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.


Person Centered Care at Planetree Inc, Susan B. Frampton, PhD

“One of the things that all people have the ability to do is to listen, to be a compassionate listener and to approach other human beings with that openness to whatever their experience is” S Frampton, PhD.


Susan Frampton, PhD is the president of Planetree International.

Planetree is both a philosophy of care, of patient centered care, of care that engages patients and families as a part of their care team. Planetree is also an organization that has advocated for the rights for patients and families to be more actively engaged in their own care for 40 years.

Technology & Humanism in Medicine

In terms of the future of patient centered care and Planetree’s role in that, I think that it will really be a challenge for us to look at the intersection of technology and the human touch and to not lose that human side of the care equation in this rush towards implementing more and more sophisticated technology.

There's some wonderful benefits that we have in store in terms of communications technology, in terms of artificial intelligence, but always we have to remember that at the center of the equation is a vulnerable human beings with human needs and that we have to make sure that we find a way to bridge technology and those human needs.

Healthcare Professionals Role in Person Centered Care

I think that the role of healthcare workers, healthcare professionals, advocates, in person centered care in the future as well as currently is absolutely essential. So, when we talk about patient and family engagement, we also are addressing staff engagement because the people that deliver that care, they're also at the center of the equation.

That's why we've really moved from talking about patient centered care to person centered care because they're also a part of the people that we have to make sure are supported, are engaged and involved so that they can give their very best to the patients. But in order to do that, we have to make sure that they're getting the support and the training that they need to do the very best that they can.

Empathy & Care Delivery

One of the things that all people have the ability to do is to listen and to be a compassionate listener. To approach other human beings with that openness to whatever their experience is. To understand that to try to meet other people where they're at and not to make judgments about things. To really try to be a little broader in the way that we approach other people so that again, we're trying to put ourselves in their shoes to understand what their experience, what their reality is.

I mean, that can be so diverse. It is a challenge because all of us have our own biases, whether we acknowledge them or not. We come from our own set of experiences and our own background and our own, training or what have you. But I think when we come together, particularly in healthcare, we have to challenge ourselves to think more broadly, to be more open and to be more compassionate listeners to the human beings that we're trying to support.

Patient Empowerment Initatives

So #careboss in many ways encapsulates what the whole philosophy of person centered care is, which is each of us has an opportunity to take more control of our own healthcare, to be advocates for ourselves, for our families, for our communities, and Careboss is a way of kind of energizing people to understand, you don't have to be a victim. You don't have to be the person who sits passively, that we do have power.

We have expertise about our own lived experience, about our own bodies, our own needs, and so it's really a movement to try to energize people to kind of take that power back to be the boss of their own care. To the extent that they're able to, where they're comfortable to. And so we're hoping that people will use that hashtag (#careboss) to share their experiences. To maybe give us their thoughts and perspectives about what it means to be in a space of more accountability for your own life, your own self, and what role you want to have in your own healthcare.


David Watson, MD | Amplifying Safety Cultures in Healthcare Systems

"The idea of what is called a just culture and what that means is that we adopt the ability as an organization to look at things that happen as learning opportunities rather than opportunities to punish" David Watson, MD.


David Watson, MD is a physician surveyor for The Joint Commission. Dr. Watson work for The Joint Commission serving hospitals for accreditation one week every month.

 

About The Joint Commission

The Joint Commission is the accrediting body that goes around every three years and looks at hospitals to make sure that they meet certain standards of care and that they are able to demonstrate those as we walk through the facility. As we look at the way they take care of infection, the way that they prepare food, the way that they write orders and things in the chart. We then have an engineer check out the engineering of the facility.

The standards all started many many years ago back at the turn of the last century when the American College of Surgeons decided that hospitals needed to have quality done in the same way at each hospital. That is how The Joint Commission started. It eventually became a collaboration of several organizations in about 1960 with the hope that we could give the same quality of care to all patients who received it in the United States.

Safety & Quality in Healthcare

Well safety is the foundation of good health care. Right now The Joint Commission has adopted a new motto and that is “Zero Harm”. Our goal is to work towards that and all the safety measures help us reinforce those things. For a long time we thought that we couldn't adapt things that they do in industry, but we found that those high reliable processes work very well in medicine eliminating things that are infections on a recurring basis.

We know if we take certain steps we can prevent those and just looking at safety overall. Making sure that the sterilization process in the operating room is done properly so that they go through those steps. That scopes are used for doing endoscopy those are cleaned properly. Those are all safety things that are very important and we've heard the stories where they are not carried out properly.

The Las Vegas endoscopy clinic for example with all the problems that they had there. Someone needs to be making sure that happens.We are one of the many bodies but the largest by far of the hospitals that we survey and take care of and I really enjoy being part of that process.

Thoughts On Hospital Systems That Prepare For The Joint Commission's Visit

It’s one of the things that I always say to hospitals when I survey. The words I don't want to hear is “we prepared for the joint commission”. We’re here to look at you at a point in time and hopefully that allows us to come as just be another set of eyes and have the opportunity to look at what you're doing. If you don't meet the standard we're going to explain why and give you some options to help you.

If you exceed it, and have some really great things, I'm going to look for those too because I want to take those back. I have this philosophy about medicine that are no good secrets in medicine, people need to share the good stuff. This is not like inventions. These are things that have to do with the wellbeing of all mankind, so we should share them.

Collective Mindfulness; Going Beyond Policy To Ensure Safety, & Quality As It Relates To Healthcare Workers Experience.

Policies are crafted to make sure that we have coordinated consistent way of doing things. They are the framework by which we can have all employees do the same things for the same purpose. That's one of the things we look for in The Joint Commission. When there are things that we look at that we are concerned about we want to make sure that what the organization does agrees with the policy that they read. And, it's a very intricate part of the everyday survey.

There is a concept out there as far as safety goes and the concept basically is called collective mindfulness which means that every person in the hospital is a safety officer. Therefore, if you're walking down the hall and you see something on a tile that doesn't look right, you pick up the phone and you call the people in maintenance and say “Hey the tile outside of room 247 isn’t staying, maybe something is going on”, or a stain there may be some of them. I can take a look at it if things are dirty, if something is broken or something is outdated.

It's everybody's responsibility to take measures to make sure that that's corrected. One of the other things that I like to see is, I used to do interventional blocks. I like to see the count in the operating room tagged in such a way that not only do I know that it was inspected but I know that it was inspected within the last year. I don't just look for the number but a color code that says, when I pick that gown up and put it on to protect myself from the radiation. I know that it was checked and I know that I'm doing it not because there's a policy that says I should do it but also because I know it's going to protect me.

Just Culture | Balancing Accountability In A Non Punitive Way To Reduce System Errors, Ultimately Improving Patient Safety

It's an idea of what is called a just culture and what that means is that we adopt the ability as an organization to look at things that happen as learning opportunities rather than opportunities to punish. We are open to look at those things that don't go right to figure out why they don't go right.

As I said a little bit in my talk (#PESummit), I pointed out that even when these adverse events happen 85% of the time they don't involve a medical error and even when a medical error happens over 90% of that time it has to do with the system. That the system has not organized itself in a way to prevent people from being put in that position. That pretty much sums up why we need to look at this overall structure and say “hey these are opportunities to learn not to punish”.

Real Life Example:

While on orientation (day 3) a nursing assistant was instructed by an nurse to place a hot pack on a patient’s pelvis area. The hot pack became open at some point and hot fluid from within rushed onto the patient’s skin causing burning to the scrotum. The nursing assistant was immediately told to leave the facility after the accident.  

OK, this happened but why did it happen? Did that person do it intentionally? I don't think so okay. Was she trained properly? No. Is it a systems issue? Absolutely. That goes right down to leadership, it goes back to immediate supervisor. It goes back to one of the things that we look at, always look at competency for people to see if they've been trained.

If they've checked off on that every year and if they still have that competency level. She probably hadn't even been given the ability to have the competency to begin with. Ultimately the responsibility for what happened here lies with leadership and that's the way I would look at it. That's the way it would look if I were doing a survey.

Applying Emotional Intelligence in the Medicine

Well it's that balance between what you feel and what you know. If you can apply that in the sense that it gives you that feeling of what you're doing is right, for me it would be almost like that second voice of reassurance that you're on the right track.

Thoughts On The Future Of Healthcare When Coupled With Technological Advancements  

I think there are great opportunities out there for the use of the advancements in technology. We’ve seen so many things come. I was blessed to start in anesthesia back in the 1970’s where everything was manual. I pumped up the blood pressure cuff, I listened to the heart, I felt the patient's pulse, I looked in a patient's eyes. This is all done by machines now and that microchip has come a long way.

Other things that are coming in the future I think would even be far more changing. We have the capability now of putting up a little dot like a band-aid on your wrist and it can read your pulse, your temperature. It can even by impedance tell what your blood pressure is. Now a nurse 50 miles away and she has a computer is able to Skype. She can take that information, look at you on there and to say whether she needs to come out to your house today or not. This will allow healthcare to become more efficient and hopefully less costly.

Maintaining Enthusiasm In The Medical Field

I think the excitement for me is the possibility of leaving medicine better than I found it. I started medicine in the 70’s when things were rather crude compared to what today is. Along the way I've learned lots of things and hopefully I can share those with others in their journey to make medicine better. It's always that pursuit of excellence. That wanting to reach a little bit higher, to do it a little bit better and always with the goal in mind that we're taking care of patients and we never want to harm them.

Embodying Empathetic Cultures In Healthcare Systems


I think the empathy for me and the important part of this conference (#PESummit) is what I talked about earlier, that second victim these are healthcare workers that are involved in an adverse event. The empathy that needs to be expressed to them is that connection of realizing that they've been in a difficult situation and they need to be supported.

They need to be reassured and they need to know that they went into medicine for the right reasons. They take care of patients because they love what they do and they should continue to have that fire in their eye when they go to work every day to be totally engaged. We know that total engagement leads to less errors so we want our workforce to be engaged.

Closing Remarks

This has been a fabulous opportunity to meet with other people who are concerned about the welfare of patients and about the welfare of their fellow healthcare workers. An aspect that isn't often overlooked. We take great care of patients but we don't always take the best care of ourselves.


The Joint CommissionWebsite | Twitter

Elevating Interactions in Healthcare, By Jason A. Wolf, Ph.D., CPXP

"Where healthcare is going is to this idea of a commitment to the human experience of balancing the patient and family outcomes with ensuring a good caregiver provider experience" Jason A. Wolf, Ph.D.. 

 


Jason A. Wolf, Ph.D. is a passionate champion for positive patient experience #patientexperience #PtExp, organizational culture & high performance #healthcare. Dr. Wolf is the President of The Beryl Institute and founding editor of the Patient Experience Journal

The Beryl Institute

We’re a global community of practice on creating improvement on the patient experience through shared knowledge and collaboration. We have really built a global community of individuals across segments of the healthcare practice to engage in discussions on what it means to improve the healthcare environment for those both receiving and delivering care. We’ve done it through the building of educational materials resources such as thought leadership, webinars, to white paper, research and elsewhere. Also in bringing people together just in communication and networking to learn from and share with one another.

Defining Patient Experience As Outlined by The Beryl Institute  

The sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care.

Those four aspects of the definition, the idea that its based on interactions. That it’s grounded on all touch points across the continuum and also in the spaces in-between. That it is ultimately the perceptions that patients, families, and their support network that are the indicators of success in experience and are all critical elements.

While it is a simple phrase, there's a great deal of complexity involved. It does bring us back the fact that in healthcare we’re in a business of humans being caring for humans beings. Therefore, if we can't get the interaction part right i.e personal interaction or clinical interaction we can really never deliver on experience promised in the kind of organizations that we build.

What we mean by culture are the means by which we deliver all those interactions. We have to get all those elements right. Its not simply just getting our checklists right or our clinical protocols correct. It's really about building a systemic solution that drives lasting, sustained outcomes and positive experience for everyone involved in the healthcare encounter.

Discussing Barriers That Hinders Achieving Patient Centered Care

The barriers to experience excellence are interesting. We can go with what the data says, which people always say that it's time, leadership isn't focused, there’s too many priorities etc. I really think that probably the biggest barrier right now is that people are still trying to get their arms around what it is. All too often we have tried to over apply tactics to what really is a systemic issue. I believe that probably one of the bigger barriers to truly providing the most positive experience, the idea of engaging people from patients and families to having patient centric principles to thinking about patient activation---all the terminologies that we use.

We’ve separated all these pieces and instead not really thinking about the systemic solution that as a human being in healthcare delivering care to human beings what is that experience we believe people deserve. Stepping back and thinking about the broader conversation of what experience can be is one of the greatest means by which we can actually overcome that barrier. I do think we get stuck in the mechanisms of healthcare all too often. Thinking about the system that we create to deliver on process and not really thought about the broader strategic impact that we hope to have. That does get in the way of our capacity to ultimately provide the best experience.

Thoughts On Technology & Its Capabilities In Improving Care Quality, Patient Safety, Patient Education, Diagnostic, Clinician Collaboration etc.

Technology is the key lever, it's one of the strategic filters of experience. In a number of ways is the means by which we now communicate with people. It's the means by which we now share information. It's the means by which we can create more efficient and expedient processes.

We would be remiss if we didn't understand that there's a technology aspect to providing better experience and better outcomes but it's not technology for technology sake. When we begin to think about building an experience that really impacts people, its the core ideas of the definition. It is then the resources that you can put in place to ensure the best in experience.

If we realize that technology is a tool in our tool bag in terms of ensuring that we can elevate experience and we use it in that way with the right strategic lens, I think it does have a significant impact. The application of technology for technology’s sake I think we’ve seen that not necessarily work to our advantage and sometimes it can even become a burden on people’s capacity to provide experience really well.

Framing The Future of Healthcare; The Importance Of Shifting Organizational Culture To Improve Patients Perception Of Care

Where healthcare is going is to this idea of a commitment to the human experience of balancing the patient and family outcomes with ensuring a good caregiver provider experience. Creating healthy folks in delivering care, ultimately ensures better outcomes for those that healthcare delivers care for. However, they have to do that in partnership.

The ability to engage in where healthcare is going, is going to be centered on this idea of partnership, co-design and co- production, engaging all voices. And, not only the creation of solutions but in the next steps forward in terms of designing what healthcare can and should be. Healthcare has got to challenge itself a bit.

I would even be so bold to say, the word and the phrase patient centric is actually a provider centric language. We are saying that we believe from healthcare that patients should be at the center of care. I had a very wise patient say to me when I was speaking in Australia, “nobody asked me if I wanted to be in the center. Do we really always want to be there?” Not to simmer from that, I think that the evolution that we’ve heard in healthcare--from doing to patients to doing for patients, to doing with patients.

We can’t see everything as linear in that way. In fact, there are moments where I think as patients and family members we know things are going to be done to us or for us, not always with us. We have to find that ability to balance between those things and create the right kind of conversations that we are able to co-create the future of healthcare.

The Role Of The Beryl Institute In Setting The Stage For Improving The Patient Experience.

The role that The Beryl Institute has is to serve as a neutral ground for this conversation. To push the boundaries of the discussion, to help elevate the thinking and create a safe space for people to share the greatest ideas and really almost circle around failures and find means for improvement. My hope is that we continue to push the experience story, not as a nice thing that healthcare has to do. We’ve always said that we believe if you think about healthcare from an integrated perspective, if you think about experience from an integrated perspective, then it is about quality, safety, service, cost, access etc.

For us it really is about continuing to elevate the integrated perspective, that all that we do in healthcare ultimately contributes to the experience people have. That in fact whether we plan for it or not people are having an experience in healthcare today.It really calls on healthcare leaders to realize that they can create that experience or just leave it to chance.

So, for us to instill a sense of strategic imperative that this isn't about satisfaction, it's not about making people happy, but its about driving the outcomes that we believe healthcare is capable of. That the people that are experiencing healthcare deserve. That will continue to be our rally and cry. That's the opportunity we have and it's the conversation we need to stay in together in terms of driving the right outcomes for healthcare today and well into the future.

Defining Empathy In The Patient Experience

We did a research on empathy, compassion, all these kind of things. We asked consumers, to what extent empathy and compassion was important to them. I was actually surprise, it came down the list. I think it's because, empathy is a healthcare centric language. A typical patient and family member out there knows what they want to see. They want to feel listened to they want to feel like they are being spoken to in a way they understand etc. Those were the things they elevated in terms of importance.

For me the lens is not to get stuck in what empathy is but to think about what does it look like in action. I’m probably less concerned about how we define empathy. How we elevate empathy and the actions that we take to ensure that patients, family members and those that are delivering care feel heard, are communicated to effectively, are engaged in ways that matters to them, then they feel what we believe empathy is.

All of those things without having to put a label on it in a way that is about us doing something but more so about engaging the folks in care themselves. We do actually amplify empathy, we do elevate the delivery of compassion by moving beyond the words to the actions. Ensuring that we engage people in those ways, that they feel as if their experiencing the things that matter to them not words that we think equate to that.

Closing Remarks

It's important that people know that The Beryl Institute is a name. We’ve been very clear that it's not and has never been about The Beryl Institute, or Jason A. Wolf, Ph.D., CPXP its about the conversation and the community that we bring together. To be able to participate in a way that we think is changing healthcare. We’re a community of practice, our job is to catalyze and get out of the way and ensure that conversations like this can thrive. Anybody that's thinking about contributing to this kind of dialogue and elevating their own contribution to healthcare that needs to happen.



Jason A Wolf, Ph.D., Website | Twitter 

The Beryl Institute Website@berylinstitute 

Patient Experience Journal Website@pxjournal