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Neurosurgical patients often challenge their caregivers with moral issues that arise during their care. As the population ages, end-of-life decision making and flexible planning need to be stressed so patients can be included in their care decisions and better communicate with the healthcare team. This case study illustrates how one team of nurses used an ethical decision-making model and a caring perspective to help a patient successfully navigate a complex healthcare system as they advocated for her increased involvement in her care.
Miss. S. is a 79-year-old retired chemist. She has never married and has no children or living siblings. Her closest relatives are several nieces and nephews, whom she has seen intermittently over the years. Since her retirement, Miss S. has lived alone in a rural area with her cats in a glass house suspended between large trees. She is independent and lives frugally, yet comfortably.
One evening, Miss S. stumbled and fell backward on her porch, hitting the back of her head. She felt weak all over and experienced tingling in her arms and hands, but was able to crawl to the phone and call 911. Paramedics took her to a nearby community hospital. After plain X rays of the cervical spine showed a high-cervical fracture, Miss S. was airlifted to an academic medical center and admitted to the neurosurgery service.
Miss S. was a delightful woman, slight in stature with frail skin and severe osteoporosis. She was placed in a halo body jacket and underwent uneventful cervical spine stabilization. Because of her advanced age and potential respiratory issues, she was placed in the neurosurgical intensive care unit postoperatively. After the first 48 hours, Miss S. developed difficulty eating; a swallowing evaluation demonstrated partial paralysis of the pharynx and vocal cords. A small-bore feeding tube was placed to prevent aspiration pneumonia. Within a few days, she was transferred to the neurosurgical unit and she began working with occupational and physical therapists. The neurosurgeon and social worker began talking to Miss S. about discharge planning. Because she would require halo immobilization for several months and lived alone, she was not a candidate for admission to an inpatient rehabilitation facility. She was vehemently opposed to placement in a skilled nursing facility, but additional issues with pneumonia halted further discussion and she was transferred back to the intensive care unit in acute respiratory distress. She improved enough to be transferred back to the neurosurgical unit after several days, but the team elected to place her in the neurosurgery step-down unit to monitor her more closely. The three-bed unit had two other patients, both of whom were men, and one man was loud and confused. The other patient also was noisy, and he rarely turned off his television. Miss S. had little control over her surroundings and grew more depressed as other complications, such as skin breakdown around the pin sites on her forehead, developed.
Miss S. was difficult to mobilize even with the assistance of physical therapy. Because of her slight frame, she often toppled over after sitting up. She had little return of oral function and could not eat. Early one morning, with the team on rounds, Miss S. took control. She told the resident and nurse clinician that she had thought all night about an appropriate discharge plan, and she began to describe physician-assisted suicide. She said she would refuse to spend another penny on her own health care, especially when the money could be left to her family instead. She had been miserable for several weeks, and she saw no end in sight. In addition to asking for her feeding tube to be removed, she wanted help in ending her life. She was awake, alert, oriented, and specific in her wishes. The plan that Miss S. presented to her healthcare team left them stunned and unprepared; however, she acted in the same manner as many patients who value autonomy. She was identifying her need for a sense of control and her desire to shape priorities while having her own psychosocial concerns addressed (Winzelberg, Hanson, & Tulsky, 2005).
Miss S. had lost trust and control and consequently felt powerless. Patients value autonomy differently than healthcare providers and often express different definitions in which they emphasize control and psychological needs over creating advanced directives (Winzelberg et al., 2005). To resolve this disconnect, Miss S. attempted to exercise her autonomy by taking control of a decision the healthcare team naturally would not support. The future looked dim to Miss S., yet she was not in a terminal state. This is an important distinction when discussing physician-assisted suicide or withdrawing care (Smith & Daniels, 2002). The healthcare team was invested in beneficence and nonmaleficence (Burkhardt & Nathaniel, 2002). They did not recognize suicide as an option in terms of their own personal moral beliefs, and also were bound by the restrictions of state law. They could, however, support a part of Miss S.'s request to withdraw care.
In most states, physician-assisted suicide is not a legal option. Only Oregon has a legal statute and tight controls, including a provision that two physicians may certify that the patient has less than 6 months to live (Guido, 2001). The state in which Miss S. resided legally prohibited physician-assisted suicide "by common law or by interpretation of [horizontal ellipsis] homicide statutes" (Smith & Daniels, 2002, p. 3). The Supreme Court of the United States recently ruled that the federal government had no authority to regulate physician-assisted suicide, leaving the way open for state legislatures' involvement in the issue on an individual basis. Miss S.'s team would agree with Justice Scalia's dissenting opinion in Gonzales v. Oregon (2006), when he wrote,
[V]irtually every medical authority from Hippocrates to the current American Medical Association (AMA) confirms that assisting suicide has seldom or never been viewed as a form of "prevention, cure, or alleviation of disease," and (even more so) that assisting suicide is not a "legitimate" branch of that "science and art" (Foust, 2006).
In Miss S.'s case, she met certain criteria that made her request important to address. First, she was presumed competent. Second, she was informed. Her physician made regular rounds and they mutually reviewed her plan of care at intervals. Third, her choice was voluntary, though not yet enduring (Guido, 2001). This would be a difficult choice for many healthcare personnel to accept.
To outline the options that were open to Miss S. and to address her desire to have input regarding her plan of care, nursing staff advocated for a meeting of the interdisciplinary team to create a process that would support her ability to make autonomous decisions. This action was supported by the 2001 American Nurses Association Code of Ethics for Nurses as well as ethical principles of practice: beneficence, nonmaleficence, paternalism (protection), and justice (fair and ethical treatment; Burkhardt & Nathaniel, 2002). The group included physicians, the neurosurgical nurse clinician, staff and charge nurses, a pharmacist, a social worker/case manager, occupational and physical therapists, and a chaplain. Because of the sensitive nature of Miss S.'s request, the team met outside of its usual meeting time and discussed processes by which they would advocate for and support Miss S.
Miss S. was identifying her need for a sense of control and her desire to shape priorities while having her own psychosocial concerns addressed.
Several ethical decision-making models discussed in the literature were considered as templates for discussion. They included models based on principles (nonmaleficence, beneficence, autonomy, and justice), models integrating virtue ethics and ethical caring (compassion and advocacy; Cameron, Schaffer, & Park, 2001), and the MORAL model (Kuz, 2006; Fig 1). The team chose to use the MORAL model for ethical decision making to help frame their discussion. This model is based on an acronym and may be used at the bedside. It is easily adaptable to all patient care settings and is easy to remember. MORAL includes five steps: (1) massage the dilemma, (2) outline the options, (3) resolve the dilemma, (4) act by applying the chosen option, and (5) look back and evaluate the entire process (Guido, 2001). Of these steps, resolving the dilemma often is the most complex, as each ethical principle must be addressed based on the views of the main stakeholders. They include autonomy (personal freedom); beneficence (do good); nonmaleficence (do no harm); veracity (truthfulness); justice (equality and fairness); paternalism (assisting in decision making if the person is unable); fidelity (keeping promises); and respect for others, which is the highest principle and incorporates all the others (Kuz).
In terms of Miss S.'s request, physician-assisted suicide was not an option, but withdrawal of treatment was. Miss S.'s family was invited to the meeting, but no family member chose to attend. The team felt it was best to discuss the options away from Miss S. at this point in the planning process; as a result, the attending physician chaired the meeting with the intent of communicating with Miss S. "Massaging the dilemma" included summarizing Miss S.'s medical problems and current plan of care. The pros and cons of each option were discussed; options included inpatient treatment, referral to consultants, and discharge planning. Resolving the dilemma would entail affording Miss S. more control and participation in her care. In addition, the group committed itself to open consultation with the medical center's ethics committee regarding feeding-tube removal and withdrawing further treatment should these measures fail to meet Miss S.'s needs. A follow-up meeting was scheduled with that referral as part of the agenda and a note was placed in the medical record.
Working through the MORAL model, the team implemented actions. The plan was presented to Miss S. She would be moved to a private room closer to the nursing station and away from the acute-care ward. A room with a pleasant view and access to natural light was selected to more closely resemble Miss S.'s glass-walled surroundings at home. A primary nursing team would be assigned to complement the therapists who already were a consistent part of her care. A sitter, paid from the nursing budget, would stay with Miss S. at night when there were fewer staff scheduled during the transition period. In accordance with hospital policy, a mental health consult would be requested to exclude possible depression, which might influence her outlook and decision making. The consultant also was asked to determine whether Miss S. was indeed suicidal and a danger to herself or depressed. The consultant was asked to consider if altering her medication regimen would be helpful. A speech therapist was consulted to examine issues related to swallowing and feeding. Physical and occupational therapists would accelerate their therapies to facilitate independence, and nurses would discuss a change in routine to provide as much control as possible.
After the new plan was presented to Miss S., she agreed to delay discussions related to removing the feeding tube and insisted that she be included in further discussions with the team. Members of the psychiatry service met with Miss S. and determined that she was depressed, but not actively suicidal. They worked with members of the neurosurgery team to adjust her medications. Miss S. responded favorably to the new plan and her involvement in her care. As she began to appreciate small improvements, she also began to feel as though she had much to live for.
In the evaluation phase of this process, the team recognized they initially were shocked by Miss S.'s request to terminate her life. Their lack of involvement in her care led the nursing staff to acknowledge feelings of guilt. Miss S.'s request also illustrated many of the principles of ethical decision making and euthanasia. Her nurses had not previously recognized these concepts and were challenged to develop their own internal standards and ethical concepts related to care.
Throughout this challenging episode, nurses involved with Miss S. maintained a caring perspective. They emphasized the ethic of caring in the changes they made in their care plan and in advocating for action taken on Miss S.'s behalf. Individual relationships with Miss S. were emphasized, and nurses also assisted Miss S. in setting daily goals and helped her to meet those goals. Instead of caring for a "diagnosis," they reframed their care in terms of the individual and found the development of an ethical relationship with Miss S. and with each other reduced conflict and provided additional philosophical tools they could use (Kuz, 2006).
Miss S.'s initial request to withdraw care tore at the hearts of many nurses and prompted them to change the way they related to patients in a taskbased setting. The nursing staff began to shift to an environment that was relationship based. They emphasized patient involvement and developing nurse-patient relationships. This shift became the cornerstone of Miss S.'s experience throughout the healthcare continuum (Koloroutis, 2004).
Miss S. was transferred to a rehabilitation center and a niece and nephew committed to caring for her after discharge. They encouraged her to use her resources for a caretaker when she went home, and caretaker support freed her to make arrangements that continued to offer her control. She returned to her glass house after 5 weeks in a rehabilitation center. During the next several months, her oral function improved and the feeding tube and halo body jacket were removed. Six months after discharge, Miss S. had returned to her previous level of function and her caretaker was no longer necessary.
Miss S. taught the nursing staff that patient involvement in care is critical to a positive outcome and that the nurse-patient relationship is integral to that success. The interdisciplinary team gradually changed their practice from weekly meetings to daily rounds that involved patients in their overall plan of care and provided information, choices, and support for patients and families. A structured decision-making process gave nursing staff confidence to address ethical issues that often were uncomfortable and the cause of conflict. Staff recognized that different courses of action could be implemented in the same situation. By following a systematic model for ethical decision making, nurses can be assured they will be able to provide a professional explanation for their chosen course of action, which will be framed in ethical principles. Resolving ethical dilemmas often requires a structured approach to ensure that all participants have an opportunity to provide input. Using a structure such as the MORAL model puts a public face on the decision-making process with subsequent resolution in open, guided discussions.
Burkhardt, M., & Nathaniel, A. (2002). Ethics and issues in contemporary nursing (2nd ed.). Clifton Park, NY: Delmar. [Context Link]
Cameron, M., Schaffer, M., & Park, H. (2001). Nursing student's experience of ethical decision problems and use of ethical decision-making models. Nursing Ethics, 8, 432-447. [Context Link]
Foust, M. (2006). Supreme Court ruling gives boost to doctor-assisted suicide. Retrieved September 17, 2008, from http://www.lifeway.com/lwc/article_main_page/0%2C1703%2CA%25253D161683%252526M%2. [Context Link]
Guido, G. (2001). Legal and ethical issues in nursing (3rd ed.). Upper Saddle River, NJ: Prentice Hall. [Context Link]
Koloroutis, M. (Ed.). (2004). Relationship-based care: A model for transforming practice. Minneapolis, MN: Creative Health Care Management. [Context Link]
Kuz, K. M. (2006). Young teenagers providing their own surgical consents: An ethical-legal dilemma for perioperative registered nurses. Canadian Operating Room Nursing Journal, 24(2), 6-15. [Context Link]
Smith, K., & Daniels, S. (2002). Physician-assisted suicide: Examining a critical end-of-life-issue. Retrieved January 27, 2005, from http://www.ncfamily.org/PolicyPapers/Findings%200209-Assisted%20Sui.pdf. [Context Link]
Winzelberg, G., Hanson, L., & Tulsky, J. (2005). Beyond autonomy: Diversifying end-of-life decision-making approaches to serve patients and families. Journal of the American Geriatrics Society, 53, 1046-1050. [Context Link]
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