Engagement, or deep care, requires time. It is labor. Emotional labor. In this era of time-impoverished physicians, you may even have grown accustomed to disengaged doctors. Why would you expect more from your oncologist?
But in my opinion, accepting a physician’s disengagement is dangerous. My advice to anyone being treated for cancer is to gently insist your oncologist move from competent to engaged. First you have to decipher where your doctor falls on the spectrum. Here is how the two compare.
A competent oncologist will download the standard treatment protocol for your cancer from the internet. Standard treatment protocols are generic algorithms organized by a tumor’s organ of origin. These protocols are written by national committees populated by university-based physicians, are based on research several years old, and are published by organizations with extensive ties to pharmaceutical companies. Unsurprisingly, these protocols completely ignore lifestyle measures backed by research.
A competent oncologist will adapt the standard protocol to your special needs, but only slightly. The competent oncologist will not bother to discuss known research on the ways diet, exercise, or stress affect your chances of surviving cancer. At best, he or she will hand you a brochure approved by dietary commissions ten to fifteen years behind the research.
The extra minutes required to deviate from the standard protocols will cause the competent oncologist to run late and be punished by insurance companies. Acknowledging that lifestyle factors influence health not only takes time, it can also draw sarcasm from colleagues threatened by nonconformity, or by their own poor lifestyle choices.
A engaged oncologist uses standard protocols only as a starting point. He or she performs advance testing of your tumor, with the goal of determining the best treatment for your cancer based on its biological and genetic idiosyncracies. These tests aren’t perfect, but they can often reveal surprising new information to guide treatment decisions.
The engaged oncologist performs functional blood tests and genetic testing. Based on the results, the engaged oncologist will personalize advice on diet, exercise, and supplement strategies that science shows may improve your chances of complete recovery. The engaged oncologist joins with supportive peers to responsibly expand his or her intellectual boundaries and explore frontiers such as diet and exercise.
If your cancer returns following “standard treatment,” the competent oncologist will choose a “second-line” treatment. Second-line treatments come from the standard protocol lists. The competent oncologist will tell you, truthfully, that second-line therapies typically don’t work as well as first-line therapies. That means the competent oncologist openly plans to give you a treatment likely to fail. The competent oncologist considers this being “responsibly realistic.”
Often cutting-edge treatments are available only at the largest urban cancer research centers. These treatments are completely unavailable to oncologists practicing in mid-sized cities or small towns. A competent oncologist may not discuss this fact with you. This is for one of two reasons: they do not know about the more advanced treatments and how to access them, or they may believe it is poor medicine to send a patient “away” for treatment.
If your cancer worsens despite treatment, the engaged oncologist will immediately contact world-class experts on your cancer for advice, and will scour long lists of research trials to find experimental treatments for your condition. The proactive oncologist will not only figure out which trials are most promising and least risky, he or she will help you choose the trial best for you, and will even help you enroll. If the engaged oncologist cannot treat you effectively in your community, he or she will not hesitate to refer you to a physician elsewhere who can.
If your cancer is not responding to second- or third-line treatment, a competent oncologist will discuss end-of-life issues with you. They will gently suggest you prepare yourself psychologically for the worst, and consider entering a hospice program. When you enter a hospice program, the competent oncologist will usually withdraw from your care, leaving you in the hands of the palliative care team.
The engaged oncologist will also be frank with you when things are not going well. But an engaged oncologist does not think of cancer treatment as all or nothing. If you enter a hospice program, an engaged oncologist will, upon your direction, continue some anticancer treatment, and will also continue an active search for effective and realistic treatments for you.
The bottom line is this:
Excellent physicians go beyond the standard of care. They ask themselves — always and endlessly — what am I missing? How is this patient different? And how do I, the physician, engage with that difference?
Every physician is, at heart, an excellent physician. Physicians are distracted by the demands of industrialized medicine, by the tight scheduling, the presence of “third-party payors” in the exam room, shoddily-constructed electronic health records.
If your oncologist is behaving badly, perhaps barreling past your questions with their hand on the doorknob, dismissing your concerns about lifestyle, stop speaking until your silence gathers their attention. Then, calmly, tell them you need their full engagement. Most physicians will respond to this by sitting down, looking you in the eye, and listening. If so, you are in good hands.
If they cannot do this, you will need to find a new oncologist.