It's Time to Have ‘The Talk’: Cost Communication and Patient-Centered Care

S. Yousuf Zafar, MD

James A. Tulsky, MD

Amy P. Abernethy, MD, PhD

One of us recently saw a young, insured patient with newly diagnosed rectal cancer. He completed 5 1/2 weeks of pre-operative treatment with the oral agent capecitabine and radiation without any physical complications. Unfortunately, after that course of treatment, he was diagnosed with metastatic cancer. As he began his first-line treatment with a standard chemotherapy regimen that included oxaliplatin, bevacizumab, and capecitabine, the patient remarked, “Doc, the capecitabine is too much for me.” His comment was surprising as he had previously tolerated the treatment without any physical complications. On further questioning, the patient revealed that his health insurance did not cover capecitabine, resulting in bills totaling thousands of dollars. When asked, “Why didn’t you say something sooner?” he shrugged, “What option do I have?”

Faced with a life-threatening illness, this patient’s options appeared limited. He was receiving the best possible chemotherapy, which would provide him a considerably better outcome than what patients with the same diagnosis could expect a decade or two ago. But medical progress comes at a cost. Cancer drugs entering the market today are orders of magnitude more expensive than they were 2 decades ago, and capecitabine is not the only example.[1] Further, third-party payer cost-sharing forces patients to shoulder an increasing proportion of overall costs. As a result, patients suffer financial distress from the treatments we prescribe: They spend their retirement savings, decline care due to expense, and even declare bankruptcy.[2,3] Doctors and patients agree, in theory, that cost should be discussed, but rarely do these discussions actually take place.[4] Oncologists discuss patients’ most intimate details, from spirituality to sexuality-why not cost?

Barriers to cost discussions fall into three categories: inaccessible cost data, ethical concerns, and insufficient training. First, lack of price transparency has been well documented,[5] with wide variations in healthcare prices even within the same city. Add to these differences the countless variations in insurance plans, and the accuracy of cost predictions dwindles even further.

Second, studies suggest that physicians are uncomfortable discussing costs with patients for fear that patients might believe they will receive lesser-quality care. Broaching the topic of costs at the bedside raises the specter of rationing. Many see the patient-physician relationship as a sacred space where discussions of money are unwelcome. Talking about finances seems to challenge the identity of the physician as compassionate caregiver, whose only responsibility is to provide the best possible care.

Third, despite years of training, physicians learn little about health policy, economics, or even drug pricing.[6] And even if they know something about what cancer drugs cost, they have little, if any, training in how to engage patients on the sensitive subject of treatment expense. This problem is analogous to our experience in palliative care, where more and better conversations are needed with patients about prognosis and goals of care. Yet, for years no such training existed, conversations did not happen, and too many patients did not receive much-needed end-of-life care.

Because of these barriers, few conversations about the financial aspects of care occur, and out-of-pocket costs continue to harm patients significantly. How can these barriers be overcome in order to promote true patient-centered care? First, regarding inaccessible cost data, financial calculators that incorporate insurance information are increasingly available, and efforts should be made to integrate them into clinical use. More importantly, physicians should advocate for greater price transparency on the part of health systems and payers. Until then, cost discussions between doctors and patients should not be impeded by the idea that the discussion is useless without specifics on prices and insurance plans. In many instances, exact details are not necessary to make a difference. Broad-based screening practices to ascertain financial risk and preferences, carried out across all patient populations, might have a meaningful impact.[7] In the case of our patient with rectal cancer, a single question at the start of treatment-“Do you have prescription drug coverage?”-could have avoided tremendous financial burden through use of an alternate drug or referral to financial counselors. Another approach might be to focus on patients who are prescribed oral agents or other particularly expensive anticancer therapies, ensuring that they have the means to pay for them.

Second, while we respect those who wish to safeguard the patient-physician relationship from discussion of financial concerns, we worry that ignoring costs perpetuates the problem. Doing so discourages patient engagement in informed decision making. In light of these considerations, discussing costs is completely in line with physicians’ identities as compassionate caregivers. Moreover, physicians may be ethically obliged to discuss costs as a part of treatment decision making, particularly if those treatments result in considerable financial harm paired with marginal benefit (as is the case with some cancer treatments).[8] Some patients would rather forgo months of additional survival for less financial burden for their family.

Finally, physicians should be trained in how to discuss with patients the sensitive topic of costs. In the current age, medical schools can ill afford to leave health economics off the syllabus, and educators are taking note. One innovative program at University of California, San Francisco promotes cost awareness among medicine residents via a case-based curriculum.[9] For practicing physicians, palliative care provides a fruitful training model. A National Cancer Institute–funded program, Oncotalk, successfully educated palliative medicine and oncology physicians-in-training on how to discuss transitions to palliative care.[10] Since cost affects a considerably larger patient base than end-of-life decision making, an Oncotalk-like program tailored to discussion of costs could target a broader swath of both generalist and specialist physicians. And oncologists need not shoulder the burden of a cost discussion alone. We can take examples from across medicine: for instance, patients awaiting solid-organ transplants are thoroughly assessed by a team of financial counselors and social workers.

When the young patient with rectal cancer explained that he could not afford capecitabine, he was switched to the intravenous formulation, fluorouracil, which was fully covered by his insurance. In this instance, he had an option for alternate treatment that was just as effective and would have been used from the start had the patient’s financial circumstances been assessed-which could have been done without any detailed knowledge of costs or insurance plan intricacies. Every day, patients like this man are suffering under unnecessary financial burden. This is not the first instance in which we have learned how to engage patients with a difficult topic; now, we must do the same for costs.

Financial Disclosure: Dr. Zafar has served as an unpaid consultant for Genentech, and his wife is employed by GlaxoSmithKline. Dr. Abernethy has received research funding (distributed to Duke University), including salary support, from Bristol-Myers Squibb, Celgene, DARA, Dendreon, GlaxoSmithKline, Helsinn, Kanglaite, and Pfizer; and she has pending industry-funded projects with Genentech and Insys. She has also consulted for or received honoraria from Bristol-Myers Squibb and ACORN Research, and she has corporate leadership responsibilities at athenahealth, Advoset, and Orange Leaf Associates LLC. Dr. Tulsky has no significant financial interest in or other relationship with the manufacturer of any product or provider of any service mentioned in this article.

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References:

1. Bach PB. Limits on Medicare’s ability to control rising spending on cancer drugs. N Engl J Med. 2009;360:626-33.

2. Zafar SY, Peppercorn JM, Schrag D, et al. The financial toxicity of cancer treatment: a pilot study assessing out-of-pocket expenses and the insured cancer patient’s experience. Oncologist. 2013;18:381-90.

3. Ramsey S, Blough D, Kirchhoff A, et al. Washington State cancer patients found to be at greater risk for bankruptcy than people without a cancer diagnosis. Health Affairs. 2013;32:1143-52.

4. Alexander GC, Casalino LP, Meltzer DO. Patient-physician communication about out-of-pocket costs. JAMA. 2003;290:953-8.

5. Sinaiko AD, Rosenthal MB. Increased price transparency in health care-challenges and potential effects. N Engl J Med. 2011;364:891-4.

6. Patel MS, Davis MM, Lypson ML. Advancing medical education by teaching health policy. N Engl J Med. 2011;364:695-7.

7. Moriates C, Shah NT, Arora VM. First, do no (financial) harm. JAMA. 2013;310:577-8.

8. Alexander GC, Hall MA, Lantos JD. Rethinking professional ethics in the cost-sharing era. Am J Bioeth. 2006;6:W17-22.

9. Moriates C, Soni K, Lai A, Ranji S. The value in the evidence: teaching residents to “choose wisely.” JAMA Intern Med. 2013;173:308-10.

10. Oncotalk: improving oncologists’ communication skills. Available from: http://depts.washington.edu/oncotalk/. Accessed May 15, 2014.