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 withChris Salisbury on the need to (re) design health care for people who use it. As highlighted byReid 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.
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.
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)
Dr. Castaneda would like to thank Michael R. Gionfriddo Pharm.D for his editorial assistance.
Frances Mair and I have an Editorial in this week’s British Medical Journal that sets out some of the key problems around Burden of Treatment and multi-morbidity. That the BMJ should commission this editorial from us shows that the idea of Burden of Treatment is getting traction across the healthcare economy. And why shouldn’t it? The bug issue here is patient and carer workload – something that we know much less about than we should. The editorial comes hot on the heels of an important meeting sponsored jointly by the National Institute of Health Research and the Royal College of General Practitioners that sought to develop a strong research agenda on multi-morbidity. The key message that I took away from that meeting was that there was a real risk of turning multi-morbidity into a kind of new disease in itself – in the way that we often now hear chronic illness and long-term conditions spoken about in a quite undifferentiated way. In fact, the big problems here are at a system level, and they’re the problems that Frances and I discuss in our editorial. I was a plenary speaker at the RCGP NIHR Multimorbidity meeting and I’ve embedded my powerpoint presentation below.