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Withholding aggressive seizure treatment from a child with severe intractable epilepsy: a case study.

Abstract: A child with severe intractable epilepsy, profound neurological impairment, and frequent and lengthy admissions to the hospital for repeated and prolonged status epilepticus has an uncertain quality of life. The benefit and ethics of repetitive, aggressive seizure treatment are in question. This case study describes a healthcare team's experience when it was decided to withhold aggressive seizure treatment from a child with severe intractable epilepsy and transition to a palliative care approach. The situation leading up to this decision and the ethical dilemmas, nursing issues and interventions, and lessons learned are reviewed.


Severe intractable epilepsy, accompanied by profound neurological impairment, can have a devastating impact on children and their families. Parents' hopes and dreams are drastically altered when they realize their child's future will likely include poorly controlled seizures, pervasive developmental delay, and an uncertain quality of life. Family life is disrupted by frequent and lengthy admissions to the hospital. Repeated and prolonged status epilepticus requiring intubation and admission to a critical care unit is an additional stressor. This is not only frightening for families, but also a challenge for medical and nursing staff. Some members of the healthcare team may question the benefit and ethics of repetitive, aggressive seizure treatment. When is enough, enough? What is in the best interests of the child?

This case study illustrates how a healthcare team dealt with the decision to withhold aggressive seizure treatment from a child with severe intractable epilepsy and transition to a palliative care approach. Included is a discussion of the ethical dilemmas faced by the team. Nursing interventions were designed to not only meet the needs of the child, but also those of her grieving mother. We conclude with the final outcome of this case and the lessons learned.


The Patient

Zahra S. was delivered by emergent C-section as a result of fetal distress. She was born after a full-term pregnancy complicated by gestational diabetes. Her birth weight was 2,930 grams, and her Apgar scores were 8 at 1 minute and 5 at 9 minutes. She had meconium aspiration, which necessitated a transfer to the NICU for intubation and ventilation. At 2 days of age, Zahra developed seizures characterized by jerking of the extremities and lip smacking. She was treated with phenobarbital. A computed tomography scan showed significant abnormalities consistent with hypoxia. After 1 month, she was discharged home with no further seizures and on no medication. At 2 months of age, Zahra had four generalized seizures requiring admission to the hospital and reinitiation of phenobarbital. This began an ongoing pattern of poorly controlled seizures exacerbated by frequent inter-current illnesses. By 1 year of age, Zahra had spent a total of 124 days in the hospital during seven admissions, five of which required admission to the pediatric critical care unit (PCCU) for intervention and ventilatory support.

At 8 months of age, Zahra had normal muscle tone, reached for objects, rolled, sat with support, laughed, smiled, fixed and followed objects with her eyes, and fed orally. By 1 year of age, however, she lost all skills, including meaningful interaction with her surroundings. She demonstrated profound global developmental delay with severe hypotonia, cortical blindness, and feeding difficulties. She required the insertion of a gastrostomy tube because of chronic aspiration and inadequate oral intake. An extensive genetic and metabolic work-up did not provide an alternative diagnosis. The medical team continued to attribute Zahra's seizures to her hypoxic ischemic brain injury at birth, and her regression was believed to be the result of repeated episodes of recalcitrant status epilepticus.

During her second year of life, Zahra had nine hospitalizations, three admissions to the PCCU, and 8 emergency room visits for status epilepticus management. She all costs and withholding or withdrawing life-sustaining treatment. Agreeing to allow their child to die is a decision no parent wants to face. Ambivalence is common--"Am I making the right decision?" The overwhelming feelings of grief and fear of loss may limit parents' ability to make the decision (Kenny & Frager, 1996). Accordingly, the physicians told Mr. and Mrs. S. that a treatment that caused their child to be in a comatose state and on a ventilator for an indefinite period of time with no hope of improvement was not a suitable option. As well, they considered CPR a futile measure that would only prolong her suffering; they recommended not offering this intervention if she went into respiratory or cardiac arrest. They emphasized that Zahra had a poor long-term prognosis and extensive, permanent damage to her brain. The time had come to focus on comfort, not cure; consequently, they communicated the plan to withhold any further midazolam infusions, extubate Zahra, and transfer her to the neurology unit for palliative care measures. Although Mr. and Mrs. S. were saddened by the potential outcome, they agreed this action would ease their child's unnecessary suffering and was in her best interests. They told the team they would leave Zahra's fate with Allah. According to the Muslim religion, prolonging life by artificial means is strongly disapproved of unless there is evidence the intervention will lead to a good quality of life (Gatrad, 1994). Of note, if the family had objected to the team's decision, the PCCU physicians and an attending neurologist would have recommended further consultation with a bioethicist and patient representative.

When Is Enough, Enough?

Deciding when enough is enough requires careful consideration. In a technologically advanced healthcare system with a focus on cure, healthcare professionals often find it difficult to contemplate the option of withholding treatment even when they believe the treatment is of no benefit. When dealing with children, this is even more complex. Bartholome (1991) claims choosing to withhold or withdraw life-sustaining treatment is an ethical or moral decision about appropriately using healthcare professionals' knowledge and technology. He views such decisions as a shared responsibility. Because a young child with a severe neurological impairment cannot express his or her wishes, the healthcare team and the family must first determine what is in the best interests of the child (Carnevale, 2001). This is described as the balance of potential benefit over potential harm or distress resulting from the pursuit of a particular treatment (Bioethics Committee, 1986). They then need to determine futility, which is defined as no reasonable hope for medical benefit from treatment, while, at the same time, understanding families may perceive prolonging their child's life as another kind of benefit.

Finally, they must identify the child as dying. In doing so, they take into account the

* extent to which therapy is having no or little effect on the anticipated course of the disease

* refractoriness of the disease to treatment

* trajectory of the disease process

* subjective feeling by the caregivers that they are engaged in a fruitless endeavor (MacLean, 1996).

With respect to Zahra, the team responsible for her care believed it was acting in her best interests, that aggressive treatment was futile, and that it was unlikely she would survive for a long period of time in view of her compromised state. The decision to withhold aggressive antiseizure treatment and CPR was deemed appropriate.

Facing Further Ethical Dilemmas

Once Zahra was weaned off the midazolam infusion and extubated, she was transferred to the neurology unit for ongoing care. She continued to have constant seizures, began to vomit repetitively, and required frequent suctioning for copious secretions. This was distressing for both the family and the healthcare team to watch. The palliative care team was consulted for advice on appropriate comfort measures. Their suggestions to give regular morphine, remove all monitors, and not provide alternative nutrition created much debate. Many questioned whether the unknown benefit of morphine outweighed the risk of respiratory depression. A brief trial of morphine produced no noticeable results. It is not known how to assess whether morphine decreases the level of suffering in a child experiencing status epilepticus. The nursing staff objected to removal of the oxygen saturation monitor because it provided an initial alert to the need for deep suctioning. While some believed parenteral nutrition should be used to compensate for Zahra's lack of tolerance for gastrostomy feeds, others felt fluid maintenance was sufficient. Another issue concerned continued attempts at seizure control. Those involved in her care wondered if Zahra should continue to receive AEDs, or if doses should be increased or a new AED added. This unique situation posed ethical dilemmas about the implementation of active treatment to achieve comfort, while not unnecessarily hastening death or prolonging an inevitable outcome. The disparity in views and opinions inherent in this type of circumstance was interfering with a consistent approach to care. It was imperative to develop a plan that everyone felt comfortable implementing.

Working with a bioethicist and the palliative care team, the neurology unit's multidisciplinary team met to come to a consensus on two main issues: a) the extent to which Zahra should be treated to achieve seizure control while not hastening death or prolonging an inevitable outcome, and b) what constitutes comfort measures versus treatment. This meeting gave everyone the opportunity to express their concerns and participate in the development of a mutually agreeable plan.

The bioethicist indicated the principle of "double effect" could justify giving high doses of phenobarbital in an attempt to attain improved seizure control. The premise of this ethical principle is that actions and omissions are permissible only when grave effects are allowed for good reason and are unintended (Garcia, 1995). In other words, it is permissible to give high doses of phenobarbital if the intent is to reduce seizures and provide comfort, even though this action could lead to respiratory depression and possibly hasten death. After much deliberation, the team members agreed this approach could be construed as a form of euthanasia, and decided this was not an acceptable plan. Past experience with Zahra led everyone to believe the levels of AEDs necessary to achieve cessation of status epilepticus would cause respiratory depression and arrest before stopping the seizures. Without the option of intubation and ventilation, this act would most likely hasten her death. The team also questioned whether cessation of seizures was truly a comfort measure for Zahra or just a way of easing the distress of those witnessing the disturbing sight of a young child seizing constantly. It is assumed that a child with profound cognitive impairment who is unresponsive and is having continuous generalized seizures is not suffering. Therefore, they needed to objectively consider whose interests were being served by giving potentially lethal doses of AEDs. As a compromise, they decided on conservative treatment of the seizures. Based on standards of practice and careful titration, the neurologist prescribed maximum doses of selected AEDs such as phenobarbital, while ensuring that toxic side effects, in particular respiratory depression, were minimized.

The team also determined further comfort measures. The treatment plan aimed to normalize her temperature, address identified infections, stop the emesis, increase her tolerance of gastrostomy feeds, and limit painful invasive procedures such as bloodwork. The ultimate focus was to maximize her comfort while not prolonging the inevitable outcome. Mr. and Mrs. S. agreed with this plan.

Nursing Interventions and Issues

The nurses on the neurology unit developed a nursing plan of care that involved basic comfort measures such as suctioning, repositioning, meticulous skin and mouth care, and daily bathing. Further comfort measures included administration of acetaminophen for fevers, antiemetics for emesis, and periodic additional AEDs such as lorazepam and paraldehyde. For consistency, the nursing leaders arranged for a core group of nurses to assume responsibility for Zahra's care. These nurses had decreased patient assignments to allow sufficient time to tend to Zahra's needs and support her mother. They gave Mrs. S. the opportunity to take part in Zahra's care to the extent she felt most comfortable. During this time, Mrs. S. was quite distressed by the situation and was often unable to provide the care needed, even though she had the necessary skills. Mrs. S.'s need to have private time to participate in religious rituals was recognized and respected. The nurses also made a strong plea to the extended family to take turns coming to the hospital to support Mrs. S. Due to the commitments of other family members, however, the only person available was Mrs. S.'s mother-in-law, who was elderly and unwell. Unfortunately, this appeared to be more of a burden than a help.

When Zahra's blood pressure dropped and the seizures remained incessant, the team summoned the family to come to the hospital. Numerous family members arrived as requested, but this gesture of support was brief as her condition stabilized. It was evident the nurses needed to act as Mrs. S.'s primary means of support. Providing comfort to Mrs. S. was as important as meeting the needs of her child.

Many of the nurses initially struggled with the change to a palliative care approach. They spent almost 3 years caring for Zahra with the focus on stopping the exacerbation of her seizures. Some nurses had difficulty reconciling this change in focus. Although they agreed this approach was ultimately in Zahra's best interest, they felt helpless watching her seize repetitively and knowing they could not provide the level of treatment to stop the seizures. Despite the knowledge that comfort measures are being provided, witnessing continuous seizures without effective intervention is emotionally draining.


After 3 weeks of continuous seizing, Zahra's seizures suddenly stopped. Whether or not this was a result of the initiation of a new AED was unclear. Regardless, Mrs. S. and the nurses welcomed Zahra's restful state after weeks of unrelenting seizures. Because death no longer appeared imminent, the team and family decided to transfer Zahra to the palliative care unit at a pediatric chronic care facility. Just prior to the transfer, Zahra had her third birthday. On the advice of the palliative care nurse, the nurses decided to ask Mrs. S. if she would like to have a birthday party to commemorate the day. Mrs. S. was delighted at this prospect, and it seemed to revitalize her interest in Zahra. On the day of the party, she dressed Zahra in a new dress, put a bow in her hair, put her in her stroller, and got her ready for the celebration, which included a birthday cake, ice cream, gifts, and the singing of "Happy Birthday." This simple gesture helped Mrs. S. participate in an activity with her daughter that most parents take for granted, giving her joy during a sad time.

Zahra spent 6 months on the palliative care unit. She remained relatively stable, but had occasional respiratory infections and worsening of her seizures. She was transferred to a long-term chronic care unit, and spent occasional weekends at home. Sixteen months after the healthcare team began withholding aggressive treatment, Zahra developed pneumonia and overwhelming sepsis, was admitted to the hospital, and died with her parents present. A short life fraught with disabling seizures, invasive medical interventions, and uncertain quality of life had ended. On a happier note, Mrs. S. gave birth to a healthy baby girl four months later.

Lessons Learned

The case of Zahra created many challenges and learning opportunities. Based on lessons learned, the healthcare team recommends the following

* Recognize when treatment efforts are of no benefit and consider the option of withholding or withdrawing treatment.

* Remove the burden of decision-making from the family when a treatment option is of no benefit or clearly inappropriate.

* Access additional resources such as a bioethicist and palliative care team.

* Acknowledge differing values and opinions related to ethical issues.

* Encourage all teams who mutually care for a patient with complex needs to participate in multidisciplinary and family discussions early on.

* Achieve team consensus on a consistent plan of care.

* Identify comfort measures versus treatment and clarify the focus of care.

* Negotiate with the family regarding the level and type of support required.

* Incorporate normal life activities and celebrations into the plan of care.

* Recognize that care of parents can be as important as the care of the child.

This experience encouraged the team to take a closer look at their practice and consider what was in the best interests of a child who could not make her wishes known. Although it is difficult to evaluate, the team hoped this change in care approach gave Zahra a better quality of life.


We thank Dr. Shelly Weiss, pediatric neurologist, and Dr. Christine Harrison, bioethicist, for their assistance with this paper, and the 6C nurses at the Hospital for Sick Children for their dedication and care of Zahra and her mother.


Bartholome, W.G. (1991). Withholding/withdrawing life-sustaining treatment. In M.M. Burgess, & B.E. Woodrow (Eds.), Contemporary issues in paediatric ethics (pp.17-40). Queenston, ON: Edwin Mellen Press.

Canadian Paediatric Society Bioethics Committee. (1986). Treatment decisions for infants and children. Canadian Medical Association Journal, 135, 447-448.

Carnevale, F.A. (2001). Striving to care: Embracing the moral foundations of nursing. Registered Nurse, July/August, 7-9.

Garcia, J.L.A. (1995). Double effect. In W.T. Reich (Ed.), Encyclopedia of bioethics (Rev. ed., Vol. 2, pp. 636-641). New York: MacMillan Library Reference USA, Simon & Shuster MacMillan.

Gatrad, A.R. (1994). Muslim customs surrounding death, bereavement, postmortem examinations, and organ transplantation. British Medical Journal, 309, 521-523.

Kenny, N.P., & Frager, G. (1996). Refractory symptoms and terminal sedation of children: Ethical issues and practical management. Journal of Palliative Care, 12(3), 40-45.

MacLean, B. (1996). Care of the dying child: Withholding and withdrawing life-sustaining treatment. In: A. Lynch (Ed.), The 'good' pediatrician: An ethics curriculum for use in Canadian pediatrics residency programs (pp. 243-269). Toronto: The Pediatric Ethics Network.

Questions or comments about this article may be directed to: Colleen DiIorio, PhD RN FAAN, by phone at 404/727-8741 or by e-mail at She is a professor in the Department of Behavioral Sciences and Health Education, Rollins School of Public Health, Emory University, Atlanta, GA.

Katherine A. Yeager, MS RN, is a research nurse senior in the Department of Behavioral Sciences and Health Education, Rollins School of Public Health, Emory University.

Barbara H. Donahue, MA, is an information analyst in the Department of Behavioral Sciences and Health Education, Rollins School of Public Health, Emory University.

Jill Wasserman, MPH, was a graduate student at Emory University, Atlanta, at the time this article was written.

Andrea Postier, MPH, is the research coordinator at Gillette Children's Specialty Healthcare, St. Paul, MN.

Lynne Broderick, MPH, is the grant research specialist at Shepherd Center, Atlanta, GA.
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Title Annotation:Award Winner
Author:Boyd, Jennifer R.; Hebbard, Mara
Publication:Journal of Neuroscience Nursing
Date:Apr 1, 2004
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