12CareCoordinationFixes One of theBiggest Flaws inthe AmericanHealth CareSystem
By Gloria Rohrer,DPC Patient AmbassadorAs a dialysis patient, it has becomeclear to me that one of the biggestflaws in the American health caresystem is the disjointed way care is oftenprovided to patients. If patients havechronic conditions alongside other healthcomplications, it can be exceedinglydifficult to navigate the different doctorsand hospitals we need in order to receiveproper care.When seeing so many different doctorsat various clinics and hospitals, patientslike me can suffer adverse effects if all ourtreatments are not designed to addressour full medical history, rather than asingle disease. This can be because ofa lack of communication between ourcare providers or inadequate follow-up,which can in turn result in avoidablereadmissions, medical errors or somethingmuch worse.All of this is especially true for patientssuffering from end-stage renal disease(ESRD), who often need dialysis treatmentthree times per week, in addition torelying on several other doctors andmedications to treat accompanying healthconditions like diabetes or cardiovasculardisease. If an ESRD patient’s varioustreatments are poorly coordinated, it canlead to unnecessary and avoidable pain.Sadly, I experienced this firsthand. Mypatient journey began in 1992 when mykidneys began to fail. For the past twentyeightyears, I have received treatment fromcountless doctors and nurses at varioushospitals and dialysis care facilities.Unlike many other cases of kidney failure,my case was unique because I did nothave another underlying condition.Doctors, unable to determine what led tothe kidney failure, waited before puttingme on dialysis. For the next five years,I underwent weekly dialysis treatmentsuntil I finally received “the call,” or in mycase, a knock on the door at 2:00 a.m. by apolice officer telling me that I was going tohave a kidney transplant.Unfortunately, despite a successfulsurgery, three years later my new kidneyfailed. What followed was a long roadthat required emotionally and physicallytaxing surgeries and, eventually, the lossof my leg.Family activities, like the vacation myhusband and I took to Disney World,proved to be too burdensome. A medicalemergency could not be treated at thedialysis care facility where I had plannedto receive treatment in Florida, so I wasrushed to the hospital.But without a consistent coordinated caresystem, trips to a hospital emergencyroom can mean potentially dangeroustreatments for dialysis patients like me.For example, nurses generally try to giveus fluids as they would an average healthyadult, but for dialysis patients, thattreatment can be incredibly harmful.The lack of care coordination among facilitieswhile in Florida left me without propertreatment and dialysis for a week. After goingso long without care, pressure built aroundmy eye and it had to be removed. While mycase may just be one of many, no patientshould have to share my experience.Given that dialysis patients like myselfoften must see several different doctors atdifferent hospitals, we need providers toknow our medical histories to efficientlyand properly treat us. The system needsto recognize that us dialysis patients havedifferent needs than the average patient.Care coordination can offer us a morefocused, personalized treatment plan thatis key to a better health care system.Members of Congress have already shownthey acknowledge how vital coordinatedcare is to not just improving a patient'streatment, but our overall quality of life.Lawmakers like Representative JasonSmith (R-MO), Representative EarlBlumenauer (D-OR), Senator Todd Young(R-IN) and others took the lead on thisissue previously when they introducedthe Dialysis PATIENTS DemonstrationAct. They had enormous bipartisan andbicameral support, receiving more than 200cosponsors in the House and Senate. NowCongress is positioned to take the next stepin instituting coordinated quality care.Lawmakers have made improvements onthe Dialysis PATIENTS Demonstration Actwith a new bill they are working on calledthe BETTER Kidney Care Act. It providesa coordinated care framework for ESRDpatients, offering a holistic treatmentplan designed to cut down on duplicativeservices, reduce health care costs andprovide dialysis patients with the serviceswe need but aren’t covered by Medicare, likedental care and transportation to and fromtreatment centers. The BETTER KidneyCare Act changes dialysis patients’ lives forthe better by treating us as an entire patientas opposed to any single disease.Legislation like the BETTER Kidney CareAct provides much-needed relief to patientslike me. This kind of legislation restoresconfidence in medical care providerswhen diagnosing and administering theproper treatment. Let’s encourage ourpolicymakers to focus on improving carecoordination by supporting this bill.13
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