Lack of Health Care Continuity is a Growing Crisis in America Especially for Those of Us with PD: By Dr. De Leon

“Broken trust is like melted chocolate. No matter how hard you try to freeze it  can never return to its original shape.”


Being a patient who is chronically ill has definitely made me more aware of one of the great problems we have in health care today- poor continuity of care. As we approach the next Presidential election, I am holding my breath just like the majority of Americans. But for me the biggest issue of this election is one which has plague me and my family for a decade particularly since Obamacare was enacted into law.

As a doctor who struggled to bring difficult and challenging patients to some kind of balance (between medications side effects and quality of life); the careless dismissal of my plan by a hospitalist who decided patients were on “too many”  or that a “cheaper ” medicine would work the same sent me screaming. Especially when they did not bother to consult me even when patients asked for me to be consulted because it was not cost effective or deemed necessary by some administrator.

This new practice of medicine was brought about by the new trend to attempt to “socialize medicine” and have physicians act as employees of institutions instead of self-entrepreneurs who had autonomy over their own destiny and their patients. The discontent of been treated as perpetual “residents” is seen in the eyes and mannerism of walk of hospitalists everywhere. Those that I have spoken to while taking care of my dad told me could not wait to do something else. This despondency was caused by extensive hours of work, increasing demands by the hospital, and little control over their work because the ultimate decision making is left to the whims of administrators and insurance companies who know nothing about the practice of medicine. For instance, not long ago a hospital CEO was attempting to promote their new mammogram equipment for their hospital; so he thought that he would advertise for women to ‘buy one get one free’ (not a pair of shoes!) or to bring their daughters for a free mammogram at the same time of their visit….

This type of actions exhibits a totally out of touch mentally with the practice, the law, and recommendations / guidelines by American academy of Radiology.

What insurance companies and people behind affordable health care ignore is the bond that exists between a doctor and patient. For those of us with chronic illnesses, this bond is a crucial and vital part of our lives- it is an actual relationship forged through months and years of trust building – big part of following your doctor’s recommendations is having trust in their counsel. Unfortunately, much of the noncompliance is because of lack of trust. When we are placed in a position of sharing our most intimate details, fears and vulnerabilities with stranger after stranger leads to total dissatisfaction in the field of medicine in both patients and health staff. We are meant to have long lasting relationships in which trust can be forged over time.

Furthermore, the increase government interventions and regulations in medicine have taken the pride of a job well done from those practicing. How is anyone to take responsibility of any one patient outcome when there is not one single person in the medical field in charge? Now imagine you are the patient with a long list of problems and an equally long list of medications and all you want is to have someone develop a plan and follow through but when one day you see one person spend an hour delineating a plan and are asked to follow up in clinic only to have another physician see you who has neither spent time reading your history nor last visits plan because as soon as they walk in door they have to fill out a million little esoteric data required by law in order for them to be compensated so they don’t even shake your hand or bother to look at you at times. So without taking time tor really asses you who are sitting in front of them or listen to the fact that the data (labs) pulled up in their electronic medical records (who are often known to be inaccurate and incomplete) are of another patient who happens to share your name, they formulate a new plan of action leaving you completely frustrated.

This common scenario which occurs more often than not thanks to Obamacare is particularly bothersome for patients and the loved ones of those with chronic illnesses who are hospitalized – thankfully some physicians are more aggressive than others and still are free thinkers thus are more willing to fight for the patient independent of what administrators or insurances call for ( because insurance, hospital and government penalize doctors for spending money on patients, running tests and keeping patients in hospital over 3 days!). Of course, these doctors are often penalized for taking proper care of their patients – if it happens enough they too will soon go with the flow giving in to the broken system and perpetuating the lack of continuity of care chain. Lack of cohesiveness among the treating physicians only creates more anxiety in patients and their families. Same thing happens in the out- patient setting to a lesser degree. This is worst when dealing with PD patients or others with chronic diseases especially if known to have multi -system involvement requiring multiple specialists. These patients more than anyone are at the mercy and of insurance plans who have unfortunately the power to dictate when, where, and which test will and will not be covered.

This is where I, like many of you, become completely unhinged; however, I try as best I can to respect the opinion of other physician’s being one myself and fully understanding the challenges of the new healthcare system. Yet, I politely inquire reasoning behind new idea, treatments and changes of tests and medications to make sure it is something they feel as doctors is necessary or important vs recommending simply do to pressures from outside sources. However, sometimes although the reasons behind medical treatment is one imposed by administrators etc., we have no choice but to comply because we are hospitalized or our health plans coverage change suddenly removing access to our previous physicians or making our follow- up visits with our specialists incredibly unaffordable that we have no choice but to look for a replacement and start all over.
Let us voice our discontent and let government know is not ok with us to have poor continuity of care…we need health care revamped! hopefully this new election will bring necessary changes to better the care of all of us with chronic illnesses like PD. also let them know we need more neurologists not just more primary care physicians.



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