Story at a glance
- Doctors have traditionally withheld information about the details of advanced cancer, as well as how long patients might have to live.
- Now, the pendulum is swinging in the other direction, with doctors delivering unsolicited details that can scar or depress patients.
- Some patients have decided not to learn about their life expectancy so they can concentrate on living without that anxiety.
You’ve just been given the diagnosis: cancer. It then gets worse: terminal cancer. You came in a couple of weeks ago for a biopsy, feeling hopeful, and today you’re dealt the ultimate blow. The doctor keeps talking, and you’re dealt information about the experience your body is about to undergo — intense fatigue, vomiting, nausea, the list goes on. You’re hearing it, but you’re not actually hearing it. Your brain hasn’t even begun to process such information. This is the point when many newly informed cancer patients are prompted to ask, “so, how much time do I have left?” But the thing is, some people don’t want to know.
Despite an overwhelming majority of cancer patients still requesting their projected life expectancy, there are some, like “Grease” star Olivia Newton-John, who decide they’d be better off without the information. Newton-John, who sat down with “60 Minutes Australia” earlier this August, spoke candidly about her third battle with cancer. The 71-year-old actress and mother was first diagnosed with breast cancer in 1992, again in 2013, and for a third time this year. "When you're given a cancer diagnosis or a scary honest diagnosis, you're suddenly given a possibility of a time limit," she explained.
"If somebody tells you you have six months to live, very possibly you will because you believe that," Newton-John continued. "So, for me, psychologically, it's better not to have any idea of what they expect or what the last person that has what you have lived, so I don't, I don't tune in."
For cancer patients like Newton-John there’s no right or wrong decision to make when it comes to the amount of information they choose to receive, and many are too shocked to make such an important decision at a moment’s notice. Fortunately, there are cancer centers working to turn the tide on the way such sensitive information is delivered, and just how much of it the patient needs.
An oncologist’s perspective
For an oncologist delivering the prognosis, this exchange is no walk in the park either. In fact, up until the 1980s there was no real protocol in place for doctors having to deliver information regarding a patient’s diagnosis or life expectancy. demonstrated that 90 percent of the 219 physicians polled didn’t even tell their patients about a diagnosis of cancer. Fortunately, when the study was repeated in 1979 the results were drastically different, with 97 percent of physicians indicating a preference for communicating a diagnosis of cancer to their patients. If there was such a turning of the tides, though, the question remains as to why so few terminally ill patients fully comprehend the details of their disease and how it will affect their quality of living for the time they have left.
An oncologist at the Cleveland Clinic Cancer Center, Dr. Timothy Gilligan, knows how hard yet necessary it is to deliver that bad news. “We're all going to die at some point,” says Gilligan. “You know, it's not a welcome thought, and it's not something that we're comfortable coming to terms with — the fact that our time is limited, that we are mortal, is a challenge for everyone at some level, and some people think about it a lot. Some people try not to think about it, but there aren’t a lot of people who are completely comfortable with that idea that we all die.”
“When you have a serious illness [the reality of death is] suddenly in your face in a much more immediate sense,” says Gilligan. As a result, people have a wide range of responses. “Some people want to know all the facts so that they can plan, and it gives them some sense of control — at least they know what they're up against. Sometimes it's easier not to know.” Plus, sometimes doctors are wrong with the numbers.
In fact, oncologists are often reluctant to discuss life-expectancy estimates with their patients. One reason for that reluctance is that survival estimates are challenging to predict. They found that nearly 60 percent of physicians reported that making such estimates was “difficult” and “stressful.” The problem is that most patients would still like to know — in a study of terminally ill cancer patients who were asked: “If your doctor knew how long you had left to live, would you want him/her to tell you?” Seventy-one percent responded “yes.” Despite this preference, in the same sample of terminally ill patients, only 18 percent reported that their oncologist provided them with a prognostic estimate.
There are some physicians, however, who think the pendulum has actually been swinging in the opposite direction as of late, with doctors sharing gory details and grim possibilities with their patients that they simply don’t need to know about.
“Just recently there's been a little more recognition that we may have gone a bit overboard with too much disclosure. I think this is a really good example of the fact that you don't have to force too much information on people.” says Dr. Edward Greeno, the Medical Director of the Masonic Cancer Clinic at the University of Minnesota.
Regardless of how much information they receive, one of the main concerns is the quality of life the patient will be able to have for the remainder of their life, however long that may be. For patients with too little or incorrect information about their disease, a common problem is an optimism for potential recovery that can lead them to elect to receive overly aggressive therapy, causing them and their loved ones pointless suffering.
In a recent study, the majority of patients with advanced lung and colorectal cancer didn’t understand that chemotherapy was unlikely to cure their cancer, and nearly one-third of cancer patients end up in the intensive care unit (ICU) in the last month of their life — an option that can be life-saving for patients with a non-terminal illness, but doesn’t improve or lengthen the life of people with terminal cancer. On a brighter note, studies have shown that those tough end-of-life conversations between patients and their clinicians are associated with greater use of palliative care and less aggressive end-of-life care. “High-intensity end-of-life care, by contrast, is associated with poor quality of life and of death, as well as higher costs, and, in some cases, reduced survival,” according to The Dartmouth Institute for Health Policy & Clinical Practice.
An oncologist’s reluctance to share life expectancy projections with their patients for fear of inaccuracy is understandable, but a majority of the estimates given are accurate to within a year. Seventy-four percent of patients surveyed for a study by the Journal of Palliative Medicine recalled that physician life-expectancy estimates were accurate to within a year, with the most accurate estimates delivered to patients who had 9–12 months to live. The oncologists who delivered estimates accurate to within a year were also associated with greater likelihood of patients, at baseline, acknowledging that they were terminally ill, engaging in an end-of-life discussion, completing a do-not-resuscitate (DNR) order, a lower likelihood of using palliative chemotherapy, and clinical trial enrollment.
Some hospitals, like the Cleveland Clinic Cancer Center, have realized the importance of clear and empathetic communication between doctor and patient — instituting communication training programs that will hopefully allow realistic expectations for end-of-life care and improve patients' quality of life, regardless of how much information they choose to receive.
“I think a lot of the work in the communication skills training that we do is to address the fact that physicians and other healthcare professionals are often very focused on delivering [medical] information — test results, prognosis, the disease, the treatment of side effects. They don't think there's a risk that they can forget about the human experience of being ill and having to go to the doctor to hear unwelcome news, and suddenly have your own mortality be a much more urgent issue than it is for everyone else,” says Gilligan. “So, a lot of it, I guess, relates to empathy.”
The communication skills training at the Cleveland Clinic includes something Gilligan calls “relationships and communication,” in which the oncologist is taught to figure out where the patient is currently at mentally and emotionally, and what the individual patient wants and needs. “If they ask a loaded question like ‘Am I going to die from this? Or how long have I got to live?’ We want to give them truthful answers, but we also want to make sure we understand what they actually want to know prior to answering it.”
The process for discovering this crucial information requires the oncologist to practice curiosity — who is this patient exactly, as an individual, and what do they need? Gilligan wants to know it all: what helps get them through their day, how they sustain a sense of hope. “You can really hurt someone,” he says. “You can traumatize them if you give them too much information too fast.”
Then, putting curiosity aside, he says that the main goal is to actually empower the patient, allowing them to play an active role in the conversation. “If I say to the patient, “My best estimate is that you have about three months to live” I've just dumped a load of bad news in their lap, and in a sense, put them in the role of the victim.” Instead, Gilligan first asks the patient what they already think they know about their disease and what their current expectations are, allowing the patient to claim ownership over their statements. “I think we can empower patients when we have these conversations in a skilled way.”