Ebola patients are real people, deserving of more
**** UPDATE 8/2/14 *****
Any alarmist comment made out of ignorance about how Ebola is spread — particularly negative comments toward the two Americans being evacuated back to the US — will be deleted. This is the first time I’ve had to take such an action on my blog, but I will not have it used as a platform for disseminating mis-information.
In writing two pieces on governmental response to Ebola, I’ve read a lot about the Ebola outbreak in West Africa. I’ve been particularly interested in firsthand accounts, including news stories sharing the perspectives of doctors treating patients, people who have recovered from Ebola, and, of course, journalists‘ interpretations of how people are responding to the epidemic. They’ve all been really interesting. Sometimes, though, the statements by doctors have gotten under my skin. Many of the characterizations of the people who are themselves navigating the deadly outbreak fail to appreciate the greater context and are downright ethnocentric (e.g., this).
Then, I read this, which has single-handedly restored my faith in international medical personnel treating those suffering from Ebola. Dr. William “Billy” Fischer II, a doctor from UNC-Chapel Hill, went to Gueckedou, Guinea — what is considered the epicenter of the current Ebola epidemic — in late May to work with Doctors without Borders/Médecins sans Frontiéres. UNC collected and edited his emails home to give people an idea of the situation. Billy’s emails are moving. Here are a few excerpts:
June 2, 2014
Today was a pretty tough day – one of the first two patients I admitted on May 30 died. I walked into his room and he was on the floor half naked surrounded by bloody emesis and diarrhea. I put him back in bed, bathed him, and put fresh clothes on him and as I finished he died.
It’s pretty emotional to bathe a 27-year- old man who was incredibly strong and rendered completely helpless. His sister is next door and will likely die in the next hour. This is all in front of the other patients in the room, many of whom are family members or neighbors. The despair is suffocating.
June 3, 2014
Unfortunately we also have an 18-year-old woman who is 5 months pregnant, has Ebola, and malaria. I thought being 18 was tough – I can only imagine being pregnant, infected with a near uniformly fatal virus, having malaria, and being in an isolation zone treated with people in space suits. The clinical course of pregnant woman with Ebola is not good, to say the least, and unfortunately she began having contractions overnight and we “helped” her deliver a non-viable fetus this morning. Miserable.
June 4, 2014
Part of what makes Ebola so devastating in addition to the manner in which people die, is that this virus wipes out families. It penalizes those families who are close and transforms tradition into transmission. The 18-year-old pregnant woman that I wrote about yesterday died. After delivering she continued to hemorrhage despite oxytoxin and uterine massage.
When her husband was told about this he responded with, “ma vie est fini” (“my life is over”). Ebola has killed his mother, his mother-in-law, his wife and their unborn child. I worry that when the fight leaves a person the body is quick to follow. Similarly, when a woman died last week, her mother, who was also a patient and improving, soon followed. I’m not sure that there is anything worse than dying with despair after watching your child die.
Despite all this suffering there are moments of hope. There is one older man, who, as soon as I walk in, starts doing calisthenics to demonstrate his clinical improvement. I can’t help but smile and he has started doing them when he sits outside and we walk by – he is the first person I look for when I arrive at the isolation center. Another younger man has started to do well and I anointed him team leader for his room. He has embraced this role brilliantly by helping the other patients in this room encouraging them to drink and helping to translate Kissi into French for me.
And this is the one that broke me down into tears:
June 8, 2014
As the reality of my departure nears I can’t help but feel some sense of guilt—guilt for not having done more, faster, and better. But I think this feeling emanates from the fact that I can leave and the patients in this epidemic can’t. Last night we admitted a young boy who was transported with his mother from Kueldou. They had been locked in a house for four days because they were symptomatic. Unfortunately the delay in presentation was significant as only the boy was admitted because his mother died in transit. A 9-year-old boy sat next to his mother as she died. Now he sits in the isolation ward alone.
His father and brothers walked the 25km today to the isolation ward as the family’s village has rejected them and reported that the father may have symptoms. The MSF team sent a car to pick them up but the father refused to ride given what happened to his wife.
Fortunately, the 3 other siblings do not have symptoms but I’m concerned it’s only a matter of time as the father walked 25km with one of the children tied to his back exposing him to potentially infectious sweat. The estimated 21-day incubation period of Ebola complicates contact tracing given that people can theoretically be symptom free for 3 weeks following exposure. Since we can’t hold the family in the isolation ward for 3 weeks we can only test them now and formulate plans to follow them in case they do develop symptoms.
When the 9-year-old was brought into the treatment facility he barely had a palpable pulse. When I met him he was weak, in pain, but incredibly stoic and most awfully alone. With fluid resuscitation we were able to get a pressure and with that a chance. His clothes were soiled and so we brought a new outfit for him. After some effort I got him to smile and in that smile I found false hope.
With Ebola you can’t have a good death. You are isolated from your friends, your family, your home. You are cared for by people whose primary focus is on stopping transmission from infected to susceptible and from patient to provider rather than comfort and cure.
These people often die without the comfort of a human hand, without seeing someone’s full face or even just knowing that a loved one is near. I think of all the death notes that I’ve written in the United States and the bulk of them usually include the sentence, “they passed away peacefully with family at the bedside.”
I didn’t get a chance to write that for this little boy. Despite the hope that his smile brought me, he died overnight. In the void of darkness he converted to hemorrhagic shock with massive vomiting of blood and I’m told he bled out on the floor of the isolation ward.
I can’t help but think about what his last days were like – being locked in a house with his mother by his family and his community out of fear; then watching his mother die in the back of a pick up truck, being placed in an isolation zone staffed by foreigners in space suits, and finally vomiting blood alone.
I am troubled that I’m not better at this – that I haven’t figured out a way to implement more advanced healthcare infrastructure that would allow us to save more. When this epidemic is over I am sure there will be more time for reflection but now there are more patients and more chances to help.
There are real people suffering from Ebola. Fathers, children, pregnant women. They are scared and the majority of them will die. The resources to stop Ebola are stretched thin. If you read more of Billy’s emails, you’ll note how few medical personnel there are. In Liberia’s capital, they’ve run out of space in the hospital for people suffering from Ebola.
If you are moved, I urge you to make a donation to Doctors without Borders — they’re supplying equipment and medical staff to multiple regions affected by the outbreak. And, judging at least from Billy’s perspective, they’re doing good work.