You drive down a busy expressway amidst thousands of other vehicles and a billboard jumps out at you. In the font of confidence, it reads, “The first step in fighting cancer should be a second opinion.”
The billboard informs you of the location of the nearest Cancer Treatment Center of America (CTCA), “only” about 130 miles from the billboard.
When I saw this billboard, my initial response was to recall a recent article about CTCA which challenged their dubious centerpiece claim: Patients with cancer who receive treatment there survive longer than those who don’t. The article pointed out significant selection bias in CTCA’s data. Could individual patients have outcomes comparable to any other cancer center? If the center uses best practices in oncology (including appropriate provision of palliative care), then I have no doubt that some patients have a good experience at the center. Even though, several patients or their relatives have asked me about the center, none of them have been evaluated or received treatment at CTCA. At least a few of these patients (or a family member) have gone as far as calling CTCA but haven’t gone any further.
Enter a salient point about my practice: I work at a safety net hospital where many patients either have Medicaid or no insurance. They will never receive care at CTCA for this reason. But they’ll still see the billboards and hear the ads on TV or radio. Patients in a safety net setting are more likely to present with advanced disease and a poor performance status. The risks of cancer directed therapy sometimes outweigh the benefits at the time of diagnosis. The likelihood of “early” palliative care referral may increase.
Patients and their families face a double whammy. You have a terminal cancer and cannot receive any cancer directed therapy. Without any good way of independently verifying the latter news, how could you not wonder if perhaps CTCA would be a better option? Even though my patients have access to experts from an academic National Cancer Institute center and a full interdisciplinary palliative care team, I cannot fault them for wondering.
I won’t debate CTCA’s right to not-so-subtly suggest that all cancer care in my city is substandard and once you receive the diagnosis, the only acceptable approach is to make a nauseating three-plus hour car trip to another city, far away from the family, community, and spiritual support which the patient may already have locally. At the same time, I reserve the right to be irritated. If a patient asks me about a second opinion, I have several excellent options locally, thank you. Ranting done, though. Onto the kernel of opportunity.
An anxious daughter tells you she saw this billboard. She asks if it might be an option for her father who has advanced lung cancer and is hospitalized for hypercalcemia and delirium. It’s time to find a chair for her and yourself if you haven’t already. She trusted you enough to ask you about it. You can win further trust and more. How? Turn it into an opportunity to educate, discuss and explore goals of care.
1.”No stone should be unturned”: Acknowledge the desire to look into all possible therapies which may benefit the patient.
2. Ask her what she’s found out about the center. What specifically appeals to her? Listen for information which provides further clues to how she views the goals of care. Resist the temptation to explain immediately why the approach wouldn’t work. Reflect out loud those outcomes which seem most important to her.
3. Ask her to review what she knows about her father’s condition and treatment approaches discussed previously by you or your colleagues. There will likely be questions about why certain cancer directed therapies aren’t appropriate for her father. Make sure to address these questions. Incorporate your recommendations for how to address the concerns raised in step 2.
4. Invite her to give your opinion on the center. By now, some patients or family might not even need your opinion, but many still will want it. Give your opinion- it’s ok. If you’re not sure what to make of some of the claims the daughter heard, acknowledge that. If you are confident that you or your colleagues adhere to best practices in oncology care, it’s also ok to say that. While treatment may vary some from center to center, people sometimes assume that there’s greater variation than actually exists. You don’t need to belabor the point, though. You’re not here to defend yourself, your colleagues, or your institution. You’re here to help a woman who is in normative anticipatory grief. She’s yearning, which CTCA capitalizes on in their advertisements. Of course, it’s normal for her to want her father to receive the best care possible.
5. If the desire for a second opinion remains, offer to help arrange one locally, if appropriate. If the patient can travel further, you may also mention other options if more appropriate. I am obviously notsuggesting there is no value in second opinions. Sometimes, the value comes from reassurance that the first provider is “on target” and occasionally, the patient will benefit from a different treatment approach.
6. If the patient or family is on the verge of making a trip for a second opinion, help them think through the logistics of travel.
7. Above all, ensure non-abandonment and address emotion. Even if the patient goes far, far away, you are still likely part of the patient’s care team. How might it be destructive for a patient or family to go to a second opinion and not be sure if the original providers will care for them when they come back?
Alex Smith recently commented on it at Geripal, rightfully pointing out the paucity of information about palliative care on CTCA’s graphically pleasing website. I single out CTCA here, but they are not alone in the creation of unhealthy skepticism about local care. I wrote about this topic a few years back. Be irritated, if you are. It’s justified, in my opinion. Just don’t take it out on your patients or their families when they bring up the possibility of a second opinion far, far away. See it as an opportunity to educate, strengthen relationships, and provide support.
Lyle Fettig is a palliative care physician who blogs at Pallimed.