Update
Stress and Distress in Pediatric Nurses:
The Hidden Tragedy of Baby K
Ronald M. Perkin, MDThe Hidden Tragedy of Baby K
Professor and Associate Chairman, Department of Pediatrics
Director of Critical Care Medicine and Inpatient Respiratory Care
Loma Linda University & Children's Hospital
Providing care for critically ill and dying patients is stressful work. It also can be distressing as it often is a source of profound moral conflict and personal suffering.1
Intensive care nurses experience considerable job stress, which is associated with burnout.2 The concept of burnout first received serious attention when Freudenberger used the term to denote a state of physical and emotional depletion resulting from conditions of work.3-5 Stress resulting from work-related frustrations may decrease morale, lower productivity, and lead to emotional withdrawal.6 Individuals who experience chronic stressful circumstances have reported increases in physiological symptoms and psychological complaints.7,8 Physiological symptoms include headaches, muscle tension, increased susceptibility to illness, gastrointestinal problems, alterations in weight, insomnia, and fatigue. Psychological complaints include depression, anxiety, helplessness, rigidity, irritability, moodiness, and anger.
Organizational consequences may also occur, including lower job satisfaction, deterioration in quality and delivery of services, and inability to retain experienced personnel.2,7 Recent research suggests that protracted job stress among healthcare workers may be a major factor in the poor delivery of health services and is also related to the development of negative, cynical attitudes toward patients.2,6
Pediatric nurses have rarely been studied for incidence of burnout. The few studies which have been done suggest that burnout is a significant problem in pediatric nursing, particularly critical care nursing.2,9,10
Job stress has been identified as a significant contributor to feelings of burnout in nurses and physicians. 2,6-9,11 Job stress may be produced by a number of factors: (1) caring for dying patients or patients who will not get well,2,12 (2) workload,2 (3) interprofessional conflicts,1,2,8 (4) uncertainty regarding treatment decisions,2 (5) lack of decision making ability,9,13 (6) work environment,8 (7) fear of making mistakes,8 (8) feelings of inadequacy,8,13 (9) home/work conflict,13 and (10) unavailability of staff support.13
Many nurses experience a variety of conflicts as they carry out their caregiving roles. Conflicts may occur between various moral positions and competing obligations (to patients, families, colleagues, institutions, or themselves) or in situations that can place their moral integrity in jeopardy.1 These conflicts culminate in personal suffering and distress for the nurses who provide care.
Recent study of nursing attitudes toward providing care for Baby K afford further insight into the conflict nurses often face.14
The Case of Baby K
Baby K was an anencephalic infant born in October 1992. Anencephaly is a catastrophic birth defect in which all the brain structures except a rudimentary brainstem are absent. The brainstem is capable, at least temporarily, of sustaining vital signs of physical life. Anencephalic babies are permanently unconscious and lack all sensation and cognitive ability,15 but do not meet the legal definition of death by neurologic criteria, which is a clear indication to discontinue life-support.
The standard treatment is to keep anencephalic infants warm and fed as their organs fail. Death usually comes from respiratory failure, because the brainstem is not adequate to the task of regulating breathing.
Baby K was kept alive much longer than most anencephalic babies because her mother insisted that the hospital provide mechanical breathing support during her periodic respiratory crises. A U. S. District Court ordered that the hospital caring for Baby K must put her on a mechanical ventilator whenever she had trouble breathing.16
The court's decision stripped away the health care professionals' prerogative to act as moral agents and turned them into instruments of technology.
Although the nurses recognized that Baby K did not feel pain and was not capable of suffering, they did believe that the staff suffered when providing care for her, and 24% responded that their values were always compromised. They felt placed in the untenable position of violating their own collective conscience--a situation known to cause great professional suffering.
A sense of powerlessness was experienced by the nurses and contributed to their suffering. A nurse caring for Baby K wrote:
I find it appalling to care for her each day. It is cruel and inhumane to keep her "alive." Animals are euthanized for far less problems and yet this is a human being who really has no voice and no rights other than her mother demanding she be kept alive.
Prolonging the dying of Baby K was wrong. This was not a case of factual uncertainty, conceptual ambiguity or moral perplexity. The certainty of the fate of Baby K was so great among health care providers that there was no room for compromise. The decision to continue to provide care for this child was at the expense of the nurses' and other health care providers' integrity, and resulted in great suffering.
The prolonged dying of Baby K is an example of the kind of compromise without integrity discussed by Winslow and Winslow.17 In this case, nurses, more than other health care professionals, were pressured to compromise, without their viewpoints being considered. The nurses were left with the responsibility of prolonging Baby K's life, and seeing that her needs were met.
This discussion raises the greater question: should caregivers' needs influence ethical decision making?
Dagi, a physician ethicist, is deeply troubled by any emphasis on the emotional needs of the caregiver as a preeminent consideration in clinical ethics.18 He argues that the claim of health care workers to be professionals places legitimate constraints on the extent to which they may be permitted to have their needs and wants influence the ethical dialectic.18
Although his arguments are cogent, caregiver suffering must be examined.1,19,20 We must examine the nature of this suffering and explore the moral implications of how suffering affects care. What is the proper threshold of suffering that should be endured within the context of the caregiving role? Was the caregiver suffering in the case of Baby K legitimate or destructive?
Measures to Reduce Stress
As has been made evident by the research addressing caregiver burnout, ways of reducing job stress need to be implemented. The following measures have been suggested to reduce nursing distress: (1) communication and involvement in decision making, (2) peer support groups, 3) values education, (4) establishment of nursing ethics forums.
Communication and Involvement in Decision Making
Lack of decision making involvement for nurses, although they are the only staff members constantly involved at the bedside, has been related to nursing burnout.21 Nursing involvement in decision making supports personal and professional integrity while optimizing patient care,22 and may also contribute to feelings of job satisfaction.9
Early and sustained dialogue should be encouraged between patients, families, nurses, physicians, and supportive disciplines, so integrity will not be compromised and suffering will not be prolonged. Dialogue should seek understanding and clarity so responsibility can be assigned without anger, blame, or shame. Multidisciplinary dialogue is necessary because conflict occurs not only at the health care team-patient/family interface but also at nurse-physician and physician-physician interfaces.
Daily medical rounds should not only focus on technical details of medical management but also on the status of communication, the process of decision making, and stress factors for patients, families, and staff.23
A true interdisciplinary approach to patient care, setting an expectation for knowledgeable involvement on the part of nurses, should be developed.9 A primary goal of interdisciplinary rounds is to blur the boundaries regarding knowledge between disciplines.
Peer Support
Every day nurses and other health care professionals are confronted with ethical dilemmas as part of their clinical practice. Despite formal resources available for consultation and advice, nurses first seek the wisdom and guidance of their peers during times of moral uncertainty.24 The support of knowledgeable peers is crucial for nurses in making effective ethical decisions. Unit-based peer support means listening, providing guidance and support, and being sensitive to one's own value systems as well as those of colleagues.
Values Education
It is important that health care providers scrutinize their judgments, attitudes, and actions.25 The goal of this critical, reflective thinking is enhancement of ethical practice--enabling decisions to be based on professional, ethical, and moral principles rather than on personal biases or preferences.
Health care providers must have realistic insights into the emotional "baggage" they bring to the professional workplace. The effects of early childhood experiences, the need for validation and affirmation, and the hunger for a sense of meaning in the face of life's tragedies all profoundly influence the way in which individuals cope with death and dying.26
Establishing Nursing Ethics Forums
Nurses need an avenue for discussing ethical concerns. With the increasing awareness of ethical issues in health care, many nursing professionals have established nursing ethics forums as entities separate from institutional ethics committees.27
The functions of such forums include: (1) identifying, exploring and resolving ethical issues in nursing practice, (2) educating nurses in bioethics and nursing ethics, (3) preparing nurses for interdisciplinary decision making regarding ethical issues, (4) reviewing nursing ethics material, (5) reviewing departmental policies related to ethics, (6) encouraging nursing ethics research, and (7) preparing nurses to serve on institutional ethics committees.27,28
Nursing ethics forums provide an important arena for consideration of nursing-specific issues. It is not that nurses do not recognize ethical dilemmas; rather that they lack preparation to solve these dilemmas using ethical principles.
Final Notes: Mistakes and Fallibility
The nurses in this study expressed concern about making mistakes. There is remarkably little tolerance in medicine for fallibility. Frequently, making mistakes is equated with being bad persons.
Hauerwas, a theologian and ethicist, argues that medicine necessarily involves a sense of tragedy, since the commitment to sustain life is inherent to its practice. He continues by saying that modern medicine must necessarily fail because success commensurate to this desire (sustaining life) is impossible.29 Moreover, this very commitment, subject to the boundaries of finitude, necessarily results in errors that often increase our difficulties rather than alleviating them. The nurses' concern about making mistakes illustrates Hauerwas' point.
The moral crisis in contemporary medicine is not the explosion of technology, but our failure, as a society, to have a sufficient sense of the physical and moral limits involved in any attempt to help and care for one another. Society is not providing medicine with guidance, and this lack of moral consensus to guide medical care intensifies its tragic character.29 The tragedy involved in the case of Baby K extended far beyond her birth defects.
REFERENCES
1. C. H. Rushton, "Caregiver Suffering in Critical Care Nursing," Heart and Lung 21 (1992): 303-6.
2. J. M. Oehler, M. G. Davidson, "Job Stress and Burnout in Acute and Nonacute Pediatric Nurses," American Journal of Critical Care 2 (1992): 81-90.
3. H. Freudenberger, "Staff Burn-Out," Journal of Social Issues 30 (1) (1974): 159-65.
4. M. C. Eastburg, M. Williamson, R. Gorsuch, C. Ridley, "Social Support, Personality, and Burnout in Nurses," Journal of Applied Social Psychology 24 (1994):1233-50.
5. A. I. Fields, T. T. Cuerdon, C. O. Brasseny, et al., "Physician Burnout in Pediatric Critical Care Medicine," Critical Care Medicine 23 (1995): 1425-29.
6. A. Esteban, P. Ballesteros, J. Caballero, "Psychological Evaluation of Intensive Care Nurses," Critical Care Medicine 11 (1983): 616-20.
7. D. A. Revicki, H. J. May, T. W. Whitley, "Reliability and Validity of the Work-Related Strain Inventory Among Health Professionals," Behavioral Medicine (1991): 111-120.
8. D. J. Lewis, J. A. Robinson, "ICU Nurses' Coping Measures: Response to Work-Related Stressors," Critical Care Nurse 12 (1992): 18-23.
9. H. P. Stern, S. E. Stroh, D. H. Fiser, E. L. Cromwell, S. G. McCarthy, M. T. Prince, "Communication, Decision Making, and Perception of Nursing Roles in a Pediatric Intensive Care Unit," Critical Care Nurse Quarterly 14 (1991): 56-58.
10. Lois Van Cleve, "Nurses' Experience Caring for Anencephalic Infants Who are Potential Organ Donors," Journal of Pediatric Nursing 1993; 8:79-84.
11. S. J. Eisendrath, N. Link, M. Matthay, "Intensive Care Unit: How Stressful for Physicians?" Critical Care Medicine 14 (1986): 95-98.
12. R. D. Truog, "Locked-in Syndrome and Ethics Committee Deliberation," The Journal of Clinical Ethics 3 (1992): 209-10.
13. C. L. Cooper, S. Mitchell, "Nursing the Critically Ill and Dying," Human Relations 43 (1990): 297-311.
14. R. M. Perkin, T. Young, M. C. Freier, J. Allen, R. D. Orr, "Stress and Distress in Pediatric Nurses: The Hidden Tragedy of Baby K" (in preparation).
15. Medical Task Force on Anencephaly, "The Infant with Anencephaly," New England Journal of Medicine 322 (1990): 669-74.
16. G. J. Annas, "Asking the Courts to Set the Standard of Emergency Care--The Case of Baby K," New England Journal of Medicine 330 (1994): 1542-45.
17. B. J. Winslow, G. R. Winslow, "Integrity and Compromise in Nursing Ethics," The Journal of Medicine and Philosophy 16 (1991): 307-23.
18. T. F. Dagi, "Compassion, Consensus, and Conflict: Should Caregivers' Needs Influence the Ethical Dialectic?" The Journal of Clinical Ethics 3 (1992): 214-18.
19. K. Doka, C. H. Rushton, T. A. Thorstenson, "Health Care Ethics Forum '94: Caregiver Distress: If It Is So Ethical, Why Does It Feel So Bad?" AACN 5 (1994): 346-52.
20. R. J. Echenberg, "Permanently Locked-in Syndrome in the Neurologically Impaired Neonate: Report of a Case of Werdnig-Hoffman Disease," The Journal of Clinical Ethics 3 (1992): 206-08.
21. R. E. Marshall, C. Kasman, "Burnout in the Neonatal Intensive Care Unit," Pediatrics 65 (1980): 1161-65.
22. M. C. Corley, P. Selig, C. Ferguson, "Critical Care Nurse Participation in Ethical and Work Decisions," Critical Care Nurse 13 (1993): 120-28.
23. J. R. Frader, "Difficulties in Providing Intensive Care," Pediatrics 64 (1979): 10-16.
24. L. Mitchell, "Resources for Ethical Decision Making," Journal of Cardiovascular Nursing 9 (1995): 78-87.
25. C. R. Maupin, "The Potential for Non-Caring When Dealing with Difficult Patients: Strategies for Moral Decision Making," Journal of Cardiovascular Nursing 9 (1995): 11-22.
26. E. T. Creagan, "Stress Among Medical Oncologists: The Phenomenon of Burnout and a Call to Action," Mayo Clinic Proceedings 68 (1993): 614-15.
27. M. R. Zink, L. Titus, "Nursing Ethics Committees--Where Are They?" Nursing Management 25 (1994): 70-76.
28. M. A. Albrizio, J. Ozuna, R. Mattheis, J. Saunders, "A Nursing Bioethics Program," Clinical Nurse Specialist 6 (1992): 97-103.
29. S. Hauerwas, R. Bondi, D. B. Burrell, Truthfulness and Tragedy--Further Investigations into Christian Ethics, 2nd edition (Notre Dame: University of Notre Dame Press, 1985), pp. 184-202.
Go to top of page.
Go to On-line Ethics Library.
University
| Medical_Center
| LLU&MC_home
|
Search
| Employment |
News_&_events
| Academics
| Our_mission |
Admissions |
Registration |
Research |
Alumni |
Student_resources
- All contents copyright © 1997 Loma Linda University. All rights reserved
- Revised January 28, 1997
- Send comments and questions to webmaster@univ.llu.edu
- URL: