also be put in a position to
make end-of-life decisions on the patient’s behalf—sometimes without expressly
knowing the patient’s desires due to lack of end-of-life planning and documentation
(Wall, Engelberg, Gries, Glavan & Curtis, 2007). This gray area causes distress and
potential disagreement for families.
Many families are in need of spiritual and religious support during these
stressful times and religion plays a large role in decision-making and the end-of-life.
Research has shown that many clinicians undervalue or are not prepared to support
the religious and spiritual needs of an ICU patient’s family (Wall, et al., 2007). The
literature has also revealed that religious beliefs of the healthcare team, namely
physicians, can cloud the decisions made around the care of the patient.
Nurses play a unique role in the care of an ICU patient, as he or she may be
providing around-the-clock care of the patient who is in critical condition. With
limited ability to communicate directly with the patient, the focus from nursepatient relationship shifts to nurse-family relationship (Hupcey, 1998). The intimate
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Literature Review: End-of-Life Care in the ICU: The Impact of Nursing Care on the Spiritual and Religious Needs of
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Patients and Families
relationship that evolves between the patient, family, and nurse holds a great deal of
potential to meet the unmet spiritual and religious needs of families of ICU patients.
Spirituality and Religion
The terms spirituality and religion are often used interchangeably, but have
inherently different meanings. “Religion has been associated with various
connotations: the totality of belief systems, an inner piety or disposition, an abstract
system of ideas, and ritual practices” (Wulff, 1997). Spiritualty can be a component
of religion, but can also stand alone. A widely accepted definition of spirituality in
the healthcare setting interprets spirituality as “constructs of meaning or a sense of
life’s purpose” (Fitchett & Handzo, 1998). Both the religious and spiritual beliefs of
the patient and clinician can impact end-of-life decisions and care.
Much research has been conducted about the role of religion of the clinician,
as well as the role of religion in the patient and family. Bülow and colleagues
explored clinician religion, end-of-life decisions, and patient autonomy in the ICU.
This study found that many healthcare professionals desired less treatment than
patients and family members. They also found that religious affiliation of the
clinician did impact the beliefs around life-prolonging treatment and euthanasia
(Bülow, et al, 2012). These religious beliefs may unintentionally impact the care the
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Literature Review: End-of-Life Care in the ICU: The Impact of Nursing Care on the Spiritual and Religious Needs of
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Patients and Families
patient receives, which may or may not align with the patient’s religious beliefs
(Sprung, et al, 2007).
In a 2012 editorial, Dee W. Ford notes that in general, religious individuals
choose more aggressive ICU care, and use of a faith-based psychological coping
mechanism led patients to increase the use of ICU therapies prior to death.
Interestingly, religious ICU patients and families reported more optimism in the face
of critical illness in the ICU, and felt treatments would be more effective. Being
active in a religious organization often led to more community and family support
during times of illness, which often equated to more aggressive care (Ford, 2012).
Care teams for ICU patients ideally contain a chaplain, pastor or other social
worker trained to help address the spiritual needs of patients. While clinicians are
not obligated to provide spiritual or religious care to patients and families, they do
hold the responsility of providing a spiritual assessment of the patient and potential
referral to another team member specially trained to give spiritual care (Sulmasy,
2002). Wall and colleagues conducted a cross-sectional study which surveyed
families of patients who had died in the ICU or who had died within 24 hours of
discharge and asked them to rate several factors including overall satisfaction with
the ICU care their loved ones received, but also their satisfaction with spiritual care.
Family members were more likely to rate their spiritual care positively, as opposed
to leaving the question blank, if a pastor or spiritual advisor was involved in the last
24 hours of the patient’s life. Family members who were more satisfied with their
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Patients and Families
spiritual care also rated their overall satisfaction with the ICU care at a higher level
(Wall, et al., 2007).
A gap in the literature exists in the area of best practices in end-of-life care
and spiritualty of patients in the ICU. Many studies give great detail around the care
of patients and families in a hospital or hospice setting, but there may be less
evidence due to the unique paths and shorter duration of stay of ICU patients at the
end of life. Much of the focus of the care team focuses on life-sustaining treatments
and many spiritual needs may be perceived as less important and go unmet (Wall, et
al, 2007).
Unique Role of ICU Nurses
As nurse-patient relationships shift to nurse-family relationships in the ICU,
nurses begin to provide care to the patient with most directives coming from
surrogate decision-making family members. Throughout this delicately balanced
time comes a give and take between nurses and families. Nurses encounter several
obstacles in treating patients including serving as a main connection for family
members who are calling the ICU phone line for updates on loved ones, which in
turn takes away from time to care for the patient, families misunderstanding the
term “life-saving measures,” and physician disagreement about the treatment plan
for the patient (Beckstrand & Kirchoff, 2005).
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Literature Review: End-of-Life Care in the ICU: The Impact of Nursing Care on the Spiritual and Religious Needs of
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Patients and Families
Families operating under a great deal of stress often develop coping
mechanisms for managing the nurse-family relationship. Some mechanisms are
positive such as determining, by observation, if the nurse is a “good” nurse or not,
making overtures, and displaying trust. Nurses were found to build family
relationships by demonstrating commitment to the patient and family, getting to
know the family and patient, being involved with the care of the patient, and
breaking rules such as visiting hours or number of visitors allowed. Hupcey also
found that “by virtue of the ICU situation, most families attempted to develop a
relationship with the nurses because they felt that it would help the patient.”
(Hupcey, 1998). Having this knowledge and understanding this perspective can help
the nurse to build trust with the patient and family.
Additional research also indicated the actions of nurses were strongly
associated with a patient feeling safe, hopeful and peaceful (Hupcey, 2000).
Beckstrand and Kirchoff found that many of the most highly scored supportive
behaviors in ICU care were actions the nursing team was able to directly impact,
including allowing families adequate time with the patient after death, providing a
dignified scene around the time of death, and teaching patients’ families how to
behave around a dying patient (Beckstrand & Kirchoff, 2005).
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Literature Review: End-of-Life Care in the ICU: The Impact of Nursing Care on the Spiritual and Religious Needs of
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Patients and Families
In a study by Beckstrand and colleagues, critical care nurses were surveyed
on end-of-life care and the idea of providing a “good death” surfaced repeatedly.
Nurses felt a good death included the patient having his or her dignity in tact at the
time of death, peace, not being alone at death, pain management, avoiding futile
care, communication, and respecting the wishes of the dying patient (Beckstrand, et
al, 2006). Several of these elements address the patient as a whole being, and focus
less on standard medical approaches as the patient neared the end of life (Sulmasy,
2002).
Discussion
Several themes existed throughout the literature including the need for
additional end-of-life support for patients and families. Families expressed interest
and need for more focus on religious and spiritual needs. Much of the research
points to the potential role nurses could play in this critical element of end-of-life
care. There is also a place for critical health literacy, confrontation of disparities, and
culture-centered approach to improve the end-of-life experience.
Families noted important factors in the care of a loved one included shared
decision making, family meetings and inclusion in rounding on patients the medical
team, and allowing family to be present at the time of death. (Hinkle, Bosslet &
Torke, 2015). In a study of the spiritual needs of dying patients, families and
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Literature Review: End-of-Life Care in the ICU: The Impact of Nursing Care on the Spiritual and Religious Needs of
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Patients and Families
patients also noted several strategies to address spiritual care and the end of life.
Those strategies include arrangement of patient rooms so patients are able to view
outdoors, providing time and space for religious practice, and shared decision
making (Hermann, 2001). These tasks could be directly managed and implemented
by a patient’s nursing team.
It should be noted that several instances in the literature alluded to
challenges in providing good end-of-life care. Recurring themes include lack of time
to complete detailed end-of-life tasks, staffing patterns, lack of individual care at the
time of death, communication challenges, treatment decisions based on the opinions
and beliefs of the physician rather than the patient, and more experienced nurses
being pulled from dying patients to more clinically-complicated patients
(Beckstrand, Clark, Callister & Kerchoff, 2006). Hospital administrators and critical
care leaders should pay special attentions to these issues. While they are multilayered and often hard to solve, awareness of the issues and forums to address the
problems should be made available.
Health literacy could also play a part in improving the patient and family
experience of end-of-life care in the ICU. The literature referenced the use of futile
care as one of the barriers to providing good end-of-life care, and individuals with
deeply religious views were more likely to engage in unfounded futile care. Public
health literacy can inform, educate, and empower people about health issues
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Literature Review: End-of-Life Care in the ICU: The Impact of Nursing Care on the Spiritual and Religious Needs of
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Patients and Families
(Gazmararian, Curran, Parker, Bernhardt & DeBuono) and perhaps provide
perspective on the potential downfalls of employing futile care in the ICU while still
being sensitive to the spiritual and religious views of the patient.
As clinicians work to provide the best care possible, it should also be noted
that religious disparities such as the role of bias, discrimination, and stereotyping by
providers, patients, institutions, and health systems (Nelson, 2002) be
acknowledged and worked through by the care team. Just as racial and ethnic
disparities exist, as our country becomes more and more diverse, it will be
important for clinicians to be aware of and responsive to the spiritual and religious
needs of a diverse patient base. There may also be more opportunities, outside
methods already employed, such as family surveys after ICU care, to engage families
of patients who passed away in the ICU in a culture-centered approach. By involving
these families, solutions may be found at several levels that can impact the care of
patients and families in the future (Dutta, Jones, Borron, Anaele, Gao & Kandukuri,
2013).
Conclusion
The literature has revealed that spiritual and religious care are an integral
part of end-of-life care, and it is not clear that there is any kind of wide spread
protocol or method of providing this type of care within an ICU setting. There is also
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Literature Review: End-of-Life Care in the ICU: The Impact of Nursing Care on the Spiritual and Religious Needs of
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Patients and Families
a distinct gap within the research outlining the spiritual and religious needs of
patients and families in the ICU, likely due to the varied and quickly deteriorating
path of individual patients. Research in the area of meeting the needs of dying
patients in a hospital or hospice setting are available, but the literature is lacking in
the area of ICU spiritual and religious care.
Research suggests that nurses may play a key role in ensuring patients and
families receive the care they need. Barriers exist in time, resources, and expertise
to ensure good care. Training of the entire medical team is needed, and clear
communication and action plans presented both verbally and in written form are
needed for successful implementation. Nurse leaders may play a key role in
managing this care within the ICU, and there may be a role for further study and
recommendations from thought leaders from organizations such as the Association
of Critical-Care Nurses and other organizations providing end-of-life care in the ICU.
Proper spiritual and religious care should be a major focus of healthcare systems,
and these systems should strive for a high level of cultural competence.
“Culturally competent health care system—one that acknowledges and
incorporates—at all levels—the importance of culture, assessment of crosscultural relations, vigilance toward the dynamics that result from cultural
differences, expansion of cultural knowledge, and adaptation of services to
meet culturally unique needs” (Betancourt, Green, Carrillo, AnanehFirempong, 2003).
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Patients and Families
Additionally, as suggested by both Sumpter and Carthon, and Hupcey, simply
raising awareness of desired behaviors and actions of the healthcare team, and
providing a forum for discussion and analysis might be a good place to begin.
Heightened awareness could significantly improve the spiritual and religious endof-life experience for patients and families in the ICU (Hupcey, 1998. Sumpter &
Carthon, 2011).
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Patients and Families
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