Early on, when my oncologist had to complete my insurance paperwork, she wrote "palliative," and I panicked. At our follow-up meeting, I asked her if this meant I was heading for end-of-life hospice care. She reassured me: "No, it just means the cancer is not curable."
Over time, though, I’ve come to feel that the palliative label carries a more subtle implication for Stage 4 lung cancer patients: that proactive treatments which might extend survival aren’t typically offered unless symptoms demand it.
I hesitate to say “the system is giving up on advanced LC patients” - the phrasing is too emotionally loaded - but there does seem to be an element of cost–benefit analysis at work. Something along the lines of: How much effort should be spent adding two months to the life of a terminal patient, at the expense of other patients or of investing in prevention and early detection?
It’s a harsh calculation, but in a world of limited resources, it’s the kind of decision healthcare systems have to make. This is partly why guidelines exist. They shield oncologists from having to make these agonizing life-and-death decisions; they can rely on “the protocol.”
Yet, the science is changing faster than the paperwork. New treatments can now extend Stage 4 survival not by a couple of months but by many. This is no longer the cancer of a decade ago, and the protocols must be revised to reflect this progress.
Bureaucracies are slow to move by their very nature; for patients with terminal cancer, however, that slow pace is glacially slow. Time is a finite resource we simply do not have the luxury to waste waiting for the system to catch up.
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Thanks for the thought provoking blog post. As a
ReplyDeleteFamily member who just spent 5 days supporting a family member at VGH’s palliative care unit, your article is very timely.
There were 11,000–12,000 families in BC directly affected by terminal cancer last year alone. That should be a lot of convincing families. Yet advocating for systemwide change in our complex healthcare system is overwhelming for families. Any suggestions on the most effective way for families to advocate for systemwide rethinking of the care models for stage 4 cancer patients? I work at St. Paul’s where I frequently hear about healthcare professionals who were inventing new care models to solve systemic healthcare issues. I’d love to know whether there is a group of physicians or healthcare professionals in BC who are leading the path towards a new model of care for terminal patients. I’d happily donate to support their efforts and advocate for a new model of care for terminal cancer patients.