Moral Side of Medicine
ment, both short and long term. We try to address the mental and emotional toll of a cancer diagnosis. We guide patients through what can be the most difficult part of life. We help with end-of-life decisions. And still, this conversation always is visceral, felt deep in the pit of my stomach.
Physicians are held to a standard of ethical principles: beneficence, non-maleficence, autonomy and justice. Beneficence is the duty to act in the best interest of the patient, to present her multiple options to improve outcome over declining treatment. Non-maleficence means to do no harm. This includes refraining from unproven treatments or those that are unlikely to provide benefit. Autonomy: we understand that the patient has rights of self-determination, of making informed choices. But how informed can her choices be when facing this wave of misinformation, erosion of trust and abandonment of these ethical principles? Justice refers to equity and access to treatment. But where is the justice for those who lead our patients away from life-saving treatments with false promises?
I asked her what her goals were. She wanted to live and be there for her child. And she wanted to do this naturally. We discussed the importance of nutrition and exercise, but these alone will not cure her cancer. I explained the natural course of breast cancer. I explained treatment options, that there is more than one way and that she has choices. Surgery first, modified chemotherapy regimens, no chemotherapy, targeted treatment and endocrine therapy. I explained that without treatment, cancer can metastasize, and would no longer be curable. Her life could be cut short. I told her that whatever she decided, I can still be her doctor. I can evaluate the status of the cancer and help to treat any symptoms that arise. If she changes her mind, we are here.
My words are measured equally against the stories on message boards, testimonials on alternative clinic websites and the strong and compelling message of hope of cures without consequences. Earlier in my career, I felt a sense of failure when someone chose to go down this path. That somehow, I couldn’ t find the right words to change their mind and try to save a life. Now, I focus on trying to keep the door open. I may not understand why someone makes this choice, but I do understand that with a cancer diagnosis can come a feeling of loss of control, and this feels like a way to take back control over health. I do understand that some of the medical mistrust has been earned by a broken system and often by negative personal experiences, by getting the feeling that no one really cared.
I didn’ t see her again for almost a year. I later learned that she paid for labs checking vitamins, minerals, hormones and tumor markers. She received infusion of IV Vit C. She took ivermectin. She had bottles of supplements and herbal products with proprietary formulas. Her breast started shrinking. She got good news at her appointments – things were getting better. She wasn’ t told that as a tumor grows in the breast, it can cause retraction, pulling the breast tissue flat against the chest wall. A CT scan picked up on some new lung nodules, and she was told that this was common, possibly infection or inflammation, and nothing to be concerned about; it could be followed in six months.
Then, she developed a pain in her right side, at first a nagging pain that would come and go, but one day woke her up from sleep. By this time, the breast mass was red and painful. She went to the ER and a CT scan showed multiple large liver metastases and enlarging pulmonary nodules. This time, she was open to discussing treatment. I detailed several options. We discussed her goals, which had changed now, and how each treatment might impact her. The treatment was now palliative, not curative, and the new goal was to try to preserve quality of life and extend life.
There is an aspect of this story that we often brush aside. It is the deep sadness and distress felt by the medical professionals in witnessing the devastation of misinformation on an individual. We can discuss the evidence, make treatment recommendations and explain the potential consequences of decisions. We can listen to fears, acknowledge the desire for control and attempt to preserve trust. However, it is not our decision to make. Respecting patient autonomy doesn’ t mean that we stop caring. Distress doesn’ t disappear because we honored their choice.
We were trained to treat cancer, to palliate symptoms and support patients and families with end-of-life care. We were never prepared to watch misinformation steal lives and the grief of witnessing the very real consequences for our patients.
* Patient case is fictional.
Dr. Agrawal is a medical oncologist specializing in breast cancer at Norton Cancer Institute, in Louisville.