Empowering Survivors of Torture & Human Rights Violations | Dinali Fernando, MD

Being an emergency room physician, particularly I have to say that one of the challenges is we're in a really busy emergency department. We have incredibly 90,000 patients a year. Any given shift you're running around the whole ER, on a 12-hour shift, you might see up to 60 patients, so one of the things that real challenging is finding the time.

Dinali Fernando,MD the Medical Director for the Libertas Center for Human Rights at Elmhurst Hospital in Queens New York. Dr. Fernando is the recipient of the 2018 Pearl Birnbaum Hurwitz Humanism in Medicine Awards by the Arnold P. Gold Foundation, presented at the Planetree International Conference on Person Centered Care.

Dr. Dinali Fernando at the Libertas Center for Human Rights

The work that our Human Rights Center does is really focusing on individuals who've suffered severe human rights violations or torture in their home countries for a whole host of reasons. It could be because of their political opinion, their race, their religion, the ethnicity, the gender, membership in a social group, etc.. What we do at our Center is we really provide them with comprehensive care, which is medical, mental health, legal and social services to really help them to rebuild their lives to gain independence and to contribute back to our society. A lot of these individuals are really incredible, really resilient and what they were being persecuted for oftentimes is the work that they were doing back in their home countries, which was advocating for the rights of their own people and got persecuted for that. They have so much that they can give back to our communities if they just get the support that they need to go through their process of healing after all that they’ve endured.

Background Working with Health Disparity Populations

I'm originally from Sri Lanka, I came here with my sister to go to college. Coming from a developing country and having seen, really the healthcare disparities between the developing world and the developed world, it was always my intention to contribute back to that community, to the underserved in some way, shape or form. So, throughout my education and my training, I’ve kind of had that always. Thats been at the forefront of everything I've done, I really wanted to do global health work, I got involved in doing global health work in grad school and then also in medical school and residency.

When I was a resident, I had two mentors my attendings at the time who were the two individuals who started the Libertas Center and they started it as a volunteer program. They asked any of his residents who were interested in doing this type of work to work with them. I started working with them as a resident and then I was exposed to this particular population, then just seeing how incredible the patient's themselves were and the really unbelievable experiences that they have had. Their ability to recover and our ability to help them in that process in how impactful that can be is really what kept me with this work and kept me motivated to continue doing it.

Barriers to Serving High Needs Populations

My particular specialties are; I'm an emergency medicine physician and this program was started out of the emergency department. The reason it was started out of the emergency department is because we're based in a public hospital, which is a safety net hospital. The community that we're in is largely, almost exclusively immigrant and so there's a large number of individuals in our community who are undocumented. The hospital exists so that these individuals can come to the hospital and get medical care and healthcare even if they're undocumented, even if they don't have insurance, because it's a public hospital.

Its for anyone who needs care. The thought was that survivors of torture don't speak language, they don't have access to health care, they're not going to know how to get connected to a clinic even if it's not an emergent health need. They're going to walk in through our ER doors, which is exactly what we found when we did the studies to evaluate for that. However, being an emergency room physician, particularly I have to say that one of the challenges is we're in a really busy emergency department. We have incredibly 90,000 patients a year. Any given shift you're running around the whole ER, on a 12-hour shift, you might see up to 60 patients, so one of the things that real challenging is finding the time.

We're very focused on what a patient comes into the ER, just for time reasons and when you're working with this population, you have to go a step above, you have to ask a few more questions to really identify them as a survivor. This is really one of the challenges for me and other providers working in such a fast-paced setting, it's having the time to do that and learning the skill set to do that effectively and quickly in a sensitive way. The key is, if we can identify them in the ER or even in the clinics which are really, really busy. If you can do the first step, in just identifying that this is a torture survivor. And, if you can connect the patient with the program such as ours where we have the time to spend several hours with them to really address all of the other needs that's already doing a huge service. It's really getting the training, the mindset and learning the skill set to do it effectively, sensitively very quickly. I think  that's a challenge that can be overcome but it's having the time.

The Importance of Cultural Sensitivity

I feel really fortunate because I'm at this hospital, because of where it’s located 71 percent of the residents in the Elmhurst area are foreign-born. Similarly, between Flushing, Corona, and Jackson Heights its between 60 to 68 % foreign-born. We are the most ethnically diverse neighborhoods in the country. I think the hospital, the administration and the providers throughout the hospital are very aware that this is the population that they're serving. Majority of our patients throughout the hospital don't speak English, we need interpreters for the bulk of our patients require interpretation.

I think inherently providers who are drawn to working with this population are the ones who come to Elmhurst who stay at Elmhurst Hospital and the administration is very aware of this. So they've really incorporated cultural sensitivity. The staff at the hospital come from very diverse backgrounds, have a huge language capacity amongst them and that's really a lot because it's not just a language capacity because they all come from different cultures. They're inherently aware of the cultural differences. In addition, our training with our residents and our medical students that's really incorporated about understanding different idioms of distress or different ways that patients might or might not express their pain in their symptoms and that's a very important thing for us as clinicians to learn with our program and in general.

For example, and I hate to stereotype but we found that with the older Asian population they don't complain of pain, they can have three bones fractured, they don't, they're very stoic because culturally in that day and age in their countries that's how they were raised. So we have to be extra sensitive about asking them; Do you want pain medication? That's really incorporated into the training because the administration, the residency program directors and the leadership recognizes that. That's really a key component to providing adequate care and effective care for our patients.

Human Rights Research, Resources, Utilization & Outcomes

A lot of the research work that we've done around the human rights work has really been looking at program evaluation, really looking at what works and what doesn't work for our clients. Looking at how we can better improve our program and better improve our services. We've looked at it in terms of how the resources are utilized and now we're looking at how resource utilization by our patients is affecting their outcomes. We're also in the process of trying to publish a lot of the data that we've had. We've had one or two studies published in the literature and then we're in the process of putting the rest of it out. We do have some preliminary data on our website, if anyone wants to learn more, we’re happy to talk with them if they contact us.

Critical Roles of Leadership & Training on Care Delivery

We think there's multiple folds but if I had to break it down, I would take two big components of that; the first is really having institutional support and that's key because having your leadership from the top up support you in what you're doing is really what you need in order to be able to start a program like this. We are a grant funded program, however we get an incredible amount of in-kind support from Mount Sinai Hospital which is our affiliated teaching hospital and without that level of support from the top up we would not be able to do the work. Having buy-in from your leadership, I think is really, really key.

Secondly, training and education, I think that's a second a really big component because where we get grant funding for our Center. We don't work in a vacuum we work within this big Hospital and we can't work in a vacuum so in order for us to effectively do our work, for us to get referrals throughout the hospital as these patients are getting care all over the hospital. Similarly, as our patients in our center they don't just get care in our Center, we give them services throughout the hospital in order for them to get effective care, culturally sensitive care. For providers to be trained and how to work with the complex needs of the patient. Education and training are key and that has to happen at the attending level, the resident level, medical student, nurses, all your auxiliary staff and so I think the second biggest component really is training and education and that has to be an ongoing basis especially in a teaching hospital where you have a lot of turnover.

Leadership Style Impact

There are several people who have had really an impact on my life and an impact on my leadership style but I would say it starts with my parents. It starts with my dad, who always saw the best in people who was very collaborative and really went out of his way to help everyone. He always instilled in me if someone is not acting right or doing right or something is not right, don't just judge them, always try to find out what else is going on because we're all human and when people are not acting as you would expect them to it’s because they’re probably having other stresses in their life. He would say, try to take the time to understand that before you judge them or get upset with them. Both my parents have always instilled in me be kind, because they always said you can get an education you can get money you can get rich but if you're not kind to other human beings that's what life is really about.

Then my mentors, I've had really amazing mentors throughout my training, I've been really fortunate in multiple levels and my two mentors who started the Libertas Center, I mean I really hold them in such high esteem because there are individuals who do the work for the work. They don't do the work for fame, they don't do the work for glory, they're so humble and down-to-earth and they do the work because they want to help the patients. It's not about what they gain from it, but it's what they can do for the patients. Seeing that kind of leadership style, I've been fortunate to have all of them as role models really to in fact influence my style of work.

Drive for Addressing Health Disparities

What really keeps me passionate about this work is the patients who we work with, despite the incredible adversity that they've gone through, really the unthinkable atrocities that they've had to face, really inhumane at every level, they rise above it. They survive it and they make their way here, they still have hope, they have so much resilience that they don't even recognize that they have but the fact that they've made it through multiple countries, lost family members, seen their family members tortured and they still made it here and they still have a smile on their face.

To me it is amazing, really seeing the fight in them, even if it might not seem like they have a fight in them, they clearly do because they made it this far.  In seeing their determination, their hope and their resilience, it's really what makes the work worth it. These are incredible human beings that I think all of us have the opportunity to meet them we’re really privileged, we are privileged to have met them. That said, If I wasn't a doctor, I think I would be either in the field of public health or social work because I think those are two fuels where I believe that you can have a really profound impact on a very large scale, on an individual level and a large scale.

Connecting Torture Survivors to Care

My last words would be for all of us in the healthcare field, in the Social Work field or legal field, if you have the opportunity to identify these survivors, consider it a golden opportunity. It's really our responsibility if you’re the person first point of contact for those patients. It's your and our responsibility to help them get connected to service, they might not encounter a professional who has the ability to do that for quite a while. Because, of language barriers, cultural barriers, not having access to resources when they get here. If you have the opportunity take that opportunity. It might not seem like you're doing much but if you can get them connected to the right services you can change their lives so just bare that in mind and take the time, even if it's a few minutes to do that.

Humanism in Healthcare, Richard Levin, MD

"We are extremely interested in moving the power curve from a patriarchal classical circumstance in which doctors give orders & provide directions to patients to one in which the scientifically excellent care is developed together collaboratively". 

Dr. Richard Levin, is the President & C.E.O. of the Arnold P. Gold Foundation, a position he’s held since 2012.


Discussing Patient experience & humanism in medicine.

The relationship between doctors and patients has been existing and catalogued in the west for about 2,500 years and what is most important about it is the establishment of a human connection. The opportunity for the patient and doctor to be as close to one another as possible with trust, a sense of safety, a sense of the awesome responsibility that a doctor has to take care of a patient. Modern humanism and The Gold Foundation has been working on this problem for the last thirty years.

This is our 30th anniversary. The problem is more complex now because systems of care exist now where none existed previously. What do I mean? A system of care can identify a best practice which will involve the creation of a workflow; a series of work flows to manage an acute illness. Let's say that best practice was developed for the general population not for an individual and while compassion, integrity, empathy, responsibility, respect, resilience are all important attributes of someone who's practicing health care with humanism, humanism requires something more, something beyond patient centered care; A co-production of health. If there is a north star guiding the foundation's work right now, it's the recognition that we have become the champions of the human connection in health care over these 30 years.

We are extremely interested in moving the power curve from a patriarchal classical circumstance in which doctors give orders, provide directions to patients to one in which the scientifically excellent care is developed together collaboratively. A Nobel Prize in economics was awarded to the woman who originally came up with this notion that the best services will be co-produced by the receiver and the provider, not just the uni-directional in nature. Therefore, we are now going forward trying to make certain that in every health care encounter between a clinician and a patient we make sure that there is enough time, enough trust in the human connections so that the health care to be provided can be a collaborative decision of doctor and patient.

Co-Production of Health care

I'll give you an example of what I'm talking about; At the annual Jordan Cohen humanism lecture given at the annual meeting of the Association of American Medical Colleges last November, the talk was delivered by Don Berwick. The co-founder of the Institute for Health Care Improvement and for a while President Obama as director of CMS responsible for the development of Medicare and Medicaid services throughout the country. He has been a leader in the reform movement in health care. He suggested that the things that patients could be taught to do themselves so that they had a sense of greater autonomy in caring for themselves and dealing with an illness were much greater then we currently give patients the capability of understanding.

He showed several videos in a research context of a young man who had a genetic disorder that required a feeding with a nasogastric tube every night of his life while he slept. This young patient was taught to insert the nasogastric tube through the nose into the stomach by himself and he mastered it very easily. He then set up the infusion of the nutrients solution and took care of himself in that fashion.

Then he realized that one of the things that about illness that was really bothering the other pediatric patients he dealt with in the office when he saw them was this lack of autonomy, this lack of self-assurance capacity. He made a video to teach everyone how to do that, and it's very popular as it as an example of what the coproduction of health is actually about.

Things that the health care system provides but things as well including education in which the patient and family bring to the encounter critical elements that must be incorporated into their care plan. This is what we imagine will be the optimal patient experience in the mid-21st century and we are working with like minded partners across the country to try and make this a reality. When Dr. Berwick showed the video of this, there were gasps in an otherwise very sophisticated audience.

Chronic hemodialysis is extremely complicated and potentially dangerous. It requires making contact with an indwelling artery and vein with a catheter. Making certain that the site is sterile, making certain that the dialysis proceeds without to arrangements in the salt content of blood. It is quite complicated, but nothing beyond the sort of daily activities that any human might actually do. In a small study a number of people that have been taught to give themselves hemodialysis at home with the machinery necessary and all of the elements that make it safe for a given patient to do that. The sense of self actuation that allows a patient who is dealing with a chronic and serious illness, the failure of a major of working is astonishing and that's what the video revealed.

From the young child delivering nightly nasogastric nutrition to an older patient with renal failure kidney failure on chronic hemodialysis it is possible to involve the willing patient and family in entirely higher level of care and decision making than we have been used to in the past. Shifting that power curve from doctor, nurse, health system to more equality and collaboration with the patient and family we think it is a higher order of patient centric care.

Equipping Physicians for the Future of Medicine

Medicine has developed like any field over a very long period of time. There are few organizations, few fields that have survived 1,000 years of medicine and physicians have survived for 2,500 in the West if we mark the beginning with Hippocrates. For most of that time the only tool available to us was the surgical knife. We didn't have a drug of any variety that were in fact proven to be of value in the treatment of anything.

Penicillin became widely available in the 1940’s after being released first in 1928. And everything in the armamentarium, the CAT scans, the M.R.I. microsurgery, the ability to do robotic surgery, knowing about the anatomy of an internal problem but without cutting, all of that has happened in a very short period of time since the 1970. Physicians are trying to catch up to the changes that have occurred in technology all of which promised to return to them more time with the patient. That hasn't worked out as planned. The electronic health record unfortunately while developing rapidly is still a halfway technology. Most primary care physicians indicated in surveys that they spend two hours typing after seeing patients for every hour that they spend with patients in the hospital.

The annual survey by Johns Hopkins of a residence life indicates that probably 60% of their time is spent typing and those electronic health records at the moment are real time continuous wallets of practice issues, not the standard narrative that describes to anyone who wants to read it, including the patient and family, what the nature of the illness and the lives that they have led are actually like.

Barriers to Humanism in Medicine

We have extraordinary barriers, new ones of a disruptive technological age that have dramatically modified or what the experience of being ill what the experience of trying to remain healthy is actually like. We have the deep belief by most practitioners that molecular biology and the genomic age will indeed provide cures for most of the chronic illnesses that we encounter. That was a belief that began back at the beginning of this century and we now know that it's going to take years before those cures are available.

The notion that the cures and technology will take the place of the human connection is wrong. We need both and the touchstone for The Gold Foundation is scientifically excellent compassionate and collaborative care in every health care encounter. If we can reach that we truly will have an optimal health care system and the patient experience will be the best that it can be.

Medical education changed dramatically in the United States with the publication of the Flexner Report in about 1910. Abraham Flexner was an educator and was hired by the Carnegie Foundation to write a report about what medical education was like in North America. He spent a couple of years and visited most of the medical schools in Canada and the United States and published a report that showed that most medical schools were not up to the chore of producing doctors.

They were apprenticeships without a scientific method, the science underlying developing medicine was not emphasized or provided in this context. A better example of what medical education could be like were discovered at Hopkins University of Pennsylvania and Harvard using those as a model he proposed the system of medical education that we have in place now which is two years of deep inquiry into the sciences underlying the practice of medicine.

This was the method used in Europe in late 1880’s which is there are induced to revolution. We switch from wearing black coats to white coats, to identify the fact that we were practicing a new kind of science. The second two years of medical school were designed to be done in a teaching hospital. The requirement that he wrote was that those teaching hospitals have the same ethos, the same interests as universities that is education continued education of doctors.

That was the standard and remains the standard today and it has resulted in a kind of wonderful meritocracy which admits students based on their apparent capacities but does not take into account the E.Q. the emotional quotient of intelligence and does not take into account the inherent capacity of any applicant to communicate and communicate deeply with the patient in the model that we have discussed in the co-production of health.

The barriers to getting to optimal in terms of patient experience include everything from the selection process for medical students to the experience within medical school to the experience of becoming a doctor as a resident then and a young practitioner in which every element has been optimized not for the interaction with the patient, not to optimize the patient experience but to provide quality which is defined by efficiency and it's not enough.

We can do better and by taking a look at the epidemic of burnout of physicians and nurses because the systems are making administrators requirements on their time that should not be there all. Improving the health of the health care workforce and making that deep connection between health provider and patient in the coproduction of health. Those are the barriers that need to be overcome and it will take us probably another 25 years to get there. We've got a long way in defining what patient centered care looks like and I've suggested today that there's another step which is called the coproduction of health.

There are organizations in many countries that are approaching this problem logically and with a great deal of attention to what the experience of the patient is actually like. An organization known as PlaneTree which is headquartered in Connecticut has been accrediting hospital systems, health care systems, individual practices. I think in over 40 countries for 40 years this is their 40th anniversary and they have gone a long way to describing what is necessary to practice patient centered care from what must be provided architecturally all the way to the interactions that occur with patients at the most difficult moments of their lives.

Technology & Health Care

Technology has both allowed for revolution in the delivery of care and this will continue so that rather than spending six weeks in bed after experiencing a heart attack and having six months of physical therapy or disability after a hip replacement, patients without co-morbidities are sent home the day after a hip replacement. It's extraordinary the molecular cocktails that there are and will be available to treat cancers and other chronic illnesses are wonderful.

The electronic health record is transportable but it's not the design that is optimal. All of these technological wonders need now to be incorporated as physicians had done for these two millennia into a system of practice and care that shares the responsibility for the care to the extent possible with the patient and the family. I think it's not so far away, it's not so difficult for us to figure out how to do that as long as this is an accepted goal of the entire system with each health system contributing to it to the best that they can.