Abstract
As a health care quality professional and a close relative of someone with chronic kidney disease (CKD), I can speak to the challenges of managing this condition from a unique vantage point. My role in the field of quality improvement has made me very much aware of the extraordinary effort it takes to achieve well-integrated high-quality health care. I have also acquired some insight into the care gaps and friction points that make high quality difficult to attain.
Working on behalf of my brother with CKD, my top-of-mind issue is helping him coordinate advice and treatment from numerous and varied care providers. Our experience for the past 3 months is illustrative.
When he was ambulatory (ie, not in a care facility), his regular providers included a nephrologist, a cardiologist, a primary care provider (PCP), a surgeon, a urologist, a social worker, and a care manager.
During several hospital stays over this time, a number of hospital-based providers were involved in his care (hospitalist, nephrologist, surgeons, cardiologist, social worker, emergency department, and inpatient care managers).
Time spent in a rehabilitation facility required coordination with yet another set of providers—the rehabilitation physician, rehabilitation nurse, physical therapist, and occupational therapist.
At the dialysis facility (3 times a week), a nephrologist, nursing staff, and care managers all make decisions that involve some level of risk and may have substantial impact on my brother's health outcomes.
Providers collect and record information differently from one setting to another. With such a large number of touchpoints, there are many opportunities for error, confusion, and miscommunication. At times, I have had to demand that the PCP meets with specialists due to conflicting information.
Gaps and Friction Points in Dialysis Care
All CKD patients are not the same; they are in different stages of the disease and have varying levels of health. Important decisions must be made regarding how patients are set up on machines and how instructions are given. As we are seeing in other areas of health care, most dialysis facilities appear to be short-staffed—that is, a great deal of variation in staff. When it was decided that my brother needed to receive dialysis, he was given the names of several facilities and sent on his way without further guidance. A consequence of this lack of guidance was a problematic fistula surgery that has resulted in several and continuous vascular surgeries and a severely misshaped arm. In my experience, facility “ratings” are often unreliable in reflecting reality. Support groups can be very helpful in choosing facilities.
When in-home dialysis is used, there is the added cost of providing a helper for the patient. For patients requiring dialysis, this cost can be prohibitive, but, if affordable, is a much safer and life-sustaining option.
Health Insurance Gaps and Financial Issues
Whether the payer is a major commercial carrier or Medicare/Medicaid, getting the right care to the right patient in a timely manner requires the right coverage options. In my brother's case, just pulling together all of the insurance advisories is daunting. Even though he has a commercial plan and Medicare, it appears that he will need Medicaid. When he was in the early stages of CKD 10 years ago, what better decisions might we have helped him make if we had had the assistance of a care navigator? Many patients and their families end up similar to ours—stumbling through the process.
Gaps in Patient Education and Decision-Making Support
To paraphrase what my brother's specialist told him, “I don't want to give you too much information, but we'll keep checking on you. We're going to leave it up to you because you will know when you're ready to go on dialysis.” My brother would say that this advice actually worked. In the hopes of avoiding dialysis, he chose the path of a kidney transplant, and lost the weight necessary for his transplant surgery. But it did not turn out that way.
Patients with CKD are at greater risk in many senses of the word. Most of them are taking multiple medications, many have limited funds, and all are being asked to make life-altering decisions on their own. The toll that dialysis takes on the body is significant, resulting in severe cramps and a weakened state after each event. The sheer volume of paperwork is overwhelming with forms and documentation required by hospitals and outpatient care facilities, Social Security, Medicare/Medicaid, nursing homes, and so on. Even patients who are financially secure in the early stage of CKD may end up having financial hardships as the disease progresses.
Social Determinants and Behavioral Health
Many people think that social determinants only affect people who are poor, less educated, or underemployed. I can attest that social determinants affect all patients. In the words of my brother, “CKD leads to poor and unemployed.”
There is a big difference between acquiring a chronic disease in early life versus later in life. One important—and often overlooked—factor is behavioral health. My brother would have made better choices if he had had help in understanding importance of sustained lifestyle changes. After surgery, his goal to was to enjoy eating the foods he loves, yet he never achieved a healthy balance. The family supported him in losing weight when it was necessary for surgery, but did not realize that he (and they) needed to help in sustaining the behavior change going forward. My advice would be for patients and their families to receive assistance with behavioral health earlier in the course of CKD. Disease navigators and advocates can make a real difference in this area.
Care Navigators and Family Involvement
Health care facilities (eg, dialysis, hospital, nursing home) know their specific care settings but not the full care spectrum. With so many choices to be made over the life of a patient with CKD, there is a real need for long-term involvement by care navigators. This level of holistic patient-centered care is too much to ask of the PCP. Patient advocates can also be engaged for objective opinions and advice. Retired physicians and nurses would make ideal patient advocates/care navigators.
There must be greater effort to include the patient's family in patient conferences and on patient advisory boards. One thing that should happen in every case is bringing the family together to identify family members as advocates for the patient. Because advocacy needs are long term, and responsibilities can be very time-consuming (eg, frequently checking in on the patient, following up on issues), more than 1 advocate is necessary. By chronicling the patient's experience throughout the course of the condition, advocates can also provide insights to the patient's PCP and specialist. Although my brother has several advocates, including myself, it often feels like there are not enough.
Addressing Issues Today and in the Future
The economic impact of disability is that it limits individuals' ability to live on their own. Placing patients in quality nursing homes is very costly. The financial reality for patients with CKD is that they end up in nursing homes or on their own—the latter is true for many, and that should not be the case.
Reimagining dialysis services may be a solution. Many patients who require dialysis (several times a week) are unable to get to facilities in their weakened state. Might dialysis centers consider adding senior living facilities? Might nursing homes or assisted living facilities benefit both their patients and their revenue streams by adding dialysis units? Perhaps dialysis centers could partner with senior living facilities, particularly in the northern states where climate is a factor. But let's not stop there. Consider all the possibilities!
My brother is an eternal optimist—his advocates must be the realists. Holistic, patient centered care, and a focus on the positive impact of sustained lifestyle change is what we all need. Advocacy groups and advisory councils can help by promoting early identification, appropriate treatment, and longitudinal care coordination for individuals with CKD. But let us not stop there. My sister—an advocate, a realist, and the family visionary—looks forward to a day when there will be safe artificial kidney replacements.
Footnotes
Author Disclosure Statement
Ms. Brown received no compensation for her contribution to this supplement and declared no other potential conflicts of interest.
Funding Information
No funding was received for this article.