In Part 1 of this 2-part column series on shared decision making, we discuss the need for health care teams to create a safe and inviting environment for patients to talk about financial concerns and questions related to their treatment. Concerns discussed should subsequently be incorporated into care plans. Enhanced shared decision-making conversations will likely result in a stronger patient-physician relationship and care outcomes more closely aligned with patient goals.
In a recent market survey conducted by the Patient Advocate Foundation (PAF) regarding cost of care conversations, 80% of low-income patients agreed that the cost they are going to pay out-of-pocket for their care is important when it comes to making treatment decisions (with 62% strongly agreeing). However, only 38% of low-income patients who had received treatment in the past 12 months reported that their health care provider had explained the costs associated with their treatment options.
Health care providers can cite plenty of reasons why they do not talk about the costs of care with their patients. They don’t have time. They don’t know the specific costs or have ready access to such information, and so don’t have good answers to their patient’s question. They worry that it might make some patients uncomfortable or interfere with the therapeutic relationship. Some may even see such conversations as not part of their job.
While these are not unreasonable concerns and constraints, talking about the costs of care has become increasingly essential to making treatment decisions that align with patient values and goals. This is by no means a completely new phenomenon. In fact, patients have always experienced financial toxicity when faced with serious illness or disability, but the problems were often far less visible and prevalent.
In the not-too-distant past, most patients on Medicare or covered through their employer were mostly shielded from the majority of direct costs for their care though still subject to the financial impact on their lives, such as lost jobs, childcare costs, or transportation issues. Underinsured or uninsured people, particularly those with limited income, faced a range of poor options. They could try to fight through the bureaucratic thicket to become eligible for Medicaid; they could decide not to have treatments or procedures or reduce expenses in other areas of their lives (including necessities such as buying groceries and paying utility bills); or they could choose to incur significant debt. One of my colleagues, for example, was only 35 years old when she was diagnosed with non-Hodgkin lymphoma (this was 25 years ago). She was working in the art field without good insurance, and it ended up taking her 6 years to pay off her medical expenses.
Now, such tradeoffs and burdens are commonplace, even for those who are relatively well insured. In the last decade, the price of health insurance premiums has increased by 55%, according to a 2017 Kaiser Family Foundation report. That rate of increase is 4 times that of inflation.1 These increases reflect the ever-rising cost of health care services and treatments. Even people with excellent insurance find themselves dealing with higher out-of-pocket expenses, copays, and deductibles and more cost-sharing on the costs of their insurance. Over 60% of workers enrolled in an employee plan now have a deductible over $1000, and the average deductible for marketplace plans exceeds $3000.2 Over 40% of patients report that it is somewhat or very difficult to afford health services.3 Patients have gradually awakened to the fact that the costs of care can vary significantly depending on where you receive that care and what specific services you receive, and they are beginning to expect transparency about those costs before treatment—not after the bill arrives.
These concerns apply across the board in health care but are more pronounced in clinical areas in which new treatments have brought significant progress at often a significant cost to patients. Advanced diagnostics and targeted drug therapies are allowing many people with a range of cancers to live for years with their disease or, in some circumstances, to be cured. The costs of the drugs, especially “specialty drugs” used to treat complex conditions, can be enormous. The average annual retail cost of prescription drug therapy for a single specialty drug was $52,486 in 2015, according to an AARP study.4 The government estimates the average cost of a 3-day hospital stay to be roughly $30,000.5 Patients often pay 20% to 40% of these costs out of their own pocket as “coinsurance.”
In the same PAF survey, 50% of respondents who had surgery in the past 12 months and 53% who had radiation therapy in the past 12 months reported that the costs were unaffordable. Even less affordable for patients were the costs associated with diagnosis, which 63% of patients reported as unaffordable compared with 64% of patients who characterized their drug therapy as such. Patients who live longer with serious diseases that have become, in many respects, chronic conditions also have to deal with the broad spectrum of financial toxicity, including managing the symptoms of their diseases, side effects of their treatment, psychologic and emotional effects, and disruptions to their lives. This reality necessitates a whole new level of ongoing, open, and action-oriented conversations between patients and the health care team about how to deal with these costs and make decisions about their care.
Physicians and their health care teams can perceive this need as both a challenge and an opportunity. Creating safe spaces for patients to talk about their financial concerns and incorporating those concerns into shared decision-making and care planning can strengthen the physician-patient relationship and address the growing demand from patients for more information.
Our next column (Part Two: Finding Solutions) discusses approaches to making these conversations a reality and the role clinical pathways can play.
References
1 Kirzinger A, Hamel L, DiJulio B, Muñana C, Brodie M. Kaiser Health Tracking Poll – October 2017: Experiences of the Non-Group Marketplace Enrollees. Henry J Kaiser Family Foundation. https://www.kff.org/health-reform/poll-finding/kaiser-health-tracking-poll-october-2017-experiences-of-the-non-group-marketplace-enrollees/. Published October 18, 2017. Accessed July 20, 2018.
2. Rae M, Levitt L, Claxton G, Cox C, Long M, Damico A. Patient Cost-Sharing in Marketplace Plans, 2016. Henry J Kaiser Family Foundation. https://www.kff.org/health-costs/issue-brief/patient-cost-sharing-in-marketplace-plans-2016/. Published November 13, 2015. Accessed July 20, 2018.
3. DiJulio B, Firth J, Brodie M. Kaiser Health Tracking Poll: October 2015. Henry J Kaiser Family Foundation. https://www.kff.org/health-costs/poll-finding/kaiser-health-tracking-poll-october-2015/. Published October 28, 2015. Accessed July 20, 2018.
4. Schondelmeyer SW, Purvis L. Trends in Retail Prices of Specialty Prescription Drugs Widely Used by Older Americans, 2006 to 2015. AARP Public Policy Institute. https://www.aarp.org/content/dam/aarp/ppi/2017/11/full-report-trends-in-retail-prices-of-specialty-prescription-drugs-widely-used-by-older-americans.pdf. Published September 2017. Accessed July 20, 2018.
5. Centers for Medicare and Medicaid Services. Why health insurance is important, protection from high medical costs. Healthcare.gov website. https://www.healthcare.gov/why-coverage-is-important/protection-from-high-medical-costs/. Accessed July 20, 2018.
