The last two posts were entitled “Getting the News.” They focused on the story Lori and I told—our narrative. The second of those posts illustrated how our memory telescoped the reality of what happened and how we were clearly in shock at getting the news. This is totally understandable. As I reviewed my notes, however, what surprised me was that we also omitted from our joint narrative certain information many would see as critical for decision-making. This was information we were told, I had included in my notes at the time, and yet it disappeared from our story. In essence, we didn’t really “hear” it in the sense of consciously retaining it. For other patients getting similar news, this information might have been all they “heard.” How people newly diagnosed with advanced cancer “hear” the information they get may be critical for how they pursue their Journey. I have found myself asking, “Would it be helpful to have someone available outside the current medical team to help the cancer patient and family 'hear' information along their journey?"
In comparing our narrative, my notes, and Dr. D’s medical record entries, the following surprises emerged:
During our first visit on January 12th my notes concerning what Dr. D said were: "have to be prepared for [it to be] incurable, 5 years maybe (optimistic); 2 year life expectancy," "cures very rare given metastases," and "focus on the quality of life." Dr. D’s notes in Lori’s medical record are entirely consistent with this: “She [Lori] asked about prognosis. It is difficult to make a prognosis without a tissue diagnosis, but told her to be prepared for a diagnosis associated with an incurable disease, albeit treatable.”
Nine days later, on January 21st, additional scans and a liver biopsy had ruled out melanoma as a cause and brain metastases as a complication, but the primary tumor site at the junction of the esophagus and stomach had yet to be visualized and biopsied. Relatively speaking, this was good news—it could have been worse in terms of the expected course and suffering. My notes from that nearly hour-long visit are very revealing. Early on I wrote, "Gastric/esophageal cancer, median survival ~1 year; some patients may live 3-4 years" "Jana and Jason’s wedding—expect to be there." Two pages later, however, my note was, "1 year median; lower [bound] 6 months; [but] wouldn't assume a worst case scenario." There was no longer any mention of “some patients living 3-4 years.” Dr. D’s notes in Lori’s medical record are again consistent with this observation, “We had long discussion re natural history of disease. Explained that goal of treatment is palliative. Median life expectancy as short as 12 mo.”
There is no fixed time for survival after a diagnosis of Stage IV gastro-esophageal cancer. With the additional information from the biopsies and scans, Dr. D now had a better sense of the likely course than she had at our first visit. This led to her revising the expectation of survival from 2 years to 1 year. Of course, there is a distribution around those figures, but there is no reason to believe it reflects a “normal” symmetrically-shaped bell curve. At the beginning of our January 23rd visit with Dr. D, I heard (and noted) her say that some patients live 3-4 years, but by the end of the session, with no new test results surfacing during the hour, the focus in my notes was on a life expectancy of 12 months, albeit with some reassurance death was unlikely before 6 months.
I think what had happened, without our consciously noticing it, was that we had implicitly underscored our primary goal: being able to enjoy celebrating Jana and Jason’s wedding, slightly more than 6 months hence. Dr. D had included in her notes at the first visit that, “Her youngest daughter is getting married in August in Sonoma." In his Being Mortal, Atul Gawande emphasizes how important it is for the patient with a terminal illness to express her “goals” and fears. This can help the physician set appropriate expectations and treatment plans. It must have been clear to Dr. D that August was the critical date. Fortunately, she could be reassuring.
Lori and I talked a good deal after that visit, but I cannot remember any specifics. However, I do have an e-mail Lori sent Dr. D later that evening. It has a number of questions, including what could be expected without treatment. Dr. D’s response was, “Without treatment, the disease would continue to grow at a faster pace, and I would expect symptoms (fatigue, weight loss, pain, nausea) to be noticed within the next 6 months. The goal of the treatment is to delay progression of disease for as long as possible.” Without saying so explicitly, the purpose of the chemo was to maximize the chances of enjoying the wedding, just a bit more than six months away.
The visit with Dr. E at UCSF two days later was similar, but slightly more optimistic. Twice during a long meeting he said he would be “stunned if Lori was not in good shape for the wedding." Later in the visit he said that that he would be “stunned if there was no response” to the chemo, and that Lori would be “feeling good at the wedding.” He said he needed more information to get a sense of the trajectory of the disease, but felt it would be a “median 16 months. But bet on the long side…based on how [Lori] looks. It could be 6 - 36 months, but some patients occasionally live longer.”
Both physicians gave us relatively detailed information about Lori’s expected survival given her diagnosis. Neither held out hope for a cure. Dr. E was somewhat more optimistic than our oncologist, but she actually turned out to be “spot on” in her predictions. Median survival was quoted as 12 to 16 months. Both strongly implied that death within 6 months was unlikely. Both said, and I clearly included in this my notes, that some people may live substantially longer than the median.
That both Lori and I dropped from our narrative that (slightly) more optimistic message from the oncologists is significant. It is an indication that our implicit focus from the very first week was on the goal of being able to experience fully Jana and Jason’s upcoming wedding celebration. (We talked with Jana and Jason on the evening of the 9th—when we only had the “this sucks” diagnosis from our internist. They immediately offered to move up the actual wedding. It was impossible, however, to move up the date of the celebration.) Both Drs. D and E knew about the wedding plans, and were reassuring. Indeed, I clearly remember thinking (and later talking with others) about how surprised I was that getting the 16-month figure had such an impact on me emotionally. It wasn't, however, that it suddenly led me to think about long-term goals. The median survival figure simply means half the patients will have died before that date. Four extra months doesn’t sound like much, but in thinking about medians and probability distributions, those extra months implied a markedly increased likelihood Lori would still be alive in August.
Lori’s questions to Dr. D suggest she was considering whether to have chemotherapy at all. Chemo has a significant impact on one’s quality of life, but as Dr. D pointed out, the reason for Lori to have it was to delay the progression of the disease and its symptoms. Up to this point in this decision-making period Lori had experienced no symptoms other than the outbreak of sebhorreic keratosis, which was only a cosmetic issue. (Lori’s first cancer symptom, shortness of breath, wasn’t recognized until Friday the 30th when she came in for her pre-chemo educational visit.) Thus, in Gawande’s terminology, Lori’s goal was to celebrate at the wedding; her fear was poor quality of life. The chemo was necessary to postpone the certainty that the cancer would markedly impact her quality of life before the wedding.
I do not know how our discussions would have gone had our primary goal been much further in the future, or if we had no specific goal. Might we have grasped onto the comments about the small proportion of people who live several years? If so, even with exactly the same messages from our physicians, our narrative would surely have been different. Regardless, what we would have “heard” is not necessarily all of what our clinicians said.
At least in our case, with my contemporaneous notes I can see how information that was clearly presented and understood was nonetheless not “heard” by us in a psychological sense. An electronic recording would be more complete and accurate than my handwritten notes, but I’m not sure it would have made much difference. I had my notes, but we didn’t go back to them to see exactly what was said. (Lori’s handwriting on other notes indicates that she occasionally reviewed them to check the name of a medication, etc.) We “had the information we needed” to make decisions and didn’t have to go back to review the notes. A tape recording wouldn’t have helped.
While published cure rates for gastric cancer may be has high as 50%, those figures relate only to early stage cancers that have not metastasized. Lori’s cancer had already created “innumerable nodules” in both lungs, so there was no surgical option. By January, the cancer had spread from the primary site at junction of the esophagus and stomach to her liver, where one tumor was almost the size of a baseball. Dr. E said that given its size, he believed it had been growing there for about 18 months. In essence, there was too much bad news for one to have any reasonable hope of a cure, or even meaningful remission. Furthermore, aside from the difference between estimated survival times of 12 vs. 16 months, the assessments by Drs D and E were remarkably consistent. Had they differed in any significant ways, we might have focused on other aspects of the prognosis.
Lori and I each had more than enough statistics training to understand what the 12-month median figure meant—half of the patients for whom that figure is appropriate die in less than a year, and half live longer. We were told that some (but not many) patients may live 3-4 years. We also were told that the chances were small that Lori would die before the wedding. Hardly good news, but very different from the “you should get your affairs in order” message associated with a prognosis of a month or less. We have known people presented with that type of news and the impact is devastating. With 12 months, Lori, ever the planner, had time not only to prepare, but also to enjoy many things along the way.
I think our reaction would likely have been quite different if the message was that "20% of patients survive 3-4 years." That almost certainly would have led us to want to know much more about those patients—were their gastric cancers different, what treatments did they pursue that seemed to work, etc.?
What If We Had A Cancer Journey Companion?
In the previous posting I introduced the idea of a Cancer Journey Companion, or CJC. What would it have been like if a CJC (let me call her Sally) were in the room with us from the very beginning? I imagine Dr. D introducing Sally at our first visit as a professional who is part of the Oncology team, here to help us with the Journey upon which Lori and I would be embarking. Sally’s explicit role will be to take notes at our meetings with Dr. D and other clinicians in the organization when we are likely to be having critical conversations. This would not be every visit—Lori would be seeing many doctors for her biopsies, scans, etc., but none of those involved critical decisions. Sally would, however, be at each of our initial visits with Dr. D and others along the way as we were making decisions about how to proceed.
Unlike a cancer care navigator, Sally and her CJC colleagues would not accompany all cancer patients. Instead, they would only be made available for patients newly diagnosed with advanced cancer. The cancer care navigator facilitates the patient working through the complex set of providers and visits needed, and who can help the patient adapt to the treatments, or have the treatments modified when possible. The navigators are likely to be specially trained nurses who understand the patients’ symptoms and reactions to treatments. Navigators work closely with the physicians to medically and logistically smooth the patient’s Journey. They are, and are likely to be seen by the patient as, integral members of the clinical team. This can be positive, but sometimes it may be a negative.
As I suggested in the previous post, and is more clear now, during the first few weeks the newly diagnosed patient is likely to be in shock while still gaining (along with her physicians) new factual information about the potential treatment options. A navigator can be critical in helping to coordinate and manage all the logistics involved in getting through a very complex medical care system, but one first needs to know the goal towards which one is navigating. Lori’s goal was almost immediately apparent—the wedding in August. Having such a proximate and clear goal is probably unusual. Eliciting information about goals and fears as a patient is beginning a cancer Journey, moreover, is difficult.
Building a Relationship Between a Patient and New Physician
Patients newly diagnosed with cancer will begin seeing a whole new set of physicians specially trained in cancer care. In general, relationships between patients and their physicians can be complex, and relationships certainly vary across patients and physicians. Traditionally, the patient-physician relationship was largely one of dependency—the patient trusted the physician to make the “right” decision and then follow through on that decision as expertly as possible. Some, but certainly not all, patients now want to share in the decision-making about their own care. This was implicit in our back and forth with Dr. D. During the visit on January 21st we had an extended discussion about two different chemotherapy regimens that were equivalent in terms of their effects on cancer symptoms and life expectancy. One was a three-week cycle involving an infusion followed by 14 days of chemo pills and 7 days off drugs. The other was a two-week cycle involving an infusion followed by 48 hours wearing a pump in a fanny pack, and then 12 days off drugs. It was only when we got home (after choosing the two-week cycle with the pump) that Lori e-mailed Dr. D asking what would happen if she were to decline any chemo.
On reflection, the timing of these communications is quite interesting. Logically, a “shared decision process” would have begun with a decision about whether to have chemo or not, and if the decision was to have chemo, then exactly which regimen. Instead, we never discussed whether to have chemo during our face-to-face meeting; it was assumed Lori would do so. I think that during that visit the three of us (Dr. D, Lori, and I) were in the much more emotionally comfortable and traditional role of the physician suggesting what should be done, and the patient making choices “around the edges.” Lori’s input was requested regarding the choice of chemo regimens (she actually rejected the one Dr. D usually prescribes.)
The problem here is that the interactions between patients and physicians can be highly variable. At one extreme, some patients are relatively passive and just want to be told by their physician what they should do. (This does not always mean they follow through—some who don’t like the recommendations they get just continue to seek other physicians until they hear what they want to hear.) At the other extreme are patients who want to know all the options and then be able to choose among them. Each “model” creates difficulties for the oncologist wanting to best meet the patient's needs. In the first, the oncologist often has no way of knowing precisely what outcomes the patient wants. Lori and I signaled, but didn’t explicitly say, that what mattered most to us was being able to enjoy the wedding in August. This degree of clarity at the outset is probably unusual. For patients who say they want to decide, "in theory" the oncologist would have to convey all the details about the likely courses of each treatment pathway, discussing the many dimensions that may matter—survival, side effects, the treatment processes themselves, etc., and that people react differently to exactly the same treatment.
In the real world, however, it is impossible for an oncologist to truly convey all the uncertainties involved—the data aren't really known. Moreover, attempting to explain the inherent uncertainties with a patient who simply wants to be told what to do would shake that patient’s confidence. Failing to convey the uncertainties involved, however, is unfair to the patient who wants to make the decisions. Lori had a decades-long relationship with Dr. C, her internist. Lori knew Dr. C’s style, and Dr. C knew (consciously or unconsciously) how engaged Lori preferred to be in decision-making about her care. This, however, was only our second visit with Dr. D, and we “were in shock.” Patients don't enter the oncologist’s office wearing a sign identifying how involved they want to be; few have ever dealt with a situation like what they now face. How they have wanted to make decisions about routine care, moreover, may not "translate" well into the choices relevant for advanced cancer. How to convey information to a new patient is a huge challenge for any oncologist.
Knowing how to ask for information can also be a challenge for the patient. It is possible that the thought of not having chemo had never occurred to Lori until after we got home. It is also possible, however, that the question occurred to her during the visit but she didn’t want to ask it directly. (I don't know what was in her mind that day, but in my next posting I will discuss a question I had during a visit and chose not to ask.) With two equivalent chemo regimens, asking questions about the differences between the two would in no way be perceived as challenging Dr. D, especially because she explicitly said she would be fine using either approach. Furthermore, that conversation began with her saying the two were basically equivalent in terms of their effectiveness; the differences being largely in the convenience in getting the treatments. (We actually had an interesting conversation about how there were no randomized trials comparing the two and that oncologists trained at UCSF typically used one approach while those at Stanford typically used the other.)
A patient asking about the implications of declining chemo after that discussion, however, could be perceived as challenging Dr. D’s wisdom in not asking us first whether we wanted chemo. After all, by not beginning with that question, Dr. D was implicitly assuming no one would decline chemo. A patient beginning a Journey with an oncologist upon whom she must rely for information and advice, may find it difficult to ask challenging questions before having time to build a trusting relationship. We had no issues of trust with Dr. D, but how can one be sure about that at the outset with a new physician? The patient newly diagnosed with advanced cancer wants to get on with next steps as soon as possible, not potentially undermine trust and then have to begin searching out a new oncologist to be the guide on the Journey.
In the first few weeks, when the diagnosis is often still uncertain, the feasible treatment options unclear, and the patient still in shock, communication is likely to be especially fraught. The oncologist is uncertain about what types of information and recommendations are best for this particular patient, and the patient may not want to offend the oncologist with certain types of questions. Cancer treatment is highly complex and changing rapidly. It is unreasonable to expect oncologists to also have the training, skills, and focus to pick up on the subtle cues embedded in what a patient says (or fails to say).
That is where the CJC comes in. The CJC has the training, e.g., as a clinical social worker, to pick up on the nuances of communications. More importantly, while also part of the clinical team, as is a nurse navigator, the CJC’s role is focused on communications. When going over the notes from the initial meetings with the patient, the CJC is able to listen carefully to what questions the patient has, and where the patient is not interested in learning more. With the CJC not being someone responsible for managing the patient’s care, as the nurse navigator does in conjunction with the oncologist, the patient may feel less hesitant asking the CJC questions that might appear to be challenging. Furthermore, while some nurse navigators can fulfill the CJC role, their schedules are likely to be filled with the vast majority of patients who are not newly diagnosed with advanced cancer. Limiting the focus of the CJCs may allow them flexibility to schedule their time to “be there” for the small number of patients just beginning their Journeys.