Let’s face it: the life expectancy of someone on dialysis is lower than that of someone with healthy kidney function. So, when a person who has been on dialysis for many years passes away, it shouldn’t come as a shock.
From the patient’s perspective, the question is: how would we prefer to go? Would we want to spend our final days in a hospital ICU, connected to tubes and surrounded by machines that beep endlessly?
Or would we rather be in the comfort of our home, lying peacefully in bed, surrounded by loved ones, with our symptoms managed in a way that reduces suffering and preserves dignity?
Ideally, this decision should rest with us—the patients. Unfortunately, it often ends up being made by our families or doctors, neither of whom can truly know what we would want unless we’ve had that conversation with them. Too often, patients never speak about these things, and as a result, have little say in how their last days unfold.
So how should things be handled when the end approaches?
There is a concept called 'conservative care'—a non-aggressive, comfort-focused approach for patients nearing the end of life. It means stopping active interventions like dialysis and focusing entirely on symptom relief and comfort.
Although India legally allows for advance directives and living wills, the process of creating and implementing them remains complicated and often impractical. That’s why proactive communication is critical.
While everything is going well, the patient should have an open conversation with their family and treating doctors. This should cover specific preferences—whether they are okay with ICU admission, ventilator support, continuation of dialysis, or the use of antibiotics. There are detailed questionnaires available that help guide these discussions. These preferences should be written down clearly, indicating what is acceptable and what is not.
It’s equally important for the patient to educate their family about what conservative care means. Plenty of material is available online, and sharing this early helps ensure that, when the time comes, the family is not caught off guard. If this approach is introduced too late, it’s more likely to be misunderstood or rejected. Families need to know in advance that conservative care is a valid and respectful option—and one that aligns with the patient’s wishes.
Given the current medical and legal environment, this is the most effective way to ensure that a patient’s end-of-life preferences are honored.
Once these discussions have taken place, the responsibility shifts to the nephrologist or treating physician. When a patient enters a critical phase, the doctor should revisit the patient’s stated wishes with the family. One helpful clinical tool is the “surprise question”: “Would you be surprised if this patient died within the next year?” In dialysis patients, this timeframe might need to be shortened to three or even one month.
The physician should then guide the family through the possibility of transitioning to conservative care, based on what the patient has previously expressed.
It’s also important to distinguish between a temporary wish to stop treatment—perhaps out of frustration or fatigue—and a carefully considered decision to opt for conservative care. Dialysis is challenging, and there are moments when patients feel like giving up. But this emotional response must be weighed against a thoughtful, consistent desire to transition to a different mode of care.
It must be clearly understood—by both patient and family—that choosing conservative care is not the same as giving up. It is not about abandonment or withdrawing all treatment. It is a shift in focus: from prolonging life at all costs to maximizing comfort and dignity.
The doctor plays a vital role in this process. They must not only understand what conservative care involves but also be trained to manage it effectively—offering symptom relief, emotional support, and medical guidance.
This is never an easy path—for the patient, the family, or the doctor. But at its heart lies a simple truth: what the patient wants matters most. For many, quality of life outweighs the mere length of life. And everyone involved must respect that.
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