There is no question, getting a diagnosis of cancer is one of the biggest things that can happen to someone—right up there with getting married, having a baby, getting a divorce, or having a loved one die. It has not happened to me, but I have been told that it evokes a range of strong feelings including disbelief (this must be someone else’s diagnosis, not mine), fear or terror (OMG, I am going to die), sadness (all of the things I wanted to see and do but didn’t), and anger (hey, I don’t deserve this).
Given the magnitude of the event in someone’s life, it follows that the act of telling is critically important. If you have ever thought about this, you probably imagined a Marcus Welby-type putting his reassuring hand on your arm, gazing warmly into your eyes, telling you the bad news while at the same time conveying that he will be there as you embark on the fight of your life.
Thanks to researchers at the National Cancer Institute, lead by William Figg, MD, we now know more about how physicians actually give the bad news. In a publication in the Journal of Clinical Oncology (July 2010) titled, Disclosing a Diagnosis of Cancer: Where and How Does it Occur, Dr. Figg and his colleagues discuss the results of a survey of 460 oncology patients being treated at the National Institutes of Health in Bethesda, Maryland.
Where were they told?
Of the 437 patients who responded to the survey, 54% were given the cancer diagnosis in person in their doctor’s office; 18% were given the diagnosis over the phone. The remaining 28% were told in the hospital, mostly in their hospital room. However, of the 28%, 23% were told in the ER, 13% in the recovery room (we are not told whether the anesthesia drugs had worn off), and 7% in the radiology departments. Thirteen percent were told elsewhere in the hospital.
Who told them?
Almost all (96%) were told by a doctor: 25% by their surgeon, 23% by the PCP, 23% by a medical oncologist, and 26% by other types of physicians. Only 4% were told by non-physicians, such as radiology technicians, nurses, physician assistants, and relatives.
Who was with them?
Many people had someone, family or friend, with them when they received the diagnosis. However, 39% of individuals received the diagnosis alone.
How long did it take and how much were they told?
Only 38% of survey respondents reported conversations of longer than 10 minutes. Eight percent reported time spent was less than 1 minute (“Hi, you have cancer. Sorry, Bye! [??]”). A third said they received no information about treatment options and 30% said they were not presented with referrals to other specialists.
“Never events” in cancer communication
There are some things that I think we would all agree should never happen when a doctor is telling a patient that he/she has cancer. Here are some that were reported, via comments, on the survey:
- “My doctor at the time called me on Valentine’s Day to say I had a lesion in my chest…he left this message on my home answering machine.”
- “[The doctor] telephoned and left a voice message saying you have lymphoma…call me if you have any questions.”
- “The neurologist called saying he had made arrangements (for me) to see a neurosurgeon. I asked, ‘Why?’ He said, ‘You’ve got a brain tumor and hung up.'”
- One person learned of the diagnosis by reading a radiology report!
How did communication impact the patient’s satisfaction?
Although eighty percent of patients expressed greater than a “neutral level” of trust in their physician, only 16% reported “absolute trust”. (I have trouble knowing what to do with this information…although I think in today’s information age, absolute trust is very difficult to achieve, what does it mean to have a “greater than neutral level of trust”?) The study noted that 15% of patients who changed physicians after receiving the diagnosis (57% made a change) reported they did so because they lost trust in their physicians. Ten percent reported changing because of poor communication and 12% because of general dissatisfaction.
Predictors of satisfaction
Not surprisingly, people who learned their diagnosis in person were more satisfied than those who heard it on a phone call. Being told in a personal setting (doctor’s office or hospital room) was better than being told in the radiology suite or recovery room. Longer discussions were more satisfying than shorter ones. [I am glad Dr. Figg, et al., quantified these results, but geez guys, are these results a surprise?]
So, what does it all mean?
Obviously, there are always extenuating circumstances that can explain away what otherwise may seem insensitive or unacceptable. For example, the diagnosis of leukemia is confirmed via a blood test drawn in the ER or the final diagnosis is confirmed late Friday night of a 3-day weekend. But it is hard to believe that those circumstances apply to 20% of folks.
This paper is a wake-up call to every physician who communicates the bad news about a cancer diagnosis to patients. The conversation is going to be a life-changer. Think about that, and before you reach for the phone or give the news and rush out the door, remember the results of this study, and apply the Golden Rule.