Your sitemaster is intimately familiar with the human capacity for denial and avoidance. As someone who has spent much of his life writing for a living, he knows all too well his capacity for avoiding some topics until he absolutely has to deal with them!
A recent study by Epstein et al., just reported in the Journal of Clinical Oncology, seems to show something similar going on among patients with advanced cancer and among their doctors. (See also this media release from Weill Cornell Medical College in New York.)
Epstein and his colleagues interviewed 178 patients with advanced cancers that were not responding to chemotherapy. Their oncologists expected all these patients to die within 6 months. (Obviously these were not all prostate cancer patients.)
The interviews were all carried out just before and just after each patient’s visit to her or his oncologist, when the results of new, cancer restaging scan results were to be discussed. The objective of the study was to assess patient understanding of their clinical situation both before and after the visit.
Here is what the research team found:
- Before the restaging scan visit,
- 9/178 patients (5 percent) had an accurate illness understanding and gave correct answers to each of four “illness understanding” questions asked of them.
- 18/178 patients (10 percent) reported only recent discussions of prognosis/life expectancy with their oncologists.
- 68/187 patients (38 percent) reported only past discussions of prognosis/life expectancy with their oncologists.
- 24/187 patients (13 percent) reported both recent and past discussions.
- 68/187 patients (38 percent) reported that they never had discussions of prognosis/life expectancy with their oncologists.
- After the restaging scan visit (and after adjustment for potential confounders like education and race/ethnicity), there were significant, positive changes in illness understanding scores for
- The patients in groups that reported recent only discussions with their oncologists
- The patients that reported both recent and past discussions with their oncologists
Unsurprisingly, the authors conclude that
Patients with advanced cancer who report recent discussions of prognosis/life expectancy with their oncologists come to have a better understanding of the terminal nature of their illnesses.
But what on Earth has been happening before that? One of the authors is quoted in the media release from Weill Cornell as saying:
We were astonished to learn that only 5 percent of this sample had sufficient knowledge about their illness to make informed decisions about their care. These were people with highly lethal metastatic cancers that had progressed after at least one prior line of chemotherapy; their life expectancy was approximately four months from our interview. Many did not know that they were at the end-stage of their illness nor that their cancer was incurable. They were basically making treatment decisions in the dark.
And astonishment is the right term. How can anyone have been leaving such patients so far “in the dark” about reality at what is supposedly a high-quality, sophisticated medical institution in a major American city today? And how can the patient’s doctors have failed to give the patients (and presumably their families too) such insufficient insight into the realities of their situation?
Filed under: Living with Prostate Cancer, Management, Treatment | Tagged: avoidance, communication, death, denial, knowledge, risk |
THE "NEW" PROSTATE CANCER INFOLINK 
I wonder how many of these same patients would have an accurate understanding if they were given the same information but were told it was for another patient.
That is not an excuse for physicians to fail to communicate, just a recognition of the task.
I wonder if knowledge of prognosis/life expectancy was beneficial for these patients. I want to know my husband’s prognosis (very high risk), but he would prefer to trust his doctors and go on living his life. He’s suffering no side effects from HT or RT (yet); and he doesn’t seem to be stressed over his diagnosis. Maybe that’s better for your health than knowing the possibilities. When he has questions, he’ll ask; but he feels great so he’s not dwelling. Ignorance is bliss. Who’s to say? Could be a quality of life question.
Dear Mary:
I don’t disagree with you at all. However, I think there is a major difference between someone like your husband, who (apparently) shows no evidence of metastasis and could have years and years of life ahead of him, and a patient who has clear evidence of metastasis, who has progressive disease after chemotherapy, and who has a life expectancy of 6 months or less. Such a person has obligations to those who are going to survive them, such as making sure they have written a will and other issues.
Hi Mike
From a patient who I believe fits the description at least to some extent, the whole situation can a bit confusing. I can certainly understand that I have the lethal form of this disease. I realize that I am late stage and that I continue to progress both from a radiographic and from a symptomatic point of view. What is difficult to get my arms around is sense of how much runway remains.
I do not believe that there is clinical information available to accurately predict a timeframe. It feels like being trapped in a maze from a Harry Potter movie with some strange hope that I may find a magic item to teleport me out of the maze and back into a normal existence (even though I realize there are no magic items). It is weird.
My best guess is not to guess but to continue on with my life. My oncologist seems reluctant to discuss this with me and I no longer pursue this discussion topic with him. I have taken care of the wills, etc. I have also given up trying to have a discussion on this topic with anyone. It is pointless and becomes a no win discussion for the patient.
Just my point of view.
Best,
Bill Manning
Hi Bill, always lovely to hear from you. … I entirely understand that sense of confusion that you describe, but you do at least know (and have been clearly informed) that you have a lethal form of prostate cancer. I am not going to suggest that you have embraced it, but you have “accepted it” and (correctly in my opinion) continue to make the most of every available day.
What I found very disturbing about the study data reported was that the patients — all of whom also had a terminal form of some cancer — appear to have been largely clueless about this prior to their scheduled review of their latest scan data, even though the evidence was very clear in their medical chart data. Maybe it’s just me, but I find that horrifying on many levels.
Hi Mike
I omitted a key point in my response. Even though I understand my situation. No medical expert doctor oncologist has ever told me that I have a terminal illness. I find this amazing.
Bill
REALLY! So do I.
This is one of the best things you have published. I have shared it with many in my circle of friends and especially with some of my fellow cancer patients. Getting lots of responses but most agree about the lack of the “conversation” which might be denial, procrastination, or the pain of facing the reality. I too am very surprised with the difficulty I observe in my fellow physicians to speak the truth directly to the patient.
I see way too much over-treatment at the end of life. Rarely do they ask the patient, “What do you want?” Atul Gawande has nailed this in his book, “Being Mortal”.
Thanks for your efforts to deal with difficult subjects.
OK, so you’re making me eat my words. Found out today that earlier scans showed bone mets which no one mentioned. Had we known this, we may have chosen a different treatment plan or facility. Bone mets have increased and MO was not optimistic today at all. He asked if we wanted a time estimate, and I was surprised when Dan said yes. I think now he wishes he wouldn’t have.
Mary:
I’m sorry to hear this. How significant (widespread and large) are the bone mets?
On the report I was given there are no sizes. It says:
“Progression of osseous metastatic disease at the superior right scapula has progressed since the prior study. Similarly, abnormal activity at the superior left sacroiliac is more pronounced, and there is new abnormal activity at the most proximal left 11th rib. New activity is seen at the right frontal bone, adjacent to midline, and anterior right ribs 1, 3, 9, and anterior left rib 7.”
Considering the prostate is now small and nodes are unremarkable, do you think the PSA of 3.6 means the Lupron is working? We don’t know if it’s still on the way down or rising.
Dear Mary:
It would be a good deal easier to deal with your husband’s individual case through our social network, where we can ask you specific questions and give you individualized answers and question to discuss with the doctors. However, the fact that the latest report mentions three areas of new and abnormal activity is not promising.