Isaac Chan is a medical oncology fellow at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins.
“Dr. Chan, please, please keep me alive a little longer and God will surely bless you.”
I am watching a 68-year-old man fall apart. He has been through five different types of chemotherapies, yet his kidney cancer continues to grow and metastasize, spreading to different organs. He now sits hunched in his wheelchair. With his worsening diarrhea, and sores in his mouth, he no longer eats with pleasure. Sleeping a few hours without pain has become a luxury.
I have been talking to him about palliative care, how focusing on reducing symptoms instead of treating his cancer directly can provide him relief. I even share with him the results of studies showing he could potentially live longer with that strategy. But he wants to beat the cancer. He believes what will help him live longer is more chemotherapy — so that is what we discuss. This leaves me in an uncomfortable state: caught between my medical recommendation to pursue less aggressive care and my patient’s primal desire to rid his body of cancer.
Down the hall at our teaching hospital, another patient sits silently, diagnosed with gallbladder cancer that has metastasized into her lymph nodes, liver, lungs and bones. I go over the results of her most recent tests and watch her hand tremble as she jots down notes. She is only 34 years old, but after two rounds of chemotherapy, her youth is steadily leaving her. I have been speaking to her and her husband about palliative care since the diagnosis, but they admit they do not really hear these conversations. All they hear is the loud drumbeat of what the next chemotherapy will be. Struggling to balance the reality of the situation with providing benefit, I gently tell her that, perhaps, palliative care will give her the blessings of peace and time.
Aggressive treatments, such as more chemotherapy, are not going to cure these two patients. Therapy aimed at controlling their symptoms will help them live their remaining days more comfortably. Meanwhile, we still struggle with one of the primary challenges of modern medicine: end-of-life communication.
Many physicians encourage early palliative care for terminally ill patients, to make the process of dying less painful, more cost-effective and patient-focused. But if the patients are not ready, instead of feeling relief, they may experience this advice as abandonment. Without first considering how patients understand their own condition, doctors risk returning to a culture of paternalistic medicine, one where physicians make decisions for the patient in the belief that they know best. Disagreements about treatments between doctors and their patients near the end of life can be devastating. So communication is vital.
As a young oncologist, I confess I am not an expert in balancing aggressive treatment with preserving quality of life. But it is clear to me that end-of-life care is not checklist medicine. It is not just about statistics or studies. Achieving true shared decisions is an interactive process that takes time and engagement, leading to mutual trust. It is about continuously setting honest expectations for what is possible and making sure all parties truly understand what the consequences are likely to be. Sometimes what our patients need most is just more time: time to accept the terminal diagnosis and time to grieve and hopefully to find peace. Part of our guidance involves agreeing on the personalized therapies, be it “aggressive care” or more symptomatic control, that can deliver that meaningful extra month, hour or minute.
My first patient continued to plead that I not give up on him, and I continued treating him until one day he had bleeding in his head. He ended up in the intensive-care unit where he passed away. In the weeks prior, he had thanked me for the extra time he had to spend with family. To the young woman with metastatic gallbladder cancer, I promised I would remain with her and her husband throughout their horrible journey. At the end, her cancer was causing her lungs to quickly fill with fluid; in essence, she was drowning. I sat on her bed thinking of that promise while we talked and she quietly wept as her imminent fate began to sink in. I cannot be sure if she was afforded the blessings of peace or time as she died the next day.
These cases are not unique in medicine. The biggest lesson I have learned is that our role is to support our patients so that they can have the dignity to make these difficult choices and feel empowered to make their own paths, no matter how frightening the decision may be.