Its irrefutable that crowdfunding does good for thousands who otherwise could not afford their medical treatment. Internationally, many companies have formed alliances with not-for-profits to provide access to lifesaving surgery and medical care that would otherwise be unaffordable. Increasingly they have strived for financial transparency including metrics like number of cases treated, cost per surgery, and percentage of funds spent on overhead. Domestically in the US; family members and friends have also had varying degrees of success on sites where you can raise money for anything related to healthcare costs (think of the medical equivalent of Kickstarter/Indigogo). In places like the US we are also lucky to have the safety net of government protection and institutions like teaching hospitals were some services are available for free. Despite these opportunities- plenty of people globally fall through the cracks and find themselves helpless – not meeting the strict inclusion criteria for formal crowdfunding organizations or simply unable to crowdfund on their own.
Consider a patient from remote rural Nepal who falls into both cases. Our patient B. had just returned from Southeast Asia where he was working. Chief complaint: Traumatic brain injury. I wondered how they had got him on the plane in his condition (he reminded me of the dead migrant workers in Qatar being sent back to Nepal in coffins). We were looking at a young 30-something year old gaunt male. He stared up into space from the stretcher, unable to speak, and responding only to painful stimuli. From his belly protruded a feeding tube (I hadn't seen one of those in rural Nepal the past few months), and dark yellow urine flowed through a catheter inserted up his urethra. I read his typed out reports – hit by a car two months ago, 2 week intensive care unit stay after he was intubated, intracranial hemorrhage – no midline shift (and no surgical intervention), some type of arm fracture, feeding tube, and being sent back to Nepal since patient was 'stable' and off the breathing machine. His sister S., who had been a nurse at our hospital previously, held up one can of almost empty Ensure (powdered feeding supplement) that had been sent back with him. I discussed the difficult reality with my colleagues that we had little to offer the patient. No CT scanner for repeat brain imaging, no Neurosurgeon (likely wouldn't have helped anyway), and no on site physical therapy. I commented aloud about how terrible the situation was- and then didn't think much about it the next two days. Misery was in no short supply around here- and there were many other patients to help.
Two nights later I felt embarrassed when S. came and found me. I hadn't realized they were still in the hospital (the staff had carved out a private corner in the ER for B. rather than transferring him to the busy inpatient unit). I was on the hospital campus at the canteen getting my dinner and she sat beside me. 'Do you speak Nepali?' She looked hopeful (probably given my brown skin and dark hair). I didn't. However, I did speak Hindi fairly well and she seemed like she could get by. She asked me if I thought he would get better. I cringed and then discussed his slight improvement; she had mentioned he was drinking a little bit now and sometimes intermittently speaking one/two words. Yet he remained disoriented and unable to support his own body weight or control his bodily functions. I emphasized that the prognosis for traumatic brain injury was often poor but unpredictable. She understood. She apologized for interrupting my dinner... and then kept talking.
S. now worked at a nearby government health-post. She was a single parent with an infant daughter, and she also took care of her mother who lived with them (in what barely met the definition of a house). She started to cry as she told me her husband had divorced her, how she was in chronic pain from a leg injury, and how she now found herself completely responsible for her brother's care. She had raised B. since he was six months old and their father had passed away (I wondered how much older she could have possibly been at that time). Apparently he hadn't been able to send any money back while working- and in fact she had to pay some of his expenses while he was abroad. It's hard enough coming up with the right words in English to console grieving family members – it's even worse when you're trying to make a difference in another language. I had stopped eating – but S. motioned for me to continue – she even asked if I needed more roti. I could tell all she wanted was some concrete solutions and direction. She expressed unlimited gratitude that the hospital director had sent an ambulance to pick up her brother for free and the care we had provided thus far (not much to be honest). Now she was worried about three things: 1) How to get him a wheelchair 2) Whether we could write a letter stating B. was disabled that she could present to some Government disability program for migrant workers and 3) How she would get him the physical therapy he would need.
Non-government organizations (and governments for that matter) rarely have a discretionary fund to cover things like durable medical equipment, physical therapy and home-care. Clearly there are exceptions to this rule – some organizations do provide walkers, wheelchairs and the like upon discharge from the hospital (Partners in Health has been especially deliberate about figuring out what is needed for the complete care of a patient). There are also many groups devoted to donating specific supplies to where they are needed. For the most part though, worldwide– it is easier getting patients free vaccines, antibiotics, anti-retrovirals and anti-TB drugs, other lifesaving medications and even world class visiting surgeons than to get them 'stuff' or ongoing out-of-hospital services. We the donors are mainly to blame. We appreciate pictures of patients before-and-after surgery, we like our names/brands stamped on physical structures, but sometimes we forget the 1000 other things that are needed to ensure the well-being of a patient (such as food, housing, and supplies – not to mention the salaries of local staff or community health workers). Overall- it's not a stretch to say that all of us are reluctant to contribute our hard earned savings to such 'peripheral' interventions – fearing that our money will be squandered (interestingly Bill Gates pointed out in his 2014 annual letter that corruption or diversion of resources is an irrational fear). After a few brief years in Haiti and Nepal – I can honestly say that other supplies and services are often those that often matter most for patients and their families. We cannot hope to provide complete care without them since medical and surgical interventions are often just step one.
I have no idea what will happen to S. and her brother. We can certainly write her a letter about her brother's disability in a few days (since he most likely will not recover to be able to work again). Somehow she will take more time off work and present this piece of paper to the Government in the capital – but whether she actually gets any financial support is an entirely different matter. We will also figure out a way to get her a wheelchair (generous friends have helped me many times in the past when I've shared similar experiences of hitting roadblocks). For the physical therapy I suspect we will end up teaching her what needs to be done daily, so she doesn’t have to worry about the how, when or where to get him services. I'm less certain about the bigger issue though – the long term financial outlook for S. and how she will take care of her dependent family. As I prepare to part ways with her at the end of my meal, she has finally stopped crying. She asks me where I'm from and how long I've got left in Nepal. 'I feel like you were sent here for me.' I'd like to hope so, but in reality all I see is a woman at the start of another set of struggles. Plus, as my time in Nepal comes to an end – the important durable component of the entire healthcare system remains intact – the local staff who sacrifice to be in such a remote location, and continue to serve in the face of tremendous resource limitations. Perhaps not for B. - but for many of our other patients, their presence makes the world of difference.
2/17/2015
Varun Verma, M.D. is a board-certified Internal Medicine physician who splits his time as a Hospitalist at Brigham and Women’s Hospital (Boston) and as a Senior Clinical Advisor to Possible (Nepal)
@VarunVermaMD
Consider a patient from remote rural Nepal who falls into both cases. Our patient B. had just returned from Southeast Asia where he was working. Chief complaint: Traumatic brain injury. I wondered how they had got him on the plane in his condition (he reminded me of the dead migrant workers in Qatar being sent back to Nepal in coffins). We were looking at a young 30-something year old gaunt male. He stared up into space from the stretcher, unable to speak, and responding only to painful stimuli. From his belly protruded a feeding tube (I hadn't seen one of those in rural Nepal the past few months), and dark yellow urine flowed through a catheter inserted up his urethra. I read his typed out reports – hit by a car two months ago, 2 week intensive care unit stay after he was intubated, intracranial hemorrhage – no midline shift (and no surgical intervention), some type of arm fracture, feeding tube, and being sent back to Nepal since patient was 'stable' and off the breathing machine. His sister S., who had been a nurse at our hospital previously, held up one can of almost empty Ensure (powdered feeding supplement) that had been sent back with him. I discussed the difficult reality with my colleagues that we had little to offer the patient. No CT scanner for repeat brain imaging, no Neurosurgeon (likely wouldn't have helped anyway), and no on site physical therapy. I commented aloud about how terrible the situation was- and then didn't think much about it the next two days. Misery was in no short supply around here- and there were many other patients to help.
Two nights later I felt embarrassed when S. came and found me. I hadn't realized they were still in the hospital (the staff had carved out a private corner in the ER for B. rather than transferring him to the busy inpatient unit). I was on the hospital campus at the canteen getting my dinner and she sat beside me. 'Do you speak Nepali?' She looked hopeful (probably given my brown skin and dark hair). I didn't. However, I did speak Hindi fairly well and she seemed like she could get by. She asked me if I thought he would get better. I cringed and then discussed his slight improvement; she had mentioned he was drinking a little bit now and sometimes intermittently speaking one/two words. Yet he remained disoriented and unable to support his own body weight or control his bodily functions. I emphasized that the prognosis for traumatic brain injury was often poor but unpredictable. She understood. She apologized for interrupting my dinner... and then kept talking.
S. now worked at a nearby government health-post. She was a single parent with an infant daughter, and she also took care of her mother who lived with them (in what barely met the definition of a house). She started to cry as she told me her husband had divorced her, how she was in chronic pain from a leg injury, and how she now found herself completely responsible for her brother's care. She had raised B. since he was six months old and their father had passed away (I wondered how much older she could have possibly been at that time). Apparently he hadn't been able to send any money back while working- and in fact she had to pay some of his expenses while he was abroad. It's hard enough coming up with the right words in English to console grieving family members – it's even worse when you're trying to make a difference in another language. I had stopped eating – but S. motioned for me to continue – she even asked if I needed more roti. I could tell all she wanted was some concrete solutions and direction. She expressed unlimited gratitude that the hospital director had sent an ambulance to pick up her brother for free and the care we had provided thus far (not much to be honest). Now she was worried about three things: 1) How to get him a wheelchair 2) Whether we could write a letter stating B. was disabled that she could present to some Government disability program for migrant workers and 3) How she would get him the physical therapy he would need.
Non-government organizations (and governments for that matter) rarely have a discretionary fund to cover things like durable medical equipment, physical therapy and home-care. Clearly there are exceptions to this rule – some organizations do provide walkers, wheelchairs and the like upon discharge from the hospital (Partners in Health has been especially deliberate about figuring out what is needed for the complete care of a patient). There are also many groups devoted to donating specific supplies to where they are needed. For the most part though, worldwide– it is easier getting patients free vaccines, antibiotics, anti-retrovirals and anti-TB drugs, other lifesaving medications and even world class visiting surgeons than to get them 'stuff' or ongoing out-of-hospital services. We the donors are mainly to blame. We appreciate pictures of patients before-and-after surgery, we like our names/brands stamped on physical structures, but sometimes we forget the 1000 other things that are needed to ensure the well-being of a patient (such as food, housing, and supplies – not to mention the salaries of local staff or community health workers). Overall- it's not a stretch to say that all of us are reluctant to contribute our hard earned savings to such 'peripheral' interventions – fearing that our money will be squandered (interestingly Bill Gates pointed out in his 2014 annual letter that corruption or diversion of resources is an irrational fear). After a few brief years in Haiti and Nepal – I can honestly say that other supplies and services are often those that often matter most for patients and their families. We cannot hope to provide complete care without them since medical and surgical interventions are often just step one.
I have no idea what will happen to S. and her brother. We can certainly write her a letter about her brother's disability in a few days (since he most likely will not recover to be able to work again). Somehow she will take more time off work and present this piece of paper to the Government in the capital – but whether she actually gets any financial support is an entirely different matter. We will also figure out a way to get her a wheelchair (generous friends have helped me many times in the past when I've shared similar experiences of hitting roadblocks). For the physical therapy I suspect we will end up teaching her what needs to be done daily, so she doesn’t have to worry about the how, when or where to get him services. I'm less certain about the bigger issue though – the long term financial outlook for S. and how she will take care of her dependent family. As I prepare to part ways with her at the end of my meal, she has finally stopped crying. She asks me where I'm from and how long I've got left in Nepal. 'I feel like you were sent here for me.' I'd like to hope so, but in reality all I see is a woman at the start of another set of struggles. Plus, as my time in Nepal comes to an end – the important durable component of the entire healthcare system remains intact – the local staff who sacrifice to be in such a remote location, and continue to serve in the face of tremendous resource limitations. Perhaps not for B. - but for many of our other patients, their presence makes the world of difference.
2/17/2015
Varun Verma, M.D. is a board-certified Internal Medicine physician who splits his time as a Hospitalist at Brigham and Women’s Hospital (Boston) and as a Senior Clinical Advisor to Possible (Nepal)
@VarunVermaMD
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