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From end-of-life care to quality-of-life care: Reflections from Indian oncology practice in a tier II Indian city
[To cite: Pothamsetty RK. From end-of-life care to quality-of-life care: Reflections from Indian oncology practice in a tier II Indian city. Natl Med J India 2026;39:347-8. DOI: 10.25259/NMJI_1138_2025]
In oncology, end-of-life care (EOLC) is often spoken of as if it were ‘no therapy’ or a form of ‘giving up’. Over the years spent at the oncology–palliative care interface, I began asking myself: Is hope only found in disease-modifying therapies? Or can it be found in other forms too?’ I have slowly come to see it as a therapeutic intervention in itself ‘active comfort care therapy’ (ACCT).
A memory stays with me. A 17-year-old boy with metastatic osteosarcoma came to us after multiple failed treatments elsewhere. He didn’t ask for a cure. He wanted pain relief. He wanted to celebrate his birthday with music, new clothes, and cake-cutting amongst his friends. His parents were frightened by the stigma and refused to allow any of his friends to mingle with him. Yet they kept asking if supportive care might make him strong enough for ‘one more cycle’. That push and pull between what he wanted and what they hoped was a lesson: EOLC does not begin when chemotherapy stops. It begins in the space between facts and hope, love and letting go.
This is not unusual. I often see oncologists struggling between ‘should we try one more chemotherapy regimen? Or should we opt for best supportive care?’ In our cultural settings, ‘doing something’ is equated with love, which is why many families struggle when ‘comfort care’ is suggested. ‘We believe you, doctor…. but can we try just one more chemotherapy cycle?’ They ask this, hoping for positive outcomes, searching online, chasing possibilities while quietly avoiding what their hearts already knew. When everything feels out of control, asking for ‘one more try’ feels safer and more promising than asking for acceptance.
Despite evidence emphasizing that early integration of palliative care improves quality of life, satisfaction, and survival,1–3 referrals remain delayed in practice. Why does this happen? Not because oncologists lack skill or concern, but they might feel it is not yet the time to ‘hand over’. The intention may be respectful and even protective. But the result is that patients miss a critical therapeutic window—not for more treatment, but for meaning, memory, and closure.
The fragmentation of modern medicine into specialties and super specialties has undoubtedly advanced clinical knowledge, but it has also diluted the wisdom of shared purpose. It is not that one is more important than the other. Both want to protect the patient, and both struggle to open the door to a different goal of care. If treating oncologists invite and involve palliative care professionals early, not as the last responders, but as care navigators, it could be a game changer—not only for patients, but for the culture of care itself.
With the emergence of newer oncological trials—from standard dose immunotherapies to ultra-low dose immunotherapy protocols—patients who once had no options are now living longer, even beyond ‘refractory’ status. So where does EOLC fit within this evolving spectrum?
This is where precision palliative care (PPC) finds its relevance. We can no longer afford to deliver generic comfort care after a sudden handoff. Instead, we must learn to align, communicate, and tailor (ACT) at every stage.
I agree that not all patients are eligible for these advanced protocols. But those who are eligible challenge us to rethink what EOLC really means. For palliative care professionals, this demands more than theory. It calls for practical wisdom, clinical fluency, and the confidence to sit at the oncological decision-making table to lead ‘comprehensive tumour board sessions.’
In traditional cancer care models, we always equate chemotherapy as ‘active therapy’; oral metronomic therapy as ‘passive therapy’ and comfort care as ‘no therapy at all’. But where, then, does EOLC fit? This is where ACCT comes in.
Even without chemotherapy or immunotherapy, EOLC addresses changes across the physical, psychological, social, and spiritual domains. It relieves physical pain while attending to psychological distress, social isolation, spiritual anguish, ethical uncertainty, and anticipatory grief. It also recognizes the often-invisible suffering of caregivers and helps mitigate compassion fatigue within the care team. Attention to logistics, cultural values, identity, and memory remains integral, while creating space for legacy work, death planning, and healing in silence. This is not an absence of therapy; rather, it represents a different form of therapeutic engagement that requires precision, skill, timing, attentive listening, and presence. We are not stopping treatment; we are realigning it: from treating disease to easing illness, from targeting malignancy to honouring the person, and from pursuing survival to preserving dignity.
Over time, I stopped telling families and patients, ‘You are at EOLC.’ Instead, I began saying, ‘You are at quality-of-life care (QOLC) phase’. That single vocabulary shift actually sparks dialogue, invites conversation and steers the communication. Families lean in, explore further, and a shared understanding begins.
I often conceptualize cancer therapy as a DNA double helix, where stability depends on precise base pairing, with adenine pairing with thymine (A-T) and cytosine pairing with guanine (C-G). In clinical practice, cure and care form two parallel strands that must remain aligned. Active treatment (A) should be balanced with Total pain (T), and Chemotherapy (C) should be guided by Goals of care (G), whether curative or palliative. As with incorrect base pairing destabilizing DNA, a mismatch between treatment intensity and patient-centered goals can lead to unnecessary burden and compromised quality of life.
Just as we describe cancer by staging, perhaps we must also stage communication and care transitions concurrently. In cancer care, communication ‘flags’ may follow staging.
Stage I (green) for orientation and survivorship.
Stage II (yellow) for distress screening and caregiver support.
Stage III (orange) for parallel planning, preferences, time and financial toxicity, and other non-physical concerns.
Stage IV a-c (red) for grief therapy, dialogue, advance care planning, dignity, meaning, purpose and bereavement.
Not everything that heals can be measured. Not everything that matters meets statistical significance. But every pain matters. And every story deserves a dignified, meaningful closure. In tier II Indian cities, with limited resources and strong stigma, reframing EOLC as QOLC can ease the resistance among oncologists, navigate families and patients to walk this road with less fear and more dignity.
Conflicts of interest
None declared
References
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