Burden of treatment: the work of being a patient

By Tran V-T.

 A patient with type 2 diabetes could spend a little over two hours a day on average following all doctors’ recommendations [1].

About 45% of the population has at least one chronic condition. In addition to the burden of illness, patients are affected by the burden of treatment, defined as the impact of the “work of being a patient” on functioning and well-being. This work includes medication management, self-monitoring, visits to the doctor, laboratory tests, lifestyle changes, etc. Coping with all these healthcare tasks requires a significant amount of time, effort, and cognitive work from patients and caregivers.

We performed a multinational study to better understand the burden of treatment from the patient’s point of view [2]. A total of 1,053 participants in 34 different countries answered a series of open-ended questions about what doctors’ recommendations they found difficult to follow and why and how they adapted their everyday life to their treatments.

Patients expressed how healthcare tasks imposed on them by the healthcare system, such as arranging doctors appointments and filling out paperwork, affects their daily lives,“Being sick also adds a lot of extra tasks, paperwork and appointments. To keep myself healthy, I miss out on a lot of things that people my age take for granted – working fulltime, cooking, showering every day, going out to socialize” (25-year-old woman with Ehlers-Danlos Syndrome from the United Kingdom). We classified these tasks as 1) managing medications, 2) lifestyle changes, 3) condition and treatment follow-up, 4) paperwork tasks, and 5) learning about the condition and treatment (e.g., medication management, lifestyle changes, follow-up, etc.).

Second, we identified the factors that aggravated the burden of treatment. They were both structural factors (e.g., medication is not available at the pharmacy, access to test results, lack of coordination between care providers, wait lines, lack of parking space, etc.) and personal factors (patients’ beliefs about their conditions and treatment and difficulties they could have in their interactions with others). For example: “Trips to hospital at least every three months (are) burdensome because of distance and also parking charges. Annual reviews are difficult because there are multiple investigations required and these take place over multiple different appointments and sometimes at different hospitals in the same group.”(55-year-old woman with diabetes and a cardiac condition from the United Kingdom).

Finally, patients reported consequences of the burden of treatment, which could lead to poor adherence to treatments, financial burden, impact on professional, family and social life. For example:There is stuff that I am SUPPOSED to do, and stuff that I actually DO.  If I did everything I am SUPPOSED to do, my life would revolve around doctors and tests and such and there wouldn’t be very much left for living my life.  So I’ve made a bunch of choices (with the input of my family and friends, because it’s important for me to have their support).”(46-year-old woman with a mitochondrial disease from the United States).

To our knowledge, this is the first study to provide a comprehensive view of the components and consequences of the burden of treatment across multiple countries, settings and treatment context. Our findings fit the Cumulative Complexity Model [3] in that the burden of treatment perceived by patients is a complex phenomenon resulting from the combination of 1) the workload of healthcare imposed on patients; 2) patients’ capacities to integrate this workload of healthcare in their daily lives in terms of energy, time, money or support; and 3) the context, especially the structure of healthcare and social support from their families, relatives, and friends.

Our findings have several implications. First, our results may help clinicians better understand and identify patients who are overwhelmed by their treatments. In a previous study, we have shown that physicians fail to assess the burden of treatment of their patients [4], partly because it expresses a patient experience that is not shared in depth during consultations [5]. Second, healthcare should be integrated and coherent: every therapeutic intervention imposed on patients should be carefully weighed in terms of clinical benefit, interaction with other treatments, possible harms, and potential burdens. Such consideration could result in the prioritization of tasks and a net reduction in healthcare tasks imposed on patients. Third, this study highlights the need to change the paradigm of care for patients with chronic conditions and end fractured care focused on individual conditions. Treatment objectives should not be based solely on attaining specific goals in specific diseases but also on mitigating the impact of conditions and treatments on patients’ professional, family and social lives, for minimally disruptive medicine.

This preliminary work opens the door for more studies about the burden of treatment. As of today, researchers have only considered the burden of treatment for individual patients. I strongly believe that capacities of the patients’ families play a significant role in how patients can cope with the burden of treatment. In a future work, we would like to investigate this area.

IGroupe2n addition, our research has highlighted several aggravating factors of the burden of treatment (especially structural and personal factors) which could be targets for intervention to reduce the burden of treatment and improve patients’ quality of life.

Burden of Treatment decision aid

References

  1. Russell, L.B., D.C. Suh, and M.A. Safford, Time requirements for diabetes self-management: too much for many? J Fam Pract, 2005. 54(1): p. 52-6.
  2. Tran, V.T., et al., Taxonomy of the burden of treatment: a multicountry Web-based qualitative study of patients with chronic conditions. BMC Med, 2015. 13: p. 115.
  3. Shippee, N.D., et al., Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol, 2012. 65(10): p. 1041-51.
  4. Tran, V.T., et al., Development and description of measurement properties of an instrument to assess Treatment Burden among patients with multiple chronic conditions. BMC Med, 2012. 10: p. 68.
  5. Bohlen, K., et al., Overwhelmed patients: a videographic analysis of how patients with type 2 diabetes and clinicians articulate and address treatment burden during clinical encounters. Diabetes Care, 2012. 35(1): p. 47-9.

REPOST: Burden is a Heavy Word BUT Capacity Can Lighten It

This is a repost from Naturally Sweet Sisters from March 3, 2015

 I recently had the pleasure of listening to a presentation called Minimally Disruptive Medicine with Victor Montori, MD, @vmontori brought in by Joyce Lee, MD, @joyclee through the C3N Project, #c3n an exciting collaborative group of clinicians, patients, researchers that are focused on creating patient-centered care for patients with diabetes.  

While Dr. Montori worked extensively with patients living with Type 2 Diabetes, I still found the idea of burden and capacity as deeply meaningful for our world of T1d.  So much so, that I wrote down a few thoughts to help encourage other clinicians and researchers a clear way to understand what patients and caregivers deal with ‘behind the scenes’ of a three-month clinic appointment. 

How do some patients fare better than others?  How do we share those things that make some patients more successful?  The nagging unanswered questions remain.  At the end of this article, I tacked on some positive skills that we as a family have incorporated and continue to use today.  I don’t know if there is a right or wrong way to approach this – I just know there are better ways.

This isn’t typical content for Naturally Sweet Sisters, but I believe from places of darkness, there can be much good – like care that is centered around what a patient truly needs.

Don’t forget to find us on Twitter @natsweetsisters  #c3n #makehealth 

I own a car.  Maybe you do as well.

If you choose to own a vehicle, than you accept that you must care for the car; such as purchase gas, perform maintenance checks and pay for repairs.  You also accept that in order to drive the vehicle, you must obtain a driver’s license and purchase car insurance.  Mostly (and all of us on the road hope for this!), you accept that you need to obey traffic laws and drive in conditions that allow you to be prepared for anything that you could jeopardize your vehicle ownership, such as locking the doors at night or stowing the vehicle in a garage during inclement weather.

While this is actually a burden (think in terms of money, time, effort, wasted thought), I bet no one would ever consider it as such.  The alternative to a car is being stuck hitching a ride on public transportation, a bicycle or horror of horrors in this day and age, your own two feet.

The burden of owning a car doesn’t overwhelm me because I created the capacity to easily bring it into my life.  I have enough financial, emotional and physical space to allow for a vehicle to not overpower my well-being.  Within my personal limits, the burden of a vehicle can be managed.

Let me emphasize my enjoyment of owning a vehicle, take one look outside my window at the current mid-western weather of March snow, sleet and sub-zero temperatures, and I think you would be pretty happy to not have to trudge to a bus stop.

Let’s take this positive vehicle burden analogy and compare it to the burden of Type 1 Diabetes (T1D).

Unlike a car purchase, we did not choose to bring T1d into our home.  

Unlike a car purchase, there is no other option.

Without a choice (or maybe because the choice was too horrific to consider), we forced ourselves to accept the steep learning curve that comes with the maintenance of 24 hour/7 days a week, blood sugar checks, manual or electronic logs, insurance coverage, diabetes supply scripts, orders, purchases (injection needles, multiple insulins, pens, pen needles, glucagon, insulin pumps, cartridges, reservoirs, tapes, continuous glucose monitors, lancets, test strips, needles, adhesive wipes, unisolve, neosporin, numbing cream, alcohol swabs, glucose, juice, candy and more such as other medications), the clinic visits, the endocrinologist, CDE, the on-call physicians, the ER visits, the insulin dose changes, medical records, the outreach support, the specialist visits, the school caregiver education, 504 planning, fundraising and advocacy.  SO.MUCH.ALL.THE.TIME.

We were forced to accept all of these things immediately because the burden was laced heavily around the body of a tiny three-year old little girl that we deeply loved.  Our capacity for love is endless and that has always been the reason we could manage the burden.  Even for a second diagnosis in an equally loved eight-year old little girl.

As much as I tend to tuck that heaviness away and disguise it in the love that I feel for my children, it does rear it’s ugly head from time to time.

Burden is a heavy word.  

Like in the morning where I am busily reading our daughters for school and a pump alarms a low battery alert.  Fumbling through the steps to change the battery; prime, load and fake out a cannula fill, I make a mistake.  In my hurry, I miss the obvious low cartridge of 10 units of insulin or less.  This second process makes me repeat all of the first steps; prime, load and fake out a cannula – EXCEPT I decide that I might as well change out her infusion site too, so a real cannula fill comes but only after I poke her with a sharp needle, which then her tears tell me she DID.NOT.LIKE.AT.ALL.

The burden weighs heavily on me as I hastily wipe her eyes and pretend that all is well so that I can get her to school on time.  It hits again when I drop her off and watch her walk into a school where most certainly, no other child had to take a shot to get there.

When I get home, I remember that I forgot to make a change to her insulin to carb ratio, which means that yet again, I will need to handle her pump and disrupt her after school play time.  The burden feels even heavier as I think about the scratch that I saw near the cartridge cap on the pump and wonder if I need to call her insulin pump company to report a possible warranty issue.  Since my daughter is now at school and I can’t find her pump serial number, I add it to the mental check list of items that will be performed when she is back at home from school.  Then, I force myself to begin to think of the work that I have actually been hired and paid to do.  The burden never fully resolves as each day brings a new set of circumstance.

Burden is a heavy feeling.

My days are full of types of wonder.  Trying to act appropriately for the psycho-social restrictions that T1d dictates and hope that my daughters, ages 11 and 13 and managing a day at school, changing classes, without an aide or a school nurse.  Left to much of their own skills, we have worked out secret plans and strategies in which they test blood sugars and text me.  My “wonder” is akin to worry at times when those checks/texts are missed and I am left hoping that all is well.  I then wonder at the amount of self-control that I possess and I wonder at why I do.  Is it perhaps the clinical distance that I have forced myself to take in order to raise successful, independent children.  There are more times that I can count in which I just wanted to keep them safely at home, where I can ensure that they are fine under my watchful eye.

As they come home from school, I stifle the urge to ask their blood sugar numbers before they tell me about their day.  Catching my older, savvier child’s eye, I wonder how much she knows and if she is holding back from telling me about the unpleasant side of attending school with T1d.  I listen carefully.  I can’t make mistakes because the burden is laced heavily in the parents trudging along before me which warn that helicopter parenting leads to noncompliance in teenagers.  Or worse, parents that ignored the signs of depression.  Instead, I wait and listen to stories of the day, ensure they eat a healthy, protein rich snack that keeps blood sugar from skyrocketing before we eat dinner an hour later.  When they are gone, I fetch their CGMs for a quick review and double check backpacks to make sure they have enough low blood sugar supplies for the next day.  The burden is that T1d sucks much of the joy of regular interaction with my children.

Burden is a heavy state of being.

There are a few moments in which I procrastinate and then, feel guilty.  It comes as I lie in bed and listen to the CGM give its first bleep of warning which is programmed at UNDER 90 mg/dl.  I hear it and I wonder if my sleeping husband is also listening.  Without a sound, I wait a moment longer and then feel a guilty rush for not running right out the room.  The burden whistles softly as I hand out a juice box in the dark while making as little noise as possible so she can sleep.  My head, tired from eight long years of sleep deprivation is heavy as the weight of a ton, but the guilt is in that thought of self-pity, is that I am not the one with the ‘real’ burden of T1d.  The sweet sleeping cherub that I awoke for is the one to be most concerned for.

The burden flows heavy through the early alarm and as I struggle out of bed just a few hours later to wake my girls, I must first check their blood sugars and pre-bolus their breakfast insulin.  Even heavier burden comes seconds later as the resulting number for one of the girls, is much too high for our upcoming clinic appointment.  Feeling heavily defeated before the A1c has been performed, as we have steadily increased her insulin ratios against the swarming tide of growth and puberty hormones to no avail. Later, I will try to call in her numbers but will have to wait through the standard time of 36 hours for a call back.  By then, her numbers will have stabled and I will be faced with the question of what to change, especially during the night, when she (and I ) most need our rest. Stuck in an uncomfortable position because when I decide not to implement the changes, I must then explain why to endocrinologist that may feel like checking over night is something patients only need to do for the first few months. I wonder why I sent in the numbers at all as it just increased my burden tenfold.

Burden, in all it’s heaviness is always there.  It ebbs and flows but it is never quite alleviated.  We may pretend it doesn’t matter, but it does.  When T1d patients think of a cure, they are looking for relief of that burden.

And YES!  A cure would be the ultimate relief.

We have learned other ways to minimize burden (and while it is not perfect, it can be helpful).

1.)  We embraced T1d education and continue to do so.
Read everything.
Ask questions.
Establish a solid team (parents, child, school, clinic and coaches/caregivers)
Never stop trying new things.
Mentor.

2.)  We prepare for not one T1d event, but for at least three in advance.  
Keep a calendar.
Map out the day.
Squirrel away food, meter and pump supplies.
Have a plan.
Understand that mistakes will be made and you will head back to #1 and learn.

3.)  We redirected our world to better suit our T1d needs.
Learn to say no.
Learn to say what you need – not just what you want.
Learn to forgive.
Learn to heal.
Learn to accept.

4.)  We simplified T1d.
Become a hacker, designer, creator, risk-taker.
Make it easier to do what needs to be done.. IE, by creating T1d stations everywhere you spend time. Look through new eyes at common things.. IE,  make a linen closet into a supply closet.
Friends shying away from sleepovers? Have them at your house.
Dinner with night owl friends?  Suggest appetizers before you go.
Carb counts missing?  Use an app, book, or best guess and check again in an hour.

5.)  If it isn’t working for your T1d, than let it go.
This is true for processes and people, including members of your team.

The positive of our T1d burden is that even though it is always there, we have continue to have endless amounts of capacity to care for our child, simply because we love them.

I would love to hear your thoughts on burden and capacity.  Tweet me @natsweetsisters or drop a line at our facebook page, https://www.facebook.com/naturallysweetsisters or leave a comment on the blog.

Tres Dias Por Nada

La historia de Juan, paciente peruano con diabetes

Marcia Moreano Sáenz MD1, María de los Angeles Lazo MD1,2, Álvaro Taype Rondán MD1Miguel Moscoso Porras PT1, J Jaime Miranda MD, MSc, PhD1

1 CRONICAS Center of Excellence in Chronic Diseases, Universidad Peruana Cayetano Heredia, Lima, Peru (www.cronicas-upch.pe)

2 Unidad de Conocimiento y Evidencia (CONEVID), Universidad Peruana Cayetano Heredia, Lima, Peru

En el Perú, el sistema de salud público nacional se caracteriza por ser de difícil acceso para poblaciones de bajo nivel económico, con un sistema de citas deficiente que se traduce en esperas prolongadas, una mala calidad de atención que se limita a la prescripción, y un inadecuado seguimiento de la enfermedad. Esto es especialmente perjudicial para aquellos que sufren de enfermedades crónicas como la diabetes, que requieren evaluaciones continuas y educación al paciente.

Para ilustrar esta situación, exploramos el recorrido de un paciente que debe acceder al sistema de salud público peruano para ser atendido en el Servicio de Endocrinología de un hospital nacional:

Juan, un padre de familia de 56 años de escasos recursos económicos, normalmente atiende sus necesidades de salud en un “puesto de salud” (nombre que designa a los establecimientos de salud del primer nivel de atención en el Perú) y afortunadamente cuenta con el seguro integral de salud (SIS),1 que se otorga en el Perú a pacientes calificados como pobres o extremadamente pobres.

Juan ha sido recientemente diagnosticado de diabetes y el médico del puesto de salud le comunica que debe ser atendido en un hospital nacional de mayor complejidad (Ministerio de Salud de Perú)2 porque las pruebas adicionales y los medicamentos básicos no están disponibles en su puesto. Para ello, le entrega una “hoja de referencia” (formato necesario para la atención en el hospital mediante el SIS). De esta manera, Juan coordina con su familia y pide permiso en su trabajo para realizar el viaje hacia el hospital más cercano, que en este caso le queda a un par de horas de distancia de su hogar. Hasta entonces, deberá adquirir, si cuenta con el dinero necesario, sus medicamentos en una farmacia privada.

El día coordinado, Juan acude al hospital con su “hoja de referencia” para solicitar una cita. Se acerca a la oficina de admisión, en donde después de hacer una cola por 20 minutos, el personal administrativo le indica que lo más pronto que su cita puede ser programada es en dos meses. Juan no tiene otra opción más que esperar esa fecha  pues no cuenta con los recursos económicos necesarios para acceder al sistema de salud privado.

Finalmente llega el día de su cita, ese día sale de su casa a las 6 de la mañana y llega al hospital dos horas más tarde. Como paciente nuevo, presenta sus documentos (hoja de referencia, copia de documento nacional de identidad y copia de la ficha de inscripción SIS) en la ventanilla de admisión. Luego de 30 minutos recibe un número de historia clínica, un carnet de atención, un formato único de atención e instrucciones de ir al área de consultorios.

Al encontrar el consultorio de Endocrinología, Juan se aproxima a la ventanilla de recepción y entrega sus documentos al personal administrativo quien le indica que será llamado para ser atendido de acuerdo al orden de  llegada. Después  de dos horas de espera, Juan es llamado al consultorio, donde le toman medidas de  talla y peso. El médico lo recibe en su consultorio por 15 minutos,  le indica algunos exámenes de laboratorio, le entrega una receta escrita a mano. Juan no entiende para que son los exámenes o que dice la recete pero siente que el médico no tiene tiempo para explicarle. También le da  una cita después de contar con los resultados, cita que muy probablemente tendrá lugar dos meses después. En esta cita, Juan no pudo preguntar sobre su pronóstico, su dieta, uso de ciertos productos “naturales” que le han recomendado sus familiares, y otras inquietudes.

Al salir de la consulta, Juan acude a la farmacia del hospital para recoger sus medicamentos y tiene que esperar  15 minutos para entregar la receta y otros 15 minutos para recibir los medicamentos. Posteriormente acude al laboratorio para realizarse los estudios solicitados pero le indican que los mismos se deben realizar el día siguiente a las siete de la mañana. Finalmente llega a su casa aproximadamente a la 2 de la tarde.

Para poder hacerse los exámenes, Juan debe solicitar permiso en su trabajo por un día más. Al día siguiente, acude al laboratorio. Después de 40 minutos de espera puede entregar la orden médica y pasa a la sala de  toma de muestras, donde es atendido 30 minutos después.  Al terminar se le informa que él o un familiar podrán recoger sus resultados a partir de las 2 de la tarde del día siguiente.

Al finalizar este largo trayecto, podemos concluir que:

  • Juan perdió por lo menos tres días de trabajo, lo cual afecta aún más su ya débil estado financiero.
  • Fue sometido de manera repetida a largos tiempos de espera.
  • Fue atendido brevemente.
  • No ha obtenido información ni educación sobre diabetes y autocuidado de su salud.
  • No ha tenido una evaluación ni completa ni multidisciplinaria.
  • No tendrá un control adecuado de la glucosa, pues en la posta de salud más cercana a su domicilio no cuentan con lo necesario para realizar su monitoreo de glucosa periódico y si cuentan con este recurso el paciente deberá pagar dinero por cada control, ya que su seguro de salud no cubre éste servicio.
  • Deberá esperar aproximadamente dos meses para la siguiente consulta médica.

Si bien este caso es lamentable existen situaciones aún más complicadas. Por ejemplo, si Juan fuera un habitante de una zona rural se enfrentaría a más limitaciones como la falta de personal médico en la posta de salud cercana, la lejanía del hospital más próximo que puede estar a varias horas o incluso días de viaje, y un acceso mucho más limitado a medicamentos, que deberá adquirir en alguna ciudad cercana. Si Juan fuera analfabeto o tuviera un nivel de educación muy escaso tendría mayor dificultad para comprender las instrucciones brindadas y navegar el complejo sistema de salud.

Por otro lado, si Juan contara con los recursos económicos necesarios para acceder al sistema de salud privado, podría obtener una atención médica en menos tiempo (ver figura 1), aunque la calidad de la misma no sea necesariamente superior. Estos datos reflejan las inequidades en el acceso a los servicios de salud que se da en países de bajos y medianos ingresos económicos como el Perú.

 

Capture

* La información para construir la Figura 1 se ha elaborado en base a la técnica de observación participante y tomando como referencia información de dos estudios de investigación3,4

De esta manera es claro que en el manejo de enfermedades crónicas como la diabetes, que requieren educación, un seguimiento estrecho y un manejo multidisciplinario, requiere de manera urgente la identificación de barreras de acceso a la atención (http://www.cronicas-upch.pe/identificando-barreras/) y la implementación de medidas de salud pública que permitan facilitar el acceso al sistema de salud de manera universal, y una atención oportuna, con  la calidad y el respeto que merecen. También revela como las inequidades e ineficiencias del sistema faltan el respeto a la capacidad – limitadísima en muchos casos – que tiene los pacientes mas necesitados para acceder al cuidado medico e implementar el autocuidado.

Agradecimientos: Ana María Castañeda Guarderas y René Rodríguez Gutiérrez por su amable revisión a este artículo.

Referencias

  1. Seguro Integral de Salud. Visitado el 24/03/2015 en el URL: http://www.sis.gob.pe/Portal/index.html
  2. Ministerio de Salud – Perú. Visitado el 24/03/2015 en el URL: http://www.minsa.gob.pe/
  • Instituto Nacional de Estadística e Informática. Encuesta Nacional de Satisfacción de Usuarios del Aseguramiento Universal en Salud 2014. Visitado el 24/03/2015 en el URL: file:///C:/Users/Administrador/Downloads/libroINEI-IMPO%20(1).pdf

Cárdenas María Kathia, Morán Dulce, Beran David, Miranda J Jaime. Identifying the Barriers for Access to Care and Treatment for Arterial Hypertension and Diabetes in Lima, Peru. Executive Summary. Visitado el 25/03/2015 en el URL: http://www.cronicas-upch.pe/wp-content/uploads/2014/08/Identifying-the-Barriers-Lima-Peru.pdf

REPOST: Why do people with multiple long-term conditions report worse patient experience in primary care?

Reposted with permission from Charlotte Paddison (Original posted on Cambridge Centre for Health Services Research on March 25, 2015)

Paddison, C.A.M., Saunders, C.L., Abel, G.A., Payne, R.A., Campbell, J.O., Roland, M. Why do patients with multimorbidity in England report worse experiences in primary care? Evidence from the General Practice Patient Survey. BMJ Open 2015;5:e006172 doi:10.1136/bmjopen-2014-006172. Access this article here.

Here at the CCHSR we are very interested in multimorbidity. In our recent paper, we used data from nearly 1 million patients in England to understand how people with more than one long-term condition experience care provided by their GP surgery. We found that people with multiple long-term conditions reported worse primary care experiences, when compared to patients in our study who had either one, or no, long-term condition.

Why do people with multiple long-term conditions report worse primary care experiences?

Our results showed that health-related quality of life, particularly in the domain of ‘pain’, might be important. Differences in perception – influenced by pain or depression – could affect the way patients’ report their experiences of primary care. On the other hand, it could be because people with multiple long-term conditions have different and more complex needs than those with single or no long-term conditions. These needs don’t fit well with guidelines designed for patients with a single condition, or health policy framed around the management of a single condition.

Health policy makers and clinicians need to recognise that the patient experience and health care needs of people with multimorbidity are likely to be different to those with a single long-term condition. We agree with Victor Montori on the need to minimise the burden of treatment, as well as the burden of disease; and with Chris Salisbury on the need to (re) design health care for people who use it. As highlighted by Reid et al in the BMJ, chronic pain is very common, and our results suggest recognising and managing pain may be important to improve quality of life and patient experience for people with multiple long-term conditions.

Interested to learn more?

We’ve also blogged previously on what multimorbidity means (and doesn’t); the importance of continuity of care for people with multiple long-term conditions; the relevance (or otherwise) of care plans; why single disease guidelines and protocol-driven medicine don’t work for people with multimorbidity, and the intellectual work needed to provide an alternative.

 

Balancing competing priorities: Managing illness vs. living life

By Catherine Maguire

The high treatment burden in chronic respiratory illness is very real. As a 28 year old living with Cystic Fibrosis (CF), when healthy I am usually on 16+ medications and engage in over 2 hours of treatments daily. I currently take up to 47 tablets daily, depending on my food intake. I usually have 1-2 hospital admissions per year lasting 10-14 days each, for routine intravenous antibiotics and intense chest physiotherapy to clear out my lungs. Of course, these figures skyrocket when I have an exacerbation.

This treatment schedule isn’t always easy to manage when integrated into the context of trying to live a “normal” life; including professional employment, post graduate studies, social affairs, playing mum to two beloved dogs, maintaining a house and being a fabulous wife.  I’d like to provide some further insights into what the treatment burden involves for individuals like myself.

For me, treatment burden from Cystic Fibrosis falls into six main categories:

  1. Participating in physiotherapy for airway clearance every day takes at least an hour. Add in my usual nebuliser regime and that figure doubles. I don’t always have time for dirty dishes, or to put that extra 30 minutes into proof-reading my essay – not because of my CF per se, but because of the treatments to keep my CF at bay.

 

  1. BOTHER: Organizing my own medicines into pill boxes each week; mixing powder antibiotics with saline/water for injection prior to nebulization; sterilizing equipment; setting up and dismantling my physiotherapy table each day. While all of these aspects to treatment may seem “petty” in the grand scheme of things, they not only take further time out of my day, but they are just a nuisance, a bother. And anything which is perceived to be a bother requires additional incentive for compliance.

 

  1. PHYSICAL EXHAUSTION: Participating in daily forced airway clearance (and therefore controlled breathing and coughing for over an hour) is actually very exhausting! I think this treatment is actually more straining and demanding on my energy than the “actual” symptoms of the disease.

 

  1. ACCESS: There are numerous “systems” issues with healthcare in Australia. Now don’t get me wrong, we have some of the best health care in the world and I am forever grateful for the level of care I am provided with under Medicare. This said, there seems to be some mini hurdles which could easily be rectified, such as having to navigate dual pharmacy systems (local community pharmacy and hospital pharmacy for specialised medications). Additionally, access to the CF clinic staff closes by 5pm which can be another obstacle for working professionals. Lastly, I’ve also found it difficult to access regular, affordable, reliable physio-in-the-home to assist with daily airway clearance.

 

  1. COST: Prescription medications, even at discounted rates are expensive. This coupled with the high volume of non-prescription medications such as vitamins and supplements due to pancreatic insufficiency, create a huge cost. Other costs include physio-in-the-home; equipment costs; unpaid leave from work for appointments and hospital admissions; costs of a high calorie diet; hospital parking; paying for hospital cafeteria food and take-away (because food served to actual patients is often inedible and does not always meet CF dietary requirements); ridiculously expensive travel insurance… the list goes on.

 

  1. PSYCHO-SOCIAL: The burden from this intense treatment regime creates some real barriers to social affairs, employment and career advancement, housework, tertiary studies and being a fabulous wife. But psycho-social impacts extend beyond the consumer and onto loved ones and partners. When these people act as carers (such as to help with additional physiotherapy) the relationship dynamics change and it can create a myriad of psychological consequences. In regards to psycho-social support – this is currently minimal. If I visit a psychologist in my community the likelihood is I would spend the first few sessions educating them about the psychology of chronic illness and what CF is / how this impacts my life. I would also only be entitled to limited sessions and need to pay a gap fee depending on their rates. People with complex health issues require specialist psycho-social staff with expertise in chronic illness and treatment burden. How is it I am living with a chronic terminal illness yet the clinic currently has no CF counsellors, psychologists or social workers funded by the hospital?

Having said this, imagine if some of the aforementioned obstacles could be addressed. Now this may be a very ambitious wish list, but here are some solutions which would make the treatment burden from CF much easier:

  • Providing a life-long health care card (regardless of income) to assist with the costs of medications.
  • Streamlined pharmacy systems whereby you collect all medications from one pharmacy or even better – home delivery! This would (a) reduce the extensive pharmacy waiting times at the hospital (b) reduce logistically having to negotiate drugs at separate pharmacies (c) having to remember which scripts to get from which doctors and (d) at which pharmacy.
  • Discounted parking rates at the hospital for frequent-flyers.
  • Affordable (or ideally free) reliable physiotherapy in the home.
  • A push for pharmaceutical companies to revolutionise how our medications are delivered into the lungs by developing more puffers/quick inhaled medications which are just as effective as nebulised medications. Nebulisers take time, puffers don’t. Likewise, for drugs that must be nebulised, have them in ready-to-go nebules so we don’t need to mix them with saline/water for injection prior to use.  Perhaps nebuliser pieces could also be dishwasher safe to eliminate the sterilisation process.
  • Routine access to psycho-social services, i.e. a psychologist/social worker/counsellor who specialises in chronic illness to be available for both outpatients and inpatients.

Many chronic illnesses including CF require a complex daily regime in order to prevent the progression of the illness. On a daily basis I am forced to make a cost-benefit analysis with my treatment schedule: it may be costing me 2-3 hours of treatments today, however it will hopefully be a worthwhile investment; increasingly my quantity and overall quality of live into the years to come. My decision, while logical, is not always easy to make when considering the competing priorities in my life at any given time. Imagine how many consumers engage in this cost-benefit analysis and choose non-compliance? As a medical community I urge us all to look beyond the actual diagnosis and symptoms of the disease, but to also consider the very real impacts the treatment schedule has on the everyday lives of consumers.

My Minimally Disruptive Medicine (MDM) Experience

The concept of Minimally Disruptive Medicine in practice attempts to understand the patient’s balance of their workload of life and their care and the capacity they have to take on that workload.  Admittedly, this is a concept many of us as clinicians suspected we understood for our patients, but when we begin to scratch the surface, we truly lack an understanding. We also often feel inhibited to seek understanding of these issues and support true shared decision making when constrained by our settings that are more influenced by government and insurance-based quality metrics. And even when we take the time to understand, we are further constrained by insufficient institutional frameworks to support patients as we seek to help them gain capacity when factors feel “out of our control” (i.e., financial difficulties to afford care or healthy food, deep-seeded loneliness for patients isolated by their conditions, and complex home environments).

When we think of engaging patients in healthcare, when excessive burden exists and a lack of capacity – how will we create healthcare that cares for our patients in a kind and careful way, such that they are engaged in the pursuit of their health, while still having capacity to pursue their life’s hopes and dreams? And why will patients choose to engage with us? Being able to identify the factors surrounding workload and capacity has been an eye-opening experience – encouraging because of the ability to recognize the factors when they arise but at the same time frustrating when you recognize as a provider our limited ability to adequately support the changed needed in certain situations of workload-capacity imbalance.  Opportunities exist although they will require both partnerships within communities and significant changes in how we have approached quality based healthcare to date.  There have been many times in discussions with patients when we discuss the factors in life contributing to their depression and/or anxiety that we recognize, it’s “life”, if we can’t address them, adapt the treatment plan to accommodate them then we must acknowledge and respect the factors.  I have told many patients, “I haven’t found the magic pill to fix life yet but when I do, I promise I will let you know” and until then we must work with our patients to support them and utilize our available resources within the clinic and the community.

Truly having the patient as an active member in their care involves incorporating the patient’s perspective so they can make meaningful choices regarding interactions between their illness and clinical interventions. In some cases, that choice is to forgo treatment – in some cases the motivating factor is the potential of adverse outcomes, a lack of adequate benefit identified by the patient to assume the burden, or general forms of scarcity that mean that the resources the patient must tap into in order to adhere are simply out of reach.  For example, patients may choose to forgo colon cancer screening via colonoscopy or the use of a statin medication for cardiac disease risk prevention for any of these reasons. Regardless of the health related decision – how will we train healthcare providers and patients to engage together in this level of care?  And how can we apply these principles of minimally disruptive medicine such that we can improve not only our quality of care but patient outcomes with the goal of person-centric, engaged healthcare that aims to carefully and kindly support people with chronic conditions and seeks to prevent the development of chronic disease for our population in the future.

 

Submitted by Summer Allen, M.D.

Shared decision making and minimally disruptive medicine for COPD patients

COPD is the third most common cause of death in the USA (1). Fifteen million Americans report that they have been diagnosed with COPD (2), but the actual number is likely to be higher, as more than 50% of adults with low pulmonary function are not aware that they have COPD (3).The national medical costs for COPD were $32.1 billion dollars annually in 2010, and are expected to rise to $49 billion dollars annually by 2020 (4).

But there is not only the impact of COPD on health care services and medical cost; there is a significant burden associated with COPD and COPD treatment that patients have to bear. When COPD patients were asked in a study to define their condition in their own words, 29% percent defined their condition with the sensations of burden, limitation, or disability (5).

Consider the case Mrs. S. who is a 70-year-old cachectic woman who has had 3 hospital admissions for acute exacerbations of COPD in the past year and a total of 12 hospital admissions in the last 5 years. Her COPD is severe based on lung function testing with an FEV1 of 25% predicted and she has chronic severe hypoxaemia with a Pa02< 55 mmHg (<7.3kPa). She gets breathless when she walks more than 30 meters (98 feet). She has been a smoker for 45 years and, unfortunately, she continues to smoke, despite successfully giving up smoking for 6 months- supported by nicotine replacement therapy- a couple of years ago. Her medical specialists and her primary care doctor keep nagging her about her smoking. She is on home oxygen therapy (prescribed to her at the time when she stopped smoking), and recently experienced an anxiety attack when her oxygen concentrator would not work during a power outage. She has a history of congestive cardiac failure, arterial hypertension, rheumatoid arthritis, chronic back pain caused by several vertebral fractures of the thoracic and lumbar spine secondary to long term systemic corticosteroid therapy, hypothyroidism, anxiety and depression.

In the past, she has often not shown up for her specialist appointments because she does not have anybody to drive her to the appointments; she is too unwell to come by public transport; and she cannot afford a taxi. Her pulmonary specialist had referred her to the outpatient pulmonary rehabilitation program at the hospital, but she dropped out after the first session because of transportation problems.  She is not taking the tablets she has been prescribed other than pain medication and thyroxin tablets, because she does not feel that they do a lot for her. She finds it difficult to handle the metered dose inhalers with her arthritic fingers and thus often skips the inhalation treatment. She lives on her own; her two daughters live a few hours’ drive away, and she only sees them a few times every year. She does not have any close friends. She feels that most people around her are blaming her for her COPD because she smokes.

It is easy to see that COPD reduces Mrs. S. quality of life significantly, and it apparent that she is overwhelmed by managing the treatment of her disease. What could shared decision making (SDM) and minimally disruptive medicine (MDM) offer to somebody like Mrs. S.? The following scenario could unfold when SDM and MDM are integrated in Mrs. S.’ clinical care:

During the next clinical encounter her pulmonologist uses a decision aid that has been designed to facilitate collaborative deliberation of treatment options in COPD (6). Mrs. S. is invited to choose which outcome goal she would like to discuss first given a choice of ‘improving symptoms of COPD (shortness of breath, cough)’, ‘reducing flare-ups of COPD’, ‘increasing life expectancy’, ‘improving function in everyday life’. She chooses ‘improving function in everyday life’ and learns how important pulmonary rehabilitation is to maintain and improve her function in everyday life. Her pulmonologist shows her a graphic display of the functional improvement that can be achieved with pulmonary rehabilitation in comparison with other measures, such as inhalation therapy. Mrs. S. is surprised to see that pulmonary rehabilitation can do more for her functioning in everyday life than inhalers, and she now wants to give this another try. Because problems with transportation to the clinic have been the major barrier to attending the pulmonary rehabilitation program at the clinic before, the pulmonologist helps her to find a pulmonary rehabilitation program closer to her home that also provides complimentary bus pick up (facilitating social interactions with other COPD patients on the bus- an additional benefit!).

The decision aid further points out that anxiety and depression negatively impact on function in everyday life. Together with her pulmonologist, Mrs. S. decides that she wants to address her anxiety and depression; they agree that he should be treated with an antidepressant. As smoking cessation has also been listed as important for functional improvement, the pulmonologist and patient decide that they will discuss smoking cessation aids during the next consultation.

To address the fact that Mrs. S. feels overwhelmed with all her medications for different diseases, her primary-care doctor and her pulmonologist use an electronic decision support tool that addresses multimorbidity in elderly patients integrating principles of MDM. This decision support tool takes into account Mrs. S.’ individual patient profile and tailors treatment recommendations to her circumstances and preferences. The electronic decision support tool provides information about the types of outcomes achieved with different treatments (e.g. ‘improving quality of life’, ‘increasing life expectancy’) and the impact in reduction of risk across specific scenarios. The tool assist the clinician and Mrs. S. in ranking these treatments based on benefit, harms, and, importantly, burden. After she and her primary-care doctor have discussed the information from the electronic decision tool, they can now understand why some medications are more important for her than others. Perhaps as importantly, they both gain understanding as to the reasons the patient has to value certain aspects of her care.

The electronic decision support tool suggests antidepressant therapy with mirtazapine for her because this medication has also been shown to stimulate appetite and promote weight gain, which would be a desired effect for her.

Regarding inhaler therapy, she decides that she does not want to use inhaled corticosteroids because of the increased risk of pneumonia and her history of previous COPD flare-ups triggered by pneumonia, but she is now motivated to use a combination inhaler with a long-acting bronchodilator and a long-acting muscarinic antagonist because the potential improvement in dyspnoea she can achieve with this treatment. She determines with her pulmonologist that she will stop the inhaler treatment if she does not notice any improvement with her breathing within 3 months. They work with a pharmacist to identify the type of inhaler device needed to account for her problem with handling devices due to arthritis.

Because transport to the clinic poses a significant barrier to attending specialist appointments, her pulmonologist offers her to do a teleconsultation next time.

This futuristic tale has illustrated some of the potential benefits of SDM and MDM in COPD patients. I am particularly focused on helping realize this vision of integrating MDM and SDM into the routine care of patients with COPD.

Dobler

Submitted by Claudia Dobler, M.D.
South Western Sydney Clinical School, University of New South Wales, Australia

 References

  1. Centers for Disease Control and Prevention. National Center for Health Statistics. National Vital Statistics Report. Deaths: Final Data for 2010. May 2013; 61(04).
  2. Centers for Disease Control and Prevention. Chronic obstructive pulmonary disease among adults—United States, 2011. MMWR. 2012;61(46):938-943.
  3. Mannino DM, Gagnon RC, Petty TL, Lydick E. Obstructive lung disease and low lung function in adults in the United States: data from the National Health and Nutrition Examination Survey, 1988-1994. Archives of internal medicine 2000; 160: 1683-1689.
  4. Ford ES, Murphy LB, Khavjou O, Giles WH, Holt JB, Croft JB. Total and State-Specific Medical and Absenteeism Costs of COPD Among Adults Aged >/= 18 Years in the United States for 2010 and Projections Through 2020. Chest 2015; 147: 31-45.
  5. Partridge MR, Dal Negro RW, Olivieri D. Understanding patients with asthma and COPD: insights from a European study. Primary care respiratory journal : journal of the General Practice Airways Group 2011; 20: 315-323, 317 p following 323.
  6. Agoritsas T, Heen AF, Brandt L, Alonso-Coello P, Kristiansen A, Akl EA, Neumann I, Tikkinen KA, Weijden T, Elwyn G, Montori VM, Guyatt GH, Vandvik PO. Decision aids that really promote shared decision making: the pace quickens. BMJ (Clinical research ed) 2015: 350: g7624.

A Pragmatically Comprehensive Model for Delivering Care to Patients with Multiple Chronic Conditions

Patients with multiple chronic conditions must deal with complex circumstances and significant burdens of treatment and disease. Stakeholders at all levels are invested in finding innovative ways to effectively care for these patients. Here, Dr. Aaron Leppin and colleagues show how Minimally Disruptive Medicine can be operationalized to optimize care for these complex patients. This paper introduces the first conceptualization of a specific care delivery model built upon the theoretical precepts of MDM. (Leppin MDM Healthcare Paper)

Open access to medical records and reforms — Let’s hear from you!

This is open for debate. What are the patient workload and capacity implications of having access to the medical records?  Is it net benefit (as in more capacity due to better understanding and easier caregiving, lower cost/effort of accessing clarifying and helpful information) or net harm (as in docs using the record to communicate with patients rather than directly; records written in impenetrable jargon; access is through portals and other devices that patients negotiate via difficult and cumbersome protocols?).  What is your experience?

BMJ article

Maria Luisa’s Catch-22 and Minimally Disruptive Medicine (Photo essay)

In Joseph Heller’s classic novel Catch-22, the protagonist John Yossarian is a Captain in the Air Force during World War II. Yossarian does not want to fly any more missions as flying could be very dangerous. He reasons that any sane person would not want to fly, however, the only people who do not have to fly are those deemed insane and thus unfit to fly, the catch, the Catch-22, is that those who are insane and want to fly and thus can, but don’t have to, and those are sane don’t want to, but have to.1

Anyway, this story isn’t about an Air Force captain, this is the story of Maria Luisa, a woman stuck in the Catch-22 of health and illness; to live the life she wants to live she must manage her health, but managing her health prevents her from living the life she wants to live.

Maria Luisa, 87, a native of Peru, lives in the last frontier, Alaska. She has 3 children, 13 grandchildren and 12 great grandchildren. She has hypertension and, for the last 5 years, she has been on hemodialysis. Maria Luisa lives with her son, who is her caregiver and also a patient with chronic disease. Three times a week, she wakes up at 5:30 am, fixes some breakfast, and bundles up against the cold, which routinely reaches -10°C. Her son then drives her to the dialysis center at 6 a.m.

When she is not hooked up to the dialysis machine, she enjoys shopping (or window shopping), which also gives her a chance to be active. However, because of her health conditions she often gets short of breath which makes walking (and shopping) more difficult. To try and manage her medical conditions Maria Luisa takes 10 to 13 pills daily, to help organize her medications, Maria Luisa and her son, every Sunday, uses color-coded bottles to arrange her medications according to the day of the week and the time of day of each dose. In addition to this Maria Luisa tries to adhere to a diet that is low in salt, potassium, phosphorus, protein, and water. As a result of this she often copes with this limitation with dietary indiscretions that contribute to worsening of her health and to emergency department visits.

Organizing her medications, attending dialysis, scheduling doctors’ appointments, and adhering to her diet, while helpful to manage her chronic health conditions gives her lots of work; work that is disruptive to the life that Maria Luisa is trying to live in spite of her health conditions – a Catch-22.

Despite these difficulties Maria Luisa has resources she can mobilize to help her manage her health and the work and disruption illness causes. These resources include a loving, supportive family, a resilient personality, and financial resources. These resources are often helpful but, Maria Luisa faces a barrier that many patients face, as English is not her first language. This makes it more difficult for her to self-manage, makes her more isolated in a community with few Spanish speakers, and makes her more dependent on her caregiver, her son.  This barrier to communication has contributed to her difficulties managing her health; specifically she has had trouble communicating her difficulty following her diet.

How can we help Maria Luisa live the life she wants to live, maximizing health and happiness, while minimizing the work and disruption caused by illness? One approach that can help Maria Luisa is Minimally Disruptive Medicine.

abuela

Minimally Disruptive Medicine (MDM) is an approach to medicine that seeks to promote patient goals while right-sizing the work of being a patient to each patient context. MDM aims to manage the workload that the pursuit of health imposes upon people by examining that workload in the context of the patient’s life, their goals, and the capacity they have to implement that workload and thus, minimize the disruption medicine causes in a person’s life allowing them to live the life they want to live. 2

Using a MDM approach what can we do for Maria Luisa? How can we create a healthcare plan that fits for her? These are the questions I asked myself after another dietary indiscretion landed her once again hospitalized in the ICU.

Working with her family and healthcare team in Alaska we designed a plan that we thought would better fit Maria Luisa desires and available capacities.

We redesigned the way Maria Luisa organizes her medications, getting rid of the individual pill bottles and replacing them with two large pillboxes; one for her morning medications and one for her evening medications. This change made it easier and safer for Maria Luisa and her caregiver to organize her medications. In addition, Maria Luisa felt that this new system was easier to use and one that she could implement on her own, thus increasing her self-efficacy and leaving her happy and with a renewed feeling of independence.

In addition to reorganizing her medications, we also consulted with a Peruvian dietician to create a diet that not only was good for Maria Luisa, but also allowed her to enjoy eating once more, thus, reducing the chance of a deterioration in her health due to nonadherence to her prescribed diet. To further facilitate this change we mobilized some of Maria Luisa’s financial capacity and hired someone to help her prepare the food on her new diet.

Finally, in order to make her dialysis better fit into her life we arranged to have her dialysis completed at night rather than during the day. This not only allows Maria Luisa to do things she enjoys during the day, but, now she goes to dialysis at 5pm, gets out at 8pm and feels ready to go to bed. With this change Maria Luisa says she feels more rested and finds that her afternoons are more useful (she has started to knit again!) and her great granddaughters are more likely to visit because she is well rested and not exhausted from dialysis. An additional unexpected benefit is that some of the nurses who assist with dialysis in the evening also speak a bit of Spanish, thus giving Maria Luisa someone to talk to in her native language.

We might not have addressed all of Maria Luisa’s workload issues (ej. scheduling/attending appointments, physical activity) but I am sure that these simple changes have and will continue to make a big impact on her life.

I write about my experience with the hope that someday some young medical graduates (like me) will start thinking about “Maria Luisas” and ask themselves the same question I now cannot stop asking. How can we work with patients to co-create goals for care that respect each patients’ context, history, capacity and goals? Clinicians have met patients with similar stories, in similar catch-22s of illness, healthcare, and life. But this is not, for me, like any other story. This is the story of my abuela, who once again, has helped me find, in minimally disruptive medicine, a good answer.

Ana Castaneda-Guarderas MD @amcguarderas
Research Trainee, KER Unit
Unidad de Conocimiento y Evidencia (CONEVID)

Acknowledgments:

Dr. Castaneda would like to thank Michael R. Gionfriddo Pharm.D for his editorial assistance.

References

1. Heller, Joseph. Catch-22.  Simon & Schuster, 1961. Print.
2. Leppin, A. Minimally Disruptive Medicine, at your service. URL: http://minimallydisruptivemedicine.org/2013/08/23/minimally-disruptive-medicine-at-your-service/. August 2013