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Humanism In Child Neurology – Yesterday, Today and Tomorrow

Administrator: Rekha Mittal

Humanism in Child Neurology, Chimera or reality? A diagnosis that we cannot afford to miss
Alcy Torres

There is sufficient evidence that the number of responsibilities for child neurologists have been constantly increasing.  In the past, we assumed that high-income countries had a direct impact on the improvement of the health status of a population; however, spending is not guarantee anymore of good outcomes.  With overwhelmed professionals, numerous challenges and barriers it is not difficult to understand why providing humanistic care has been harder and as a result, the doctor-patient relationship has suffered. A review of The Medicine Report SPI 2013-14, ranks some wealthy countries at the bottom of the list in several categories ranging from infant mortality and low birth weight to life expectancy. In our book NAMASTE, we analyze humanistic practices around the world taking into account political, religious and cultural barriers and it became clear some of these problems are same with local flavors.  With new therapies out of reach for the majority, physician’s role has been challenged and many ethical questions need to be addressed.  Therefore, we will review the nature of the problem in the past, present and future by 1. Understanding how resources are diverted from patient care toward wasteful practices, overburdened bureaucracies and excessive profits to businesses in different countries.  2.  How physician burnout results in more expensive healthcare, less satisfied patients and worse outcomes and 3.  Setting the conversation towards practical solutions.

 

Challenges to Humanism in Child Neurology : are recent advances taking us back in humanism
Rekha Mittal

Although a majority of medical practitioners wish to practice humanism in medicine, practice styles can be affected by differences in availability of resources, ethnicity, culture, beliefs and linguistic diversity. Pediatric neurology is especially challenging; the disorders are often chronic and progressive, with varying degrees of physical and intellectual disability, requiring assisted living, often through adulthood. Interaction of the child may be limited with both the physician as well as the family , compounding the challenges.

Recent advances in investigations and treatments, especially in genetics, have resulted in most efforts being on the diagnostics and therapeutics, with lesser time and effort for understanding the family’s constraints and opinions, and resultant  loss of autonomy for both the Pediatric Neurologist and the family. Expectations of both may often be at complete variance with each other, leading to overtreatment or undertreatment.
Additional confounding factors are the time consuming electronic medical records, insurances and billers, patient reviews on the net, and easy availability of medical literature. Threat of litigation may lead to practice of defensive medicine.  All these may result in early burnout and loss of motivation. .
We will discuss the challenges to humanism in medicine in the present-day circumstances. Findings of a small survey on humanistic challenges in practice of Pediatric Neurology will also be presented.

 

Humanism tomorrow: individual  and local efforts
Vishal Sondhi

Medicine, including child neurology, is a humanistic enterprise. From the Hippocratic oath of the 5th century BC to ancient physicians/ surgeons like Avicenna, Maimonides, and Susruta, all have advocated that a physician should be learned in humanities and in sciences.However, child neurology has moved away from its historical humanities roots over the past few decades to a relatively dispassionate "business-like" medicine. 
This part of the symposium will discuss the path forward to renew the tradition of “humanistic medicine” by putting the patient(s) at the nucleus of the “medical atom”; preventing fragmentation of the patient's disease, and promoting a holistic understanding of human experiences, including his/ her personal, social, financial and family details; deriving professional goals from the real needs of patients and not just a computer-run algorithm; applying reason as much as “apps” to solve health issues; keeping these children above the prejudices of finances, race and ethnicity, and by using science and technology to improve clinical encounters rather than substituting human interaction by technology. 
The continued application of reason, science and humanism can enable each of us to find our own touchstone for humanism and renew our commitment to humanistic behaviors and policies.

 

Moving forward: Humanism tomorrow - collective and global efforts
Lauren Treat

How do we as a child neurology community respond to the struggles of our patients, their families, and to the moral injury felt by our colleagues?  
In addition to individual strategies, we must join together collectively to create support for the ongoing work of mitigating the tragedy of neurological disease in childhood.  
In lecture, participants will be invited to reflect on the role that larger medical societies can play in influencing the way treatments are approved, delivered, discussed and distributed. 
Child neurologists are experts not only in the diseases and their management but also in describing many of the challenges faced by the families of affected children. It is our responsibility to give voice to the family experiences and insist that attention be paid not only to physiology but psychology and circumstance as well. 
Standardized framework will be proposed for inclusion in any discussion on novel treatment, whether at the local, national, or international level:  what additional support must be in place to address :
A) the experience of the patient living with this disease as it is modified by the new treatment 
B) the family caregiving burden that will likely be affected by the new treatment and 
C) the human experience of child neurologists who will be stewards of this new treatment
Ethics and advocacy principles will be included, with effort made to represent perspectives from a variety of cultures, as well as both high- and low-resource setting.