Despite all the advances in treatment of cancer, death still remains an outcome for a substantial percentage of cancer patients. Indeed, cancer has become the leading cause of mortality in the U.S., surpassing cardiovascular disease.
The large majority of deaths occur in those with advanced disease, either diagnosed at late stage initially or who develop recurrence or advanced disease after initially having localized or apparently limited disease. Thus, barring unforeseen circumstances, the large majority of such outcomes do not occur totally unexpectedly, but there are foreshadowings for patients and their families that the prognosis may be limited.
Around 1990, I was for about a decade an attending in oncology at Harlem Hospital on 135th Street in Manhattan. One day, we saw a man in his early 30s with stage IV adenocarcinoma of the lung; we recommended the standard chemotherapy treatment to him, which theoretically would have provided an average survival of just over 12 months. (Nowadays just over 50% would, on testing, be discovered to be sensitive to newer drugs and do considerably better—the remainder would be treated with basically the same chemotherapy as 30 years ago.) He laughed, left the hospital, and I did not see him again until he was readmitted four years later with a fractured leg from a motorcycle accident. On this second visit, his tumor had grown considerably, but he was otherwise fine. I recall remarking to my fellow that if we had treated him four years earlier, we would be patting ourselves on the back with how well we had done with the chemo.
This anecdote has several lessons: 1. A little humility is always good; 2. Average means average—half do better, half do worse; 3. This is why we need controlled studies to evaluate treatments and interventions. Just as a caveat, I do not think the lesson is that one should reject normative conventional therapy.
In discussing end-of-life issues, perhaps a good first question is how good are cancer doctors at recognizing that the patient is at the end of life. This really has two components. The first is whether the patient, given his disease status, is incurable. The second is how long the patient has remaining. For the first question, I daresay that most oncologists recognize quite well which cancers, when metastatic or unresectable, are incurable. Under such circumstances, only a limited number of malignancies retain the possibility of cure and those exceptions are well known.
Of course, the knowledge that a cancer may be incurable still allows for a wide range of meaningful survival rates. Patients with metastatic breast cancer, prostate cancer or multiple myeloma usually have multiple treatment options available and may live many long years with good quality of life. This possibility extends to multiple other advanced lymphohematopoietic malignancies as well.
Clinicians are very good at defining these categories. But how good are they at quantitatively estimating prognosis? A survey of oncologists found that 60% reported that it was a very difficult thing to do. Nonetheless, 70% of patients stated that they wanted such information so they could undertake appropriate planning for their remaining future and for their families.
Inevitably, a common question at one or more points in a patient’s cancer journey will revolve around this question either by the patient him/herself or by a close family member. It may surprise you to learn that, at least near the end of life, oncologists are extremely good at doing this. A group led by Holly Prigerson, head of the Cornell Center for Research on End-of-Life Care, enrolled 726 patients (from seven major medical centers) with metastatic cancer who had progressed on their first line of chemotherapy, presaging a poor prognosis. Interestingly there were only 85 subjects in the study who were given a prognosis (that alone is pretty noteworthy!) and for whom we have follow-up survival data. The patient-recalled oncologist estimate of survival was accurate to within one year for 74%, to within six months for 57%, and to within three months for 26%. The oncologists tended to overestimate the prognosis as time got closer to the actual time of death (not surprising, right?). Physicians tended to underestimate survival when the prognosis was greater than one year. Patients with an accurate estimate of prognosis were more likely to acknowledge that they had a terminal illness and to forego subsequent chemotherapy.
Other studies do confirm that providers overestimate the prognosis as the time of death gets closer. Nevertheless, they also find that the estimates are also more accurate as the time gets closer to death.
Obviously, estimates are just that—intelligent guesses provided for two purposes, to help guide the patient in making appropriate decisions with regard to treatment choices and to give the patient as accurate as possible a sense of his/her future so they can plan for themselves and their families. These estimates are based on statistics and averages and, of course, exceptions are the rule, even wild exceptions. Nonetheless, it is usually not a good idea to plan for the exceptions, even as one prays for miracles (as one should). And if you are not sure, a second opinion can often be reassuring.
Alfred I. Neugut, MD, PhD, is a medical oncologist and cancer epidemiologist at Columbia University Irving Medical Center/New York Presbyterian and Mailman School of Public Health in New York.
This article is for educational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment, and does not constitute medical or other professional advice. Always seek the advice of your qualified health provider with any questions you may have regarding a medical condition or treatment.