Keywords

Nursing care, Nursing perceptions of care, Persistent vegetative state, Pregnancy.

 

Authors

  1. Fedorka, Patricia D. PhD, RNC-OB, C-EFM, CNE
  2. Heasley, Susan Wallace MSN, RNC-OB
  3. Patton, Carol M. PhD, RN, FNP-BC, CRNP, CNE

Abstract

Purpose: To explore the perceptions of labor and delivery nurses caring for women in persistent vegetative states with viable pregnancies.

 

Study Design and Method: For this qualitative research study, participants included a purposive sample of 13 RNs who provided bedside care to pregnant women in persistent vegetative states. The researchers simultaneously collected and analyzed data from the participants. When the researchers achieved saturation of the data, they presented their results to the participants for corroboration.

 

Results: The nurses reported both knowledge deficits and skill deficits in caring for this patient population. Nurses described emotional responses related to perceived limited support from administration, and reported seeking education from other sources. Although considered experts in labor and delivery care, the obstetrical nurses in this study reported feeling like novices when caring for patients with a diagnosis of persistent vegetative state. The nurses' caregiving concerns were found to originate in their ethical beliefs of beneficence and nonmaleficence.

 

Clinical Implications: When a patient presents to an obstetrical unit with an uncommon multidisciplinary severe complication such as vegetative state, the nurses perceived the need for support in order to give the best care. This includes education, a multidisciplinary team approach, and continued instruction throughout the patient's stay. Although nurses consider themselves experts within their practice area, they admit shortcomings when unusual complications are apparent.

 

Article Content

This article is about the nursing care of pregnant women in a vegetative state. Women rarely suffer severe trauma during pregnancy; statistics indicate that only 6% to 7% of women suffer trauma serious enough to compromise the pregnancy (Criddle, 2009). Motor vehicle accidents (MVAs) are one cause of trauma that can lead to devastating results, including traumatic brain injury (TBI). On a yearly basis, approximately 1.7 million cases of TBI occur within the United States, with approximately 20% resulting from MVAs (Centers for Disease Control and Prevention [CDC], 2013). Worldwide, the incidence of injury due to MVAs is a staggering estimate of 50 million individuals per year, with TBI ranking as the leading cause of death and disability in children and young adults (World Health Organization [WHO], 2013). One unfortunate outcome of TBI is the condition known as persistent vegetative state (PVS), a traumatic or nontraumatic insult to the brain with complete or partial preservation of hypothalamic and brain-stem function (Avesani, Gambini, & Albertini, 2006). PVS results in unawareness of self or the environment, although the individual still experiences sleep-wake cycles.

  
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For a pregnant woman, the insult of an injury that results in PVS can have a variety of effects on the outcome of the pregnancy, secondary to the gravity of the trauma and the implications for physiological function. In addition to the medical needs of the pregnant woman in PVS, perinatal care must be administered until the birth of the fetus. Most patients in PVS require feeding tubes and intermittent splints, and many require tracheotomies. In addition, the care involves monitoring fetal status to detect any signs of distress, as well as monitoring the mother for signs of pregnancy complications.

 

Between 2000 and 2007, three pregnant women received care in a Pittsburgh area hospital after a diagnosis of PVS secondary to trauma suffered from MVAs (Chiossi, Novic, Celebrezze, & Thomas, 2006). Although pregnant, these women were initially treated based on the acuity of their injuries at the time of admission. Upon the fetus reaching the point of viability, (approximately 24 weeks gestation), each woman was transferred to the hospital's in-patient obstetrical unit for prenatal management until such time as the birth was deemed safe and/or imminent. In each circumstance, the infant was healthy at the time of discharge.

 

1. The first patient, age 30, experienced severe trauma at 19 weeks' gestation. She gave birth to her infant at 31 weeks' gestation via caesarean secondary to a Category II fetal monitoring strip. Apgars were 4, 7, and 9 at 1, 5, and 10 minutes, respectively. The mother survived in a PVS for an additional 7 years.

 

2. The second patient, age 34, experienced severe trauma at 10 weeks' gestation. She gave birth to her infant at 34 weeks' gestation via cesarean secondary to breech position. Apgars were 6 and 9 at 1 and 5 minutes, respectively. The mother survived in a PVS for an additional 5 years.

 

3. The third patient, age 19, experienced severe trauma at 8 weeks' gestation. She gave birth to her infant at 34 weeks' gestation via caesarean secondary to seizure activity. Apgars were 6 and 8 at 1 and 5 minutes, respectively. The mother lived in a PVS for an additional 7 days.

 

 

A review of the literature in 2006 found 17 reported cases of pregnant women in PVS (Chiossi et al., 2006). A subsequent 2013 review of the literature revealed an additional case study published in 2010 (Abazzia et al., 2010.) Including the third patient discussed in this study, the count, since 1979, now rises to 19. The literature that does exist discusses the care of pregnant patients in PVS from the standpoint of medical management; however, an extensive literature search revealed a noticeable lack of reporting regarding the nursing perinatal management of such patients. The positive outcomes of the three pregnancies in this study indicate that, although unique, the care of a neurologically devastated patient on an obstetrical unit may result in a live birth of a healthy baby.

 

Study Design and Methods

Methodology

The researchers employed qualitative descriptive methods to conduct this research study. Qualitative description is useful when exploring events relevant to clinical practice. This method allows for the study of the experience in its most natural state, without philosophical or theoretical obligations, as in phenomenological or grounded theory research. It supplies the researcher with a rich, clear description of an occurrence without personal interpretation of the findings in an effort to develop theory (Sandelowski, 2010).

 

The researchers addressed the trustworthiness of the qualitative research by utilizing the operational techniques to support the rigor of the data, as prescribed by Lincoln and Guba (1985). These processes are as follows:

 

* Credibility: activities that increase the probability that credible findings will be produced, which can be done through prolonged exposure with the research topic;

 

* Dependability: acceptance of the findings as accurate;

 

* Confirmability: recording the activities of the research in such a manner that another could follow the evidence and thought processes that led to the conclusion; and

 

* Transferability: the probability that the study findings have meaning to others in similar situations.

 

 

For example, after collecting all the data, the researchers developed a poster presentation and shared their results with the participants. The participants validated that the reported findings indeed corroborated their perceptions of caring for these patients in PVS. This validation supports the credibility process.

 

Research Setting and Sample

This study took place at a tertiary care obstetrical unit in a Pittsburgh area hospital. The hospital contains a level 3 neonatal intensive care unit, as well as a level 1 trauma center. The hospital's internal review board approved the study, which consisted of purposive sampling of all the nurses currently working on the obstetrical unit who were involved in the care of any of the women with PVS (n = 13). Participants included nurses who took care of only one PVS patient, as well as some who took care of two or all three of the patients. After nine interviews, data saturation was reached, defined by Grbich (2013) as continued repetition of information. Interviews continued, however, in an effort to give all 13 interested nurses the option of participating.

 

Data Collection and Analysis

To maintain consistency, the same researcher conducted each interview in a private conference room. The interviews consisted of a single tape-recorded session, lasting an average of 30 to 45 minutes. The researcher asked open-ended questions to elicit candid responses about the care that the nursing staff rendered to the three pregnant patients in PVS on their obstetrical unit, transcribed each interview verbatim, thus collecting and analyzing the data simultaneously using qualitative strategies (Grbich, 2013). Each member of the three-person research team, including the interviewer, analyzed the interviews individually, then met and reviewed the transcripts for repetitive thoughts professed by the nurses, coding the data for shared ideas and differences. They labeled similar notions and ideas according to general themes derived from the data. They explored action words and descriptives, using a thesaurus and/or dictionary to identify root meanings and congruent themes. They also reworded or added questions to the interview guide to elicit clarification of emerging themes. Sample questions included: "Tell me what it was like when you first heard you were getting a patient in persistent vegetative state on your unit?" and "Describe what it was like for you to take care of your first patient in persistent vegetative state."

 

Limitations

There were several limitations to this study. Due to the time lapse from the first admission until initiation of the study, not all nurses involved in the care of the three pregnant patients in PVS were available for participation. This lapse in time also possibly allowed for altered memories of the nurses through discussion with peers, patient outcomes, and temporal distancing from the actual event. Other limitations included an inability to observe the nurses in their natural setting while delivering direct care, thus constraining an accurate interpretation of events by relying only on perception or information collected during interviews.

 

Results

Fortunately, it is rare for obstetrical nurses to encounter women in vegetative states with a viable pregnancy. Based on the nurses' perceptions, care of a patient in PVS presents unique challenges. The themes that came from the data are (a) Knowledge and Emotions, (b) Educational Support, (c) Expert, but Novice, and (d) Ethical Dilemmas.

 

Knowledge and Emotions

During the interviews with the researcher, the nurses discussed their initial reactions to the news that they were going to receive their first pregnant patient diagnosed with PVS. Initial responses revealed a range of emotions including anger directed at administrators, heads of the obstetrical unit, or whoever made the decision that the patient would be cared for on the OB unit rather than a neurology unit. One of the patients arrived on a Friday afternoon, with no advanced notice to the nurses. There were no orders, nothing was prepared, consults were difficult due to the weekend, and other difficulties were encountered because of the lack of notice. Knowing that these patients had an array of neurological and physical needs that are not a routine part of obstetrical care delivered by these nurses, their responses reflected multiple concerns: "Disbelief, anger, uncertainty... How were we going to provide her with the appropriate care being that none of us were really neuro nurses?"

 

The nurses described their thoughts, questions, and concerns as they awaited the first admission. One nurse described her dismay over the potential admission as a "conversation with myself. I remember the first thing that I was feeling was curiosity and interest. What kind of life did she have? The second thing I felt was sorrow and compassion... and the third thing I felt was fear."

 

Emotions ran high as the nurses anticipated caring for each patient with PVS. One participant described her situation in terms of strengths and weaknesses regarding her nursing experience: "I know how to take care of pregnant patients, now all of a sudden we are taking care of a woman with needs that I hadn't really covered since nursing school." The nurses were very focused on the patients' PVS diagnosis, but many were unsure of what it meant in terms of specific care requirements. One nurse expressed her reaction to the news: "The first patient I cared for, I really didn't know what PVS all meant. I was used to taking care of healthy women. I didn't know what kind of care. Is she going to have a trach? Was she on a feeding tube? Was she on a vent, or was she going to be?"

 

Educational Support

Obstetrical nurses do not routinely perform complete, in-depth neurological assessments, tracheotomy care, feeding tube care, or interventions for patients in a contractured state. The nurses in this study expressed an ongoing concern over their lack of knowledge about all of this, as well as education they expected to receive for such foreign tasks.

 

The theme of educational support was recurrent throughout the data collection phase: "I wouldn't have had a problem if I thought the education was there. I just felt the education wasn't there, and that left me really, really, really anxious and, at times, extremely tearful." In an effort to compensate for this perceived lack of education from within the system, nurses in this study took the initiative to educate themselves. Several nurses performed Internet searches and shared that information with their coworkers: "Nurses also had to do a lot of self education. We were pulling articles off Web sites." This was a way to provide continuity of care.

 

Nurses also sought support from more knowledgeable coworkers in an effort to improve their skills and better address patient care needs. These resources included nurses from the obstetrical and neurological units, as well as supervisors and colleagues.

 

The nurses developed peer support systems within the obstetrical unit to provide emotional and educational support, often sharing observations and care techniques with oncoming shifts. With the admission of the third patient, the nurses had the opportunity to spend time on a neurological unit, shadowing the nursing staff in an attempt to learn care requirements.

 

The nurses in this study identified the need for enhanced nurse education in the early planning stages prior to transfer of the first patient in PVS to obstetrics. The participants also expressed their desire for ongoing education throughout this patient stay, as well as prior to and during in-patient stays of each subsequent patient. These nurses viewed learning as an ongoing process, requiring a focus on specific patient needs.

 

The nurses determined that education should be a team effort, with communication as the essential element of this endeavor: "I like the team approach. I think that the nurses should sit down with the physicians and neuro people...talk about [the patient's individualized care] with nurses too, not just the doctors, because the nurses do the bedside nursing care."

 

Expert, but Novice

The participants viewed themselves as experts in the rendering of obstetrical nursing care: "I felt that my labor and delivery skills were expert skills." They further described these special skills in terms of specific obstetrical needs: "I think the off services would have a difficult time recognizing the fetus. One of the things that the labor and delivery nurses did for her that I don't think neuro nurses would do, would be talking about the baby, showing her ultrasound pictures of the baby... Labor and delivery nurses are different with the antepartum patients." More specific concerns related directly to the pregnancy: "Caring for a patient that had another life in her, we were actually taking care of two patients." Another participant stated, "We are experts at fetal monitoring, and in spite of the mother's other injuries, the fetus still needed to be cared for and required our expertise."

 

The participants expressed concern about a lack of expertise in the care of neurologically devastated pregnant patients: "Very, very novice... Just the only thing that I felt comfortable taking care of at first was the pregnancy. Then you weren't sure how her condition affected her pregnancy, so that didn't make you feel comfortable." Despite efforts to gain an understanding of care requirements for each patient, the nurses in this study expressed ongoing knowledge deficits. One nurse explained her efforts to learn, as well as her lack of knowledge for the complexities of care: "I studied with one of our nurses who worked in intensive care one day and then took care of the patient the next day by myself...I was trying to rely on what I learned the day before." She went on to state this in very basic terms: "Am I even asking the right questions?"

 

Another nurse in this study expressed a need for better pathophysiological understanding in conjunction with pregnancy: "She had diabetes insipidus, and her electrolytes were always out of whack. In her car accident, hypothalamus was injured, and she was running a temperature, and a temperature in a pregnant woman is very dangerous. But for her, how do deal with what is normal, period, versus what is normal for her?"

 

The participants identified the need for an interdisciplinary approach to include the physician, the dietician, and other ancillary supports. The nurses hoped for a shared responsibility between the obstetrical and neurological units in order to have the most knowledgeable person care for the patient in order to provide optimum care.

 

The nurses described a lack of advanced critical thinking throughout the interviews. To this end, in an effort to administer competent care, nurses became task-oriented: "It was initially a little bit disorganized. You had to organize your thoughts to encompass interventions rarely required by pregnant women. We had to turn her, we had to suction her...." Despite their self-reported perceived lack of expertise regarding PVS, the participants recounted a deep desire to provide excellent care.

 

Ethical Dilemmas

The interviews with the researcher were emotionally charged with an ethical undercurrent. Undertones of beneficence and nonmaleficence were found to be weaved throughout the interviews; nurses wanted to provide appropriate care while doing no harm: "You want to give the best care that you can to the patient, and you're not really sure you are always going to be able to do that. You are not sure you are going to catch every symptom that you should be picking up: lab work, symptoms of the patient, etc."

 

Additionally, ethical concerns stemmed from the actual pregnancy as the nurses worried about a healthy outcome. One nurse said: "I was nervous being responsible for her...I was nervous taking care of her. Well, there's a baby in there, she's carrying a baby, and that's our responsibility."

 

The Overall Experience

Despite the emotions and concerns that the participants experienced, the nurses expressed positive feelings regarding the care and support afforded these women and their families: "I am glad that I took care of the patient because I bonded with her in some ways and enjoyed talking to the father." Other nurses expressed an understanding of the patient's need to reside on their obstetrical unit: "Well, she is ours because she is pregnant. There are two lives, and she's here to preserve that second life and hers too, as much as humanly possible."

 

The interviews revealed a sense of pride in the quality of care the nurses provided. Even though the nurses emotionally supported each other and shared the education they acquired, the nurses always felt that the patient really belonged on a neuro unit where the patients' medical and neurological needs would have been better met, and where the OB nurse could go to the unit and do fetal assessments. They realized that although they were experts in OB they were not experts in neuro no matter what they "picked up" with limited education. One nurse who had cared for two of the three patients in PVS shared hindsight: "I think, despite the lack of support we had, we still took really good care of these patients. We have a lot to be proud of from that standpoint, and both of them had wonderful outcomes: they had beautiful children."

 

Clinical Nursing Implications

Nursing requires increasingly complex critical thinking capabilities and a set of refined assessment skills. Medical and technological advances have resulted in the extension of life for more severely injured and medically complex patients. Given that medical knowledge is growing at such a rapid pace, it is not possible to incorporate all new knowledge into the classroom experience at the same pace (Peplau, 2003). Because of the inherent difficulty in keeping up with the rapid pace of new knowledge, nursing practice has become increasingly specialized. To this end, it is imperative that institutional education departments be willing and able to assist in the provision of necessary education and support when admitting a challenging patient whose care requires new skills and information. In 2008, the American Nurses Association (ANA, 2008) issued Professional Role Competence, stating that continuing competence is the responsibility of each nurse as a hallmark of professionalism. All nurses have the responsibility to maintain their competence by continued education in a variety of methods.

 

The nurses in this study did not expect to become experts in the care of the pregnant patients in PVS, but the additional education they received equipped them with the tools necessary to identify complications, based on critical thinking skills, and to help them react to emergent situations in a timely manner.

  
Table 1 - Click to enlarge in new windowTable 1. Suggested Clinical Implications

The underlying ethical overtones in the moral drive of the nurses on this unit reflect the ANA Code of Ethics in their search for knowledge as an assurance of safe nursing practice (ANA, 2001). As the researchers uncovered, the deep-seated belief that patients deserve the best possible care develops in conjunction with technical skills and leads to ethical practice (Vanlaere & Gastmans, 2007).

 

Conclusion

In this obstetrical unit, the end result of nurses rendering care to three neurologically devastated pregnant women had positive outcomes for the fetuses. As this study demonstrated, adequate preparation of the nursing staff and a strong support team may reduce frustration and anxiety of nursing personnel. Prior to the admission of any high-risk neurologically devastated pregnant woman to an obstetrical unit, a multidisciplinary admission team should provide education and preparation to the nursing staff for patient care requirements. Although this study only included a small sampling of labor and delivery nurses, the implications for nurses working outside their areas of expertise and the conflict produced have high transferability as an interesting topic to explore with nurses working in other specialty areas who encounter patients who have conditions with which they are not familiar.

 

Acknowledgments

The authors thank the staff who participated in the care of these challenging patients and who generously consented to participate in the study.

 

ONLINE

Organizations

  
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American Hospice Foundation:

 

http://www.americanhospice.org/articles-mainmenu-8/caregiving-mainmenu-10/50-com

 

Brainline:

 

http://www.brainline.org/landing_pages/categories/coma.html

 

Coma Science Group:

 

http://www.coma.ulg.ac.be/index.html

 

Hastings Center:

 

http://www.thehastingscenter.org/

 

Multi-Society Task Force on PVS:

 

http://www.nejm.org/doi/full/10.1056/NEJM199405263302107

 

Patient.uk:

 

http://www.patient.co.uk/doctor/Vegetative-States.htm

 

Articles

 

"Maternal Persistent Vegetative State with Successful Fetal Outcome":

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3057580/pdf/11641542.pdf

 

"More Dead than Dead: Perceptions of Persons in the Persistent Vegetative State":

 

http://www.wjh.harvard.edu/~wegner/pdfs/Gray,%20Knickman%20&%20Wegner%20(2011)%2

 

"Pregnancy in a Persistent Vegetative State":

 

http://journals.lww.com/obgynsurvey/Abstract/2003/11000/Pregnancy_in_a_Persisten

 

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