This rich November issue, which gathers opinions and experiences on different aspects of nephrology, conveys the sense of progress in our discipline and may offer some insight into how to deliver this improved care while prompting reflection on how to translate this progress into better care delivery.
Personalization is presently the password to advocate for tailored care, that, by avoiding futility, may be both patient- and planet-friendly, an issue particularly important in chronic diseases, whose clinical and psychological burden increase in parallel with disease progression [1].
In an effort to conciliate the limited nephrology workforce and the need for early initiation of nephroprotective treatments, combining guidelines into relatively simple recommendations targeted at optimizing pharmacologic therapy—and making it easily implementable by general practitioners— is presently gaining ground. We await the upcoming KDIGO conference on this timely issue, with interest tempered by concern [2].
Will early delivery of care become synonymous with guideline-oriented delivery of drugs? Of course, current treatments are often started too late, but is the standardization of drug delivery and generic—often ignored—lifestyle advice the only path forward?
And if, in response to the fragmentation of care, our choice were instead to invest our time and effort in the workforce? Or in discussing conditions, diagnosing disease and comorbidities, and delivering care?
A system based upon education, personal involvement, and time is fragile. It depends on human commitment; investments in workforce may lower medical salaries, and the expected gain in optimization of care through personalization is difficult to assess. Standardization is easily controlled; personalization is not. Satisfaction is context-sensitive and depends on the idealized image of the physician, the Platonic idea—wise and distant, or empathetic and reassuring, offering rapid solutions or requesting shared involvement. These models may correspond to different cultures and expectations and cannot be embodied in a single physician. Personalization of care involves and enhances the individuality of each person— both the patient’s and the physician’s. This can be a resource, but also a source of heterogeneity.
However, a system based on competent drug delivery is also fragile. The initial phase of a disease—in this case, CKD—is also the one in which interventions have the highest chance of changing the natural history of the disease. Logically, it should be the phase in which a therapeutic alliance starts, adherence and shared decision-making are established, and investment in education occurs. However, the specialist is often asked to intervene only when this phase is over —that is, after failure—and the specialist becomes responsible for the final outcome of a disease they were not called to manage. The detrimental consequences of this modality of interaction are obvious. The clinical ones should be better studied, but the model remains counterintuitive, especially in light of recommendations for multidisciplinary management of advanced CKD.
Furthermore, guideline-based treatments depend upon guidelines that are based upon demonstration of efficacy (i.e. randomized controlled trials—RCTs). RCTs are not the best sources of information on side effects, which are typically better detected by observational real-world studies. Most often, adverse events are more readily recognized by specialists than by general practitioners, and the latter are more prone to discontinue a drug permanently than to reintroduce it after assessment. Economic pressure is high for new drugs, and almost non-existent for life-style interventions. It takes less time to add a miracle pill than the amount required for education. Education requires expertise, time, and communication skills; general practitioners rarely have time, and cannot deliver in-depth education across all fields.
Should we choose a system in which patients passively receive drugs, identified by guidelines, mainly based upon industry-funded RCTs, and see the specialists only when something goes wrong, that is, when the disease has progressed, all in the name of lack of time?
Why not deliver time as a part of care?
Why not move away from a consumer-oriented medical model? We are already doing it in other fields, for instance in the fashion industry, shifting from “all new materials” to “mostly recycled” as a virtue.
We cannot recycle in medicine, but we can integrate time into care [3, 4].
Let’s read about Rossella’s experience.
My name is Rossella, I'm 57 years old, and for 25 years I've been living with a diagnosis that has radically changed my life: chronic renal failure.
Two kidney transplants, years of dialysis, a long series of immunosuppressive therapies, breast cancer, the removal of a native kidney due to cancer, and a severe heart condition that silently accompanies (so to speak) my days: this is just part of my medical history, but also my daily reality. This daily reality, as an independent woman, also goes hand in hand with a normal life of work and interests, of daily routines, just like those of you, the "healthy" reader.
The second transplant, received several years ago, gave me a new opportunity, but with it came a new burden: that of permanent follow-up, punctuated by all kinds of check-ups—nephrological, cardiac, oncological, diagnostic. Yet, today more than ever, I find myself alone, facing not the disease, but the system that should help me cure it.
Every year, as directed by my transplant center, I am required to undergo a long list of tests: in-depth blood tests; abdominal and Doppler ultrasounds; chest x-ray; consultations with cardiology, oncology, infectious diseases, endocrinology, dermatology, specialists, Nothing extraordinary, except that booking these tests has become a challenge, and a real chore. There are no preferential channels, nor the possibility of timely access to appointments that aren't whims, but a matter of survival.
Accessing healthcare services often requires digging into your wallet; some people forgo treatment for obvious reasons, finding themselves unable to sustain huge financial expenses. No one, outside of chronically ill patients, can truly understand what it means to have to manage every step of a treatment plan alone: juggling tests, treatment deadlines, lack of coordination between specialists. Added to all this is the fatigue, the fragility, the anxiety of "will I be able to do everything this year too?".
I don't ask for privileges. I ask for normality and dignity: being able to have an ultrasound in a timely manner, being able to see a cardiologist before my condition worsens, being able to have a treatment plan that takes into account the complexity of those who, like me, live with an irreversible chronic condition. All this requires medical time.
What is missing is a systemic vision of chronic conditions. Not to fragment human beings, care should not be fragmented.
Transplant recipients are not "cured", but rather, highly complex chronic patients. Post-transplant follow-up cannot be left to the goodwill of individuals or relegated to the margins of healthcare priorities. It is time to strengthen the role of care coordinators, capable of following the patient's entire clinical journey; recognize that the patient's time is time for care, not an ancillary parenthesis (Fig. 1).
Fig. 1
It is upside-down: as a patient, time is even more precious than it was when I thought I was healthy. Empty time is needed for reflecting, enjoying, trying to be free. (Photo by M.M:, courtesy of the Author )
This translates into an appeal to invest in public health. Invest in time.
Transplants save lives, but it is follow-up that preserves them.
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