Hospice and giving bad news

February 18, 2010

In the local Tanzanian and Maasai culture, bad news is a taboo subject. On multiple occasions in the hospital, I have witnessed this difference in custom from my own. I have helped to care for a premature baby girl who was delivered by C-section at 28 weeks because her mother’s placenta abrupted, or dangerously separated from the uterine wall. The baby’s name in Maasai means “Blessing.” Day after day she has been struggling to survive, sharing one of two functioning incubators in Selian Hospital’s “NICU.” Yesterday, after finishing a 10-day course of antibiotics for sepsis, she was gray and barely breathing. Resuming antibiotics, giving oxygen by nasal cannula, and starting medication to stimulate her breathing was all that we could offer her. Amongst the group of American and Tanzanian residents and medical students, we prepared ourselves for her likely impending death. I suggested that the Tanzanian intern explain to the mother the situation in Swahili. She curtly responded, “No, I cannot do that,” and walked away.

I returned in the afternoon to check on the baby, and she was in her mother’s lap attempting to take drops of breast milk from a syringe. She continued to look awful, barely breathing and unable to swallow. Again, I asked the nurse to explain to the mother in Swahili that her baby was very ill and even though we were trying everything possible to help her, she might not survive and she should prepare herself. The nurse rattled off in Swahili to the mother. She then looked at me and said, “I told mama that everything is going to be okay,” and turned away.

Despite this cultural resistance, Selian Hospital has become the epicenter of a hospice and palliative care movement in Tanzania. Today, I had the incredible opportunity to join the hospice team on a home visit. Ten of us climbed in a truck and drove up into the hills of Maasailand--the Tanzanian team included two palliative-trained nurses, a clinical officer in training, a social worker, and a community volunteer. While we waited in the truck for the patient to give permission for us Americans to enter her village (Wazungas, or white people, would perhaps draw unwanted attention to her), I opened a conversation about the local refusal to discuss bad news. Tumaini, one of the hospice nurses, explained that indeed her people were afraid of hearing about diagnoses or poor outcomes. She said that most would prefer not to know, to keep the truth hidden away from their own minds and the attention of their family and friends. Since the hospice service was created, this team serves thousands of patients in the community who are suffering from either cancer or severe, uncontrolled HIV. Tumaini described that the team approaches discussion of illness at a slow and cautious pace, taking cues from the patient and family about how much to disclose and when. She said that it often will take five or six visits with the patient to establish trust and friendship before the severity of the diagnosis can even be explored.

Sitting in a circle in one of two tiny rooms of her mud brick house, we listened to the translated story of Elizabeth. Her husband died last year after a long illness, leaving her with six children. After several hospital admissions for supposed malaria and multiple sero-positive tests that she refused to believe, she was diagnosed with HIV. She connected with the HIV clinic and just two months ago started anti-retroviral therapy. At that time, her CD4 count was 36 (in a normal healthy person, the CD4 is above 350). This was the first visit from the hospice team, and she was shy, concealing herself and her child in the darkness behind the door. The hospice nurses reviewed her medications--she assured them that she was taking everything prescribed. But this afternoon happened to be the time for the HIV clinic at the hospital, and she had forgotten her appointment.

The nurses then called upon me, the only physician in the group, to review and record her history and her symptoms, and to examine her. When I shook her hand, she smiled and stepped out from behind the door into the light. She then allowed me to examine her, sitting on a low stool in her cooking room and then lying on her bed abutting the muddy walls of her dank bedroom. As the hour-long visit proceeded, her face and body relaxed, becoming more comfortable with our imposing presence. The nurses then fully addressed her emotional and spiritual state. She felt she was coping better than several months ago, but she still had not shared her diagnosis with those in her village. We prayed over her, saying the Lord’s Prayer in Swahili, and the team sang out in bright tinny voices a hymn they all knew by heart. In the end, we decided that it was most important for her to make her appointment at the afternoon clinic. So she gathered herself, left her children with the neighbor, and climbed into the van to ride straight to the hospital. This is the first of many hospice visits with Elizabeth, but clearly a door was opened by the team that will allow her to regain her health and her confidence about living and surviving with her disease.