Crit Care Nurse 2005 Dec; 25(6): 20-26
Cover Article
CE Article
Intensive Spiritual Care
A Case Study
Tiesha D. Johnson, RN, BSN
Tiesha D. Johnson is a nurse with 9 years of clinical experience in acute care, critical care, adult emergency medicine, and pediatric emergency medicine. She recently founded a diversified healthcare consulting company, Lupine Creative Consulting, Inc, in Rochester, NY.
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* This article has been designated for CE credit. A closed-book, multiple-choice examination follows this article, which tests your knowledge of the following objectives:- Using the framework of Fitchett’s model, describe dimensions of spiritual assessment and their definitions
- Recognize key components and appropriate interventions for Edna and her family to support their spiritual case
- Describe lessons learned in the care of Edna and her family that positively affect future spiritual care provision of the Buddhist patient
When faced with the tragedy of a traumatic event or a serious illness, many people have strong religious beliefs, and they often display more outward signs of devotion than they did in everyday life. Beliefs and behaviors affect their experiences with healthcare—both positively and negatively. This pattern is especially important in the critical care setting, where time is often of the essence and the experience may mark the end of someone’s life.
As clinicians, we recognize the needs of patients and their families. In the critical care setting, the physiological need for urgent action and aggressive treatment often takes priority over other needs for healthcare providers, depending on the circumstance. At the same time, patients’ family members need to know that their emotional and spiritual needs are held in high regard and that dignity for their loved one will be preserved. It is important to prioritize both sets of needs concurrently. By doing so, we bridge the gap between providers and patients by including patients’ families as part of the health-care team in a manner that is holistic and supportive. The story of Edna, a 48-year-old Laotian woman, illustrates these points.
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Case Report
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I received a report from an anesthesiologist who was in the operating room preparing for admission of a patient to our intensive care unit; I was to receive the patient within an hour of that report. The anesthesiologist also provided a brief background. I learned that the patient and her family were from Laos and did not speak fluent English. I accepted that information with little further thought while making notes about her physical condition and thinking ahead about what I would need to prepare the room.
Edna had been traveling with her husband and son from another state to attend a Buddhist religious holiday gathering. I learned of their destination only much later. Edna had been in the back seat of the car; her husband was seated in front, and her son was driving. They were involved in an accident in which Edna was thrown from the back window of the car. Her husband and son sustained only minor injuries; Edna had a severe head injury that required an emergent craniotomy after a computed tomography scan showed a large intracranial hematoma. Extensive edema and widespread diffuse axonal injury of the bulk of the surrounding brain tissue were apparent.
Edna was in surgery for several hours while her family waited anxiously. It was difficult to prepare the family for what we knew would be a shocking sight during their first encounter with Edna postoperatively. Edna’s husband spoke no English, and although her son spoke some, the amount was not nearly enough for an actual dialogue. Without a translator present, we could not even know what language we needed to translate, and in the intensity of the moment, the hospital’s translation services were of no help.
In the operating room, the hematoma had been evacuated, an external ventricular drain had been placed, an intracranial pressure monitor had been placed, and a large piece of Edna’s skull had been removed and left open to prevent herniation. Although these steps were successful, posttraumatic complications and irreversible tissue damage led to a grave prognosis. When Edna’s family was allowed to see her, she was receiving mechanical ventilation, her head was bandaged, and her eyes were swollen shut. She had connections to monitors and several intravenous catheters, was not responding or moving except for occasional seizures, and was surrounded continuously by busy doctors, nurses, respiratory therapists, and other health-care workers who were trying to stabilize her physical condition.
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Biomedical Factors
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Severe head trauma caused by rapid deceleration and extreme direct force can lead to several serious complications. Skull fractures often produce localized hemorrhage, and shear forces applied to neuronal tissue may cause acute swelling of the brain itself. Signs associated with intracranial bleeding and edema of brain tissue include decorticate and decerebrate posturing, coma, hemiplegia, dilated or unreactive pupils, and respiratory irregularity. Compression of intracranial tissue can produce what is known as the Cushing phenomenon, in which blood pressure and pulse increase while respiratory rate decreases.1 Edna had all of these, both preoperatively and postoperatively; her chance of long-term functional survival was essentially zero.
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Edna’s Family and Loved Ones
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Until some English-speaking family members arrived at the hospital, it was almost impossible to inform anyone of Edna’s status and poor prognosis. The English-speaking family members who did arrive were not very fluent in the language and did not seem to entirely understand the information we were presenting to them. We attempted to obtain a translator, but we were unsuccessful during the 3 days that Edna spent in the intensive care unit: many of the staff had little experience using the translator service, so a very important intervention was delayed from the beginning.
Eventually, several additional members of Edna’s extended family and the religious community to which they were traveling arrived at the hospital. Despite our hopes, few of them spoke English with much fluency either. It was never clear to us which people were family members and which were religious leaders—or even if that distinction had the same meaning to them as it did to us.
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Cultural Differences
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In addition to stabilizing Edna’s physical condition, our focus was on informing her family members about her status and prognosis. When she was no longer responding to treatment and it was clear that she most likely would die soon, our priority became to discover the family’s wishes concerning her "code status." In some cultures, decisions about the plan of care for an individual are made by the community. Our hospital policy was to limit medical decision-making authority to actual family members if they were present or to individuals with legal documentation designating them a healthcare proxy. This individualistic approach to care is typical of our Western culture, and it created a potentially challenging conflict regarding legal distinctions between family, caretakers, and decision makers for patients from other cultural backgrounds.
From the medical perspective, we needed to be clear about how aggressive our interventions were to be. The ongoing language barrier and cultural differences created substantial tension and only intensified our need to handle the situation delicately if we were to preserve any chance of long-term emotional recovery for Edna’s family. As this consideration rose in priority, it became imperative that we educate ourselves about the family’s cultural background as much as possible. Our hospital is located in Rochester, NY, a city with a population of 219773 people.2 Racially, the city is predominately white and black; less than 3% of the population are Asian.2,3 The majority of the city’s residents observe a Judeo-Christian faith, although the city does have a Buddhist temple. The surrounding county consists of 735343 people, again with an Asian population of less than 3%.3 Edna and her family were a cultural challenge for all of us. I knew she was going to die and that this death was going to be handled differently from any other that I had experienced in my career as a nurse.
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A Difficult Process and an Impossible Decision
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Under the circumstances, it was impossible for Edna’s family to make any decision about whether cardiopulmonary resuscitation should be performed on Edna if her heart stopped beating. Many people of Asian cultures typically resist even talking about death.4–6 Edna’s family was aware of her poor condition in general, but we were not certain that they recognized the looming critical decision. We tried to explain the options to her husband with the help of family members, whose English was quite limited. When we asked family members to repeat to us in English what they had told Edna’s husband in Laotian, the information was often incorrect. The process was painstaking, frustrating, and frightening for everyone. Edna’s husband appeared resistant to the prospect of a do-not-resuscitate order, but it was difficult for us to know if he had a full understanding of the situation or of what such an order actually meant. I noticed that some family members had left and had returned to the hospital with a dress that Edna was to wear in case she died. One family member explained to me, "She should not ‘travel’ without clothing." I learned that modesty in Asian cultures, especially for women, is extremely important.4–6 I could not dress her then, but I did place the dress over her weakening body, under the bed sheet that was covering her. It became clear that Edna’s grave prognosis was apparent to some people in the group, whether or not we could explain the details.
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Changing Priorities
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Once I learned of the family’s Buddhist faith, I gathered as much general information as I could through short conversations with English-speaking family members and through a brief Internet search. On the basis of what I had learned, I tried, especially in the last moments of her life, to refrain from much physical contact with her, especially her head and shoulders, where, according to the Buddhist tradition and within Laotian culture, the spirit resides. One should not touch another’s head or shoulders, if possible.4,5 I also strove to create a quiet and peaceful environment by closing the doors to the room and encouraging the various healthcare providers to leave the room immediately after physical examinations and to converse about the case elsewhere. Creating a peaceful environment was something I tried to do for all my patients. This intervention was the one thing I was familiar with and could offer Edna’s family with confidence. Additionally, I tried to provide space for the family to place Buddhist statues and other important materials that they had brought to the hospital. In my experience, many family members bring in pictures and items that are important to either them or the patient and place the material around the room when the patient’s condition is serious. It occurred to me that this family was probably no different in that respect. Some family members seemed to know that Edna would not survive; others were clearly hoping, almost insisting, that she would. Either way, my job was to facilitate whatever they needed to do.
The time came when Edna’s condition deteriorated irreversibly despite all of our interventions. The cart for resuscitation was in the room, and the doctor checked to make sure the defibrillator was charged, drugs were prepared, and syringes were placed near the central intravenous catheter in Edna’s chest. Within minutes, Edna was going to require resuscitation, and we still had no do-not-resuscitate order. The family stood near Edna’s bed, and we surrounded her, ready to act. As her monitor showed evidence of premorbid bradycardia and we began to administer the first round of drugs, someone abruptly said, "Stop." I never knew who said it. Edna’s husband tearfully nodded in agreement. We paused and stepped away from the bed. Sighs of relief could be heard from a few of us. A few tears escaped my eyes; I was sad that this marked the end for Edna, yet relieved that we would not proceed with futile resuscitation because of a lack of understanding.
The end of our interventions marked the beginning of a new phase for Edna’s family. A young woman, speaking broken English and crying, approached me frantically and somehow conveyed her wish for white candles, some ribbon, and yellow flowers. I did not understand the meaning behind this request—but I did not question it. The expression on her face, the tone of her voice, and her overall sense of urgency made her plea my priority. I never learned the specific significance of these items. In many Laotian cultures, strings and amulets have important connections to the spirit. Perhaps the requested items were needed for a variation of such traditions.5,7
We scoured the unit for those 3 items. Finding artificial yellow daisies in another patient’s flower arrangement, we asked if we could cut 3 of them out. She agreed without question—our demeanor must have spoken to her (we later told her why we had needed them). We found some small candles in the break room, left over from a staff member’s birthday celebration. We tied birthday candles and plastic flowers together with a piece of twill tape normally used to secure endotracheal tubes, and we handed the collection to the young woman. Meanwhile, Edna’s family had pulled back her covering sheet, revealing the dress that I had placed over her body earlier. They were moving quickly, some crying and some chanting. They placed our little bundle on top of her, along with money, jewelry, and other items. The doctor and I stood quietly in the background. Edna died as her family cared for her. They asked if I would dress her before her body was transported. I was grateful for this chance to participate one last time in Edna’s care.
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The Heart of Nursing
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The last moments of Edna’s life and the first moments of her death moved me. I felt a deep responsibility to continue the tone of ritual that her family had started. I did not completely understand it, but I knew that my job, dressing her, was extremely important. Normally, postmortem care is something that we want to get done quickly. It is not unusual for a few of us to work as a team. This time was different for me. Still wanting to preserve Edna’s dignity and privacy (I could not help but wonder if her spirit would still somehow be present until her body had been prepared), I tackled this task on my own. It just seemed right to me for this to stay just between Edna and me. I closed the door, bathed her, and dressed her before covering her for the last time. I hoped that I had prepared her for the journey in the ways that her family would wish.
In retrospect, the story of Edna and her family is rich with spiritual significance, and it provided opportunities for careful assessment and action. Without specific guidelines to follow, we had to improvise in order to meet the family’s spiritual needs. I realized that we might have better served Edna and her family if we had had some established guidelines. Later, after our 3-day experience, I further explored elements of Buddhism as well as some of the literature about spiritual nursing care. I am now better prepared for an encounter such as this one.
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Buddhism and Laotian Culture
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Although practiced by several billion people worldwide, Buddhism is a minority religion in the United States.8 It entails many beliefs, practices, and customs that my colleagues and I did not immediately recognize or understand. Many Laotians are of Hmong ethnicity. This ethnic group typically practices Theravada Buddhism, although the particular type of Buddhism practiced varies depending on the region of Laos from which the person originates. In this culture, illness and injuries may be attributed to the loss of 1 of the 32 spirits that inhabit the body and maintain health. The loss of a spirit may also be the result of traveling, having an accident, or even being startled when walking alone.4–6
The language barrier further complicated the ability of Edna’s health-care providers to participate in any genuinely active or expressive fashion. Language barriers are often an issue for older Laotians. Because healthcare situations present unique challenges in understanding and in decision making, even the presence of a family member who speaks both English and Laotian may not be sufficient for circumstances such as those in Edna’s case.5
Because of the language barrier, Edna’s poor prognosis and unstable condition must have been even more frightening to her family. Edna’s husband showed little emotion initially other than occasional tears. His affect, for the most part, was flat. I wondered if he was in shock or if this behavior was typical for his culture. I later learned that Laotians tend to be reserved in most interactions, especially in healthcare settings. Effusiveness and expression of strong feelings are not valued in Laotian culture.4,5 Although Edna’s family did have support from others within their own culture, we could not explain the situation in terms that were culturally and spiritually understandable to them. Edna’s son may have been experiencing a great deal of guilt related to the fact that he was driving the car. He was obviously distraught for the entire time, and I wondered if he was receiving individualized support from Edna’s other family members. In retrospect, his visibly expressed emotion may have conflicted with the reserve that is the cultural norm. I had detected some tension between father and son and wondered then if it was centered on guilt and resentment. It seemed to me most likely that the son’s emotional expressions disturbed older family members rather than inviting their support and comfort.
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Spiritual Assessment
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Just as the nursing process and certain protocols are often helpful in guiding interventions, a model of spiritual care is valuable, especially in circumstances that are not ordinary to routine care. Fitchett’s model of spiritual assessment9 would have been applicable in this case. Although it was impossible to interview Edna directly and difficult for us to interact with her family, our team might have been better able to provide spiritual care in this situation if we had had a deeper understanding of Buddhism as assessed through the 7 dimensions of Fitchett’s model9 (see Table
). This model is a useful guide to spiritual assessment and helps in categorizing important data in order to implement the nursing process more efficiently in a plan of care.
As it became apparent that beliefs and spiritual traditions were an important component of the lives of Edna and her family, it was important to allow ample time and opportunity for the family to participate in activities that had meaning in Buddhism. As moments passed bringing Edna closer to the end of her life, her family worked to create a peaceful atmosphere and prepare her spirit to leave her body with serenity. "All Buddhists have faith in (1) Buddha; (2) his teachings, called the dharma; and (3) the religious community he founded, called the sangha. Buddhists call Buddha, the dharma, and the sangha the Three Refuges or Three Jewels."8 "Buddha preached that existence was a continuing cycle of death and rebirth. Each person’s position and well-being in life was determined by his or her behavior in previous lives."7 Buddhism also places much emphasis on the concept of giving. Any act of giving is considered auspicious and promotes a peaceful death and rebirth.7
Guidance may or may not have a spiritual basis. It is important to establish a rapport and gain the trust of patients and their families and/or explore their existing resources while encouraging the use of those resources. It is essential to allow patients and their families to be their own authority on the type of care they most need, and it is imperative that we do our best as health-care providers to meet those needs. Edna’s family seemed to seek guidance through each other and some of the traditions of Buddhism itself. It was apparent that Edna’s family had great confidence in the purposes of the ritual actions they performed. Our responsibility was to facilitate those rituals and practices.
The experiences surrounding the death of a loved one can establish a spiritual connection when family members are confident in their beliefs and the results of ritual. The entire experience became mission driven for Edna’s family in the last moments of her life. Edna’s family openly displayed much sadness. Once the decision was made not to resuscitate her, I watched the emotional tone change from sadness and fear to urgency. The urgency was mostly around preparation for a peaceful environment and necessary rituals to be performed near the time of death.
Buddhists believe that friends and relatives have a responsibility to help loved ones have a peaceful death. This belief promotes the best possible rebirth, according to the teachings of Buddhism.7 The presence of others during times of crisis and stress is often more of an individual preference than a religious preference. The presence of people other than Edna’s family members signaled the likelihood of an ongoing support system. Several extended family members and friends within their Buddhist community were present during the last hours of Edna’s life. This fellowship was extremely important to the group and promoted a more healing environment for them.
Actions such as placing the dress over Edna’s body and the candles, ribbon, and flowers have great meaning. Buddhist images are often surrounded by flowers as a symbol of protection from the gods. Candles are sometimes lit to welcome ancestral spirits.7 Personal items left with Edna for her "journey" were also part of Buddhist ritual and tradition. These rituals were a means of caring for Edna and giving her survivors some control within the situation. These practices were extremely important to the outcome of Edna’s spiritual journey.
The intensive care unit can be a frightening environment for anyone. Fear is intensified by the feeling of isolation one has when surrounded by people who do not speak the same language and a culture that may be very different from one’s own. The young woman’s request for candles and flowers and for an assurance that Edna would be dressed showed tremendous courage and commitment to the woman’s beliefs. Recognition of her courage empowered the young woman to participate in Edna’s care in a significant way.
It was apparent that Edna’s immediate family was unsure of what they should do about whether or not to resuscitate her if her heart stopped beating. They did, however, exhibit a great sense of devotion to the necessary rituals once the decision was made.
The process of Edna’s dying shifted the priority from Edna herself to her family and their spiritual needs. Spirituality provides coping resources.9 The spiritual well-being of the family members was of utmost importance. What happened in the hospital would affect their coping and healing in the future.
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Moving Forward and Looking Back
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"Although verbal conversation is integral to a typical spiritual assessment, some clients may not be able to speak, hear or cognitively understand a verbal assessment."9 Specific guidelines that address the needs of a nonverbal patient and/or a non–English-speaking family can help to eliminate oversights that could result in long-term adverse outcomes. It is important for nurses to remember that the experiences of patients’ families in the intensive care setting in a tragedy such as Edna’s is one that leaves a lasting impression, often centered on interactions with health-care providers.
The lack of time in this case was another barrier to comprehensive spiritual care. Even simple communication was time-consuming because of the language barrier. We never located a Laotian translator during the 3 days of Edna’s admission. Since then, the hospital has contracted with a different service. Staff members were instructed about the use of the service, and quick reference guides were placed in several locations throughout the unit. As the primary care nurse for Edna, I was determined to learn about the Buddhist faith in order to understand some of her family’s needs and to provide the family with some comfort.
Unfortunately, as much as I would like to, I could never go to such lengths for every patient in my care. Perhaps it would not seem so difficult if protocols for assessing spiritual needs became as routine as protocols for assessing vital signs. A unit-based cultural awareness committee would be an ideal and effective way to prepare for the challenges we faced. As we try to learn about populations within our own community, no matter how much of a minority, a reference could be created and used in situations such as this case. Creating such a reference would further the concept of holistic care for patients and their families.
Under ideal circumstances, we could have implemented several effective and spiritually appropriate interventions. In the critical care context of Edna’s situation, and under the time constraints imposed by her unstable and deteriorating condition, comprehensive spiritual support was impossible. Nevertheless, we did not entirely neglect spiritual nursing care for Edna and her family, and with understanding and flexibility on the part of both the family and the staff, at least we provided some of the core elements of important rites.
A Buddhist representative as part of the healthcare team or at least a Laotian-speaking translator would have been helpful. Despite the minimal spiritual resources that were available, I have always thought that we provided the best care we could as Edna "left for her journey." Care of the spirit requires care by the spirit. The spirit resides in the soul and is manifested by the actions of the heart. I think that Edna’s family recognized that our actions expressed our caring for her spirit and that, ultimately, we did not fail them.
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Acknowledgment
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I thank Julius G. Goepp, MD, for extensive review and criticism of this manuscript.
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References
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- Beers MH, Berkow R. The Merck Manual of Diagnosis and Therapy. 17th ed. Whitehouse Station, NJ: Merck & Co Inc; 1999.
- USA Citylink. Demographics: Rochester. Available at: http://rochesterny.usl.myareaguide.com/census.html. Accessed September 15, 2005.
- Answers.com. Monroe County, New York. Available at: http://www.answers.com/topic/monroe-county-new-york. Accessed September 15, 2005.
- Kemp C, Bhungalia S. Culture and the end of life: a review of major world religions. J Hosp Palliat Nurs. 2002;4:235–242.
- Keovilay L, Kemp C. Asian health: Laotians. Available at: http://www3.baylor.edu/~Charles_Kemp/laotian_health.html. Updated September 2004. Accessed September 15, 2005.
- Kemp C. Cultural issues in palliative care. Semin Oncol Nurs. 2005;21:44–52.[Medline]
- Harvey P. An Introduction to Buddhism: Teachings, History and Practices. New York, NY: Cambridge University Press; 1990.
- Reynolds FE. Buddhism. World Book Online Americas Edition. Article 081080. Available at: http://www.aolsvc.worldbook.aol.com/ar?/na/ar/co/ar0810880. Accessed November 20, 2002.
- Taylor EJ. Spiritual assessment. In: Conner M, Anselment N, eds. Spiritual Care: Nursing Theory, Research and Practice. Upper Saddle River, NJ: Pearson Education Inc; 2002:103–136.
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Case Report
Biomedical Factors
