It can be difficult to concisely encapsulate some of the important work that Relentless does. Although not quite so simple in practice, it is easy to say that we provide clinical care, or teach workshops. Another way that Relentless serves the exploited is to help be an advocacy bridge between the beneficiaries/assistance programs and the health care system.
The best way I can think of is to tell a story and walk you through the process of what this can look like. The names and some of the details have been changed but this narrative is based on true experiences.
One afternoon I received a call from Janet, a staff member of an anti-trafficking aftercare assistance program located in a city other than where I live. She has just returned from meeting Darla in the hospital. Janet heard about her from a couple of Darla’s friends on the street who asked her team to see if they could help.
Darla is a foreigner trafficked by a mafia group for sex work in Thailand. She is controlled, but not “locked up”. She does not speak the local language, has very little money, and has long overstayed her visa. Most recently she had been working in one city but due to growing health problems decided to seek care in another city because she was afraid that she may be recognized. When she registered at the hospital she used another name altogether because she was afraid of immigration difficulties.
Darla’s problems were in fact so serious that she required major abdominal surgery. She woke up to find that she had a colostomy bag. She had no idea why she had to have the surgery or what her prognosis is. If there was any consent at all, it was rudimentary and uninformative. “We don’t speak English” was all the hospital staff would say. All she learned was that she is HIV positive with AIDS. And she was alone.
Janet meets Darla a few days after the surgery and she is nearly ready for discharge. They discuss details of an agreement and a consent form is signed. Darla is discharged and moves to the transition home of the AP. What would have happened had Janet not heard about Darla in time? To where would she have gone post-discharge – with a colostomy bag and a new diagnosis of AIDS?!?
Unfortunately, the hospitals aren’t in the habit of sending patients home with a tidy packet of discharge summary, follow up appointments, helpful patient information handouts, etc. The nursing education regarding how to care for a colostomy consisted of giving her a book to read about it. “We don’t speak English”, they said.
I get a call from Janet right before discharge to ask me how they can prepare to have her at home. Fortunately, I had visited their program a month prior to teach about medicines, universal precautions, living with HIV/AIDS, and other things so they had some basic knowledge. The staff now was going to learn by jumping into the deep end with Darla moving in already!
I also review, with what little information (very few lab results, official diagnoses, surgical reports were provided) I had, Darla’s clinical situation and ensuring that a high standard of care is provided – even if that means augmenting the care where the local care lacks. For example, given her CD4 count, I can ensure that certain prophylactic medications are given. Regarding the colostomy, I call in a nurse friend living in that city who, in her American life, was an ICU nurse so I know she can do better than a pediatrician in addressing colostomy care.
When she started anti-retroviral therapy, I provided helpful information to Darla and the staff about side effects and what to expect, etc. ARVs are very toxic and the side effects are so awful that people often feel so much worse for a couple of weeks and struggle to continue to take them. Some of the side effects are very severe. Darla did experience such a reaction that she required a change in medication. There is no AIDS “help-line” or patient call-in service to discuss these problems, so having a health care professional able to help with such things is a huge help to both Darla and people like Janet.
There were many text messages, phone calls between me and Darla’s care team at the home. I was able to suggest medicines to buy over the counter to relieve symptoms. I could provide reassure them that a particular symptom was bothersome but not dangerous and provide anticipatory guidance about what to do in the case of “x, y, or z”.
Patient advocacy is a huge aspect of what APs have to do when caring for their beneficiary. Being an effective advocate means knowing what is the standard of care and how a patient ought to be cared for. The care and attention of hospital staff seems a bit strained and difficult, but this is “just how it is”. You do expect the long lines and run-arounds as routine in this system. However, at least in this modern city there are doctors who know what they are doing, their attitudes notwithstanding. You basically trust them to do the right thing and take appropriate care. You ask a few questions, and even though you are not as satisfied as you’d like, you accept the answers and follow up as planned.
The answers from the doctors were often not satisfying, the explanations too cryptic, and the follow up care and future planning was lethargic. To get as much information as possible, the team started photographing as many sheets of the chart as possible when they had the opportunity (a trick I started teaching other programs to do). That way I could at least follow some of what was being recorded. I equipped them with questions for the doctors and encouraged them to be strong advocates for Darla, even in the face of a health care system that is not accustomed to patients asking questions and demanding care.
There are many qualified and caring doctors around and I know many of them. The unfortunate bit is that you don’t always find them and a standard of care may exist in theory, but it is not enforced and certainly not practiced (as per my experience in dealing with victims of rape, abuse, HIV, and other health problems).
Unfortunately, one also has to consider various prejudices influencing the level of care being given. Darla had a couple of things against her from the beginning. To begin with, the color of her skin was not in her favor due to underlying prejudices. Furthermore, her foreign status, lack of local language and perhaps an assumption of her “occupation” also did not help. I’ve heard stories of HIV+ transgender women being turned away and told to just live out their karma and hope for a better life next time around. I’ve seen children with Down’s syndrome or cerebral palsy just turned away cold.
Darla’s conditioned eventually stabilized but she continued to develop new health problems related to her AIDS and her very low CD4 count. The reason for her intestinal problems was finally diagnosed as AIDS-related condition. Her care plan is getting settled, but her condition is still rather tenuous. We hope that she will be able to have a colostomy reduction, increase her CD4 count, and get her to a place of health where she can go back home and see her son.
I did get to meet her not long after her arrival at the home and I was able to do a full exam myself and explain and answer her questions – as many as I could. I’ve been able to visit on subsequent trips as well. She is a sweetheart of a person and a real joy. I know that her strong Christian faith as well as the community at the home has helped her a lot through this very difficult time.
It is ideal for all people who have suffered such exploitation and abuse to have relationships with knowledgeable and caring health professionals throughout their healing process. To have been put through so much, contract a horrible disease, then be left alone – that is truly tragic. This is one of the missions of Relentless: to stand in the gap and be a doctor, nurse, or caring advocate for those who do not have one. Another mission is to develop as many other health care professionals to see the possible trauma and backstories in each one of their patients – they probably won’t present with a “trafficked person” label on them. What sets Relentless apart is our cross-cultural health care experience and our experience in trauma-informed care.
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