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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 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

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 nurse-

patient relationship shifts to nurse-family relationship (Hupcey, 1998). The intimate

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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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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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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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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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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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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 multi-

layered 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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(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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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 cross-

cultural 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, Ananeh-

Firempong, 2003).

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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 end-

of-life experience for patients and families in the ICU (Hupcey, 1998. Sumpter &

Carthon, 2011).

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References

Betancourt, J., Green, A., Carrillo, J., & Ananeh-Firempong, O. (2003). Defining

cultural competence: A practical framework for addressing racial/ethnic

disparities in health and health care. Public Health Reports, 118, 293-302.

Beckstrand, R., Clark Callister, L., & Kirchoff, K. (2006). Providing a "good death":

Critical care nurses' suggestions for improving end-of-life care. American

Journal of Critical Care, 15(1), 38-45.

Beckstrand, R. & Kirchoff, K. (2005). Providing end-of-life care to patients: Critical

care nurses' perceived obstacles and supportive behaviors. American Journal

of Critical Care, 14(5), 395-403.

Bülow, H., Sprung, C., Baras, M., Carmel, S., Svantesson, M., Benbenishty, J., ... Nalos,

D. (2012). Are religion and religiosity important to end-of-life decisions and

patient autonomy in the ICU? The Ethicatt study. Intensive Care Medicine, 38,

1126-1133.

Dutta, M., Jones, C., Borron, A., Anaele, A., Goa, H., & Kandukuri, S. (2013). Voices of

Hunger: A Culture-Centered Approach to Addressing Food Insecurity. In

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Reducing Health Disparities: Communication Interventions (Vol. 6, pp. 479-

495). New York: Peter Lang.

Fitchett, G. & Handzo, G. (1998). Spiritual assessment, screening, and intervention

in: Holland JC ed, Psycho-oncology. New York, NY. Oxford Press University,

790-808.

Gazmararian, J., Curran, J., Parker, R., Bernhardt, J., & Debuono, B. (2005). Public

Health Literacy In America An Ethical Imperative. American Journal of

Preventive Medicine, 28(3), 317-322.

Hermann, C. (2001). Spiritual needs of dying patients: a qualitative study. Oncology

Nursing Forum, 28(1), 67-72.

Hinkle, L., Bosslet, G., & Torke, A. (2015). Factors Associated With Family

Satisfaction With End-of-Life Care in the ICU. CHEST, 147(1), 82-93.

Hupcey, J. (1998). Establishing the nurse-family relationship in the intensive care

unit. Western Journal of Nursing Research, 20(2), 180-194.

Hupcey, J. (2000). Feeling Safe: The Psychosocial Needs of ICU Patients. Journal of

Nursing Scholarship, 361-367.

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Nelson, A. (2002). Unequal Treatment: Confronting Racial and Ethnic Disparities in

Health Care. Journal of the National Medical Association. 94(8).

Sprung, C., Maia, P., Bulow, H., Ricou, B., Armaganidis, A., Baras, M., ... Thijs, L. (2007).

The Importance Of Religious Affiliation And Culture On End-of-life Decisions

In European Intensive Care Units. Intensive Care Medicine, 33, 1732-1739.

Sumpter, D., & Carthon, J. (2011). Lost in Translation: Student Perceptions of

Cultural Competence in Undergraduate and Graduate Nursing Curricula.

Journal of Professional Nursing, 27, 43-49.

Wall, R., Engelberg, R., Gries, C., Glavan, B., & Curtis, J. (2007). Spiritual Care Of

Families In The Intensive Care Unit*. Critical Care Medicine, 35(4), 1084-

1090.

Wulff, D. (1997) Psychology of Religion: Classic and Contemporary. New York, NY;

John Wiley & Sons.

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