Helping to reduce the burden of taking 83 pills a week – A nurse’s perspective

Submitted by Renee’ Herman

I had a patient recently (a male in his late 60’s), whose treatment plan includes taking 83 pills a week! Pills he cannot easily afford and often neglects to take. I met with him to do a medication reconciliation recently and started by asking him what “matters to you”. He said “getting my house in order”. I asked what barriers he might have to doing that and he smiled and said “all these pills!” So that’s where we started. I helped him take all of the pill bottles out of pharmacy bags, new prescriptions ordered the week before, bottles in bags stapled shut and unopened. We went through a list together marking “morning, noon, evening, and night”. We talked through what the pills were for and when and how to take them. He verbalized understanding with teach back, a bit overwhelmed, but smiled as he said “a small fortune here!”. He was given a new, larger pill box, actually two, and a larger plastic tub for all his bottles. He left feeling “more in order” as he said. I wondered about getting him a security guard to protect the patient and ‘his loot’ on the way to the car!

I called the patient’s primary care physician and expressed my concerns over the number of pills this patient, who by the way also had early stages of dementia ( part of the new medications we took out of the unopened bags and bottles) was taking. The physician said he had no idea how many pills it added up to! The primary care physician said “I’ll take a look, but unfortunately each of his specialists feel strongly about what they are treating him for (diabetes, COPD, early onset dementia, urology and cardiac) and I’m not sure who might feel their medications are less important.” An appointment was set for a review of the patient’s med list with the primary care physician. The patient rescheduled this appointment, and the next appointment he ‘no showed’. Perhaps overwhelmed?

How difficult it is when the treatments for ‘optimal’ health supersedes living optimally! Such a burden we unfairly place on patients in healthcare sometimes. New meds to try, old meds we rely on.

I’m not giving up though. I will continue to help this patient lighten his load so he can run the way he desires, as much as he is able, in these next few years! Now, we just need to find out how to encourage him to get to his next appointment, but those barriers are another story!

Through all of my day, thinking about my patient’s priorities and ‘what matters to them’ has changed how I approach transitional care for my patients. I have “what matters to me” on my wall to remind myself to keep my needs and wishes in perspective too. I meet patients with their priorities and capacity in mind. It’s a start, but it’s making a difference in my nursing care!

Renee Herman

Renee’ Herman, RN, BSN, MHSA
High Risk Transitional Care Coordinator
Saint Luke’s Hospital

Making a difference one clinician at a time

Submitted by Renee Herman

I wanted to start my day by sending you a “thank you!” for your work.  I have no awards to give you, live applause from the audience, or notations that reference your terrific work in journals. Today, from me, I can only give you the experiential, warm hearted “thank you!”

Almost two years ago now, I accepted a position here in the heart of Kansas City (literally a bi-state city) at Saint Luke’s Hospital ‘on the Plaza”.  We are a part of a larger health care system, but this hospital is the heart of the system, in the heart of the city. My ‘title’ has changed several times, which tells you the changing dynamic of what I do.  Most recently, I wear the title of “High Risk Transitional Care Coordinator” which in its simplest description is a role whereby I identify or get referrals for those high risk, complex care, often chronically ill patients who are underinsured and under resourced. From May to December 2014, I received over 150 referrals, and this past year, had over 200.  These referrals came from all over the acute care setting, but also extended into the post acute care setting including several Patient Centered Medical Homes (PCMH) and Saint Luke’s Home Health Care and Hospice team.  In the acute care setting, I have had referrals from the Emergency Department where our high risk patients are some times first identified, to all inpatient units, including transplant units for heart, kidney and liver. Most often, the referrals come from frustrated staffs who just ‘don’t know what to do with this one’. So, they call me.  There are plans to expand this role into a ‘department’, but in this every changing healthcare environment, new programs like this one that was funded as a ‘pilot’ by a grant, often have as the number one question, “Where do we go from here?.”  So, for now, I am the “department” though I have  found great support by working with area ‘safety net clinics’, other community services, and terrific Community Healthcare Workers who often assist me.

In the midst of gearing up with information for this role, trying to understand my patient population so that I could give them the care and service my patients really needed, I found about your work at Mayo Clinic.  I’m a Minnesotan by birth and have visited Rochester since I was young (side note: it’s where I first learned about the power of illegal drugs from a video I saw at a Mayo learning center. It greatly impacted my life as a grade school child.). I watched Mayo Clinic grow from a ‘hospital/clinic’, to now a ‘health care system’ occupying city blocks! The strong feelings I have about Mayo’s reputation for quality and patient centered care set the stage favorably for you, even before I listened to you on an IHI radiocast.  Again, Mayo Clinic lived up to its reputation in my life and when I heard you talk about your work, it literally made me cry with excitement.  Finally, someone within the medical profession ‘gets it!’  I was seeing what your were describing in my patient population and right then, could name many of my patients who were really trying, but not succeeding, and suddenly it all made sense as to ‘why.’

Now, in working with my patients, I try to really hear them as they set out for me in their own words, what they can and cannot do to manage their own health care. Sometimes, they show me by what they are, or are not doing, what ‘really matters to them’.  It makes sense to me now and I can better explore with them their feelings of ‘never quite feeling like they are ‘measuring up to what they’ve been asked to do by their Doctor or health care team.  Some have even said to me, “It’s impossible!” and now, I can agree. When I ask patients “What Matters to You”, they often look at me and say, “No one has asked me that before”, and they go on to tell me. Interestingly, what seemed “impossible” for them, when broken down into ways that are manageable and meaningful to them, seem more “possible”.  I have story upon story of patients whom I have helped in the “transition” between the hospital and home, the “transition” off of home care and into the PCMH, and from ‘managed health care’ that was put upon them, to ‘self management’ of care that fits with their healthcare priorities.  From the End Stage Renal Disease patient who rides an electric wheelchair daily for 45 minutes to dialysis by bus because she wants to live independently in the only subsidized apartment she could find (we were able to get her a bed, which was what ‘mattered to her’ in her health care plan), to the Heart Failure patient who was illiterate and labeled ‘non-compliant’ (we helped him to log his weight daily because he could read numbers and his ‘self management ’ confidence rose significantly because he now had something he could do to show he was trying to follow his treatment plan, and that was what ‘mattered’ to him),  my ‘tool box’ of ‘helps’ and understanding, has been significantly aided by your work. We have long way to go to actually ‘do’ what your work has shown would actually transform the care of our complex care, chronically ill patients, but even in the basic ways I’ve applied your studies, I’m finding increased satisfaction in my work, less ‘burnout’ from ‘trying to make patients do it our way’, and positive outcomes in the lives of the patients I’m asked to help.

So, from the heart of a very grateful nurse (one who has been in the profession for greater than 35 years and is still learning!), I say “thank you.”  It’s cold here…and I know even colder there, but hopefully today, your heart will be warmed knowing you are making a profound ‘experiential’ difference in the lives of caregivers and patients. Thank you. Thank you.  Keep on!

Renee Herman

Renee’ Herman, RN, BSN, MHSA
High Risk Transitional Care Coordinator
Saint Luke’s Hospital

Diary post of a visiting researcher

Dear Diary,

Sat May 7th. All set, ready to go! Excited to visit the KER Unit for a few weeks and to join them at the SAEM SDM Consensus Conference in New Orleans. This will be my first visit to the Mayo Clinic, and one I’ve been looking forward to since I became a research collaborator last winter.

Wed May 11th. We just returned from the Consensus Conference. It was inspiring and motivating to see so many participants (most of them clinicians) trying to find ways to make SDM work in practice and to improve care for their patients. Victor presented his keynote lecture ‘What is SDM? (and what it is not)’ and we worked on writing a paper on this keynote for Academic Emergency Medicine.

Thu May 12th. First day at the KER Unit. What a day! I attended a course on EBM, discussed grants and ongoing research projects with Juan Pablo, Mike and Aaron, and had a braindump on SDM (old and new thinking) with Victor and Ian. Note to self: replace ‘yes, but…’ by ‘yes, and…’.

Sun May 15th. Friday, I finished the AEM paper with Ana and Erik. Gaby presented her study on the effects of social networks in management of diabetes on Saturday. In the evening, we got together for drinks and laughs (with bubbles, cheese and chocolates) at Annie’s place. Today, I’m going out to meet Nilay for brunch.

Mon May 16th. Started with the weekly huddle this morning: what a great way to get an overview of what each member of the team is working on right now. I worked on our Choice Awareness project* and attended the Patient Advisory Group to discuss Juan Pablo’s project on SDM in Thyroid cancer treatment. Amazing how this group of patients manages to come together every month (for over 10 years!), to improve the work of the researchers and to make sure that researchers don’t lose the connection with ‘the real world’.

Tue May 17th. Trying to see whether the Choice Awareness project can take us to the moon! Maybe. Also met with Kasey to learn more about the ICAN tool.

Wed May 18th. No trip to the moon (yet), we will have to find other methods to make this journey. I worked with Victor to build my Apollo II. Juan Pablo and Ian joined, which led to a conversational dance of thoughts, (crazy) ideas, hypotheses, and approaches. Best day ever! In spite of, as well as because of the challenges we faced this morning. In the afternoon we came together with a group of clinicians and researchers interested in SDM in diagnostics to see how to take this field forward.

Fri May 20th. Yesterday, I discussed the progress and challenges around the Choice Awareness project in the SDM journal club. We went for dinner and drinks afterwards to continue our discussion on SDM old and new thinking. I continued with the project today, focusing on capturing the differences in SDM between a mechanical approach and a human connection. It takes two to tango, but we have no way to measure that dance. Speaking of dancing (and of mechanical approach versus human connection), in the evening we had a birthday party at the local salsa place.

May 22nd. BBQ with the KER Unit team at Aaron’s place yesterday and smores at the river with Gaby, Mike and the Montori family today.

May 25th. Worked on the Choice Awareness project for the past few days. Met with the department of Neurology yesterday to discuss possible collaboration. Kasey received good news (scholarship), as did Laura (residency). Maggie arrived, and Ana said goodbye. Sara had her last day before her maternity leave. I worked on Aaron’s manuscript and discussed a second paper for AEM on SDM/informed consent with Rachel.

May 26th. Last day at the KER Unit. Overwhelmed by how much I learned about the team, the work, the collaborations. And, to be honest: about myself and about my work as a researcher. I’m impressed how a team that advocates kind and careful care manages to practice what they preach and welcome guests in such a warm and friendly way. After saying goodbye to Kirsten, this kind and careful visit ended with a road trip with Ben to the airport. What an experience.

With love, Marleen

  Marleen Kunneman, PhD. Research fellow at the department of Medical Psychology of the Academic Medical Center, University of Amsterdam (the Netherlands), and research collaborator of the KER Unit.

*Note: Results of our Choice Awareness project will be presented at the European Association for Communication in Healthcare (EACH) Conference in Heidelberg (September 7th-10th, 2016). Oral presentation on September 10th: ‘Choice Awareness as Pre-requisite for Shared Decision Making in Videos of Clinical Encounters’.

My experience in KER unit

Short, deep, and intense are the three words that best describe my experience in KER unit. I learned a lot from each and every one of the incredible members of this family, they’re all admirable. Everybody loves to work and I love that. The work environment is at its finest. They’re highly productive, very kind, and very very friendly. They made me feel at home since the very beginning. This is the perfect place to do research. However, not any kind of research. But research that improves, with elegant solutions, the patient care.

One of the best lessons I take home is that when JP (“yei-pi”) and I were talking about a research project, and he told me: “Just remember that the results from every research must mark the beginning of another one and most contribute to the greater picture; every research project is bounded to the next one, so that all the projects together can contribute to improving the patient care”.

On my first day, Victor invited me for a cup of coffee. Walking back, I expressed my gratitude for having the opportunity of being able to be here and my full intention to work as much as possible. To what he answered: “KER unit is a place for grownups; it depends on you how much you want to work. If you want more work, ask for it; if you want less, just say”. Later, he concluded our chat with the following: “Dive into the pool, if it contains water, you’ll probably swim; if it doesn’t, you’ll only get a bump in the head”.

Throughout my stay here, I got involved in as many projects as I could. But most importantly, I had the support to develop a few of my own. I worked on a systematic review to assess the effectiveness of interventions made to foster cost conversations between patients and clinicians. I had the opportunity to start this review from the beginning and even to lead the project. Cost discussions are considered a key element for high quality care. Surprisingly, we found out that there is a huge lack of interventions to foster them!

Another project on which I have been working on is a critical appraisal of the cost-effectiveness analyses that have been made regarding type 2 diabetes treatment. Recent evidence demonstrated that all randomized clinical trials and meta-analyses of randomized clinical trials have failed to prove that intense glycemic control reduces the incidence of patient important outcomes such as myocardial infarction or stroke. So, we are trying to identify the sources of information from where these analyses calculate the effectiveness. This is a very important project because cost-effectiveness analyses are often made to justify new treatment options for populations of patients (e.g. countries).

Research has become a great passion in my life. It has changed my way of thinking, acting, and approaching and resolving problems. It’s awesome and very satisfactory the fact that you can generate knowledge through research. But it is even more when you know that your work is contributing to a bigger purpose: to get closer to the type of care that every patient deserves.

My stay here ends because I must go back to finish medical school and to support my research team back home with the establishment of the new KER unit in Mexico. During my six weeks with the KER family, I worked very hard every day from the morning through the night, and I discovered that I am capable of much more than I thought. Nevertheless, this capability of mine, is conditioned: I need to have a good team, and in KER unit, I have the best. Thanks to my team, I dived into the pool, I found water, and I swam.

I leave without wanting to. I leave with eager to come back.

Thanks to the KER family for this great opportunity!

Frank Barrera
INVEST-KER Unit, Faculty of Medicine, Universidad Autonoma de Nuevo Leon
Monterrey, Nuevo León, México

“Problem-solving”…?

Submitted by Dorothea Lagrange

I am a practicing physician in Sweden, where I have lived for many years. Often, I travel back to my home country of Germany and during my travels I enjoy looking at postcards. Most are quite funny, but sometimes beyond the humor is a message more profound. My favorites involve problem solving. Take for example these three:

Wenn das die Lösung ist, will ich mein Problem zurück!

If this is the solution, I want my problem back!

Ich habe keine Lösung, aber ich bewundere das Problem.

I don‘t have a solution, but I admire the problem.

Ich habe eine Lösung, aber sie passt nicht zum Problem.

I have a solution, but it doesn‘t fit to the problem.

This last postcard reminded me of my own experiences of care where the solutions people came up with did not fit the problem I was facing.

Some years ago I had an operation to my thyroid gland. Despite the surgeon’s confidence that he avoided damage to the laryngeal nerve, I experienced several complications. I could not talk above a whisper, I could not speak for long periods of time, I couldn’t even walk and talk at the same time. On top of all that, I would get breathless with even the slighest exertion and I had difficulty drinking without the fluid going down the wrong way!

I was devastated! Unfortunately, my well-meaning friends did not always help; their solutions did not fit the problem I was experiencing.

Some talked louder – but there was nothing wrong with my hearing.

Some talked in simple sentences – but my brain was still working alright.

And someone even switched into English. I am aware of my accent – but that didn’t get any worse, and normally my Swedish works just fine.

Thus, with the best of intentions, all these people had spontaneously come up with solutions without analyzing the problem first, and that can hurt.

It hurt because they did not see me as I am, someone with a well functioning brain, who could speak Swedish and hear just fine. Their assumptions about me distanced me from them and made me feel as Susan Sontag once said as part of the „kingdom of the sick“. Luckily, I recovered fully and I am now able to work as a GP. However, my experience with illness  taught me about the importance of listening. Even if it is a few extra seconds, the extra time spent determining the problem before jumping to a solution is invaluable.  In everyday consultations, our diagnostic thinking and our intention to find solutions starts directly with the patients’ first words. Physicians on average, interrupt patients within seconds as they rush to find a solution. We should let the patients tell their story. This is not only respectful, but may also help us diagnose the real problem facing the patient. As William Osler is purported to have said „ Listen to your patient; he is telling you the diagnosis“. Additionally, we have to see the patient as a whole person with the illness being only a limited part of him or her – and that part needs to be defined before suggesting or trying out solutions.

My name is Dorothea Lagrange. I was born and raised in  Germany and that is where I trained and began my medical  career. After taking a long time off to start a family, I got back into medicine and I currently work as a general practitioner in Sweden. I love my work and I work with fantastic colleagues and wonderful patients with diverse backgrounds. In addition to being a physician I am also a mother, relative, friend, and a patient myself – all roles which give me different views of medicine and health.

Listening

Submitted by Dorothea Lagrange

Throughout Europe there are many beggars from poorer countries. They are seldom welcome. What often gets lost in the rhetoric around these individuals is that these are real people, people who are often vulnerable and in need. In Sweden, where I live, I often encounter these beggars. I wish to tell you the story of one of these individuals and how they affected me.

I live in a small village and one day when leaving the market, I noticed an old man sitting on the ground. I had noticed him before, but today he looked especially haggard and was coughing persistently.

I did not know what to do. My heart ached for this man’s suffering, however, there were many stories about these people, mainly from Romania, that they operated some kind of Mafia where they could not keep any money they collected. This internal conflict made me hesitate, yet, I could not ignore the man in front of me, sitting in the cold, dark, wet, winter night. I thought to myself no one would do this voluntarily; his situation must be truly sad to place him here.

I resolved to go back into the market and buy him some food. After a few times of bringing him food, something amazing happened. He began to give me food! I was embarrassed, here was a man with practically nothing giving me what little he had. With no language in common it was hard for us to communicate, but with pantomime and pictures we began to have our own “conversations” and overtime I learned some Romanian. Sometimes we really had fun and laughed together. The other visitors to the shop stared at us sometimes, probably wondering what we were up to.

I found out that I had done what many of my compatriots had done and this man had more food than he could eat! I learned that while food was helpful, what this man really needed was warm clothes and fuel for his car. The car, it turned out, was not for driving as he did not drive, but for shelter and warmth. Additionally, he confided in me that he longed for a proper haircut; something many of us take for granted. After these conversations I had a realization. When I saw him there on the ground I made assumptions about his situation and jumped to a solution based upon my assumptions. I had solved a problem that he did not really have.

It was a reminder that I need to listen and not create solutions before I have figured out the problem. Sometime later he was admitted to the hospital, his years of smoking and tuberculosis had gotten the better of him. Despite his socioeconomic status, he was well cared for and a translator was brought in to help him communicate with the medical team. Additionally, to help him communicate, the nurses made large cards with the Swedish word on one side and Romanian word on the other. One that I was especially fond of, was one that said “coffee”. Someone added on the Swedish side in small letters “with milk and sugar”. The nurses saw him as the individual he was and restored his dignity.

Costel was a man who loved Baroque music and had previously worked in construction. Costel has since passed away, and the last word in Romanian I learned from him was macara, a crane. That however, was not that last thing Costel would teach me. In reflecting on and sharing my experience it is a reminder to always listen. Even if we think it is obvious what someone needs we cannot be sure unless we listen. Also, he taught me that even the poorest of our fellow humans are individuals and stereotypes may often mislead us. Stereotypes may have some grain of truth in them, but they are only part of the picture. It is easy to miss the rest if you don’t open up and allow for listening first.

This insight is very valuable in my daily life as a family doctor. Here, too, listening must come first. This is easily said, but so often in the rush of the day overlooked. Far too often we think we know what the patient wants or needs – and it turns out it is something completely different the patient is looking for. Without knowing what the patient wants, any suggestions about investigations or treatments are not meaningful and patriarchal.

Listening also helps to put stereotypes aside and to see the individual in the encounter. We do have to learn and understand medicine on a solid scientific ground and I am very fond of evidence. We do have to understand the world with data. But we must then go one step further and treat our patients with these data in mind not as a patient like this, but this patient. Who, in this case, loves his coffee with milk and sugar.