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January 2010

“Coming Face to Face with Cancer ”

The Schwartz Center Rounds is a series of multidisciplinary forums where caregivers discuss challenging emotional and social issues that arise in caring for patients. 

Names and clinical details have been altered to protect confidentiality.

Presenters: Pediatric oncologist (Dr. A), pediatric intensivist (Dr. B), pediatric residents (Dr. C), social worker (Ms. W), PICU nurses (Nurse P, Nurse Q, Nurse R), hospital chaplain, case manager

Abstract

A child with a rare and disfiguring craniofacial tumor, brought to the U.S for care, offers caregivers a multi-sensory experience of the disease that is so often invisible. This family from a developing nation brings a unique set of cultural, psychosocial, and ethical challenges.

Clinical Summary

Baby T, a refugee from a war torn African nation, was born with a rare craniofacial tumor that caused gross disfiguration and global developmental delays. At age 19 months, the tumor extended into Baby T’s oral cavity, extruded his left eye, and displaced his teeth. When two-year-old Baby T was discovered by rescue workers in a refugee camp, he was extremely malnourished, and the disfiguring mass had grown to 20 cm and developed infected ulcerations. Baby T was evacuated to a U.S. hospital where a biopsy diagnosed a germ cell tumor and CT scan revealed a very large mass with penetration throughout the child’s skull. Baby T underwent partial surgical resection and several rounds of chemotherapy with some response. The tumor load was reduced and Baby T did relatively well for several months until the tumor began to enlarge again. Neurosurgical and ENT specialists worked together to achieve further partial resection. Shortly thereafter, the mass grew further and compromised Baby T’s breathing, necessitating admission to the pediatric intensive care unit (PICU) for airway support. After many weeks in the PICU, Baby T passed away.

Issues Raised

Visceral Multi-Sensory Reactions
Baby T was described as an “engaging child” who was “horribly disfigured.” All of the clinicians and hospital staff involved in this case had difficulty dealing with the visual and olfactory impact of the externalized craniofacial mass. Nurse P described Baby T’s tumor as “horrific,” elaborating that is seemed to grow every shift, it smelled bad, and frequently bled out. Nurse Q concurred. Despite the appearance of the tumor, Nurse P also observed that there was “a lot of life in that room.” Nurse P shared memories of how Baby T enjoyed music, “danced” with his hands and beckoned her back to play whenever she tried to leave the room. The case manager noted that Baby T’s personality had a “magical” positive effect on people.

Dr. B expanded on the description of the tumor as “ugly, evil, and smelly” pointing out that what was unique was that caregivers could see it and smell it. For Nurse R, the sheer “ugliness” of this external tumor put “a face” on the internal, invisible cancers to which she had seen so many other patients succumb. This tumor added visual and olfactory components to an illness that is usually hidden, an experience which dramatically changed the caregivers’ reactions and plan of care. Everyone who came into contact with Baby T’s tumor was influenced by the visual and olfactory features. Bringing these senses into clinical oncology became a very challenging aspect of managing this case. Various members of the clinical team were traumatized by this case, both physically as the smell absorbed into their clothes and pores, and emotionally as they relived it in nightmares, and sought help from the hospital chaplain. The primary role of the chaplain in this case was to support the staff. He tried to be present on the unit after each dressing change to debrief with, and offer support to, the team.

Teamwork and Support
There were many players in this case which increased the challenge of team building. The social worker, Ms. W, noted that it seemed as if everyone in the hospital had a role in caring for Baby T and/or Mrs. T in some way. Ms. W described the team dynamics as similar to those within a family, full of arguments and reconnection, and summed it up by saying that this case brought out the best and the worst in the hospital staff. The nurses expressed appreciation for the physicians involved in this case, noting that they were always there to help and brought the team closer. The chaplain commended the entire staff, from secretaries to physicians, for working extremely well together on Baby T’s case. For Nurse R, the lesson learned from this case was to start meeting as a team and communicating across disciplines as early in a patient’s care as possible.

Communication/Language Barriers
As natives of an unstable African nation, Baby T and his mother did not speak or understand English and were dependent on translators. To address the language barrier, a combination of hospital interpreters and new acquaintances were called upon. As Baby T’s condition deteriorated, Dr. B, the pediatric intensivist, used a lay translator to communicate the poor prognosis to his mother. Mrs. T signed a DNR form, and the care coordination team focused on exploring disposition options.

Dr. C, a pediatric resident from a neighboring African country who spoke Mrs. T’s language, found this case both intellectually and emotionally difficult. Dr. C came on to the PICU service during the last two weeks of Baby T’s life. He sat with Mrs. T and realized that she was not aware of the implications of the DNR order she had signed and wanted to change it. Mrs. T told Dr. C that, in her opinion, a DNR order was akin to actively killing her son. Dr. C wondered whether Mrs. T was having second thoughts about her decision or whether she was actually absolutely unaware of what was coming clinically, and began questioning whether Mrs. T was getting proper interpretation. Dr. C tried to resolve his concerns about the quality of the interpretive services by observing as one of the family’s new friends undertook the role of interpreting. He noted that this lay interpreter omitted about 50% of the bad news being communicated and finally understood why Mrs. T’s clinical understanding was so impaired. It was an issue about which Dr. C cautioned the audience.

Parental Control
The nursing staff shared that Mrs. T essentially lived with her child in the hospital and was very involved in Baby T’s care. Although Nurse Q attributed Mrs. T’s demanding demeanor to her desire to hold on to every second she could get with her son, at times, this mother’s need for control interfered with the nurse’s ability to care for the child. Dressing changes were very painful to Baby T and were described by nurses as “a monumental task.” Mrs. T insisted on being involved and was frequently helpful. The nursing team realized early on that the process would go more smoothly, both physically and emotionally, if they relinquished some control to Mrs. T. Nurse R recounted one particular time when the bleeding was severe as she tried to change the dressing. Mrs. T wanted to do it her own way and, rather than resist, Nurse R stopped and allowed Mrs. T to have some control.

As the hospital chaplain worked closely with the team, he helped them appreciate the beauty of Mrs. T’s motherly love and dedication. For example, despite the obvious barriers, Mrs. T wanted to take Baby T outdoors to a public park to see the spring flowers blooming. As a mother herself, Nurse Q related to Mrs. T’s desire to maximize Baby T’s experiences and quality of life. In a gesture of compassion and compromise, Nurses P and Q brought spring indoors by donating pots of chrysanthemums and a watering can to share with Baby T.

Nurses P and Q noted that Mrs. T appeared to be living for her child and their level of concern mounted as Mrs. T shared more of her story. Mrs. T told Nurse P that the team could not let Baby T die because, if he died, Mrs. T would die too, as she had nowhere to go. Mrs. T had lost most of her family, could not return to her home country because of the instability and danger, and was certain that even if she found her surviving family members again, she would be killed because they had not been able to accept her disfigured child. All members of the care-giving team recognized Mrs. T’s own need for support and care. While the hospital chaplain was limited by the language barrier to basic prayers, Ms. W, the social worker, helped to identify an appropriate faith community outside the hospital and facilitated a supportive connection for Mrs. T.

Hope
When Ms. W spoke to Mrs. T, through an interpreter, she inquired about her hopes for the future. Mrs. T replied that she envisioned Baby T looking normal, going to school, growing up, and getting married. Ms. W felt that she needed to support Mrs. T’s hope. Ms. W understood how important and powerful hope is to all parents of children with cancer diagnoses. Ms. W noted that hope is a vital coping mechanism for parents as a child goes through treatment. Ms. W understood that she could not rush Mrs. T through the process of coming to terms with her child’s terminal prognosis. Together, Ms. W and the case manager worked collaboratively with Mrs. T to help her understand that Baby T was not going to be able to go home.

Dr. A, the oncologist, was initially a symbol of hope for Mrs. T. Dr. A related that, even when the treatment options were depleted, he intentionally pushed himself to go into Baby T’s room often, simply to offer support to Mrs. T through contact and interaction. Giving Mrs. T the cathartic opportunity to vent her anger and to direct her child’s care helped Dr. A to feel that he was continuing to serve a useful function. However, as her hope diminished, Mrs. T turned away from Dr. A. Feeling rejected, Dr. A tried to avoid upsetting Mrs. T further by limiting his visits to Baby T, then harbored feelings of guilt about withdrawing from this difficult case.

Futile Treatment
Several members of the treatment team began to question the use of resources in this case as the futility became clearer. During the last month of his life, the tumor grew so large that Baby T lost sight in his remaining eye, became deaf, and was unable to engage in the few activities that gave him pleasure. Dr. B raised the issue of appropriateness of further treatment. She challenged the team to consider: At what point could additional treatment be considered harmful? The team struggled to reconcile the clinical reality with Mrs. T’s unrealistic expectations and wrestled with questions such as: “Is it ever okay for a caregiver to apply paternalistic instincts?” Dr. B concluded that no matter how unreasonable Mrs. T’s expectations were, she had to take them seriously and begin discussions with sensitivity to her point of view.

Mrs. T ultimately consented to the team’s recommendation to provide supportive care only. The ventilator was discontinued and Baby T died peacefully with his mother present. After Baby T passed, Dr. B realized that Mrs. T needed to see her son worsen and bleed out to be convinced that there was no hope. Dr. B acknowledged that the team continued to provide care to Baby T for as long as they did because Mrs. T needed to go through the process to reach acceptance. In the end, Mrs. T was appropriately upset by the passing of her son, but was at peace. Dr. B commented that Mrs. T needed that time and came to believe that the treatment they provided was appropriate. Multiple members of the treatment team agreed that they were all at peace knowing that Mrs. T was at peace and they hoped that she would go on and be okay. The team later found out that Mrs. T was able to arrange to safely stay in the U.S.

Ethics of Providing Care to International Patients
While caregivers acknowledged that international pediatric cases are always challenging and sad, for Dr. A this case highlighted the ethics of bringing a child to the U.S. for complicated treatment. Although there was support from international aid organizations and foundations as well as preliminary dialogue about the clinical needs for chemotherapy and extensive neurosurgical and ENT procedures, Dr. A found himself wondering if he did the right thing by accepting Baby T from abroad. Nurse R shared that she did not regret the care they provided.

Nurse Q wondered how this case will affect future decisions to accept pediatric cases from developing countries. Ms. W suggested thinking through disposition plans for patients and families who cannot return to their countries of origin as part of the decision process. Panel participants agreed that it is essential to increase communication beforehand regarding cultural and political issues, funding, and social support systems as well as clinical prognosis.

Lessons Learned

• Confronting the hideous “face” of cancer had a powerful effect on caregivers, rendering mutual support among the health care team more essential than ever.
• When managing complicated or challenging cases, regular team meetings and open lines of communication should be initiated as early as possible.
• Clinical caregivers should be mindful of the potential for interpreter bias. Language barriers further compromise a patient or family’s clinical understanding when interpreters attempt to soften or withhold bad news.
• Giving patients and/or families a sense of control over their care can be empowering to them, and ultimately, helpful to caregivers.
• Patients and families need support as they process illness and may each need to move along the continuum from hope, to acceptance, to grief, in their own way.
• To aid the decision-making process when considering extending care to international patients, it is critical to gather key cultural and psychosocial information in addition to medical history.