"You have cancer" are words that no one wants to hear. Yet, in the United States
in 2010, the American Cancer Society estimates that about 1.5 million people will hear those words, and the impact on their lives and their families will be immense.
If there is good news, it's that there is a probability that 2 out of 3 people diagnosed with cancer in this country will survive their ordeal. The sad news, based on an article published online this week in the Journal of Clinical Oncology, is that too many of these folks will start their journey hearing those fateful words in a less than appropriate manner in a less than appropriate setting.
To me, that is not only dismaying, it's appalling. And if we physicians can't understand, empathize and even sympathize with our patients when we tell them their life is at risk, then we are in serious trouble as a profession.
The study was performed at the National Cancer Institute, where all of the 437 patients surveyed had been referred for treatment. The researchers asked them how they learned of their diagnosis, what the doctors told them at the time they received the news, where they were located when they had the conversation, and how long the conversation lasted
The authors reported that a little over half the patients were told their diagnoses in their doctor's office, 18% over the phone, and 28% in the hospital. 44% of the conversations lasted less than 10 minutes, and 53% lasted more than 10 minutes. In about 31% of the conversations, no treatment plan was discussed. It is no surprise to anyone that patients were more satisfied with the experience-if you can say that you can be satisfied with hearing you have cancer--with in person discussions rather than by telephone, with longer time and with an explanation of treatment options.
It should be pointed out that--unlike the typical patient population in this country-- this group of people was generally better educated, financially better off and a majority of patients had brain cancer, leukemia and lymphoma
When you dig deeper into the report, you find some interesting information. Here is where the article gets a bit disheartening:
- Of the patients (28% of the group) who were in the hospital when they were told their diagnoses, 43% were told in their hospital room where maybe there was a semblance of privacy. But 23% were told in the emergency room, 13% in the recovery room, 7% in the radiology department and 13% in other locations in the hospital.
- 22% of the patients were told they had cancer by a medical oncologist, which means some other doctor(s) probably did all the diagnostic work but left the bad news to an oncologist. I suspect that many of the patients guessed on their own they had cancer if another doctor had referred them to a cancer specialist for a consultation. To me, that seems a bit harsh. 4% of the patients were told by a non-physician, including radiology technicians, nurses, physician assistants and relatives.
- 39% of the patients were alone when told of their cancer diagnosis.
- 8% of the patients had a less than 1 minute conversation about their diagnoses. 36% said the conversation lasted between 1 and 10 minutes.
- 15% of the patients lost trust in their physician as a result of the conversation, based on poor communication and general dissatisfaction.
- Finally, there are the quotes in the article that really had me taking a moment to digest: "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."
Maybe I should look on the bright side of this report, and realize that the majority of patients were told their diagnoses with empathy and respect, in a reasonably private location and given sufficient time and attention. But the problem is that a significant minority of patients were not, and that is disturbing.
Years ago, when I started my training and medical oncology practice, it was customary for patients not to be told anything about their cancer diagnoses. The exception was for women with breast cancer, because it was difficult to ignore the situation when you woke up after surgery and saw that your breast was gone and your chest covered in bandages. But for many, many others--no matter how obvious the situation--families and physicians conspired to keep them in the dark since there was so little that could be done.
I still recall as an intern sitting beside the bed of a man one night who was dying from lung cancer. He knew his diagnosis and that his days were short, his family knew his diagnosis and that his days were short-but they demanded that the medical team not inform the patient of his circumstances. The charade may have been intact, but the emotions were not. That man said a lot to me that night, and I still recall his distress at not having a final moment of openness and honesty with his family.
Times have changed, and patients and families are more empowered as a result. Patients are now routinely told of their diagnoses, and hopefully they and their families are active participants in their treatment decisions and knowledge of their disease. We clearly could do better in that regard, but we are making progress.
Obviously, I know a lot of physicians. And most of them I know care deeply about their patients. But the medical world is changing, just like everything else in our society. Patients are increasingly having difficulty establishing long term relationships with a primary care clinician, whether that be a physician or other health professional. Medical care is increasingly episodic as opposed to long term, and our care delivery is fragmented into specialties where too often there is no "captain of the ship."
The net result is that we end up in circumstances like those described in this journal article. Telling patients bad news is never easy, and although we have courses and programs to help physicians communicate better, the reality is that there is no measured practice standard that tells us whether or not we communicate effectively with our patients, especially when we deliver difficult news.
I hope we have not come to a time when empathy and understanding don't count. As I mentioned, I should look at the brighter side of this report in that most doctors do it right. But I can't get out of my mind the fact that too many do not.
If we physicians are not able to tell people life-threatening news with some shred of sensitivity and dignity, then maybe some of us are at risk of losing our human touch. That loss of humanity goes to the heart of what it means to be a doctor. And if we lose that, my friends, it would be tragic.
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