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.


Collaborating & Co-Designing The Future of Healthcare, Julie Rish, Ph.D.

"The future of patient experience relies on meaningful strategic (maybe) relationships with each other. Where we're talking together, and where we’re coming together to solve these problems, Julie Rish, Ph.D.". 


Julie Rish, PhD is a Clinical Psychologist, Director of Design and Best Practice in the Office of Patient Experience at the Cleveland Clinic. Dr. Rish is also the Director of Communication Skills Training and an Assistant Professor of Medicine at the Cleveland Clinic.

 

Julie Rish, Ph.D., MA, Role at The Cleveland Clinic

I have spent most of my professional career helping people with health behavior change. That blends nicely to the work that I do in patient experience because it is about how do we change and adapt our behaviors to best support our mission and cause in the organization and come together. As the director of communication skills training for a medical school, I'm active in teaching our students what communication with patients and each other could look like and potentially should look like in bringing in that next generation to health care.

Most of my life is in patient experience, in really leading efforts in one; how do we partner with patients, their family and their support persons to really improve care and to reimagine what that partnership looks like, so that we can be very strategic to maximize the full potential of partnership and to manage the complexities of health care together as a community.

The other part of my life is complimentary as applying plain design thinking to our work. So, in a variety of settings having really great collaborations across the Cleveland Clinic. Questioning, how do we do that in a way that brings together all the stakeholders to design something better for patients and for our people.

Discussing Patient Experience & Humanism in Medicine

I think medicine is inherently human. The art of medicine without relationships---We're not just technicians. Similarly, providing excellent patient experience is about meeting people in a very relational human way. I think that you can't disconnect those two things. Optimal healing can’t occur without the humanity of medicine and true understanding of another person sitting in front of you, without being able to empathize with your experience.

Relationships are healing in and of themselves. When we're connecting as people it's healing to me as a clinician but it's also healing to the person that's sitting in front of me. We have to think about going above and beyond what we can do medically for someone.

Achieving excellence in Patient Experience at the Cleveland Clinic

What we've done so beautifully is really put some stake in that, that we are going to care about our patients, we’re going to care about our people and we're going to invest a lot of energy in both. Trying to understand one another, trying to appreciate each other's perspective, see things through different lenses and design it together. That's a beautiful model that will help us improve as a system but also help us improve and transform health care.

Barriers to achieving humanism in medicine

There’s a lot of barriers to being human in medicine we know about widely publicized, burnout in clinicians. The detrimental effect that has on them individually but also on patient care. It's double edged and it's complex to solve. Also, add the burden of documentation. Providers spending more time in documentation than they are in front of the patient. Trying to find meaning and purpose in their work and the complexity of trying to solve that. The knowledge and the explosion of that is another barrier in some ways. Trying to stay current when they're so much information is hard. How many hours a day can one possibly invest, then how are they finding balance in their life and spending time outside of the walls of the system that you work?

There’s a lot of barriers that equal time and task pressure. How can I be present in this moment and not thinking, three steps ahead or three steps behind but just to be present in the moment? When you do that you can find meaning and purpose in your work. The barrier is how do we overcome those obstacles to create moments of presence? Being mindful and truly connecting a human level. In doing so, that's where we can find restoration and purpose and get back to why you chose this profession, this career, this entity in the first place. That’s our greatest opportunity right now is to try to navigate those barriers in a way that is optimizing the human connection.

The importance of Humanism in medicine

The importance of clear. I talked about that relationships are healing and that it's hard to create a relationship without being present and authentically yourself. Therefore, if you're struggling with burnout and it's easy to depersonalize a situation and it creates some distance between you and the person sitting in front of you, it's also hard to create the meaningful moments. That equal satisfaction with your career, with your experience in that moment and with the quality of care.

Trending towards a barrier free healthcare delivery system

Navigating the system in a way that we are creating that is our greatest imperative. We have to think bigger than clinicians. We absolutely have to continue to invest in our people, that's clinicians but I think that's other members of her our clinical teams and our staff in a health care system that we see burnout in many different places.

Being thoughtful about what we’re and how we're investing in our people was really important. Thinking bigger than just the people, that its systemic and if we're asking people to spend half of their day in documentation and in the evenings and all hours of the night then how can we possibly expect them to overcome these barriers.

Thinking systemically, what does healthcare need to do to better support our clinicians. The burden of documentation, policy and the pressures that we're placing on top of them. While also thinking, how do we change the top down but also how do we support from the bottom up. In addition, equipping people with the skills to communicate effectively to connect to meaning and purpose in their clinical encounters. In some ways that's by just teaching someone how to listen and to empathize with someone’s experience and perspective and connect to that as a human.

Again, I would transcend more than just our clinicians. I think it is our nurses, it's the other people that are touching our patients. From the person that checks you in, to the person that you speak to on the phone when you're trying to navigate and make an appointment, to the information that you get when you leave the hospital. There's so many different touch points that we have to connect to.

Technology & healthcare

These types of solutions have to be co-designed. Oftentimes it feels like we are pushing solutions out and those solutions need to be brought together from the people most intimately affected. So our patients, our people, our clinical staff, our non-clinical staff. Those people need to come together to define what that solution looks like and what the need is.

Oftentimes, I feel like we're just creating solutions or “hey great lets give you some communication training”, but is that the training that you need is that what's going to solve the problem and is this actually the problem to solve or the opportunity to innovate around. I think if we are not talking to those people most intimately affected at the beginning and throughout, I'm not certain that our solutions are going to work and that we're actually going to be transformational.

Patient Experience In Its Current State & Future Outlook

In the future our patient experience relies on meaningful partnerships and collaborations. Intimately integrating our patients, their family and support persons into our work and having them help us co-design care, from the beginning and from all phases and all levels of the organization. If we're not doing that then we run the risk that we're not actually providing the care, the needs, the solutions that are patients really need.

Bringing them in and sharing that space with them in true partnership, not in a focus group setting. The true partnership where we are identifying the problems to working alongside, to creating solutions together and testing them out. The patient experience relies on our willingness and openness to do that together. The future of patient experience relies on meaningful strategic (maybe) relationships with each other. Where we're talking together, and where we’re coming together to solve these problems.

Meaningful Integration Of Technology

I would suggest that technology needs to be seamless, in that it affects both of our patients and our clinicians. It needs to solve for the tremendous burden of documentation and the non face to face time that our clinicians are struggling with. It needs to facilitate making health care more simple for patients.

If you think about we what exists right now there are thousands of apps and thousands of different platforms that someone could go to. How do you know what's the right app to download or how to even find the right one the problem that you're trying to solve. We in health care need to streamline those applications in a way that's meaningful to our patients. That's going to help them navigate the system and connect them in seamless ways.

I would say the same for our clinicians. Technology needs to create the moments of connection. The human moments and take the burden out of some of the non-human moments for clinicians. It needs to solve for both ends of that spectrum to simplify the experience of health care. Otherwise, you need an app to navigate the apps.

The most important thing is being willing to be vulnerable, humble and to learn from each other. To be thoughtful about how we partner with the people around us, how we learn from each other, etc. All of that takes deep understanding, empathy and really trying to appreciate someone else's experience and perspective.

If we’re not doing that we're not really solving at that intersect, that’s really where we need to be. What are the solutions that make the most sense for the most people, at the right time? To me that's transformational! So, we could setup really great population health efforts, but if it's not the practice, the services or the values of the community that it serves, then what have we done.

I think really being thoughtful to first understand the people that are out there. Really empathizing with that, then solve those problems together and create those opportunities together. That’s what's exciting about health care is the great potential of what you can do together and in a collaboration. I’m excited to be a part of that!


Dr. Rish At The Cleveland Clinic | Twitter | #PESummit

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.