Tag: patient care

MDM in practice, Reflections on MDM, Research on MDM

Making care fit in the lives of young adults with type 1 diabetes

Marleen Kunneman, Matthijs Graner, and Viet-Thi Tran

Even if care seems right from a medical perspective, if care doesn’t fit for each individual, we may ‘deliver care’ without actually ‘caring’. The recently published Making Care Fit Manifesto (1) states that for care to fit, care should be maximally responsive to patients’ unique situation and supportive to their priorities. Care should also be minimally disruptive to patients’ lives, loved ones, and social network. Making care fit requires patients (and their caregivers) and clinicians to collaborate, both in content and manner, and it is an ongoing and iterative process where care plans should continuously be evaluated and modified.

This is especially pertinent for young adults living with type 1 diabetes. Previous research showed that young adults with type 1 diabetes have relatively poor biomedical and psychosocial outcomes (2,3). For example, HbA1c levels are higher in younger adults compared to other age groups, and strikingly, they are also higher now than they were a decade ago (3).

At the same time, very little is known about what young adults do to implement diabetes care in their lives, and what price they have to pay in terms of negative effects on themselves and their surroundings. Also, how do we bridge what happens in their personal environment (‘point of life’) and what happens during clinical encounters (‘point of care’)? Because whatever is left undiscussed with their clinicians, is also left unconsidered when designing care plans.

We explored experiences of young adults with type 1 diabetes trying to make care fit into their lives. First, we asked 62 young adults with type 1 diabetes (Median age: 27, IQR 24 to 27, 80% women) from the French ‘Community of Patients for Research’ (ComPaRe) for their experiences with the burden of treatment. They reported a high burden4 of diabetes treatment (76.5 out of 150, IIQR 59 to 94). Importantly, 3 of every 4 young adults (74%) reported that their investment of time, energy, and efforts in healthcare is unsustainable over time. This is about twice as high as for other people with chronic conditions.

Second, the Dutch ééndiabetes foundation (for and by young adults with type 1 diabetes) asked its members for their experiences in making diabetes care fit into their lives. Nine of 25 young adults (36%) indicated that their diabetes care regularly or very often hinders their education, work, hobbies, leisure or social lives. When asked to describe their biggest efforts to fit diabetes care into their daily life, they responded:

“You want to live a fun and spontaneous life, but you have to nonstop keep an eye on your sugars.”

“Food. Everything you have to do then. That’s why I sometimes skip my meals.”

“Planning. Not just the hospital appointments and changing needles, but also planning with the energy I will or will not have.”

“Regulating hypo’s and then compensating for the time I couldn’t function well due to a hypo.”

“On time and constant planning ahead. What do I need? Do I have all my stuff before I leave? When do I have to place new orders to make sure I don’t run out?”

Additionally, we asked young adults what they do to fit diabetes care into their lives, but what they don’t discuss with their clinician. Some indicated they discuss “everything” or “nothing” with their clinician. Others said:

“I use a DIY loop. (I did tell my clinician but he wasn’t interested)”

“I delay my hospital appointments as long as I can.”

“I discuss everything about my diabetes with my clinician. All the better they can help me.”

“I bolus less to prevent hypos.”

Communication is key to bridge efforts of making care fit at the point of life and at the point of care. Our future work will focus on uncovering better ways to improve the quality of diabetes care through improving conversations. And to help young adults with their lifelong, daily and ongoing endeavor of making diabetes care fit.

 

References

  1. Kunneman M, Griffioen IPM, Labrie NHM, Kristiansen M, Montori VM, van Beusekom MM, Making Care Fit Working G. Making care fit manifesto. BMJ Evid Based Med. 2021.
  2. Johnson B, Elliott J, Scott A, Heller S, Eiser C. Medical and psychological outcomes for young adults with Type 1 diabetes: no improvement despite recent advances in diabetes care. Diabet Med. 2014;31(2):227-231.
  3. Redondo MJ, Libman I, Maahs DM, Lyons SK, SaracoM, Reusch J, Rodriguez H, DiMeglio LA. The Evolution of Hemoglobin A1c Targets for Youth With Type 1 Diabetes: Rationale and Supporting Evidence. Diabetes Care. 2021;44(2):301-312.
  4. Tran VT, Harrington M, Montori VM, Barnes C, Wicks P, Ravaud P. Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform. BMC Med. 2014;12:109.

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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.

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Caring For Each Other: The Charter on Physician Well-Being by Colin West, M.D

Physician well-being is recognized as a critical contributor to how patients experience health care, but physicians are too often distressed, burned out, and dissatisfied. Attention to physician well-being offers benefits to every member of the health care system. Of particular relevance to this blog site, shared decision making and its promotion of meaningful relationships with patients is likely to be associated with improved physician well-being. However, despite overwhelming evidence identifying the scope of the problem, barriers to well-being, and solutions, medicine has lacked a unifying framework to anchor efforts to promote physician well-being.

In response to this need, the Collaborative for Healing and Renewal in Medicine (CHARM), in partnership with the Arnold P. Gold Foundation, convened a work group to develop the recently published Charter on Physician Well-Being. Modeled after the American Board of Internal Medicine’s The Physician Charter on medical professionalism, the Charter on Physician Well-Being begins with a preamble followed by four guiding principles intended to establish the foundational rationale and structure for physician well-being efforts.

Guiding Principles:

  1. Effective patient care promotes and requires physician well-being.
  2. Physician well-being is related with the well-being of all members of the health care team.
  3. Physician well-being is a quality marker.
  4. Physician well-being is a shared responsibility.

A set of eight key commitments follows, recognizing the shared responsibility for well-being that exists between individual physicians, the institutions they work in, and society at large.

Key Commitments:

  1. Foster a trustworthy and supportive culture in medicine.
  2. Advocate for policies that enhance well-being.
  3. Build supportive systems.
  4. Develop engaged leadership.
  5. Optimize highly functioning interprofessional teams.
  6. Anticipate and respond to inherent emotional challenges of physician work.
  7. Prioritize mental health care.
  8. Practice and promote self-care.

A current list of endorsing/supporting organizations is here, and the Charter work group hopes that as this list grows, endorsing bodies and institutions will challenge themselves to apply these commitments in setting a course of action to promote physician well-being. With the support and endorsement of key organizations in medical education and beyond such as the American Medical Association, the Charter establishes core principles learners, physicians, and institutions should expect of themselves and of each other.

The Charter work group believes that a health care system should value the well-being of its workforce equally with other measures of high-value care. Although the well-being of physicians deserves attention in its own right, patients and the health care system will also inevitably benefit if the principles set forth in the Charter help physicians to be well. Dr. Francis Peabody wrote in 1927 that “… the secret of the care of the patient is in caring for the patient.” We now know that physicians can best care for patients when they are themselves cared for. The Charter on Physician Well-Being establishes the structure necessary to make this happen. Our patients are counting on us as individuals, organizations, and as a profession to get this right

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Dr. West is Professor of Medicine, Medical Education, and Biostatistics at Mayo. His research has focused on medical education and physician well-being, and he is Co-Director of the Mayo Clinic Program on Physician Well-Being. His work documenting the epidemiology and consequences of physician distress, as well as emerging research on solutions, has been widely published in prominent journals including Lancet, JAMA, Annals of Internal Medicine, and JAMA Internal Medicine.

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“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.

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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

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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