Abstract
If I tried to focus on palliation, she would immediately bring the discussion back from this deep despair to when and how we could continue her therapy.
—David Rieff, Swimming in a Sea of Death: A Son's Memoir
“Y
Mr. G's daughter was understandably upset when we proposed inpatient hospice care. Mr G was a gentleman from Eastern Europe diagnosed with metastatic melanoma of the oral cavity with several bone and lung metastases. He had come to Italy for medical care, and was living with his daughter, who had lived in Italy for years, and was responsible for navigating the health system for her dad. Indeed, Mr. G did not speak nor understand Italian, and was entirely dependent on her to speak with us, his clinical team (we don't have a qualified Bulgarian interpreter in our hospital and we could't recruit an official translator).
When he first arrived in our oncology ward, he was in good condition. We recommended dacarbazine and local radiation therapy, but after two cycles, his disease progressed. We recommended a change in treatment to the CTLA-4 inhibitor, ipilimumab, since he still had a good performance status, and this caused a debate within the family. While Mr. G's daughter wanted to proceed, Mr. G's wife did not. She thought it was better to return to his native land, where he could die at home. When Mr G decided to start immunotherapy, she left Italy.
At the beginning he had a positive (even enthusiastic) attitude about the treatment, which he believed could really help him fight his melanoma. Following the first three administrations, however, he deteriorated physically and developed more serious pain and fatigue, to the point that his daughter and son-in-law could not meet his needs. As his clinicians, we knew that the situation at home was difficult; both his daughter and her husband worked, which meant that Mr. G spent much of his days alone, unable to even communicate with neighbors due to language barriers. Considering his decline, we recommended inpatient hospice care. “Why should my father go to a hospice?” asked Mr. G's daughter. “Isn't that the place where people die? Isn't this new therapy supposed to make him feel better?” We struggled to communicate the risks if he continued immunotherapy in declining clinical conditions against the potential benefits: a slow, but ultimately important response to treatment. Still, we stressed that it appeared to us that he could not be appropriately managed at home, especially given the fact he had been taken to the emergency room several times already.
Despite some initial reluctance, Mr. G and his daughter agreed to our referral for inpatient hospice care, and with adequate pain management and other palliative treatments, he was made far more comfortable. His performance status fluctuated in hospice: some days he would not leave his bed; on others his mood improved and he could perform some minor physical exercise. However a discharge to home was not considered safe or prudent.
During his stay, Mr. G eagerly awaited his daughter's daily visit. She would provide him with positive energy and optimism; her effort was clearly centered around the next dose of ipilimumab, and the “hope” of what results could be achieved. We realized that this sentiment was not only shared with Mr. G, but with the rest of the family in his country of origin during their frequent online conversations. As his inpatient stay lengthened, we felt that there was only a remote possibility for major clinical improvement. In addition, he had clearly deteriorated over this time span, a consequence unlikely to represent just a side effect of treatment or pseudoprogression of disease.
Although Mr. G did not speak Italian, he communicated with his body language that he was aware that we and the daughter were waiting for something that was unlikely to occur (i.e., a response to the treatment). Even as he seemed to acknowledge this, it caused him distress that the relaxed and peaceful setting of the hospice could not alleviate. To make things even more complicated, we were never quite sure that Mr. G's daughter was faithfully translating our words to her father. We worried she was translating with some level of “sugarcoating” to preserve hope in this more and more unlikely response to the new drug.
After approximately three weeks, Mr. G's physical condition worsened. His pain became more intense and his pleural effusion increased dramatically. Given these turn of events, he never got the fourth, hoped-for, dose of ipilimumab. Neither Mr. G nor his daughter argued against this; it appeared that he had finally accepted that treatment was not working and it was time the disease simply followed its course. After a few more days Mr. G died in the hospice.
As oncologists, we struggle with many issues for patients with advanced disease in which immunotherapies may provide durable benefit. As in this case, issues include general management of patients in whom a response may be delayed, or may not arrive at all; and whether it is reasonable for the hospice team to manage the complex scenario of immune-related adverse events.
Our approach to this patient and his daughter reflects our “solo model of care,” where the oncologists follow their own patients throughout the entire disease trajectory, requiring competence in both oncology and palliative care. However, we acknowledge that this model of care is neither universally applicable or, in some instances, even practical.
We believe that the introduction of novel immunotherapies make the decision to stop treatment more challenging than stopping chemotherapy. The possibility of a delayed response can foster unrealistic expectations, favoring hospital care and late hospice referral. Therapeutic options with favorable toxic profile are expanding, and deciding on the transition to hospice care is harder also for “palliative oncologists.”