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Patients With Metastatic Lung Cancer Often Believe Radiation Could Cure
Among 384 patients with metastatic lung cancer who answered a survey, two in five expressed belief that radiation therapy was "very likely" or "somewhat likely" to cure them. Eighty percent thought radiation therapy would allow them to live longer, and only one-third admitted that radiation was "not at all likely" to cure them. Aileen Chen et al published their results online in the Journal of Clinical Oncology, and news outlets picked up the story.
Radiation therapy can significantly improve quality of life in people with advanced or metastatic lung cancer -- by reducing neurologic problems from brain metastases, pain from bone metastases, or breathlessness from lung masses. However, radiation therapy does not extend life for people with metastatic lung cancer, except in rare cases. And radiation never cures metastatic lung cancer; people with the diagnosis usually live less than one year.
Why do a shockingly high proportion of people with metastatic lung cancer not seem to know this, after extensive discussions with multiple doctors, and after providing informed consent to receive radiation therapy?
Faced with the certainty of a terminal cancer diagnosis, some people may find an ability to cope by refusing to accept the truth. Perhaps a few have "enabling" physicians around them who fail to educate properly or to confront patients' and families' non-reality-based statements after a stage IV diagnosis is confirmed.
Although some studies show oncologists could be better at discussing end of life care in patients with terminal cancer, it seems there is a deeper problem than poor communication by physicians. "Our experience is that [this phenomenon] is common with many late stage cancers," Phyllis Butow, professor of psychology at the University of Sydney in Australia told Reuters Health. "We have done studies with patients with all sorts of late stage cancers and found similar results," she said.
If denial can protect someone psychologically through their last days, who are we to judge? Well, many of us reading this are the physicians who will soon be asked to provide discomfort-inducing, ethically questionable care when the ends of these patients' lives inevitably come. For these patients devoted to "fighting" to the end, going on life support may seem like a logical choice.
But placing someone on a ventilator with a plastic tube in their throat during their last days, when you know they could be at home or a skilled facility in relative comfort -- after you took that oath to "do no harm" -- and when you know that palliative care actually allows people with metastatic lung cancer to live longer -- well, it can get to you.
"It is bad, because it can lead to poor decision making where patients and their families feel driven to continue with toxic treatments that significantly reduce patients' quality of life and do not extend their lifespan," Butow told Reuters.
As Mark Twain said, denial ain't just a river in Egypt. But what can be done to prevent this common, natural human response to terminal illness from causing even more suffering to patients and families, and unhealthy stress to care providers?
For starters, we are long overdue for offering high-quality, low-emotional-content informational videos that show patients what actually happens during intubation and mechanical ventilation, as well as other medical procedures like CPR. In the case of CPR, real-world statistics should also be included. This would do the bare minimum to address pre-existing unrealistic conceptions of end-of-life care shaped by watching medical dramas in movies and on TV.
My brief search turns up nothing I would offer to a patient or their family to help them understand things and make better decisions. There's this TED talk:
But TED talks are for healthy, affluent young-ish people who don't smoke and probably already have their advance directive's 3-level surrogate decision making chain-of-command in a fireproof safe.
J. Randall Curtis and team at the University of Washington's End-of-Life Care Research Program have developed multiple support tools for physicians caring for patients and families with terminal illnesses -- including communication tools, interview guides, and assessment instruments. They're lengthy and seem best suited for palliative care teams' use or in research settings, but could be streamlined for more focused intensivist discussions in the ICU. They're not designed for patients to use, though.
University of Pittsburgh's Palliative Care Patient Education Page has the best list of internet-based resources for palliative and end of life care I've seen. But the families who most need educational support are the least likely to be web-savvy. We need a simple YouTube video (or series of them) we can play on the bedside workstation in the clinic or the ICU, at the moment we are having an end of life discussion. Someone please produce one, and it'll get pride of place on PulmCCM. Need funding? We'll launch an Indiegogo crowdfunding campaign. Count me in for a contribution, for the right project and people.
Got other suggestions, or know of good resources I've overlooked? Please leave a comment and share your thoughts.
Alieen B. Chen et al. Expectations About the Effectiveness of Radiation Therapy Among Patients With Incurable Lung Cancer. J Clin Oncol 2013; June 17.
University of Pittsburgh's Palliative Care Patient Education Page
University of Washington's End-of-Life Care Research Program