Equality, Quality, Respect in Health Care | Alan Manning

We talk all the time about consumerism in healthcare and quite honestly it's one of my biggest frustrations because I think consumerism is an entitled approach for the 1%. I know many people who consumerism for them is wherever the bus stops or wherever the subway stops. They're going to go where the insurance is covered,

Alan Manning is the Executive Vice President of Planetree International Inc..

Alan’s Story

What makes me passionate about health care actually is my daughter, I joined Planetree seven years ago now because I wanted to help change healthcare. I thought that the system was broken and I went on a national search looking for an organization that I thought could really make a difference, and I found this great place called Planetree. Because ten years ago, this past May my firstborn daughter was born and at two days old I got a call from my wife saying there's something wrong with Katie's heart. At four days old, Katie had her first open-heart surgery and over the next six months Katie had five open heart surgeries and four heart catheterizations before unfortunately she passed away when she was six months old.

So, actually next month is a ten year anniversary of my daughter's passing. It's actually really moving yesterday to be here and meet our founder of Planetree on the same day that this time 10 years ago sitting at my daughter's bedside in the last month I'll ever meet her.  My passion and my drive is my daughter, she's my inspiration for what I do. More than that, it's the people I met during her care, I met some amazing, amazing people who provide incredible care to patients, but I found a system that wasn't supporting them particularly well and I wanted to get involved and help and make a difference.

Surviving the Death of a Child

I tell people all the time, I'd be lying if I said it was a greater purpose, I miss her, I wish it never happen. I wish I never got involved in healthcare, I wish I didn't have to know what I know. But these are all, we all got paths, every one of us, so my story is my story, you have a story, everybody out there has a story and we just have to go on the journey we're on. I'm fortunate to have two wonderful boys who are eight and six and remind me of their sister every day and my wife and I started a non-profit in her honor and we helped critically ill kids in pediatric ICUs and the story I always tell people is when my daughter was born, I thought that she changed the world.

My heroes are Nelson Mandela and Martin Luther King and Mary Robinson the first female president of Ireland. When she got sick, and she passed away I didn't know that, that would happen but a couple of years ago, I got word of a girl back in Ireland where I'm from, who was seven years old and wasn't able to walk. Her name was Katie just like my daughter and my organization was able to sponsor her to come over to the United States to get a spinal surgery that allowed her to walk for the first time. So When I said that my daughter was going to change the world I was right in some small ways so she did have an impact on somebody else's life so her legacy lives on.

The organization is called Kisses from Katie Inc. and we help children, families and caregivers of kids of  pediatric ICU because although our outcome with our daughter wasn't what we wanted, we were actually very lucky. We had the financial resources, we had the education, we looked and sounded like the doctors, so we got along with them. We saw many people who didn't have the same access so we started an organization to help those people and today we do simple things. Our motto is to take the edge off and we do simple things like we pay mortgages for families who are getting ready to lose their house or pay their rent. We've bought washing machines for families, we assists by helping children get into the car, so very functional practical things, the things that really get in the way of people being able to live their life and live their truth in the way that they want.

Patient Experience & Health Care

Our experience at Planetree, we see that every patient struggles with the healthcare system, from the most affluent, to the least empowered. Obviously it gets harder, the lesser education, the lower wealth. We talk all the time about consumerism in healthcare and quite honestly it's one of my biggest frustrations because I think consumerism is an entitled approach for the 1%. I know many people who consumerism for them is wherever the bus stops or wherever the subway stops.  They're going to go where the insurance is covered, so we talked about these choices that patients have, but in truth our healthcare system doesn't provide people as many choices.

In fact when I think about what my work with Kisses from Katie Inc., I'll never forget watching them do open-heart surgery on my daughter in her room because I couldn't stabilize her to bring her downstairs and when the medical team came out, as they were talking to us, the girl in the next room coded. I ran in there and a mother came out she was crying and my wife and I went over to console her and I looked at her and said I think your daughter has the same thing my daughter has because everybody in ICU knows each other's business.

I said does your daughter have HLHS too and she said no my daughter has hypoplastic left heart syndrome HLHS? Her daughter was 6 to 9 months old and this poor mother didn't know that hypoplastic left heart syndrome was HLHS which means she could never read anything of the material. I mean she never understood anything the doctors were saying because they don't call it hypoplastic left heart syndrome, they call it HLHS. I looked and I politely said I think it's the same thing.

My heart went out to that mother that night because she was about 16 or 17 year old single mom. The night before, I heard her dad yelling at her through the wall, “if you hadn't put yourself in a situation none of this would have happened”. So, what chance does this mother, does this child have for success. Unfortunately, we don't have a system in America that help families navigate and traverse that define success. I think we spent too much time on sickness and medicine and not enough on understanding that this is just a part of people's life journey.

My goal for health care is a equality, quality and respect, it's that simple. I want a equality that everybody gets access to appropriate care. I want to make sure that the care they get is top quality care. I want to make sure that they're dignified and respected through that process.

Revisiting the Ethos of Health Care | BJ Miller, MD

We have to remind ourselves that healthcare exists on behalf of humanity, on behalf of quality of life for everybody, that is its core genius and joy. For those of us working in it becomes morally distressing to be separate from that mission.

About BJ Miller, MD

Informed by his own experiences as a patient, Dr. BJ Miller powerfully advocates for the roles of our senses, community and presence in designing a better ending. His interests are in working across disciplines to affect broad-based culture change, cultivating a civic model for aging and dying and furthering the message that suffering and dying are fundamental and intrinsic aspects of life.  

He invites us to think about and discuss the end of our lives through the lens of a mindful, human-centered model of care, one that embraces dying not as a medical event but rather as a universally shared life experience. Dr. Miller is a longtime hospice & palliative care physician and educator. He’s been on faculty at his alma mater, UCSF, since 2007 where he’s worked in all settings of care: hospital, clinic, residential facility, and home. He now sees patients and families at the UCSF Helen Diller Family Comprehensive Cancer Center.

Dr. Miller’s Story

I'm a palliative care physician from San Francisco. My clinical work is at the University of California San Francisco, where I practice and teach. But most of my work these days is being out in the world on the speaking circuit trying to sort of beat the drum around helping everyone deal with illness and trying to prepare for end-of-life issues. That's the bulk of my work and then the third piece right now is working on a book call A Beginner's Guide To The End. It will be out next July.

I was injured in college and that made me a patient for an extended period, for months and I came close to death myself. What really turned me on to issues around health care and caregiving in general was becoming disabled myself. That turned me on to two things, the power of our mortality and the finiteness of our time on this earth. Also, it turned me on to the healthcare system both its splendors and its ills. So that kind of prompted me to pursue this line of work, those two things together.

Americans With Disability Act: Built & Lived Environments

I think especially as a disabled person, the biggest thing I became  aware of is how the built environment is not really made for you. This was 1990---‘91 when I was injured. That's right at the time of the passage of the Americans with Disabilities Act. It was just becoming law that we had to guarantee access for people using wheelchairs etc. That’s not that long ago. If you look around you'll see a world that really kind of carves out-- it's built for people who are able-bodied, but those of us who have disabilities, it becomes much more challenging. It’s just becoming aware and my eyes being turned on to how we create a world that accidentally or otherwise leaves a lot of people out. That has been a driving force for me.

Complexities of the Human Experience

I think life is hard. I think for any human being life is hard, it's just we are born with these imaginations that allow us to imagine a world better than the one we've got, and so a lot of us always found ourselves either disappointed in life or disappointed in our response to life. I guess one thing to get across is disabled or not I think life is just difficult and I think we'd all be better off if we just cop to that, if we just gave ourselves that credit and gave each other a sort of a benefit of the doubt that no matter how big the smile on our face. No matter how able-bodied or well we look, that we may be having all sorts of struggles internally and that suffering is a universal experience you don't have to be an amputee to have suffered etc.

Societal Impact on the Human Experience & Healthcare

I think part of the social queue here is for all of us to wake up and see the other inside of ourselves, and see the relationship between us and others. If we could all do that, I think we would be living in a much kinder place. I think we'd be living in a much kinder world, a world without shame. I think one of the hardest things I witness in myself and others, particularly my patients is not only do we have to deal with illness or disability and the pains that go with that, but we have to deal with the shame that goes on top of that. That shame comes from cues that people send us, that of charity or pity or otherzing us.

If you spend a few moments in these shoes, you start realizing that not only is that unfair to receive that kind of vibe, that shame from people, but it also rises a sort of indignant in each of us, on myself. Because it's not like any of us has just got it all down and we're all clear, everything's good and everything's hunky-dory, none of us if we're really honest that state doesn't exist. So, it's not like the world is easy if you're able-bodied and horribly hard if you're disabled, it's just hard no matter what.

These are variations on themes, I don't care if you have four limbs or six limbs I don't care, it's just difficult. It's a really important cue and I do think it starts with of us seeing ourselves as others, seeing the parts of ourselves that are alienated from the world etc. How we accidentally divide ourselves from each other, how we accidentally alienate each other. To me it feels like the evolution of humankind, for us to see this unity among ourselves and so that there really no need for even the word other.

The Evolution of Health Care

Health care needs to radically shift, we keep putting band-aids on the system but I think the system is flawed at its core. Basically, the Department of Health and Human Services should back up and rewrite a mission statement. Being apart of the healthcare industry myself, I'm not even sure what this is all for. We've become self-serving, we invent gizmos that may or may not help people, but we just find a way to pay for them and develop them. We're just loaded up with all sorts of gear and gizmos that end up becoming other forces to get in the way of us being humans dealing with life.  We have to be reminded that healthcare with all its gizmos and its wizardry, I mean there's nothing wrong with its wizardry, it's just misplaced. We have to remind ourselves that healthcare exists on behalf of humanity, on behalf of quality of life for everybody, but that is its core genius and joy. For those of us working in it becomes morally distressing to be separate from that mission. That's sort of an overarching thing.

We have to revisit the ethos of health care not just the machinery of it, that whole ethos of care. Beyond that I think we have the sort of cultural issue, where as you point there's this vertical orientation doctor up here, patient down here, or doctor up here nurse, social worker, chaplain, there's this pecking order, that's just insane and it doesn't really work. That's where we end up with these conjuring craggily old doctors all burned out because too much is expected of them. Those working underneath them were burned out because they're treated like hell. With all of that I think the source of that moral distress that I see is principally because somehow in the culture of healthcare, we are not invited to own our own otherness, our own disability.

Back to this sort of central shift that I think you and I long for in society. Every doctor I've ever met has been sick, every doctor I've ever met is going to die, every doctor I've ever met has lost someone they love but those experiences aren't welcome in their work. We need to open that pathway where physicians and clinicians get to bring their own experiences as human beings to the mix. Not the current status as you basically are taught to ignore those things if I want to be a good doctor I'm supposed to stay up all night for nights on end I'm supposed to not have a personal life etc. That does not work, that does not work at all.That turns us into mindless machines and it makes patients feel awful for needing them. I guess I keep pointing back to however the machine of healthcare needs to change, I think it will flow nicely if we recraft the ethos and the mission of the work in the first place.

I guess that's my last wish Kistein, the work is inherently so gorgeous. I mean you have all these people going through so much trouble to learn so much on behalf of helping each other, so the potential for health care or the root of health care is one of the most gorgeous things. It's right next to sort of spiritual care,  pastoral care or something godly something beautiful, humans helping humans. At its root it has the potential to be the envy of any industry in the world but we are so far from that potential. My final word is, let's remember this potential and work towards that.

Patient Perspective of Care | Kimberly Fisher MD

The medical system tends to define medical errors, adverse events and preventable adverse events in a very narrow way; To look at ways in which care was delivered that physically harm the patients. On the other hand, when you talk to patients and you take the patient's perspective, they really define a much broader set of breakdowns than what the medical system considers.

Kimberly Fisher, MD  A Physician & Assistant Professor of Medicine at University of Massachusetts Medical School.

About Dr. Fisher

My specialty is pulmonary, so lungs and critical care medicine which is taking care of patients in the intensive care unit. You don't have to work very long in the intensive care unit to recognize what a difficult environment it is for patients and their families, not just because the patients are critically ill and really sick but also because of the way the care is delivered and the patient and their families experience of that care adds to the burden of the illness. Seeing that first-hand led me to want to do research to better understand and try to improve that experience.

Research: Patient Perspective of Care

A lot of the focus of my research has been on the patient perspective of care and so that's really wanting to know how patients experience care through their eyes and specifically wanting to know more about their experience of breakdowns and care. We consider a patient perceived breakdown in care to be anything that has gone wrong from the perspective of the patient. That's not just that they were sick but something that's gone wrong in the delivery of care.

When you talk to patients or their family members about their experience of care and whether they've experienced any breakdown in care, a distressingly large number and percentage of patients and their families have experienced what they would describe as a breakdown in care and those are types of problems that can span patient experience. Problems with communication or access to providers, not being able to get the information that they want, to more medical type breakdowns that may include a medical error or an adverse event or a preventable adverse event.

Our focus is really on the patient's perspective of these, which tends to be really different than the medical systems perspective. The medical system tends to define medical errors, adverse events and preventable adverse events in a very narrow way; To look at ways in which care was delivered that physically harm the patients. On the other hand, when you talk to patients and you take the patient's perspective, they really define a much broader set of breakdowns than what the medical system considers. Even though many of these don't result in physical harm, some of them do but many of them don't.

They often result in emotional distress, disruption of either the patient or their loved ones life because they've had to go to extra visits in order to try to get information. It can result in financial burden for the patient or their families above and beyond the expected cost of care and really importantly it can result in a disruption of the relationship with the healthcare provider. In other words patients and their family members often lose trust in providers and the healthcare system as a result of experiencing these breakdowns in care and that may lead them to avoid seeking care at times when they should, because they're concerned about how they'll be treated.

Qualitative Research

I think that it's important to both capture the story or the narrative and a lot of the research that I do is what's called qualitative research, which means that we're interviewing patients or their family members and then we're finding ways to take their story and summarize it. So, we'll look across a number of interviews and say what are the common themes and we might want to summarize it so that we could distil 30, 10 page interviews down to one, four-page research manuscript.

 We'll want to summarize what are the common themes that we hear over and over again so that we can quickly summarize what those patients said to somebody else, but I find that it also loses some of its impact if you try to just turn it into a summary; a table with a few lines and some percentages. Picking out some representative quotes that really capture the patient's experience and the patient's story can make those tables much more powerful. It really makes people understand and appreciate the patient story.

Research Findings

I think learning about how patients view providers and the medical system really surprised me that they had as many negative feelings about medical providers and providers who didn't spend a lot of time with them. I was also surprised at how discerning they were and how quickly once they discerned that something wasn't going right, they would lose trust in a provider. Recognizing how fragile the trust between a provider and a patient is was surprising to me. Also, how essential it is that the health care system really can't function without it. It's sort of an underpinning of everything that we do, from having the patient even come to you as sort of an act of trust.

One other interesting finding  and this isn't surprising when you think about it, although it surprised me at the time, was how much pressure surrogate decision-makers feel. These are patient’s family or friends who are making decisions on behalf of a patient who is unable to make decisions themselves because of their illness. I had not previously appreciated the pressure that, that individual feels by being put in the position of having to make a potentially life or death decision on behalf of someone else. I think it's sort of obvious, but it's just not something that I had stopped to think about, so recognizing how seriously surrogate decision-makers take their role in making a decision for somebody else.

Closely related to that is our finding that many patients don't speak up about the breakdowns they experience, but one thing that we found was that if the patient has a family member or friend present at the time that you ask them if they've experienced a breakdown, the patient or the family member will be much more likely to speak up than if you talk to the patient alone. Putting those two pieces together both the responsibility that the surrogate decision-makers feel and the fact that they're much more likely to speak up on a patient's behalf really made me recognize the importance of engaging the patient's family and friends as advocates in their care.

Ideal Research Outcome/Impact

Ideally, it will help providers to recognize the patient experience, so that an individual provider who recognizes that could bring that recognition and awareness to each and every one of their encounters with patients. Perhaps encounter patients with a fuller understanding of what they go through and that may alter those interactions and those encounters for the better. Obviously the patients are the most important part of it, but I do think that the providers can't act to their fullest potential in a system that is difficult to work in.

Summary: Patient Experience & Breakdown of Care

In summary my research has really focused on the patient experience of care and specifically breakdowns in care, we really want other providers to understand this experience of patients. One thing that we didn't talk about was some of our research is focused on the role of apology. For example, patients who do experience a break down and speak up about it, apologizing to them can be a very effective way of defusing some of their anger, restoring trust and restoring the relationship.

It's not necessarily just as simple as saying I'm sorry. An apology has certain elements that really can make it more or less effective depending on whether all of those elements are included. But, we offer that as a simple way for providers who are equally frustrated by the healthcare system as patients. Also, a provider who maybe can't change the system, can still really go a long way towards addressing a patient's experience of a breakdown by rendering them a full apology that really expresses empathy for what they've been through, i.e  regret, caring and that they've learned something from the patient's experience. These studies have been published in various research journals including the patient education and counselling, the Journal of Hospital Medicine, BMJ Quality and Safety.

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 Medicine | Sandra O. Gold, Ed.D.

Sandra Gold, Ed.D. Co-Founder of the Arnold P. Gold Foundation an organization that strives to keep healthcare human.

Fostering Humanism in Healthcare

The vision for the Arnold P Gold foundation was an evolving one because my husband Arnold Gold, MD was in the in the fray for having humanistic healthcare because that's the kind of doctor he was. He found too often that the people around him who he was supposed to be working with and training, were too focused on the great technology and the new discoveries in medicine that happened in the 1980s.

He had an overarching goal to foster humanism in medicine, to make it clear about how important it was for there to be excellence in the science and use of that wonderful discovery and wonderful new technology. It was so important to the welfare of his patients but also to remember that that's only half of the skill set needed but the other half had to do with the human condition and the need for connection that people have and I think that that's all we had. When the board met for the first time, it was clear that this was a bigger project than we had originally thought about and then we realized working out our goals and having a plan that we needed to be cultural change agents. That's when it crystallized for us that we had a big job in front of us and that there were forces that were going to make for barriers to having humanism in medicine.

Cultural Change Agents in Medicine

Once we decided at the board level that we needed to be cultural change agents, we had to very important learning experiences that were necessary in that as well. What does that mean and how do you do it, what do you do on the ground, we had $0 that's really important to know. Why Arnold decided to have a foundation was a very interesting thought process. When he decided to have a foundation was based on the fact that he knew that people who had foundations had been very successful that Andrew Carnegie really had a lot of libraries that he had supported throughout America. That the Rockefeller’s did very well in supporting research facilities and etc.

I reminded him when he told me that and I said well why a foundation and I said do you have money under the bed that I don't know about, he was surprised and he told me about that why he chose a foundation. I advised him that those people had a lot of money. So, he then realized that it was going to be a difficult project to do and more difficult because we didn't have a lot of money, in fact we had no money. But fortunately along the way, there were wonderful philanthropists who understood the importance of this project and we managed to get funding that was significant from the Robert Wood Johnson Foundation, from Leonard Tow with his foundation, from the Health Care Foundation of New Jersey, those were some of the very early funders of the Goldman Foundation. The Russell Berry foundation, those were some of the very important philanthropists who were intuitive but also knew the need for this and the importance of this.

Overcoming the Odds in Achieving The Gold Standard

I think that people who have vision like Arnold did, are passionate and sincere and believe in the argument for the project. Arnold knew that anything less than humanistic care, no matter how skilful, was less than optimal. He fought up the hill and he assigned me the job of getting the money and organizing and administering the foundation and doing the projects and he was the spokesperson because it was very clear that he was a well-recognized child neurologist. He had the sixth license in the world.

He came into a new discipline as a fellow and had 88 papers to his credit and wrote most of the textbooks on child neurology at the time, so he was credible. When he spoke about the need for humanism in medicine to philanthropists, they recognized that this was something very important and it was in the plea for it. The willingness to work for it, the willingness to develop projects that would enhance healthcare that they recognize this as genuine and true.

There were detractors, in the academic pile of bricks. There were people who said that Arnold is smoking opium, if he thinks they could do something about the changing medical education or influencing it. But, just recently I had an experience, another one of my daughters who lives here in Boston had emergency surgery this past weekend and she called me up and she said, mom, you won't believe this story. She told me that the doctors had been wonderful and very patience and spend a lot of time with her explaining options. She told the chief resident who came to discharger what a pleasure it was and how humanistic that she and the surgeon had been and that her parents would have been so happy to see such humanism. The young doctor's eyes welled up with tears and she looked at my daughter Maggie, and she said, are you the daughter of Dr Arnold Gold?

And then she said, your parents have changed as she put it, the face of American medical education. And my daughter wanted to report that to me that her doctor knew what the movement was all about and represented it so well. And that she called up her surgeon immediately and said, we just operated on Dr Arnold Gold’s daughter. So I think, that Arnold would be very pleased to have heard that, to have a young chief resident understand and do what was necessary to inform correctly a patient that was going through emergency surgery.

Advice to Healthcare Providers

Humanism in medicine is not far from us, it's close to us. Connection between people by a health care provider who came into this profession yearning to do good and to help people, will find it easy to know what behaviors are good and project humanism, connection, relationship, trust and what aren't. I think the key advice I would say is keep that close to you that it's doable, it doesn't take a lot of time because one of the studies that we helped to fund a long, long time ago indicated that when doctors know how to communicate and take some interventions that help you communicate better, that your patients perceive you as spending more time with them.

So that in a study with people doctors who had communication training and those who had not that this study and it was with the University of Michigan and Columbia, indicated that the patient's thought that the doctors who had communications training spent more time with them, when indeed it was the other way around. So, that's number one, number two, people will tell you how to practice medicine and to some degree they have controlled when they own your practice or when you're a nurse on the floor or you're a young physician and it's going to be difficult that's the hard one, in the face of the kinds of push to see patients quickly - well you'll know them better than I what barriers are placed between you and your patient. Sometimes the electronic record if it's not used correctly or a barrier to your patient, you'll figure that out yourself if you are a nurse or a doctor or a social worker or anyone on the team. You'll be told and you'll remember that the doctors who you admire always came into the room and sat down on the same level with their patients and spoke to them.

My husband Arnold used to say if, I heard this just recently after he died by fellows and residents and medical students that he trained. He used to say if you have bad news to give a parent that you're to sit and you give you give some news that is not bad and then you give some news that is with problems and heartache and then you give something to do about it. Have a plan, I could give you ten examples that came in letters after he died, about how he did this and they told me that Dr. Gold always told us that when you give bad news to a parent and that could be for any family member that you always sit there and answer the questions until you look in the eyes of the parents and you see they have no more questions, then you can leave. You don't leave before that.

Now in today's pressure-cooker world of every nine minutes another patient you cannot provide the humanistic connections that are necessary. If the hospitals and the clinics understand that you will get better outcomes, if you allow humanism and relationship building that you will save money in the end. If you look at the data and you want to have it, we can give it to you. Where you can look it up that eventually will come regression to the mean about how time that you spend will be well spent with your patients that they will adhere to treatment plans better that's going to save money for a medical care that there will be fewer frivolous lawsuits. I could give you a whole list of good outcomes that will come only if you have humanistic practice.  

Key to Humanism in Medicine

Nursing assistants and those that provide real care, hands-on care are the key to humanism and medicine. Because all the other people are in and out, the doctors, the nurses now they're doing a lot of administrative stuff. The nursing assistants are the ones that people call for that most often answers the call, just recently one of my three daughters was in the hospital in New Jersey and was in a two bedded room and the woman in the bed next to us was a person crying for pain all night long.

I watched the nurses and the nurses aides as they talked to her, she had dementia as well and so she would be told well I gave you a shot and let's wait and see and if it doesn't work in an hour then I'm going to call the doctor. They were patient and kind and even though her daughter who was staying with my daughter and me we're kept up, I couldn't stop at the say bravo for these folks who were coming in through the night over and over again. Sometimes they change off, I think it’s because they had to keep their cool with her and they wanted to be kind. They were trying to help her.

It was a reminder of what the nurses do to battle for humanism in medicine when they're tired and they're working through the night, so I always say bravo to the nursing assistants and the nursing aides who are right there for the bed pan. This woman was calling to be moved up in the bed, she must have had hip surgery that I don't know exactly what happened but she kept on sliding down she thought and the nurses would say to her I pulled you up as far as I can. Nothing helped except she was quiet when the nurses were there so that they were giving her what she really needed, it was some comfort, some of the other human contact to say to her okay and they did it time and time again.  

Medical Ethos & Societal Responsibility

Sometimes people are overwhelmed at the prodigious aspects of the project. We understood something that Eleanor Roosevelt said. She said, the only way to begin is to begin. So we didn't have any big visions about what we wanted to accomplish. We wanted to foster what we knew was good in medicine, what my husband knew was important before research was able to support the evidence that he had imperatively.

So I think, I'd like to say to people who are in the health care professionals keep ethos in your mind, keep always understanding that you have to protect caring for people as the goal. You have to also protect, of course, excellence in the scientific skills needed. No one likes a dumb nice doctor, nurse or any other healthcare professionals. We need to protect and guard what we know is basic to the optimal medical care. I'm hoping that our future leaders, that the people who are involved in Planetree, who are the  leaders, they're parallel in their understanding of the need for patient centered care and that they will get stronger and we will get stronger and that this will go on and on until we see even more progress.

Preserving Humanism in Medicine

Sometimes I think about where we need to go and what we need to do to preserve humanism in medicine and what role the Arnold P foundation can continue to have. We are not there yet. We are far from there. We have the people already predisposition to humanism in medicine who gets it, and understand it. Then we have what we call the low hanging fruit who, they get it and they're on the bandwagon. We have about over 30,000 people in the gold humanism honors society and maybe up to 35,000 now.

So we have a lot of leadership now and we have white coat ceremonies at almost all the medical schools that set expectations for this day one, which was Arnold's goal. He said, at the end of medical school to get up and say an oath, it's useless. It's already four years too late. They're already the doctors who they're going to be. It's very important to get to know the people who are the doubters, the people who have been pushed into positions where their connections to their patients are severed, in a lot of different ways where, they're pressured to do things in a way that they wouldn't choose to do them. That they would practice medicine differently if they had time. So as Arnold always said in his black bag, he didn't have a lot of cures, but he had time and he had time to talk to his colleagues, get new ideas, get fresh, to have a lot of time with his residents and fellows to really teach.

Passion for Humanism in Medicine

People ask me why I'm still so passionate about this after 30 years of working on it. I came into this kind of sucked in by my husband who said here's your job, raise money for this. However, over the years as you get older, you see a lot of people who have serious medical problems in the family, in the neighbourhood, in the community. An understanding and reading, the research and seeing how much pain being sick causes, your life depends on it. I am still passionate about it, I still feel that it's one of the most important projects that we can have in medicine, to preserve what was good for 2,500 years that a doctor, a nurse, a team health care provider gives that patient care that's why it was called health care. The human connection and keeping health care human which is our tagline and  is high on my list.

Legacy of the Arnold P. Gold Foundation

I think the legacy of the Gold Foundation will be to keep pressuring for, advocating for the human connection in medicine and that our goal of beginning will continue and we'll a compass more of medicine than we have so far. Although I'm delighted to say that we have made inroads and as you hear other people have said that we have had a huge influence on the face of medical education. It's only important if that continues, so that's our goal for the legacy that we'll have fresh power to clinch the bargain for humanistic here.