Video above: Nikhil explains the challenges of life after cancer. Full ep. on SBS On Demand.
As the elderly man with an incurable cancer lay dying, he told his son he had only one regret. Rather than enjoying his last weeks of life with the people and places he loved, he had squandered them on drug treatments that consumed his days and made him miserable.
Perhaps others can benefit from this man’s end-of-life insight. Too often, people with incurable cancers pursue therapy beyond any hope of benefit except perhaps to the pockets of Big Pharma.
There are many reasons this happens. Some patients won’t acknowledge that their death is imminent, and some doctors won’t admit to them that nothing more can be done to contain the disease. Others with unstoppable cancers think that if they hang in there long enough, a new treatment may come along to reverse their fate.
And some patients hope to ward off the Grim Reaper until after a special event, like a child’s graduation or wedding or birth of a grandchild. Still others succumb to the urging of family members to try everything modern medicine can offer. Even I fell into that trap.
When my husband was nearing death from lung cancer, I continued to authorise radiation treatments in hopes he would live to attend a concert of the theater songs he had written. Alas, this was not to be (the concert became his memorial service), but after he died I realised how much my goal tormented his last weeks with treatments he didn’t want.
I also now realise that how people spend their remaining days should be a personal decision based on sound medical advice and free from other people’s influence. This should prevail for any ailment for which there is no longer effective treatment, or when the harmful effects of treatment far outweigh any imagined benefits, or when patients decide that their disease or its treatments make their lives not worth living. For example, in February, Paula Span wrote in the New Old Age column about a 92-year-old man with failing kidneys who, after two weeks on dialysis, discontinued treatment because “this is not the way I want to live — it’s painful and tiring.” He died two weeks later.
Although slightly more than two-thirds of cancer patients treated in the United States are cured, this is mostly the result of early detection and combinations of surgery, radiation and chemotherapy treatments developed decades ago, Dr. Azra Raza, director of the Myelodysplastic Syndrome Center at Columbia University, wrote in her forthcoming book “The First Cell, and the Human Costs of Pursuing Cancer to the Last.” In fact, experts suspect that some cancers discovered through early detection would never have become fatal even if they had not been treated.
But once solid tumors like cancers of the breast, colon, lung and prostate have spread well beyond the organs where they began — so-called Stage 4 cancers — cure is rarely, if ever, possible, although treatments with immunotherapy, for example, can sometimes prolong lives for months or longer. As Raza wrote, most new cancer drugs add mere months to a patient’s life at an agonising physical and financial cost. For example, she noted, the drug Tarceva prolongs survival of those with pancreatic cancer by an average of 12 days at a cost of $26,000 a year, not to mention dreadful side effects.
Still, buying time can be meaningful to many patients, who may use it to get their affairs in order, reconcile with estranged family or friends, and say meaningful goodbyes. A brilliant young woman I knew who died of colon cancer at 31 used the few extra weeks of life that treatment likely gave her to finish writing an opera.
But experts who focus on quality of life maintain that it should be up to patients to decide if continued treatment is worth the costs. And not just personal costs but also dollar costs, given that some new therapies cost hundreds of thousands of dollars a year. Furthermore, these experts say, the decision to continue treatment should be based on honest, factual advice, not wishful thinking or pressure from family members.
The decision today is more complicated than in decades past because some modern treatments are less toxic than traditional chemotherapy and because there are now ways to counter, though not necessarily eliminate, the devastating side effects of many treatments. Medical centers, the media and now the internet contribute to treatment dilemmas by touting early promising results of new therapies, giving patients and their families renewed hope for survival.
I wonder, too, how often oncologists suggest an experimental treatment more for the benefit of science than for the patients they’re treating. Based on my family’s experience, honesty about the goal is the best policy.
In 1958 when my mother was dying of ovarian cancer, her much admired and forthright oncologist, Dr. David A. Karnofsky, who devised a scale to assess patients’ ability to survive chemotherapy, told my father that there were no other treatments to help her. But the doctor asked whether some experimental drugs could be tried that might prove beneficial to patients with less advanced disease.
Even when people with advanced cancer are relatively healthy, attempting yet another round of treatment often worsens quality of life in their final weeks, according to a 2015 study of 312 patients with metastatic solid tumors and a prognosis of six months or less to live.
About half the patients in this study opted for end-stage chemotherapy. For those who were sickest at the start, quality of life in their last week was no worse than if they had skipped further treatment. But among the 122 patients in the best shape initially, quality of life was significantly worse for the 56 per cent who opted for further chemotherapy. Holly G. Prigerson of Weill Cornell Medical College, who directed the study, expected the healthier patients to do better and was surprised by the results.
As Dr. Charles D. Blanke wrote about the study, published in JAMA Oncology, “Chemotherapy is supposed to either help people live better or help them live longer, and this study showed that chemotherapy did neither.”
Sometimes, however, chemotherapy or radiation is offered to patients near the end of life to alleviate debilitating symptoms. But the goal of such palliative therapy should be made clear to patients lest it give them false hopes for a cure.
By Jane E. Brody © 2019 The New York Times
