Although physicians tend to overestimate substantially the survival of patients with advanced cancer receiving palliative care,1-7 in this vignette, because of the tumor's response to tamoxifen, Dr D substantially underestimated Ms M's survival, an event that has been shown to occur in less than 20% of patients.8
Because the science of prognosis is anchored in disease diagnosis and extent, Ms M's diagnostic ambiguity contributed to making this case extremely challenging prognostically. Her initial skin lesions had a clinical history and course apparently consistent with a malignancy but had an atypical appearance on pathological examination. Pathological evaluation of the narrowed colon revealed a metastasis from a presumed gastric primary malignancy with a single-cell infiltrative pattern, but there was no clinical evidence of a gastric primary source. Finally, the patient's apparent disseminated gastric cancer responded dramatically to tamoxifen, a therapy that has not proved effective in clinical trials of estrogen receptor–positive gastric cancers.8
Another explanation for the patient's findings and course is that she may have had a different type of disseminated cancer. Lobular breast cancer is also an adenocarcinoma that expresses estrogen receptors, has a single-cell infiltrative appearance, can seed the peritoneum and infiltrate organs, and can be associated with clinically and radiographically silent primary tumors. Either way, she had a disseminated solid tumor, prompting the question of whether determining the primary tumor site (eg, further diagnostic evaluations or referral to an oncologist) would change the clinical management of the patient. The answer is yes, sometimes.
Ms M is an example of the potential heterogeneity of advanced solid tumors, both with respect to prognosis and available therapies. Her case reminds us that not all solid tumors are the same. Using the US National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) statistical software SEER∗Stat program on 9 registry public-use data sets (1973-1999),9 we found that disseminated gastric cancer and disseminated breast cancer have different survival curves, with the median survival from metastatic gastric cancer only 4.1 months and the median survival from metastatic breast cancer nearly 5 times as long at 18.5 months. There is also great prognostic variability between these disseminated cancers, with significantly different interquartile ranges (IQRs): 1.5 to 8.5 months for gastric cancer vs 5.5 to 43.5 months for breast cancer. Part of the difference relates to tumor biology, but part, too, likely relates to the effective and well-tolerated therapeutic option for disseminated breast cancer (ie, hormonal therapy), which has no parallel in disseminated gastric cancer.
What Determines Prognosis?
In general, patients' prognoses do not depend only on their age and primary diagnosis but also on the severity of their illness, their functional capacity both before and during the illness, and the number of their comorbidities.10 In patients with cancer, accurate prognostication can allow improvements in both patient decision making and clinician management to reduce the burden of symptoms. Clinicians can gain a better understanding of patients' disease models and expectations regarding the longer-term consequences of treatment, and this may enable them to decide among 3 types of treatment options: therapy with curative intent, palliative therapy with possible prolongation of life, or palliative care only.11 Better understanding of prognosis can arise from improved exchange of prognostic information initially and subsequent updating of this information as the disease and treatment evolve.12 Improved prognostication would enable patients with advanced cancer and their caregivers to be better prepared for their impending death and would allow their clinicians to make better informed decisions about appropriate site of end-of-life care.13
What Are the Goals of Treatment?
In addition to helping to predict prognosis directly, determining diagnosis informs treatment, which may also modify prognosis. Despite the significant ambiguity about her diagnosis from the time of presentation until death, Dr D provided Ms M with outstanding care by prescribing tamoxifen, which likely exceeded her initial therapeutic goal of palliation (ie, reducing or containing her visceral metastases to decrease likelihood of recurrent bowel obstructions) and ended up also providing her with life prolongation. In a more usual situation in which the primary cancer cell type was known, a consulting oncologist would have explicitly considered how different therapies given to palliate the patient's bowel obstruction might affect survival. For instance, such a consulting physician might first consider the average survival of all women with metastatic breast cancer as 18.5 months (SEER value includes both patients treated with anticancer therapy and those untreated). Then, the physician could estimate how either a clinical response to tamoxifen with tumor shrinkage or stabilization vs tumor progression might modify these averages. In this scenario, the physician might consider that, on average, similar women treated as part of the original clinical trials of tamoxifen lived approximately 24 months, with an IQR of 18 months to more than 5 years.14-16 Those patients who experience tumor shrinkage or stabilization with tamoxifen would likely fall on the longer end of the survival distribution and those patients whose tumors progressed while taking tamoxifen would tend to fall on the shorter end of the survival distribution. Thus, the consultation with an oncologist might have yielded a longer point estimate of survival (ie, 24 months) and a greater distribution of survival, 18 months to more than 5 years, depending on the response to tamoxifen and to subsequent therapies (eg, aromatase inhibitors, chemotherapy).
In a patient such as Ms M, with an incompletely defined illness, it is reasonable to ask, "Will further investigation change clinical management?" With respect to disseminated cancer in frail elderly patients who might not tolerate aggressive chemotherapies, some internists might recommend against aggressive diagnostic evaluations (sometimes forgoing consultation with an oncologist) and instead recommend initiating supportive care. Ms M is an example of why aggressive evaluations by subspecialists may be of value for some patients: (1) to enhance prognostic certainty through more refined characterization of the disease and (2) to inform supportive care. For this patient, a more complete definition of her illness (ie, determining the primary tumor site) may have changed both what the physician told the patient about her expected survival and how the physician managed the patient's supportive care (eg, considering that tamoxifen might prolong survival, timing of a referral to hospice, identifying the types of palliative therapies).
Apart from the issue of greater prognostic accuracy through refinement of diagnosis and familiarity with the survival implications of possible therapies, consulting physicians (eg, oncologists, palliative medicine specialists, and others) may have enhanced prognostic accuracy relative to the referring physician by virtue of the fact that they have no prior relationship with the patient. This recommendation stems from research suggesting that physicians with less emotional attachment to patients may provide more realistic estimates of their survival6 and that prognoses averaged across several physicians are more accurate than the prognosis of a single physician.17,18 The success of this technique may relate to minimizing the importance of extreme estimates from physicians (ie, eliminating outliers), which may themselves relate to the level of physician emotional attachment to the patient. Thus, through either formal (eg, oncologic consultation, tumor boards) or informal consultation (eg, curbside consultations), physicians may find disinterested colleagues helpful in improving the accuracy of the prognostic estimates they formulate regarding their patients, and patients may wish to seek such second opinions themselves.
Other Sources of Prognostic Information
Prognostic factors are those that assess the patient's risk of relapse based on indicators, such as intrinsic tumor biology and disease stage at diagnosis, and are traditionally used to identify patients who can be spared unnecessary adjuvant therapy based on the risk of relapse. For example, lymph node status and tumor size are accepted as well-defined prognostic factors in breast cancer. More recently, efforts have been directed at identification of predictive factors, those that determine the responsiveness of a particular tumor to a specific treatment.19
Unfortunately, there is no single, simple source of prognostic information, and finding it can often be a challenge for physicians.20 However, physicians may find relevant prognostic information in previously published survival curves, in medical literature examining the survival implications of patient attributes, and in their own clinical predictions about patient survival.
The SEER stage-specific survival curves are available in staging manuals,21 oncologic textbooks,22 and publicly available data,23 and survival curves are routinely generated from clinical trials of anticancer therapy. Other sources of survival data are natural history studies and randomized therapy trials that include a treatment arm that consists of supportive care only and not anticancer therapy. Typically, natural history studies are single-institution case series of untreated patients with mortality follow-up and have been reported in a variety of cancers, including head and neck cancer,24 breast cancer,25 and hepatocellular cancer.26 Randomized clinical trials with a "best supportive care" group include trials in advanced non–small cell lung cancer,27-30 hepatocellular cancer,31 metastatic colon cancer,32 5-fluorouracil refractory stage IV colon cancer,33 stage IV pancreatic cancer,34 and stage IV gastric cancer.35
Performance status is a global measure of a patient's functional capacity and has substantial prognostic significance. Consistently, it has been found to predict survival in cancer patients,36 and it is frequently used as a selection factor for patients entering clinical trials and also as an adjustment factor in the subsequent analyses of treatment effect. Several different metrics have been developed to determine performance status. The Karnofsky performance status score is used most often. It ranges from 100%, signifying normal functional status with no symptoms or evidence of disease, to 0, signifying death.
Multiple studies2,5,37-51 report that cancer patients with poorer performance status have shorter survival times. Several studies report that among patients enrolled in palliative care programs, a Karnofsky performance status score of less than 50% (substantial disability) suggests a life expectancy of less than 8 weeks.2,5,38,40,51,252
Patient Signs and Symptoms
Clinical signs and symptoms have long been used as potential indicators of patient survival in advanced cancer. In 1966, Feinstein and others53,54 first outlined the utility of such indicators, even in preference to biological details of a patient's condition. Vigano et al55 reexamined this topic in their qualitative systematic review of prognostic factors in advanced cancer. Of 136 different variables from 22 studies, performance status was the best predictor of patient survival, followed by dyspnea,40,50,56,57 dysphagia,38,40,56,58 xerostomia,38,52,59 anorexia,38,52,59 and cognitive impairment.1-3,5,38,52,59,60
Using Cox regression models, Vigano et al61 examined the influence of prognostic factors among cancer patients present at the onset of the terminal stages of their disease, after adjusting for clinical and demographics variables. In 1 cohort, at the onset of the terminal phase, the hazards of dying were increased by health-related quality-of-life indicators, such as the symptoms of dyspnea (hazard ratio [HR], 1.3; 95% confidence interval [CI], 0.9-1.6) or nausea/vomiting (HR, 1.7; 95% CI, 1.2-2.2); however, the most important predictors of worsened survival were the presence of liver metastases (HR, 2.5; 95% CI, 1.8-3.8), lung cancer (HR, 2.4; 95% CI, 1.7-3.4), and overall tumor burden (HR, 2.0; 95% CI, 1.4-2.7). In a second cohort of patients who were seen in later stages of their terminal disease, dyspnea (HR, 1.5; 95% CI, 1.1-1.9) or coexistence of weakness with digestive (HR, 5.2; 95% CI, 1.2-21.8), breast (HR, 3.1; 95% CI, 1.6-6.2), and genitourinary (HR, 3.5; 95% CI, 1.6-7.8) cancers were more predictive of survival. Psychosocial factors, such as emotional functioning, anxiety, spiritual distress, and lack of insight, were not consistently associated with survival in either cohort.
Physicians' Clinical Predictions
Many previous studies of prognostic accuracy for groups of patients enrolled in palliative care programs show that physicians tend to overestimate patient survival by a factor of 3 to 5.1-6 Nonetheless, these estimates correlate with patients' actual survival.5,6,55
In a systematic review of literature culled from the Cochrane Library, MEDLINE (1996-2000), Embase, Current Contents, and Cancerlit databases, as well as hand searches, Glare and coauthors7 compared physicians' predicted to actual survival in terminally ill cancer patients. Study inclusion criteria required both physicians' and actual survival data; study quality was assessed by using a critical appraisal tool. Among 17 published studies identified, 12 met the inclusion criteria, and 8 were evaluable, providing 1563 prediction-survival dyads. Heterogeneity of the studies' results precluded a comprehensive meta-analysis. Although clinicians consistently overestimated survival, their predictions were generally correlated with actual survival. Clinical prediction of survival (CPS) was generally overly optimistic compared with actual survival (median CPS, 42 days; median actual survival, 29 days); CPS was correct to within 1 week in only 25% of cases and overestimated survival by at least 4 weeks in 27% of cases. Agreement between CPS and actual survival was poor (weighted κ = 0.36). The accuracy of the CPS was improved when factors such as performance status, symptoms, and use of corticosteroids were considered, although their additional value was small.
Thus, the literature suggests that clinicians caring for patients with terminal cancer have potentially valuable discriminatory abilities, which may be a useful source of information regarding patient survival,62 but need to be aware of their tendency to overestimate survival because it may affect patients' advance care planning. Integration of clinical predictions with other known prognostic factors may be beneficial in estimating patient survival.
Examples of Disease-Specific Prognostication
Often, prognostication is most often based on staging of cancer by the Union Internationale Contre le Cancer (UICC) TNM system, which describes the extent of cancer in a patient's body by the size of the tumor, lymph nodes involved, and metastasis. For example, with newly diagnosed colorectal cancer, prognostication has traditionally relied on stage as defined by the UICC-TNM and American Joint Committee on Cancer classifications. The most important morphologic prognostic factors include tumor extent, lymph node status, tumor grade, and the assessment of lymphatic and venous invasion. Newer evidence suggests that tumor budding and tumor border configuration are important. For example, a multivariate analysis of 1324 patients with rectal cancer (confirmed among 316 patients in a separate data set in a validation analysis) identified both nodal status (P = .001) and circumferential margin involvement (P = .001) as the most important factors for estimating 5-year cancer-specific survival.63 In addition, there are suggestions that molecular features of the colorectal cancer can assist in refining prognosis.64 In adenocarcinoma of the esophagus and gastroesophageal junction, recent molecular pathology studies have identified a host of potential genetic and molecular factors that might have prognostic value both in identifying mechanisms of disease progression and in predicting response to targeted therapies.65
In breast cancer, recent clinical trials confirmed the generalizability and geographic transportability of quantitative survival estimates produced by such commonly used prognostic factors as tumor size, histologic grade, axillary lymph node status, estrogen and progesterone receptor status, age at diagnosis, and 2 different prognostication schemes (the Nottingham Prognostic Index and St. Gallen criteria) in 2 nationwide cohorts of patients diagnosed as having breast cancer in 1991-1992, the FinProg series (n = 2923) in Finland and the SEER series (n = 43249) in the United States.66
In studies of renal cell carcinoma, clinical (performance status and mode of presentation), anatomical (size and extension of the primary tumor, lymph node involvement, and distant metastasis), and histologic factors (histologic subtypes, nuclear grade, and tumor necrosis) are the most extensively evaluated prognostic factors. However, emerging literature now suggests that the currently available prognostic systems might be further improved through the inclusion of molecular and genetic variables.67 If these are confirmed, they can be integrated into traditional prognostic systems and these, in turn, used to design randomized controlled trials to evaluate the efficacy of newly developed neoadjuvant, adjuvant, or salvage treatments of patients with renal cell carcinoma.
In lymphoma, clinically based indices, such as the Follicular Lymphoma International Prognosis Index68 for follicular lymphoma and the International Prognosis Index69 for aggressive lymphoma, are of utility both in routine clinical practice and in research. However, these indices reflect only the biologic heterogeneity of these diseases. Newer molecular diagnostic techniques have made it possible to examine the underlying biologic pathways associated with outcome.70 In multiple myeloma, both comprehensive molecular cytogenetic assessment and information on proliferative activity of plasma cells may be of value.71 In chronic lymphocytic leukemia, a number of biological markers, including serum markers, cytogenetic abnormalities, IgVH mutations, CD38, and ZAP-70 expression in leukemic cells, offer important prognostic information, independent of traditional clinical stage. An important area of active research in chronic lymphocytic leukemia prognostication is the identification of which markers might be useful for predicting a response to therapy and its duration.72 Translating molecular biomarkers into clinical prognostication will require their standardization and validation in large patient cohorts70,72 to predict conditional life expectancy (the expected remaining years of a patient's life) and to take into account all-cause mortality.73
Disease-specific reviews of prognostic factors have been published for mesothelioma (incorporating nonexposure to asbestos),74 melanoma (incorporating sentinel lymph node disease),75 and urologic cancers (including molecular biomarkers for prostate, bladder, and kidney cancers).73,76,77
Investigators have sought to predict patient survival more accurately by combining many of these previously identified clinical predictors. The most recent iteration of studies report integrated models that render a single prognostic score from a combination of prognostic variables. For example, Morita et al56 developed a regression model predicting survival from performance status and specific clinical signs and symptoms termed the Palliative Prognostic Index. The investigators report that the index predicted 3-week survival with a sensitivity of 83% and a specificity of 85% and 6-week survival with a sensitivity of 79% and a specificity of 77%. This model was developed in a sample of patients enrolled in palliative care and validated in another sample.
In 2005, a Working Group of the Research Network of the European Association for Palliative Care examined prognostic factors in patients with advanced cancer.78 After identifying clinically significant topics, these authors undertook a systematic electronic literature search within the main medical literature databases in 4 areas: CPS, biologic factors, clinical signs and symptoms and psychosocial variables, and prognostic scores among patients with advanced cancer and survival of 90 days or less. Then, after reviewing the studies and assigning a level of evidence, they determined that a formal meta-analysis was not feasible both because of the heterogeneity of published studies and because of the lack of minimal standards in reporting results. A total of 38 studies were evaluated. Studies were classified into levels of evidence, with I indicating randomized controlled trials with low risk of bias or homogeneous meta-analyses; II indicating heterogeneous meta-analyses or confirmatory studies with a low risk of bias; III indicating exploratory studies with a low risk of bias; IV indicating any type of study with a high risk of bias, or investigative studies or nonanalytic studies; and V indicating experts' opinion. They then graded the strength of the recommendations as A-D, with A indicating consistent level I or II studies, B indicating consistent level III studies or one level II study, C indicating 1 level III study or consistent level IV studies, and D indicating level V evidence or inconsistent or inconclusive studies of any level. Level A evidence-based recommendations of prognostic correlation could be formulated for CPS (although they acknowledged several limitations of which clinicians must be aware) and prognostic scores. Level B recommendations were assigned to use of other prognostic factors, such as performance status, cancer anorexia-cachexia syndrome symptoms (weight loss, anorexia, dysphagia, and xerostomia), dyspnea, delirium, and some biochemical markers (leukocytosis, lymphocytopenia, and C-reactive protein). The authors concluded that prognostication of life expectancy is a necessity for clinicians involved in oncology and palliative care and that more accurate prognostication is achievable by combining clinical experience and evidence from the published literature.78
Stone and Lund13 published a descriptive and critical review of palliative prognostic scales, on the basis of the recommendations of the European Association of Palliative Care Prognosis Working Group supplemented by a MEDLINE search from 1966 to 2006 using the keywords prognosis, neoplasms, palliative care, and terminal care. They found that currently available prognostic scales, such as the Palliative Prognostic Score, the Palliative Prognostic Index, the Chuang prognostic scale, the terminal cancer prognostic score, and the poor prognostic indicator, all had limitations but nonetheless offered an improvement on unadjusted clinician estimates of survival.13
Also in 2007, Downing et al79 published a meta-analysis of survival prediction with the Palliative Performance Scale. An international collaborative study, it included individual patient data on 1808 patients from 4 original data sets and reanalyzed patients' survival patterns by their age, sex, cancer status, and initial Palliative Performance Scale score. Findings documented a strong association between Palliative Performance Scale score and survival with higher scores associated with increased length of survival. However, this study was not restricted to patients diagnosed as having cancer.79
Others have reviewed performance of more standard prognostic models, such as the Acute Physiology and Chronic Health Evaluation (APACHE) II or III, the Simplified Acute Physiology Score (SAPS) II, and the Mortality Probability Models (MPM) II, originally developed to quantify the severity of illness and the likelihood of hospital survival for a general intensive care unit population, when applied to critically ill cancer patients.80 Among the 10 studies identified that evaluated these prognostic models in cancer patients, 2 versions of a specific oncological scoring system (Intensive Care Mortality Model) that were evaluated in 5 separate studies showed better discrimination and calibration than the general prognostic models.80
Further research is needed to determine whether these scoring systems are useful in the clinical care of cancer patients and whether they are applicable to patients who are not yet enrolled in palliative care programs. With respect to the clinical utility of the scoring systems, treating physicians will need to determine whether the test characteristics of the tools (eg, sensitivity and specificity) fall above certain minimum thresholds for use in clinical decisions. Because of the issue of "zero-time" (ie, the analytic impact of the selection of the time at which measurement of survival begins),53,54 many of the algorithms that rely on the Karnofsky performance status score, symptoms, or laboratory values obtained after referral to hospice may not be applicable to patients with advanced cancer before referral to hospice.
The Art of Prognostic Disclosure
DR D: My primary objectives are for them to understand in as specific a way as it can be, without being too specific, that this is a life-threatening thing, and I believe their lifetime to be short. In terms of a style, I try to be as gentle and kind and compassionate as I possibly can be. I feel very strongly, primarily because of my experience, that if people don't know what they're up against, there's no way they can close out their life appropriately…I try to give some kind of an idea. The language I always use is "weeks to months, months to years, a year or 2" because people need some idea of what their range might be.
Disclosing a poor prognosis to patients is among a physician's most difficult tasks.17,81,82 Physicians must understand how critically important it is for patients to obtain information about the expected course of their illness (including their expected survival). As Ms M articulates, patients use this information in a variety of ways, including as a way to inform decisions about which medical therapies to pursue83-88 and when to put their personal affairs in order. Patients with terminal illness want their physicians to be honest about the severity of their illness but also want physicians to be optimistic.86-88 It may be the difficulty of meeting both these seemingly disparate needs that leads some physicians to choose to communicate overly optimistic survival estimates to patients89 and thus contribute to the documented discrepancies between patients and their physicians on the matter of prognosis.90,91
An Algorithm for Disclosure
Communicating bad news about a poor prognosis can be made easier with the use of algorithms that are created to include those elements that patients say they want and need to make decisions about how they will spend their remaining time.83-88 Several groups have outlined approaches to the successful disclosure of bad news.92-96 In 1 approach, the physician understands the encounter to include 4 temporally ordered segments, each with its own important communication tasks.95 Roughly paraphrased, these segments are the preparation, the content, the patient's response, and the close. Table 19-1 contains a summary of the types of tasks that, based on prior research of patients' information preferences in advanced cancer,86-88 we and other clinicians92-96 believe are important components of each segment.
Table 19-1Four Elements of an Approach to Delivering a Prognosis |Favorite Table|Download (.pdf) Table 19-1 Four Elements of an Approach to Delivering a Prognosis
|Tasks ||Possible Ways to Express It |
|Research the patient's condition to determine prognostic parameters with and without therapy, both "life-prolonging" and "palliative." || |
|Arrange meeting in private place with ample time, seating, tissues, and no interruptions (eg, telephones, pagers, staff). || |
|Alert the patient ahead of time that you need to discuss important aspects of his/her health. Suggest that the patient bring a person important in his/her life to the meeting. ||"The next time we meet, we will be reviewing important test results regarding your illness. I think it is important that you bring with you someone who is important to you." |
|At the meeting, first establish how the patient is feeling, identifying symptoms that can be the later focus of discussion of palliative therapies. Establish current level of debilitation (ie, performance status). || |
"First, I'd like to find out how you are feeling right now."
"Do you have any pain or other symptoms from the illness?"
"How are you spending your days?"
"Are you able to wash up?"
"Who's doing the cooking and cleaning now?" "How much of the day do you think you are in bed or on the couch?"
|Establish the patient's understanding of his/her illness. Ask what the patient hopes you will be able to do. ||"I wonder what your current understanding of your illness is and what you hope we can do for you." |
|Finally, establish what the patient wishes to know from you about their illness. ||"Some people want to know everything possible about their illness and others prefer to know very little. How much about your illness do you want to know from me today?" |
|Tell the patient that you have bad news to share ("Give a warning shot").89 ||"I am sorry to say that I have bad news to share today." |
|State the news clearly, simply, and sensitively. ||"It appears that the cancer has spread to your bones, which means that it is no longer curable." |
|Provide information in small amounts at a time. || |
|Make optimistic statements that are truthful. ||"I am very hopeful that with medicine we can control your bone pain." |
|Anchor the survival estimate you communicate in previously published data and modify it by the patient's current clinical status. ||"On average, patients with stage IV gastric cancer live 4 months. One-quarter of patients will live 1.5 months or less and one-quarter live 8 months or more. Although I do not know for sure where you are in that group, the fact that you are feeling so poorly right now and in bed most of the time makes me concerned that you may not live longer than the average 4 months." |
|Patient's Response |
|Acknowledge the patient's affect and express empathy. ||"I can tell how very difficult it is for you to hear this bad news." |
|Assure the patient of your continued involvement in his/her medical care. Squarely address the issue that forgoing chemotherapy does not create a therapeutic void; patients often conflate "doing something" with chemotherapy. ||"Although we cannot cure or shrink your cancer with chemotherapy, we certainly can continue to take care of you and treat you with medicines for any symptoms that the cancer may cause. There is always something that we can do to help you." |
|Summarize the new news sensitively and outline a short-term plan of care. ||"What we have discussed is that your cancer has progressed to involve your bones, which has caused the calcium in your blood to become dangerously high. What I recommend we do next is to focus on returning the calcium level to normal and strengthening the bone around the tumor by adding a new medicine that is given by vein every month. I recommend that you get the first dose today in our office." |
|Arrange a follow-up visit (even if the patient is being referred for hospice care) because it is a tangible example of your continued commitment to the patient. || |
|Offer to discuss the news with people important to the patient who are not present. || |
|Provide the patient with a means of contacting you or your team in an emergency. || |
MS M: Dr D told me about the appointment and wanted me to bring significant people with me to be there, and I brought young friends and relatives. That's when we got the word. Someone asked me how I felt, and my response was that I don't want to leave all these people. I don't know how much it penetrated…It was something I've never experienced before. The support system being there was really a key thing.
DR D: I often ask people something like, "Many people would like to have an idea about how long people live with this kind of illness, and I wonder if that's something you're thinking about?" The vast majority of people say, "More information is better, give me all you can." When somebody doesn't want to know, that also clues me in that there probably are some pretty serious psychological issues that need to be addressed, in a supportive way, obviously.
As Dr D clearly appreciated, and Ms M recognized as crucial, in the preliminary phase of prognostic disclosure, the physician prepares for the conversation with the patient by undertaking extensive research regarding the patient's illness, expected survival, and therapeutic considerations and ideally sets the scene to be as supportive as possible for the patient and family. Arrangements should be made for an in-person conversation without interruptions and with ample time for questions. Research suggests that cancer patients place the greatest importance on their physician being up-to-date on research of the patient's particular type of cancer. They also rated highly the importance of physicians giving patients their full attention and patients having enough time to have asked and have answered all their questions.86 As is evident in the preceding passage, Dr D appreciated that such discussions between patients and their physicians are nodal points in patients' lives and deserve special focus and steadfast emotional support.
DR D: I said that the disease was far advanced, and I expected that her life would be limited, and I believed it was on the order of months, to give her a ballpark [figure]. It was late summer when this was diagnosed, and I really didn't think that she would live until Christmas, realistically.
I always make it a point to share the degree of uncertainty with a patient and family. So, I say, this is my best guess. Where there is a great deal of uncertainty, I'm very up front about that. A huge range of things could happen. I did not anticipate the degree of uncertainty with this patient, so I don't believe I did that. I am heavily influenced by…oncologists [who] say things like, "Of course, no one knows what will happen to you." Giving that type of prognosis [may provide some patients with little hope or concrete] guidance on how they need to deal with their fears and…[the reality] that they might die quickly [or live quite a long life despite known medical evidence to the contrary]. I've seen too many people, especially young people, leave their families unprepared for their deaths. I think it's important that people know what the range of possibilities is.
In this phase of prognostic disclosure, the physician discusses the patient's illness and expected prognosis. In the case of Ms M, Dr D might have discussed the ambiguity of Ms M's diagnosis and the other possibilities on the differential diagnosis list. A way to engage prognosis when the diagnosis is uncertain is to discuss survival estimates of each of the diagnoses being considered. We advocate that when communicating prognosis to patients, the physician should first anchor the estimate in an average survival for similar patients, disclosing the median survival and IQR. Then they can comment on how the patient's existing performance status, symptoms, and subsequent treatment response might modify the estimate. For example, in this situation the physician might have acknowledged to the patient that her diagnosis was unclear and thus her prognosis was unclear. She could explain that the diagnoses she was considering were stage IV gastric cancer and stage IV breast cancer and that each had very different survival horizons and likely responses to therapy. If the patient was one who appreciated greater detail, she could explain that of 100 patients with stage IV gastric cancer, the average survival is 16 weeks, with 75% of patients living at least 6 weeks and 25% living 34 weeks or longer.9 She could then provide the same parameters for stage IV breast cancer. Although physicians report that they have mixed feelings about using survival estimates and statistics in their discussions with patients about poor prognoses,17 the technique has the clear advantage of anchoring patients in a prognostic estimate that is reasonable. With further discussion of the IQR, patients may come to understand the prognostic range and can plan accordingly.
Articulating explicitly the goals of treatment and whether the treatment has the potential of prolonging life is also critical. Dr D might have told Ms M that because it was possible that her tumor originated in the breast, it might be worth trying effective treatment for breast cancer to shrink or stabilize the tumor to prevent another bowel obstruction. If the treatment worked, which could be assessed by following the size of the skin tumors, then the bowel problems might improve, and Ms M might live longer than the average time discussed. The physician could advise Ms M that patients with breast cancer whose tumors stabilize or shrink with tamoxifen likely survive longer than the average 18.5 months' survival and would likely experience at least the 24 months' survival that the patients treated in tamoxifen trials had achieved. The physician also could explain that if the treatment did not work and the tumors grew, the tumor was more likely to be of gastric origin or a less favorable breast cancer, so the survival might range from the more typical 5 months of gastric cancer to up to about 18.5 months in the event of tamoxifen-resistant breast cancer.
DR D: She was very surprised and pretty shocked about having a relatively short prognosis in the beginning, and because of her age, I was surprised, that it really had never dawned on her that she needed to have her affairs in order.
MS M: I didn't expect to hear the 3 months, No. I really didn't know what to expect.
In this phase, the physician carefully observes the patient and acknowledges the patient's affect and response after hearing the probable effects of the illness and the patient's expected survival. The patient may identify concerns to which the physician can respond to help the patient better understand the illness and how it can be managed. Making optimistic but true statements may help the patient focus on tenable goals of therapy.
DR D: What's been very inspiring is the degree to which this woman's community has gathered around her and supported her, not only in the time of her diagnosis, but in a sustained way through 2 years. I was worried that those people would kind of burn out. But, in fact, she has a very large number of friends and family that care a great deal about her and are really there to meet her needs. And I think probably the most wonderful thing is that she has, in a very tangible way, learned how much she is loved. It's quite lovely, and it's taught me a lot of life's lessons about what's really important.
MS M: Having people understand a situation and knowing they could call her [Dr D] if they wanted to, I think is a foundation of it. Maybe I'm not supposed to say it, but she's more like a friend than this person that's off somewhere else and tells you on the phone what to do.
In the final phase of prognostic disclosure, the physician summarizes the information discussed, makes a short-term plan with the patient, and as Dr D clearly conveyed, assures the patient and her support circle of the physician's continued involvement and availability. As a substantive matter, in this case, the physician might review that the patient has a tumor adherent to the bowel causing a blockage, that although its origin is not clear, it is most likely gastric cancer or breast cancer. Because these cancers have different survival patterns and different therapies, the physician explains how she and the patient will need to revisit the issue of diagnosis, treatment, and survival as they learn more about how the tumor responds to the recommended tamoxifen therapy. They make a plan to start treatment with tamoxifen, to evaluate the size of the skin lesions on a certain date, and to revisit diagnosis, prognosis, and treatment at that time. We believe that such concrete plans, even in the therapeutic situation of purely supportive care with opioids or antipyretics, have the dual effects of focusing on improving the patient's condition and assuaging patients' fears that "nothing more can be done," and thus they will be abandoned by their physician.