Palliative care is a relatively new specialty of medicine that arose out of the hospice movement of Cicely Saunders from the 1960s, and a book by Elisabeth Kubler-Ross called “On Death and Dying.” These women highlighted the importance, and the manifold ways, in which medicine had a responsibility and numerous methodologies for providing comfort care for those in the terminal stages of life.
The practitioners of this specialty, not limited to oncology but certainly closely intertwined with it, place an emphasis on symptom management, including pain, dyspnea, appetite and weight loss, anxiety and depression, and mental deterioration. They also focus on end-of-life support, providing an ear for the patient’s fear of death and helping him/her to cope. As do other oncologists, I try to work hand-in-hand with my palliative care colleagues to provide a balance of antineoplastic therapy while simultaneously providing for their symptomatic and spiritual needs, something that was always a major burden in the past but seems lighter now when it can be shared with palliative care specialists.
A major issue in this arena is the timing of referral to palliative care. Many if not most patients see it as an abandonment of active or aggressive care—in essence, giving up on them. Thus, referral to palliative care is usually delayed to the last possible moment, when the patient is truly on death’s door, bordering on comatose, when there can be few benefits from the referral and when better symptomatic and emotional relief could have been achieved significantly earlier. In truth, this problem is slowly improving as these providers prove their worth and oncologists are gradually turning to them earlier in the course of the disease.
A truly remarkable milestone study on this issue was published in 2010 in the New England Journal of Medicine by Jennifer Temel of the Dana-Farber Cancer Institute, a palliative care physician. Metastatic non-small cell lung cancer (adenocarcinoma and squamous cell carcinoma) generally has a life expectancy of about one year from diagnosis (or so it was at the time of this study). Temel and her team hypothesized that these patients would benefit in terms of their quality of life by having earlier access to palliative care consultation. Therefore, they randomized 151 such patients to either receive palliative care consultation immediately at the time of diagnosis or to usual care. Everyone received the standard oncologic treatment with chemotherapy. As hypothesized, the group randomized to upfront palliative care had better quality of life (based on a standardized questionnaire) and had fewer depressive symptoms. Nothing earthshaking here.
However, there was an additional, remarkable finding. The group receiving early palliative care lived a median of 11.6 months while the control group lived 8.9 months, an unexpected finding. In attempting to elucidate the reason for this difference in survival between the two groups, they found that the group receiving early palliative care received less aggressive end-of-life care (33%) than the control group (54%). In other words, after everyone had received the one evidence-based chemotherapy regimen that was known to be effective for lung cancer and had progressed on that, those who were under the care of a palliative care physician were less likely to move on to unproven second- and third-line chemotherapy regimens, which are often recommended to desperate patients. Such treatments usually do not provide a benefit and do give side effects.
Temel repeated this study but with a mix of advanced lung and GI cancer patients (published in 2017). Again, those randomized to early palliative care had significantly improved quality of life—both the lung cancer and GI cancer patients. No difference in survival outcomes was observed, however. Other investigators have also repeated these studies and confirmed that earlier palliative care involvement improves quality of life.
What are we to make of all these studies and observations? Clearly earlier palliative care consultation is an important approach and should be standard of care for those with advanced cancer for the purpose of improving the patient’s potential symptoms and quality of life. To the degree that it discourages giving unproven chemotherapy treatments up until the time of death, it probably serves a second positive aim.
Does it actually prolong life? That is more dubious. At least for the advanced non-small cell lung cancer population, the group in whom Temel did her original study before 2010, thankfully things have changed considerably. Precision medicine has brought to bear a slew of new treatments that have significantly increased survival for 30-40% of patients. Furthermore, immunotherapy has also had a dramatic impact on survival. Studies post-2010 may not show similar survival effects.
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.
