Tirhas Habtegiris Case: Medical History

Due to the highly damaging nature of media reports on this case and Baylor's inability to set the record straight in any other way, we believe the following information from the medical record must be disclosed in order to respond to the serious misrepresentations in the public domain and questions raised by the Texas Advance Directives Coalition, other health care providers, the media and other interested parties who have contacted us. Our goal is to correct the incorrect, misleading and inflammatory statements in the public record.

Until now, Baylor was unable to provide this information because of legal constraints on the release of medical information under HIPPA and state law. We have now been released from those constraints by court order. Baylor is committed to protecting and respecting patient privacy; therefore, despite the current situation, we are withholding certain personal information out of respect for Ms. Habtegiris and her grieving family.

Tirhas Habtegiris: medical condition, treatment, and death (synopsis)
Ms. Habtegiris, a 26-year-old Eritrean immigrant and resident of Dallas County, was diagnosed with incurable, widely metastatic angiosarcoma from her abdomen to her lungs in August 2005 at a non-Baylor hospital in Plano, Texas. Following this diagnosis, she was treated with radiation and chemotherapy at a Dallas hospital affiliated with the local medical school. Unfortunately, the cancer did not respond to treatment and she did not do well. She was evaluated by specialists in end-of-life care at that hospital and eventually discharged to home on November 7, 2005 with palliative medications designed to treat symptoms such as pain and shortness of breath and an appointment for outpatient follow-up in the hospital's palliative care clinic.

Eight days later, on November 15, 2005, having developed increasing pain and shortness of breath, an ambulance was called to her home. She was in obvious distress. Ambulance records indicate she was placed on supplemental oxygen and the paramedics made plans to take her to the closest hospital (where in fact she had first been diagnosed with terminal cancer). Ambulance records indicate that either she or her family asked that she instead be taken not to that nearby hospital, and not to the medical school-affiliated hospital where she had recently been treated, but to a new hospital, actually further away from her home. That new hospital was Baylor Regional Medical Center at Plano. She arrived at the Emergency Department at Baylor with severe pain (8 out of 10 on a standard pain scale where 10 is the maximum) and respiratory distress. She was, in essence, actively dying. She was rapidly evaluated and found to have multiple bilateral lung masses, significant pleural effusions (fluid between the lung and the chest wall), and a 61 pound weight loss by her history, all compatible with the history she reported of cancer. She was treated with non-invasive ventilator support, oxygen, morphine, and IV antibiotics for possible infection. Shortly after admission to the hospital, however, her respiratory rate rose to over 50 breaths a minute and it was apparent that her death was imminent. She was intubated and placed on mechanical ventilation to save her life. Before becoming unresponsive and requiring intubation, she designated in writing two cousins as decision-makers for her if she was unable to make her wishes known.

On November 16, the internist and critical care specialist taking care of her arranged for an oncology consultation. The oncologist noted that her cancer was very aggressive, had been treated, and had not responded. It was noted that she suffered from a terminal illness, that there was no other effective treatment, and that palliative/hospice care was again recommended. Both internal medicine and critical care specialists agreed.

On November 17 and 18, the patient continued to decline. The nurses noted that she required increasing doses of medications to treat her pain and other suffering. The combination of these medications, her underlying terminal illness, and mechanical ventilation made it impossible to effectively communicate with her, even with non-verbal techniques. Her doctors recommended the placement of a tube in her chest for the purpose of draining the pleural fluid. It was their hope that this would allow a partially collapsed lung to re-expand and at least improve her condition for a short while. Because she was unable to communicate as noted above, one of the cousins she had appointed as her decision-maker consented to this procedure. The tube was inserted and a large amount of bloody fluid was withdrawn. Unfortunately, the fluid rapidly re-accumulated due to the untreatable cancer in her chest. All three specialists explained to the family that the doctors at the prior hospital were correct - the patient was terminally ill and there was no effective therapy available that could even slow down the cancer, let alone cure it. They explained that further life-sustaining treatment was prolonging her dying and increasing her suffering without benefit of possible cure, and they too recommended palliative/hospice treatment, including removal of the mechanical ventilator while maintaining aggressive comfort measures.

During the time from November 19 to 21, a different oncologist saw the patient and agreed with the first oncologist (as well as those at the prior hospital where she was treated) that removal of the ventilator with palliative or hospice care was the most appropriate treatment. The two cousins, whom the patient had designated to make decisions for her if she was unable, indicated they could not make such a life and death decision and expressed a desire to await the arrival of other family, including at least one family member coming from Germany. Nurses continued to note clinical signs of suffering and continued to adjust narcotics and sedative drugs appropriately. Periodically throughout the hospitalization, the nurses and physicians would attempt to decrease the medications being used to treat the patient's severe pain and distress in hopes they might communicate directly with her. Not surprisingly in a patient such as this, each time they tried to do this, the patient's grimacing, flailing, and intolerance of the ventilator increased to such a degree that the pain and sedative medications again had to be increased. On November 21, social work records indicate that the patient would qualify for Medicaid coverage for her hospital stay. Medicaid is a joint federal - state program offering health care coverage to certain persons.

On November 22, now seven days into the patient's hospitalization on a breathing machine in the ICU without any signs of improvement, other family members finally arrived, including two persons who introduced themselves as brothers of the patient. A multidisciplinary group of health care professionals including physicians, a nurse, a social worker and a chaplain met with the family and attempted to help them understand the patient's imminently terminal incurable illness, the fact that treatment was prolonging the process of dying, the fact that the treatment was increasing the patient's suffering, and the recommendation of all caring for her that it was time to remove artificial life support and provide "comfort treatment only." The family was unable to accept this recommendation for a variety of reasons. It became increasingly apparent that there were irreconcilable differences of opinion between the medical professionals and the family as to the most appropriate treatment for this dying patient. On this day the social work progress notes reflect that the Texas Advance Directives Act dispute resolution process was explained to the family. This would be explained many more times before finally being invoked.

On November 23 a 90-minute meeting among the family, a nurse and physician from the ethics committee, physicians from internal medicine, critical care medicine, and oncology and representatives from pastoral care and social work occurred. The family continued to insist that no treatment could ever be stopped, at which time the Texas Advance Directives Act dispute resolution process was explained again. Nursing noted that even after this meeting many questions from the cousin and brother were answered. The family had expressed a desire to bring the patient's mother from Eritrea and the social worker noted her previous and ongoing efforts to assist in bringing the patient's mother to America such as writing letters and calling the relevant U.S. Embassies. Baylor offered to pay for the services of an immigration attorney to assist the family.

From November 24 to 27, the patient continued her inexorable decline from terminal cancer as she did throughout her 27-day hospitalization. Doctors again noted that they discussed the Texas law in regards to family - physician disputes over medically appropriate treatment at the end of life.
On November 28, now 13 days into the patient's mechanical ventilation in the ICU, the nurses again noted, as they often did throughout the hospital stay, the ongoing discomfort of the patient and the need to further adjust her symptom medications. The family reaffirmed to the social worker that they would never be able to decide to remove life support. The social worker gave the family the written 48-hour notice of a more formal review process with the hospital ethics committee as required by the Texas Advance Directives Act when physicians wish to stop treatment on a terminally ill patient and the family disagrees. The family was also given a written statement explaining the process that is followed under the Act when such a disagreement arises, as well as a list from the Texas Health Care Information Council of possible alternative providers, all as required by the Act.

On November 30, the family met with the ethics committee for the final formal review of the case. The ethics committee ultimately decided to support the recommendation of the treating physicians to remove life-sustaining treatment and focus on comfort care only. The social worker noted that she had spoken with US officials in Washington, DC and had attempted to contact the U.S. Embassy in the patient's home country. The social worker also started contacting multiple health care facilities to determine if a different facility and medical staff would be willing to continue mechanical ventilation for this terminally ill patient.

On December 1, the family was given the written report of the ethics committee, affirming the treatment decisions of the primary team that further life-sustaining treatment was medically inappropriate and would be withdrawn on the eleventh day (December 12) unless an alternative willing provider was found or the family obtained a court order delaying such removal.

From December 1 to 5, the social worker's and physician's notes reflect further search for an alternative willing provider - that is, another facility and medical staff willing to provide the life sustaining treatment that the Baylor medical staff as well as the first treating hospital's medical staff felt was no longer medically appropriate.

On December 6, the social worker's progress notes again report that the family could not accept the discontinuation of life support. The family asked about a lung transplant and were provided with an explanation why that was not a medically viable option. On this date, the social worker also noted that the family had decided against trying to bring the patient's mother to America for their own reasons and they declined further assistance from Baylor.

Physician progress notes from December 7 and 8 reflect further meetings with the family, attempting to help them understand the patient's condition, including plans to remove the mechanical ventilator and allow her to die naturally on December 12. Meanwhile, the patient demonstrated increasing distress on the ventilator and the morphine and sedative drugs were increased once again to address the patient's obvious pain and suffering.

From December 9 to 11, the critical care specialist noted that physicians at the original treating hospital again refused to accept the patient back, noting that they had no other effective treatment to offer. Ultimately, twelve different health care facilities refused to accept the patient in transfer. The nurses continued to maintain the patient's comfort.

Finally, on December 12, now the eleventh day after delivery of the formal written notice of the ethics committee's decision to support the recommendations of the treatment team, the critical care specialist tried one last time at the request of the family to allow the patient to awaken enough to communicate. She again demonstrated signs of severe distress. Sedation was again increased with two different medications to maintain the patient's comfort. Family, nurses, a physician, and a chaplain were in attendance and the social worker was directly outside the room with additional family, attempting to comfort them, when the patient was finally extubated and allowed to breathe naturally without further mechanical assistance. According to the physician and nurses, the patient died peacefully and rapidly. Her respirations stopped within seconds. The chaplain and social worker continued to console the grieving family.