Hope, Uncertainty, and Hard Truths: The Complexity of Goals-of-Care Discussions in Oncology

There are many priorities for an individual with a suspected malignancy, which include confirming as quickly as possible a diagnosis in the presence of concerning signs and symptoms, encouraging the expedient assessment of cancer stage and other required testing to determine optimal therapy, and participating in the coordination of appropriate sequencing of care that is increasingly multimodal in nature.

Despite enormous advances in treatment and associated outcomes,¹ the diagnosis of cancer is frequently accompanied by complex emotional and psychological effects on patients and their families, resulting in understandable fear and intense anxiety for the future, as eloquently discussed by Susan Sontag in her landmark text, Illness as Metaphor.² This response of patients and their loved ones may influence how they view subsequent information regarding currently existing objective prognostic data and discussions of “goals of care.”

While appreciating considerable variation in how individuals deal with their diagnosis, as well as understanding the potential for difficult conversations regarding the specifics of available therapeutic options and anticipated statistically defined survival, it remains essential that such discussions be held. Further, while the need for empathetic communication cannot be overemphasized, long past is the era of paternalistic medicine when protecting patients from the truth about their cancer diagnosis was considered an acceptable clinical operating model.³ 

The language employed by the oncologist to discuss the goals of care may be very direct or nuanced, depending on the specifics of the clinical situation, and the patient’s knowledge level, and emotional and psychological states. For example, terms such as treatable rather than curable may help convey the potential, limited long-term benefits of available antineoplastic regimens.⁴ However, it is also recognized that such terminology may delay required difficult discussions or may be interpreted in a manner inconsistent with the hard reality of the situation.

When we ask about patient expectations when goals-of-care dialogues are initially undertaken, it is appreciated that many individuals may not be prepared, willing, or able to confront the soon-to-be articulated, objectively measured survival outcomes. For example, among a population of 1000 newly diagnosed patients, 69% and 81% of individuals with metastatic lung and colorectal cancer, respectively, “did not report understanding that chemotherapy was not at all likely to cure their cancer.”⁵

Further, within the clinical cancer research domain, the term therapeutic misconception has been employed by members of the academic ethics community to describe in their view a group of patients considering entry into early phase trials whose personal goals to achieve clinical benefits (improved survival and quality of life) through participation may conflict with their understanding of the stated aim of the effort, which is to examine pharmacology, optimal dosing, safety, and other basic properties of the drug(s) being administered.⁶

While much more could be added to this all-too-brief dialogue on issues related to provider-initiated communication of goals of cancer care and research, we now must turn to potential reasons for conflict with the views of the patient.

It would be difficult to find a better example of the contrast to what has been highlighted above regarding the need to report scientifically valid prognostic data no matter how difficult this information may be to hear, than to note the words of the late eminent Harvard University evolutionary biologist Stephen Jay Gould, PhD, in his landmark essay, The Median Isn’t the Message, upon being diagnosed with incurable peritoneal mesothelioma:⁷

“… all evolutionary biologists know that variation itself is nature’s only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently – and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation. When I learned about the eight-month median, my first intellectual reaction was: Fine, half the people will live longer … The distribution was, indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight-month median. I saw no reason why I shouldn’t be in that small tail, and I breathed a very long sigh of relief.”

The question to be asked here is whether there is anything fundamentally wrong with the perspective Gould brought, and others may bring, to a discussion of goals of care.

Finally, we end this commentary with a case and its associated implications:⁸

“The patient is a 31-year-old male never smoker diagnosed with multifocal bronchioloalveolar carcinoma in August 2010. Genetic testing of his tumor demonstrated no EGFR mutation or ALK rearrangement. He was treated at an outside institution with first-line erlotinib [Tarceva] with no response. As a result of progressively worsening symptoms and hypoxia, he was referred to MGH [Massachusetts General Hospital] for additional genetic testing …”

What is the most appropriate conclusion regarding a goals-of-care discussion? Should this patient have been offered further testing and therapy, or, based on the facts of this case, was hospice referral perhaps a more reasonable suggestion?

In fact, the patient’s cancer was discovered to contain a ROS1 rearrangement, and when treated with an agent targeting this abnormality:

“... In less than 1 week, he noted a significant improvement in symptoms, and by 2 weeks, his hypoxia had resolved. Restaging scans at 8 weeks demonstrated near complete resolution of his multifocal lung tumor, which was subsequently confirmed at 12 weeks. At the time of this report (6 months), the patient continues on crizotinib [Xalkori] with no evidence of recurrence.”

This landmark report of the first patient whose lung cancer was found to contain a rare ROS1 abnormality and be treated in this manner, along with the perspective of Gould, are merely 2 of many examples that might be provided to highlight why goals-of-care discussions are often complex, may involve considerable thoughtful dialogue over an extended period, and require appropriate communication skills.     

References

1. Sontag S. Illness as Metaphor. Vintage Books; 1977.
2. Kratzer TB, Siegel RL, Miller KD, Sung H, Islami F, Jemal A. Progress against cancer mortality 50 years after passage of the National Cancer Act. JAMA Oncol. 2022;8(1):156-159. doi:10.1001/jamaoncol.2021.5668
3. Annas GJ. Informed consent, cancer, and truth in prognosis. N Engl J Med. 1994;330(3):223-225. doi:10.1056/NEJM199401203300324
4. Batten JN, Kennedy KM, Wong BO, et al. “Treatable not curable”: trade-offs in the use of treatment-oriented language with patients who have incurable cancer. Oncologist. 2025;30(3):oyae296. doi:10.1093/oncolo/oyae296
5. Weeks JC, Catalano PJ, Cronin A, et al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med. 2012;367(17):1616-1625. doi:10.1056/NEJMoa1204410
6. Appelbaum PS, Lidz CW, Grisso T. Therapeutic misconception in clinical research: frequency and risk factors. IRB. 2004;26(2):1-8.
7. Gould SJ. The median isn’t the message. Virtual Mentor. 2013;15(1):77-81. doi:10.1001/virtualmentor.2013.15.1.mnar1-1301
8. Bergethon K, Shaw AT, Ou SHI, et al. ROS1 rearrangements define a unique molecular class of lung cancers. J Clin Oncol. 2012;30(8):863-870. doi:10.1200/JCO.2011.35.6345