In the landscape of advanced kidney disease, where treatment decisions are complex and the outcomes often uncertain, palliative care plays a vital — yet sometimes underappreciated — role. It’s a discipline that focuses not on the disease itself, but on the person living with it. At its core, palliative care is about understanding what truly matters to each individual: their goals, their hopes, and their definition of quality of life.

As healthcare providers, we are trained to focus on the clinical — lab values, symptoms, treatments, and prognoses. We often meet our patients in hospital beds or dialysis units, at their most vulnerable moments. It is in these environments that we build a picture of their lives, but that picture can be incomplete. Seeing someone only when they’re unwell can create a powerful bias. It’s easy to assume that because they appear frail or tired in front of us, their quality of life must be poor. But that assumption can be misleading — and dangerous.

Over time, I’ve learned that the most powerful tool for truly understanding my patients isn’t a lab result or a scan — it’s a visit to their home.

When I enter into someone’s living space, I can appreciate the yet untold part of their story. The photographs on the wall, the smells from the kitchen, the well-worn chair by the window — these are the elements that speak volumes about a person’s identity. They reveal to me what brings joy, what sustains meaning, and what feels normal and grounding. This kind of insight is essential when navigating the difficult terrain of advanced kidney disease.

There is also something profound about the shift in power that happens when I enter a patient’s home. In the hospital or clinic, I am the one in control — I walk in with my hospital badge, the clinical notes, and a plan. In their home, I become their guest, and they become the hosts. Some will prepare food or coffee for me – which I see as a way to reciprocate the care that I provide them in the clinic or hospital. I feel that the change in posture on my part often leads to richer, more honest conversations about what matters most to them.

For many patients, dialysis is presented as the default option — a life-prolonging treatment that can feel more like a necessity than a choice. But dialysis is not always aligned with every patient’s goals. Some individuals may prioritize staying at home, avoiding hospital visits, or preserving the ability to travel or spend time with family. Others may place a higher value on mental clarity and independence than on physical longevity. I had one patient whose only goal during his advanced disease was to be able to play golf. These are deeply personal decisions, and they can only be made when we engage in open, thoughtful, and ongoing conversations about what matters most.

That’s where palliative care comes in. It is not about giving up, and it is not limited to end-of-life scenarios. Rather, it is about advocating for the patient’s voice — clarifying goals of care, managing symptoms, and ensuring that medical decisions are grounded in the person’s own values. In advanced kidney disease, palliative care allows us to shift from a treatment-focused mindset to a person-focused mindset.

One of the most important conversations we can have is simply to ask: “What are you looking forward to?” This question opens a door. It invites stories, values, memories, and hopes. It often leads to reflections on identity, legacy, and the kind of life the person wants to lead — even in the face of serious illness.

We can’t assume we know the answer. In fact, we often get it wrong when we rely only on the clinical setting to inform our understanding. That’s why seeing people in their homes can be so powerful. The home environment will offer clues into what makes life meaningful. And when we see these, we begin to understand why someone might choose to forgo aggressive interventions in favor of comfort, connection, or stability.

Of course, not every provider can conduct home visits. But we can all strive to ask better questions and listen more deeply. Palliative care teams can be involved earlier in the course of kidney disease. We can create space for conversations that go beyond survival, and instead ask: “What are you hoping for? What are you worried about? What would you be willing to go through for a chance at more time?”

In these questions lies the art of medicine that honours the whole person.

Advanced kidney disease is a journey with many variables – and not every road will lead to dialysis. For some, the better path may be one that focuses on comfort, dignity, and time spent in familiar surroundings. Palliative care helps us recognize those paths and supports patients in walking them with clarity and peace.

As a palliative care provider, my clinical role is not extending a person’s life — rather, to understand the life my patients want to live. This helps to inform the advice that I will provide them. The focus ultimately is on which medical steps to take in order to best position them to achieve their personal goals.