On the big screen, Hazel and Gus, the teenage couple from The Fault in Our Stars, walk the streets of Amsterdam hand in hand, sip champagne at a fancy restaurant and gaze at each other lovingly on a park bench overlooking a canal. For a moment, you almost forget that Hazel has thyroid cancer and Gus has osteosarcoma.
In real life, most teenagers and young adults with terminal cancer have to suffer through chemotherapy and other intensive treatments in their final days of life, a study finds. Augustus Waters did too — he died in the ICU soon after their Europe adventures, off-screen.
For 68 percent of patients, those interventions include chemotherapy, treatment in the intensive care unit or emergency department, or hospitalization in their final month.
The study, published in JAMA Oncology on Thursday, is the first of its kind to study end-of-life care for people ages 15 through 39. They either had stage 1 to 3 cancer, with evidence that cancer came back, or stage 4 cancer when they were first diagnosed. They died between 2001 and 2010 before reaching the age of 40.
Eleven percent of patients received chemotherapy within 14 days of death. In their last month, 22 percent of patients received care in the ICU and 22 percent had more than one trip to the emergency department. Sixty-two percent were hospitalized.
In comparison, the desired standard rate for intensive end-of-life care in cancer patients among older adults is less than 4 percent when it comes to both ICU and ED visits.
Are higher numbers necessarily bad?
"We don't know," says Jennifer Mack, a pediatric oncologist at Dana-Farber/Boston Children's Cancer and Blood Disorders Center and lead author of the study. "For a patient who is well-informed and wishes to pursue all possible measure to prolong life, it may be a very reasonable choice. It may be that these patients are receiving the exact care they wanted."
At the same time, these medically intensive measures can undermine the quality of life in patients' last days. And it's worrying to Mack, because some of these patients might have benefited from having hospice care and being at home surrounded by loved ones rather than hooked up to machines in the ICU.
One possible reason behind the high number for adolescents and young adults is personal preferences. It's pretty well established that older adults with terminal cancer don't want these intensive measures at the end stage, says Mack, citing previous studies. Most Americans prefer to die at home if given the choice.
But it may be a different story for younger patients.
"Young people are very concerned about people in their lives and how their decisions and death will affect their loved ones," says Mack. Adolescents with cancer are concerned about their parents. Young parents with cancer are concerned about their children.
For Mack, there's a bigger underlying question than the intensity level of end-of-life care that cancer patients are receiving, which applies to cancer patients of all ages.
"We have to ask the question about whether this kind of care is something that reflects their values," she says.
"It's critically important that we move to actually discuss what you want when and if you're seriously ill," says Tom Smith, director of palliative medicine and a professor of oncology at Johns Hopkins Medicine. Smith is not part of this study.
We all have "the deep and abiding desire not to be dead," says Smith. "Everyone wants to do every possible thing." But there comes a point when procedures like chemotherapy may actually make the patient worse and shorten his or her life.
That's when you really need to say, "We might not have a good way to keep you up and going for as long as possible, so help me take care of you and your family in the best way possible if we can't cure the disease anymore," Smith says.
"Communications is a problem across the board," Smith says. "It's harder to bring up in young people, but there's no excuse for not doing it."
At Johns Hopkins, there's a checklist that oncologists go through, starting with "What is your understanding of your situation?" and asking what's important and what the patient is hoping for at the end of life.
"Having that script makes it easier to go where doctors don't like to go and where patients are reluctant to go," Smith says. It's also helpful to write everything down and revisit the conversation every time there's a change in the patient's prognosis or treatment plan.
But those important conversations aren't happening with teenagers or adults, according to Amol Narang, a resident physician in the department of radiation oncology at Johns Hopkins who has studied the question.
Narang's team looked at three different advance-care planning options for cancer patients: assigning someone to make medical decisions on the patient's behalf when he or she can no longer do it; writing down what types of medical treatment the patient would like to receive at the end of life; and having discussions with health care providers about these preferences. In 2012, the study found, 40 percent of study participants still had not discussed their end-of-life care preferences at all prior to death.
"It's important that patients receive the type of medical care in line with their values, and it's important that they communicate their preferences to ensure that's the care they receive," Narang says.
Oftentimes people will designate a close relative to make decisions on their behalf without having a detailed conversation about the type of care they want to receive. A surrogate who doesn't know what the patient wants might not guess right.
"Don't let them intubate you or do CPR with almost no chance of making it if you don't want to," Smith says. "Conversely, if every minute of life is precious, even on a ventilator, make sure they know that."
On Wednesday, Medicare announced plans to reimburse doctors for having these conversations with patients about whether they want to be kept alive and, if so, how, when they're unable to advocate for themselves. The reimbursement change is expected to take effect in January. The goal is to encourage more health care providers to make time for these conversations.