I have worn many hats professionally. The most uncomfortable one is “doctor friend.” At best, it’s a request for a recommendation for a gynecologist or for advice on which antihistamine works best for allergies. But other times I have found myself in the role of interpreter between a friend and their physician, navigating serious health problems.
These situations come with a challenging set of professional and personal boundaries in which I play the role of friend and subject matter expert, but the ultimate responsibility remains with the treating physician.
My friend Zach was diagnosed in his mid-30s with adenoid cystic carcinoma, a rare cancer of the head and neck. He didn’t tell me much about it and I didn’t delve too deeply until I realized Zach wasn’t making the kind of progress that matched his upbeat outlook. Then he landed in the emergency department with breathing difficulties, which were due to malignant pleural effusions — fluid in his lungs from cancer progression. Toeing the doctor-friend line at this point felt difficult, but my love for my friend motivated me to take on the role of interlocuter with him and his medical team.
On a three-way call with the on-call oncologist, I planted the question, “Is his current round of chemotherapy palliative or curative?” A pregnant pause, then came the physician’s reproach to Zach: “Your oncologist should have told you that a long time ago.”
That’s when I realized that Zach and his husband, parents, and siblings still hoped for a cure. That hope had sustained them as Zach endured hours in chemotherapy infusion chairs, through rounds of radiation, and during several hospitalizations. Zach’s doctors knew he had terminal cancer. He and his loved ones, somehow, did not.
If someone like Zach, who was so engaged with his care, could have such a profound misunderstanding of the course of his disease, what about more disenfranchised and marginalized patients?
Not long after that conversation, Zach died with his husband by his bedside. I hate that they didn’t know earlier that death was fast approaching, and I believe that his doctors shoulder the blame by not telling him in a way they could understand.
Zach’s experience is all too common. In a report in JAMA Network Open this year, among people age 70 and older being treated for incurable cancer, 41% believed they had more than five years to live — but only 10% of their oncologists agreed with their estimates. And nearly 60% of patients believed their terminal cancer could go away and never return.
I find that heartbreaking.
I’m an internist who, for the last two years, has explored how to make sure that people with cancer receive high-quality care that aligns their treatment with their goals and values. The deeper I go, the more my optimism fades that our health system is set up to elicit patients’ wishes and disclose the facts that allow them to share in decision-making.
Unrealistic expectations fueled by direct-to-consumer pharmaceutical advertising depicting happy cancer survivors and the pharma industry’s influence on oncologists hang over patient-doctor conversations. For every truly game-changing new drug or treatment indication, dozens of others offer just days or weeks of additional survival — if any — but at additional costs of hundreds of thousands of dollars and false hope.
The Food and Drug Administration’s accelerated approval track, which was meant to help people with serious illnesses receive beneficial therapies sooner than the traditional review process, may cost more than it helps. Medicare spent an estimated $569 million between 2017 and 2019 on cancer drug indications that didn’t improve patients’ overall survival. Oncology, sadly, is a cash cow. From 2010 to 2019, revenue generated from cancer drugs increased 96% for the 10 largest pharma companies, and in 2019, cancer drugs made up 27% of their total revenue.
Overconfidence in drugs is one reason doctors don’t talk more about services that do improve both the quality and quantity of life with their patients with advanced and terminal cancer, such as early palliative care. A 2021 survey of oncologists showed that just 17% follow guidelines that recommend they refer a patient diagnosed with metastatic disease to palliative care — and these same oncologists acknowledged that early introduction of palliative care leads to better patient outcomes. The reasons for this gap include perceived patient resistance, lack of time, and insufficient tools to educate patients.
Those defenses can’t be acceptable. Physicians should be responsible for overcoming health literacy barriers, time constraints, and mistrust to ensure that their patients understand all available options. Anything outside of that is not informed consent. Before patients agree to chemotherapy riddled with unpleasant or harmful side effects, they should have a complete picture of what it will gain them in terms of months of life, quality of life, and symptom burden. For themselves, physicians are overwhelmingly likely to choose non-aggressive care at the end of their lives and up to one-third of oncologists wouldn’t accept the chemotherapy they prescribe. This suggests a lot goes unsaid when physicians break bad news to patients abut terminal cancer and other fatal diseases and offer next steps.
Most of my clinical practice has been caring for people without insurance or who are covered by Medicaid. Many of them have encountered structural violence and endured generational trauma, some of it from the health system. Some of the guiding principles of trauma-informed care include safety, trustworthiness, choice, collaboration, and empowerment. I’ve tried my best to share knowledge and the power that comes with it.
So I Google images of the gastroesophageal junction and turn my computer screen to explain acid reflux. I mime how a heart pumps blood for patients newly diagnosed with heart failure. For those who are terminally ill, I explain that, based on people in similar situations, they may have just weeks to months left. I try never to keep information from a patient or a caregiver, even if it’s indeterminate or uncertain — or hard.
There is a way to be transparent and open without being insensitive or defeatist, even when dealing with cancer. For Zach and so many others, my physician colleagues and I must practice our communication skills with the same rigor that we hone our procedural ones.
S. Monica Soni is an internist and associate chief medical officer at New Century Health, a specialty care management company focused on cardiology and oncology care.