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ancer patients and their doctors do not want to give up.

Despite efforts by the professional association of oncologists to persuade physicians to treat cancer patients less aggressively at the end of their lives, that is not happening, researchers reported on Monday.

The study, presented at the annual meeting of the American Society of Clinical Oncology in Chicago, is the first to examine aggressive end-of-life care in cancer patients younger than 65.

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It is also the first to investigate end-of-life cancer care since ASCO warned physicians in 2012 that such treatments can be more harmful than beneficial. The professional organization recommended not giving chemotherapy or radiation, or performing invasive procedures like biopsies, when cancer patients are in such poor health that there’s virtually no chance of them benefiting from these interventions.

That seems to be a very unwelcome message, researchers led by Dr. Ronald Chen, a radiation oncologist at the University of North Carolina Lineberger Comprehensive Cancer Center, found.

Chen and his colleagues examined insurance claims from people enrolled in Blue Cross or Blue Shield plans in 14 states, pulling the de-identified records of patients 65 or younger who died between 2007 and 2014 and had metastatic lung, colorectal, breast, pancreatic, or prostate cancer. Of those 28,731 patients, about three-quarters received aggressive care within the last 30 days of life.

For patients with incurable colorectal cancer or breast cancer, the percent receiving aggressive care in their last month (71 percent and 74 percent, respectively) was essentially unchanged after ASCO’s 2012 recommendation from before. For those with incurable lung, pancreatic, or prostate cancers — all between 72 percent and 76 percent — it actually increased.

Aggressive care includes chemotherapy after multiple earlier rounds of treatment have stopped working and being admitted to an intensive care unit. Such interventions at the end of life “are widely recognized to be harmful,” Chen said.

That’s because most cancer drugs have serious side effects (vomiting, nausea, heart failure, fatigue, mouth sores, constipation, and more), making a patient’s last days tortured, and because a patient who has not responded to earlier treatments and is fading has almost no chance of benefitting from more.

For instance, one study cited by ASCO’s so-called Choosing Wisely recommendations found that in patients with non-small-cell lung cancer, only 2 percent responded to third-line chemo and none to the fourth-line drugs doctors tried.

These so-called “nth-line chemotherapies” are typically tried after cancer has spread to distant organs despite earlier rounds of chemo. And although cynics might guess that doctors are giving dying patients expensive drugs out of a profit motive, the practice is also common in countries where physicians are on salary rather than being paid a percentage of the cost of cancer drugs, as they are in the United States.

Because the study has not been published yet in a peer-reviewed journal, it has not been thoroughly vetted. One concern is that because ASCO’s Choosing Wisely guidelines did not use the phrase “end of life,” patients receiving aggressive treatment do not meet the criteria laid out in the recommendations, and only in retrospect is it clear that they were in their last month of life.

However, experts on end-of-life cancer care suspect something else is going on.

Most terminal cancer patients are not even aware they are approaching the end, found a study published last month in the Journal of Clinical Oncology.

In that study, researchers in New York interviewed 178 patients with advanced cancer, and recorded their conversations with their physicians, before and after they underwent scans to see if their tumors were continuing to grow and spread. Before their scans, 5 percent of patients acknowledged they had only months to live. Even after, only 7 percent did.

“These were people whose cancer has already metastasized, it’s all over the place, and it had progressed after at least one chemotherapy,” said Holly Prigerson, director of the Center for Research on End-of-Life Care at Weill Cornell Medicine, who led the study. “Yet patients didn’t know it wasn’t curable” and that they were approaching death.

The interview tapes suggested why. Physicians said things like “your tumor had grown only 0.2 centimeters,” which sounds minuscule but could be a significant fraction of the original tumor size, and therefore an indication of rapid growth. They said “some of your tumors grew, some didn’t,” suggesting things were so-so, when even one tumor that’s proliferating is very bad news because it indicates chemo isn’t working.

None of the patients pressed their doctors about their chances. As a result, they were “basically making treatment decisions in the dark,” Prigerson said.

It’s therefore no surprise that they, or their families, press their physicians to try one more drug. Oncologists “are very, very reluctant to put a number on how long patients have to live,” Prigerson said.

“They have very little to gain” by doing so, she added. “They’ll be accused of giving up or of being too pessimistic.”

According to Prigerson, that mindset, more than a profit motive, likely explains why, as Chen’s ASCO study found, three-quarters of patients with advanced, fatal cancers were given aggressive treatments.

“How can you make an intelligent decision about treatment and what your last days will be like,” she asked, “if you don’t even know” you’re approaching the end?

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  • My 83 yo father had terminal lung cancer that had spread to his lymph nodes. I am an RN so I expected the Dr to push chemo and radiation. I’ve always been very leery about doing these kind of treatments when it might not do much good. But surprisinly, he was quite upfront about his chances. Said that for his age and physical status, the treatment would be too bad and it might only work 40% of the time and even if it did work, he might only gain a few months for what he has to go through.

    I decided to let him have his last few months in relative peace. He lasted 6 months. It wasn’t until the last 2 weeks that he got to non functioning capability. 2 weeks was better than six months of misery.

  • Husband has terminal 3b/4 lung cancer that spread to the lymph nodes. Did chemo 9 months did not work, now on 17th treatment of Opdivo and no change. He is getting fatigued, nasty, legs barely work, breathing is poor, gets irrational everyday, moans and groans in pain all day and refuses to take any pain relievers. I am the wife and its getting unbearable to care take and I also have a heart condition and Im getting anxiety attacks and crying all day, I cant sleep and I cant talk to him, he yells all day. I try everyday to walk away and not react and its getting harder with each day. Its like hes become a narcissistic and abusive. Is there anything he can take to take the edge off and relax him. And is this normal losing all his skills.
    Please help me to understand this and be able to help my husband.

    • Talk to his doctor and/or treatment team, and tell the doctor/team privately what is happening at home. Then set up an appointment for the doctor to talk sense into him – or have the doc call him and ask him to come in. All the best and good luck.

  • Husband has terminal 3b/4 lung cancer that spread to the lymph nodes. Did chemo 9 months did not work, now on 17th treatment of Opdivo and no change. He is getting fatigued, nasty, legs barely work, breathing is poor, gets irrational everyday, moans and groans in pain all day and refuses to take any pain relievers. I am the wife and its getting unbearable to care take and I also have a heart condition and Im getting anxiety attachs and crying all day, I cant sleep and I cant talk to him, he yells all day. I try everyday to walk away and not react and its getting harder with each day. Its like hes become a narcissistic and abusive. Is there anything he can take to take the edge off and relax him. And is this normal losing all his skills.
    Please help me to understand this and be able to help my husband.

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