Posts (28)

Thu, Jul 20 12:19pm · Shared Decision Making: from Buenos Aires to Lyon

Submitted by Paula Riganti

We were very thrilled to participate at the ISDM conference in Lyon. We were honored to had been invited to contribute in the Special ISDM ZEFQ Issue regarding the state of implementation of SDM in different countries. The development of SDM in our country is challenging, as Mariela Barani, our lead researcher, has discussed with other colleagues at the Sunday Workshop on national strategies for implementing SDM.

We are currently exploring the perceptions from our health professionals and patients regarding SDM in our setting. Our activities in this conference included the presentation of our latest research on trans-cultural adaptation of SDM measuring, a co-chairing of one of the oral sessions and three poster presentations about women’s perceptions on breast cancer screening, a validation of a search filter for studies on patient’s values and preferences, and health professionals and patients perceptions regarding participation in SDM in a low health literacy community.  It was a great opportunity to learn from other experiences and become enlightened with a wide variety of research studies.

We highlight the need for short validated tools in non-English speaking languages to aid the evaluation and improvement of clinical practice. We think that this conference will help us improve our initiative to locally empower patient-centered care research and implementation.

We also reflected with Victor Montori about SDM and financial incentives. It is on vogue worldwide today the use of financial incentives to boost SDM activities. But in practice, our perception is that those incentives only stimulate the simply registration of the use of a decision aid but does not guarantee that a SDM conversation has taken place between the patient and his caregiver. Victor agreed with us and also added other arguments for not incentivizing with money SDM: 1) SDM is good practice and that is enough to justify its introduction in clinical practice; 2) When you start paying for something, money will not last forever and after some time you will be in need of changing the financial incentive to other indicator or stop paying for it. And caregivers that have been payed for doing SDM until that moment will ask for money to continue doing it; 3) Once you start incentivize a SDM indicator, it will go up because doctors know that you are measuring it and they are being evaluated trough that indicator. After some time, when doctors forget about it, it will decline. This is called Hawthorne effect, also referred to as the observer effect, and is a type of reactivity in which individuals modify an aspect of their behavior in response to their awareness of being observed.

So we came to the conclusion that to incentivize SDM, we have to work on changing culture and make SDM a part of clinical practice.

Tue, May 2 10:49am · A case of the best, worst, and most likely

 

Dr. Margaret Schwarze, a surgeon from the University of Wisconsin, and her colleagues published a proof of concept study “A Framework to Improve Surgeon Communication in High-Stakes Surgical Decisions—Best Case/Worst Case.”1 (https://www.ncbi.nlm.nih.gov/pubmed/28146230) This article was recently the topic of discussion during our bi-weekly Shared Decision Making working group.

Schwarze and colleagues described that hospitalized elderly adults who have urgent surgical conditions may receive unwanted burdensome surgical care at the end of life.  Routine discussions between surgeons and elderly patients may not result in a care plan that authentically honors the goals, values, and preferences of patients.

To improve these discussions, they developed a “Best Case/Worst Case” framework to discuss high stakes surgical decisions (https://www.youtube.com/watch?v=FnS3K44sbu0).  Surgeons were instructed to draw two lines on a paper.  One line represented the option of pursuing surgical treatment and the other line represented the option of choosing supportive care.  At the top of each line (or option), the surgeon would write and write and describe the “best case scenario” (or outcome) of that option.  At the bottom of each line, the surgeon would write and describe the “worst case scenario” of each option.  Somewhere in the middle, the surgeon would describe the “most likely scenario” of each treatment option.  Surgeons were allowed to describe each best and worst case scenario as they best saw fit according to the individual patient circumstances.  Thirty cardiac, vascular, and general surgeons at the University of Wisconsin completed a two hour training on the communication framework.

In this pre/post study, investigators enrolled 32 elderly hospitalized patients with urgent, but not emergent, surgical conditions with a high risk of adverse outcome (≥40% risk for serious surgical complication or ≥8% risk of death).  In the pre-intervention group, usual care conversations were audiotaped.  In the post-intervention group, conversations using the “best case/worst case” framework were audiotaped.

The primary outcome was the OPTION 5 score (https://www.ncbi.nlm.nih.gov/pubmed/25956069), which allows a rater to rate the decision making process on 1) presentation of multiple options, 2) establishment of a partnership with the patient, 3) description of the treatment differences in each option, 4) elicitation of patient preferences, and 5) integration of patient preferences into the plan.

Prior to the intervention, the median OPTION 5 score of audiotaped conversations was 41 (on a 0-100 scale)—and improved to 74 in the post-intervention group.  Surgeons in the intervention group were more likely to involve patients and families in decision making, were more likely to present various treatment choices, and were more likely to describe outcomes rather than isolated procedural risks.

During the discussion at our SDM working group, several strengths of this approach were noted:

  • This method was easily adoptable by surgeons and can be used in high stakes decisions in the acute hospital setting.
  • Whereas many patients undergoing potentially risky surgical procedures may not be aware of potential complications, this method formally allowed for patients and surgeons to at least consider a “worst case scenario.” This has the potential to spark discussion about what a patient values most in determining a treatment plan.
  • This method allowed surgeons the flexibility to tailor the treatment options as well as the outcomes of those options to the individual patient. This may therefore represent a universal, non-disease and non-context specific method to improve shared decision making discussions in general.

We also noted several questions and limitations:

  • What constitutes a “best case” or “worst case” outcome may considerably vary between patients—as patients value different things when faced with high stakes, end of life decisions. Some people at our working group thought that the example descriptions of the “most likely” outcome actually seemed worse than the example descriptions of the “worst case” outcomes.  Who determines what the best and worst case scenarios were?  Was this left up to the individual surgeon?  Were the descriptions standardized in any way?  Were questions asked to assess if description of best and worst outcomes rang true to the individual patient?  How much were patients influenced by a potentially biased presentation of one treatment option versus the other?  What do we know about the patients’ perspectives and interpretations of the best case and worst case scenarios?
  • To our knowledge, the likelihood of the outcomes was not specifically disclosed in a salient manner. If one were to apply the best case/worst case methodology to a “lower stakes” decision, the worst case scenario may be very rare—and the most common outcome a particular decision may be that nothing changes.
  • Even though the OPTION 5 score was higher in the post intervention group, does this really mean that a better decision was made? While we agree that the OPTION 5 (https://www.ncbi.nlm.nih.gov/pubmed/25956069 ) and OPTION 12 (https://www.ncbi.nlm.nih.gov/pubmed/15713169) scores represent a good attempt to measure a certain quality of shared decision making, there are still various aspects of decision making that are overlooked.  Tools to better measure the quality of decision making are needed.
  • While we congratulate the authors on having a high inter-observer agreement regarding ratings on the OPTION 5 score (.8), this is much higher than what most other groups (including our group and the group validating the instrument) (https://www.ncbi.nlm.nih.gov/pubmed/25956069) have been able to achieve (.6 to .7). In addition, both the pre-intervention and post-intervention OPTION 5 scores were quite a bit higher than what we have seen in other trials, including ours.  Additional information about the process of training observers and measuring inter-observer reliability is desirable.

Overall, Dr. Schwarze and colleagues (http://www.surgery.wisc.edu/research/researchers-labs/schwarze/) showed that a framework for formally presenting the best case outcome, worst case outcome, and most likely outcome of various treatment options increased shared decision making as measured by the OPTION 5 score.  We congratulate Dr. Schwarze and colleagues for developing and testing a framework to try to improve decision making for high stakes surgical decisions for hospitalized elderly adults!

Submitted by Michael Wilson, M.D.  Dr.  Wilson studies end-of-life decision-making in the hospital and intensive care unit (ICU).  He aims to improve individualized prognostication, shared decision-making and the delivery of quality palliative care to patients and their family members in the hospital setting.

 

References

  1. Taylor LJ, Nabozny MJ, Steffens NM, et al. A Framework to Improve Surgeon Communication in High-Stakes Surgical Decisions: Best Case/Worst Case. JAMA Surg 2017.

Fri, Apr 14 8:57am · On Cars and Caring: How metaphors can be (un)helpful

Submitted by Marleen Kunneman, PhD; Michael R. Gionfriddo, PharmD, PhD; Victor M. Montori, MD, MSc

Metaphors are common in clinical medicine and can be helpful in discussing and understanding the complexities of health and illness. Blood vessels are like plumbing, the brain is like a computer, and when facing illness we use all weapons available to fight the disease. The creativity of the human mind is boundless. Metaphors can help communicate and retain complex concepts between clinicians and between clinicians and patients, with clinicians who use more metaphors considered better communicators.1 Yet, these metaphors can be unhelpful when they become so internalised that we don’t recognize them anymore, and, unconsciously, they shape how we think and act. 2

When it comes to medical decision making, the relationship between the clinician and the patient is often compared to a pilot that takes a passenger to his destination, a plumber that fixes the leak, or a mechanic that fixes your car. We need to accept that the pilot, the plumber and the mechanic are the experts and that they are therefore able to make decisions about how to address the problems. We, the ordinary people, have not studied and/or gained sufficient experience to understand these issues, let alone to be meaningfully involved in making such decisions. Such metaphors are often used by opponents of shared decision making to illustrate that the expertise necessary to understand the complex issues of health and illness is not easily translated in the limited time frame of an encounter, and therefore, patients should respect and trust clinicians’ expertise and delegate to them the difficult task of deciding what to do.

In shared decision making (SDM), clinicians and patients work together to figure out how to best address the patient’s situation. It is a conversation between the clinician and patient, a way to craft care, and a way to fundamentally care for this patient, not just for people like this patient. 3 This characteristic makes it inappropriate to use metaphors like mechanics fixing a car. Mechanics take care of cars, not of the owners. It is rare, exceptional, for a mechanic (or pilot, or plumber) to see the owner’s situation in high definition. At best, in fulfilling their duties – fixing the car – they can honor the relationship between the ‘object’ and the ‘owner’.  In fundamentally caring for this patient, however, clinicians must take care of both the object – the body – and the owner. This is because, as Hitchens said, patients don’t have a body, they are a body.4

A serious illness that disrupts a person’s hopes and dreams should not be compared to a bump in the road which causes your car to break down. The car does not ‘feel’. The car does not experience side effects. Having an issue or needing maintenance does not change the cars experience of being a car or how it views itself, or it’s ‘carness’. Conversely, humans do feel, they experience side effects, and illness can affect how people view themselves and their place and relationship with society. Furthermore, if the patient’s situation is not addressed in a way that fits their life, they cannot just go back to the shop and undo the repair. Or just replace the broken parts, or, for that matter, get a new ‘object’ and replace the old one altogether. If only health were that simple. Indeed, in a service industry like automobile repair, you don’t co-create an oil change.5 But when it comes to care, clinicians and patients co-create ways to address the patient’s situation. It is this patient’s situation that should shape how care is decided on and delivered, and the method behind care and decisions about health care is the deeply human activity of having meaningful conversations between clinicians and patients.

Using de-humanizing comparisons can be problematic in shaping how we think and act, and in how we are understood and perceived. Most importantly, when using such metaphors, a fundamental aspect of medicine – caring – gets lost, forgotten, or neglected. Metaphors are common and they can support a complex conversation about health or illness, but we must be careful that these metaphors do not distract us from caring.

References

  1. Casarett D, Pickard A, Fishman JM, et al. Can metaphors and analogies improve communication with seriously ill patients? J Palliat Med. 2010;13(3):255-260.
  2. https://www.theatlantic.com/health/archive/2014/08/the-trouble-with-medicines-metaphors/374982/. (2014) Accessed April 2017.
  3. Kunneman M, Montori VM, Castaneda-Guarderas A, Hess E. What is shared decision making? (and what it is not). Acad Emerg Med. 2016;23(12):1320-1324.
  4. Hitchens, C. Mortality. (2012) Atlantic Books Ltd.
  5. Leppin, AL. https://minimallydisruptivemedicine.org/2013/08/23/minimally-disruptive-medicine-at-your-service/ (2013) Accessed March 2017.

 

Fri, Mar 24 9:10am · Shared decision making in immigrant patients

Authors: Claudia C. Dobler, Gabriela Spencer-Bonilla, Michael R. Gionfriddo, Juan Pablo Brito

Shared decision making (SDM) has been widely advocated [1] and called the pinnacle of patient-centered care [2]. Translating this ideal into reality has proven challenging [3]. Several papers have identified barriers to the translation of SDM into practice [4-6]. A number of challenges arise in the context of intercultural and inter-linguistic SDM, which may be particularly pertinent to immigrant populations. Some of the challenges of SDM in an intercultural context have been summarized in a paper by Suurmond et al. [7]. These challenges include 1) language barriers, need for interpreters, 2) differences in health beliefs and concepts of illness between the patient and clinician, 3) differences in role expectations, e.g. an apparent preference for a paternalistic approach or desire for family-centered model of decision making, 4) consultation situation (e.g. time constraint and lack of culturally adapted patient information), and 5) low health literacy. Recently, our SDM Working group at Mayo discussed this article with the lens of applying the lessons to the development of an SDM tool for immigrant patients discussing preventive tuberculosis treatment with their clinicians.

A core component of SDM is communication. When clinicians and patients have to communicate through an interpreter, the work of SDM is complicated by: incorporating a third party into a sometimes intimate conversation, disruption of typical communication flow, lengthening of the medical encounter, and the telephone effect when interpreters engage in interpretation and curation of language rather than pure translation.  Interpreters, whether professional or lay, may make judgments about which information is important to convey to patients (and back to the clinician) and which information is not. Little is known about how this form of triadic communication affects the process of SDM and the extent to which interpreters’ knowledge, attitudes and beliefs affect SDM and the use of SDM tools in clinical encounters.  A recently published study that analyzed three consultations with an interpreter in which an Option Grid for osteoarthritis was used, found that discussions of treatment options were mainly between clinician and interpreter [8]. Patients had only minimal participation in the discussion with an average of four words articulated when they had an opportunity to speak, indicating that patients did not have a significant role in discussing treatment options.

In addition to differences in language, patients may have illness narratives [9] and health literacy which do not align with those of their clinicians. Providing care is also complicated by the fact that immigrants, especially those newly arrived in the destination country and with limited socio-economic resources, can have pressing material needs and concerns like providing for the daily needs of their families. A holistic approach to improving health and well-being must also take into account each patient’s context in the decision making process.

A single solution will not address all of these barriers, and more research is needed to determine the effectiveness of available interventions. For conversations that require interpreters, more research is needed around the dynamics of these triadic conversations as well as strategies for facilitating SDM in this context. For example, future research in this area could evaluate the effect of academic detailing (on SDM and the use of encounter decision aids), or training of interpreters on using SDM during the clinical encounter. Testing whether this could be achieved with interpreters working over the phone has the potential for widespread implementation.  Research is also required to find models of SDM that do not only facilitate collaborative deliberation between two individuals (the patient and the clinician), but facilitate the inclusion of family members and carers into the decision making process. To adapt to cultural differences, group education classes or shared visits in addition to individual encounters may help create a cohesive narrative between patients and clinicians. This strategy is currently being implemented by one of our collaborators in China. As many cultures have a family-centered model of decision making, patients’ families could be integrated into these group classes as well.

At times, SDM conversations will need to incorporate existential or practical needs that extend beyond a specific medical decision. Thus, components  of the ICAN tool, which can help prompt conversation about the patient’s context and situation including goals, priorities, capacity, and burden [10], may be a useful addition to a SDM intervention in this disease context.

While ongoing refugee crises throughout the world have highlighted the limitations of current approaches to SDM, these challenges exist to varying degrees in all encounters; we all have our own microcultures and idiosyncrasies.  Discovering how to communicate with one another in an effective, respectful, compassionate, and empathic manner is essential for the realization of the promises of patient-centered care.

We welcome the opportunity for continued conversations and collaborations. Please share your comments, stories and experiences in this area. Contact us at KERUNIT@mayo.edu.

References

  1. Frosch DL, Moulton BW, Wexler RM, Holmes-Rovner M, Volk RJ, Levin CA. Shared decision making in the United States: policy and implementation activity on multiple fronts. Z Evid Fortbild Qual Gesundhwes 2011: 105(4): 305-312.
  2. Barry MJ, Edgman-Levitan S. Shared decision making–pinnacle of patient-centered care. N Engl J Med 2012: 366(9): 780-781.
  3. Elwyn G, Scholl I, Tietbohl C, Mann M, Edwards AG, Clay C, Legare F, van der Weijden T, Lewis CL, Wexler RM, Frosch DL. “Many miles to go …”: a systematic review of the implementation of patient decision support interventions into routine clinical practice. BMC medical informatics and decision making 2013: 13 Suppl 2: S14.
  4. Legare F, Thompson-Leduc P. Twelve myths about shared decision making. Patient education and counseling 2014: 96(3): 281-286.
  5. Joseph-Williams N, Elwyn G, Edwards A. Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient education and counseling 2014: 94(3): 291-309.
  6. Legare F, Witteman HO. Shared decision making: examining key elements and barriers to adoption into routine clinical practice. Health Aff (Millwood) 2013: 32(2): 276-284.
  7. Suurmond J, Seeleman C. Shared decision-making in an intercultural context. Barriers in the interaction between physicians and immigrant patients. Patient education and counseling 2006: 60(2): 253-259.
  8. Wood F, Phillips K, Edwards A, Elwyn G. Working with interpreters: The challenges of introducing Option Grid patient decision aids. Patient education and counseling 2017: 100(3): 456-464.
  9. Kleinman Arthur. The Illness Narratives: Suffering, Healing, And The Human Condition. Basic Books, 1988.
  10. Boehmer KR, Hargraves IG, Allen SV, Matthews MR, Maher C, Montori VM. Meaningful conversations in living with and treating chronic conditions: development of the ICAN discussion aid. BMC Health Serv Res 2016: 16(1): 514.

Jul 14, 2016 · Communication is a challenge

Submitted by Jennifer Barton, M.D.

Communication is a challenge in my practice. As a rheumatologist in a busy, public hospital clinic, I had the privilege of caring for patients who spoke Spanish (a third), Cantonese (a third), Vietnamese, Russian, Lao, Tagalog, or English. Much can be conveyed in a smile or a warm handshake, but this is insufficient when  patient and doctor need to make decisions about a complex chronic condition like rheumatoid arthritis (RA). In particular, it was hard to identify how best to manage their conditions with one of  over a dozen available treatments.  In my toolbox, there was a gaping hole with no tools available to facilitate RA treatment conversations for this needy population.

Sitting at my desk on a Sunday afternoon drafting a grant proposal to create tools for shared decision making for diverse populations with RA, I came across a paper describing a clinical trial of a decision aid for diabetes. Diabetes and RA share many similarities:

  • both are chronic diseases,
  • both have many options for treatment with differing risks and benefits and costs, and
  • both require substantial patient self-management.

This decision aid was colorful, broken out into “issue” cards – like baseball cards (except not by player, or in this case by drug, but by feature), which I thought would be a great template for an RA decision aid, one that could be presented in different languages for patients with limited health literacy.

On a whim, I wrote to the corresponding author to see if I could learn more about the process and perhaps even use their tool as a template. Within hours, I received an enthusiastic reply from Victor Montori at the Mayo Clinic. This led to a phone call, the proposal, funding, and the work generated from fruitful collaboration and inspiration.

The journey from grant writing to project completion was filled with many adventures. I had never worked with designers or with patients in research. I looked forwaPatient Advisory Boardrd to the meetings of our patient advisory board. They were full of laughter and shared  stories. Thanks to them I  learned about real life with RA. I got a chance to listen to the patients share experiences living with RA, getting tips, and finding value and support in one another. Working with patients was hands down the most satisfying and humbling part of the process for me.

Our most recent paper describes the results of a pilot study of 166 patients with RA from vulnerable populations (racial/ethnic minority, age >65, limited health literacy, immigrant status, non-English language) that tested a low literacy RA medication summary guide and RA Choice, the decision aid. We showed that the tools improved knowledge and reduced decisional conflict in this diverse population.

Now after all the hard work, and the results of the pilot study showing the tools worked in our patient population, we want to share the tools and improve conversations for patients with RA and their clinicians everywhere. RA is a chronic, disabling condition which leads to early mortality. Patients made vulnerable by how we deliver healthcare to them experience worse outcomes, and communication in these groups still needs work. Our hope is that with these tools and continued attention to the needs of all groups in the RA community, we can help reduce disparities and improve care for all patients with RA.

 

Jennifer Barton, MDJennifer Barton, MD
Associate Professor of Medicine, OHSU
Staff Rheumatologist, Portland VA Medical Center
Dr. Barton is an academic rheumatologist with a research focus on health communication and rheumatic diseases.

 

For more information on Rheumatoid Arthritis (RA) Choice, click here.

Jun 23, 2016 · 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

_42A7389-2_klein  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’.

Mar 30, 2016 · 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

 

Mar 16, 2016 · 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

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