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J Oncol Pract. 2010 July; 6(4): 188–192.
Published online 2010 June 22. doi:  10.1200/JOP.777002
PMCID: PMC2900868

Understanding Patient Perspectives on Communication About the Cost of Cancer Care: A Review of the Literature

Abstract

Purpose:

Patient-physician communication about cost when making treatment decisions has been promoted as a potential solution to the rising cost of oncologic care and suggested as an important component of high-quality oncologic care. However, little is known regarding the perspectives of patients with cancer on such discussions with their physicians.

Methods:

A literature review was performed in July 2009, with search terms including but not limited to patient-physician communication, cost of cancer care, and cost communication.

Results:

The cost of cancer care is high and seems to affect decisions that many patients make about the treatment they receive. Yet there is scant oncology literature on patient-physician cost communication, with the only formal study examining oncologist perspectives. Extrapolation from the general medicine literature may not be appropriate for this unique population of patients, and there are some data to suggest that patients with cancer may prefer not to discuss finances with their oncologists. Practical guidelines and tools for discussions of cost with patients with cancer are also limited.

Conclusion:

To my knowledge, patient preferences surrounding discussion of cost of cancer care have gone largely unstudied and are thus unknown. If the goal is to provide high-quality care while controlling rising health care costs, more research is needed to better understand patient perspectives on communication surrounding the cost of oncologic care, particularly given the significant impact such discussions may have on cancer outcomes, cost, and overall patient satisfaction.

Introduction

With the rapidly growing number of technologic and research advancements in the field of oncology, the cost of cancer care has risen at a pace that places a huge financial burden not only on health care delivery systems and society as a whole but also on individual patients. Recent publications in the oncology literature have suggested that one approach to both reining in the cost of care and minimizing patients' financial burden is to promote discussion between patients and their oncologists about the cost of chemotherapy and use these discussions to assist in selection of care.15 Scant pilot data on oncologist perspectives on this approach exist; however, there are even fewer data regarding patient perspectives. In light of this, two specific questions arise:

  • Do patients with cancer want to discuss finances and cost of care with their oncologists when deciding on cancer treatment?
  • If so, how would patients prefer to foster and frame such discussions?

Methods

The goal of this review was to explore answers to these questions using existing data and ideas from the current literature, drawn from the areas of general internal medicine, oncology, economics, and health outcomes. Ultimately, answers to these questions are crucial and must be definitively examined, because routine financial discussions between patients with cancer and their physicians when making treatment decisions have the potential to affect significantly not only the cost of oncologic care but also cancer outcomes and overall patient satisfaction.

Results

Current Cost of Cancer Care

Great progress has been made in the field of oncology in recent decades in the areas of early detection, prevention, and treatment, as reflected by declining cancer-specific mortality rates in the United States and Western Europe.1 However, with these advancements have come soaring health care costs. The United States spends approximately $2 trillion of its gross domestic product on health care, of which 5% is attributed solely to cancer care.1,6,7 Much of the cost results from the increasing use of technology and drug expenditures.1 A representative example of rapidly rising costs is reflected in the modern management of metastatic colon cancer, in which the price tag for standard regimens has risen over the last decade from a few hundred dollars to more than $30,000 per year.3 The added costs of commonly used supportive medications, such as bisphosphonates ($1,700 per dose) and marrow growth factors ($2,700 per dose) as well as routine imaging such as computed tomography scans ($2,500 per set) and positron emission tomography scans ($3,200 per scan) can quickly raise the cost to more than $100,000 per year per patient.3 Not surprisingly, it is anticipated that the cost of cancer care will continue to rise and ultimately become unsustainable.1,3

The cost of cancer care also weighs heavily on individual patients and their families, both in direct and indirect expenses. In fact, cancer was reported as the highest-cost diagnosis among those claiming bankruptcy for medical reasons.1,8 Although health insurance helps to defray direct costs, expenses can still be staggering; copayments alone can result in major out-of-pocket expenditures. For example, the copay for a common regimen such as carboplatin, paclitaxel, and bevacizumab for advanced non–small-cell lung cancer can be as much as 20% of $17,000 per month.3 Arozullah et al9 reported a similar example among a sample of 156 women receiving treatment for breast cancer; the average cancer-related out-of-pocket cost was $1,455 per month despite the fact that all of these women were insured. Another recent national survey of patients with cancer and their family members showed that among those who had insurance, 33% of families reported difficulty paying their cancer bills, and 25% of people reported depleting all or nearly all of their savings in dealing with cancer.10 Costs are particularly difficult for patients and families of lower socioeconomic status. Langa et al11 showed that out-of-pocket expenses consumed approximately 27% of the annual income of low-income individuals. Although much of the out-of-pocket cost can be attributed to direct medical expenses, indirect costs for patients are significant as well. These may include lost wages or employment for patients and/or their caregivers, transportation costs, and child care. Virtually all indirect costs are the responsibility of the patient and come as a “harsh reality” for many.2

How Is Cost Currently Affecting Decision Making in Oncology?

Decision making in oncology is complex, even without taking cost into consideration. Patients are confronted with the possibility of death and are choosing among treatments that carry large potential for adverse effects with no guarantee of response. With a mix of fear and hope, patients strive to make decisions that will optimize their chances of success while carefully considering the medical benefits and risks.2

However, the argument has been made that patients are not making completely informed decisions if they remain unaware of potential associated costs of the care they have chosen to receive.4,12 Yet finances are rarely formally addressed during decision making about cancer care.2 A recent study by Schrag et al12 showed that only 42% of oncologists routinely discussed cost with their patients, 32% sometimes did, and 26% rarely or never did. Oncologists cited several barriers to discussion of cost, including physician discomfort, lack of solutions, lack of knowledge, and uncertainty about whether the topic would be negatively perceived by the patient. Many oncologists feel that such discussions are intrusive and inconsistent with the “wish to provide treatment of greatest benefit, without regard for cost.”1,13

Although finances do not usually play a formal role in discussions between patients and providers, growing evidence suggests that cost of care does ultimately play into patient decision making and cancer outcomes. For example, several studies from the general medicine literature have shown that patients are less likely to adhere to prescribed treatment as out-of-pocket expenses rise.1,1416 Prescribed treatment itself may be altered as well; McFarlane et al3 cite the occurrence of patients with postmenopausal breast cancer switching from a more effective but more expensive drug class (aromatase inhibitors, $270 per month) to a less effective but cheaper medication (tamoxifen, $10 per month). Other studies have shown that lack of insurance is associated with worse cancer-related outcomes, including lower rates of screening, later stage at diagnosis, and poorer average survival.1,17 Among people who were ever uninsured, 27% reported that they or their family members had delayed or opted not to obtain cancer care because of cost.10 The impact of cost on patient decisions to receive care is often more pronounced for those treatments that do not directly affect cancer; mental health services, palliative care, and pain medications are sometimes deemed unnecessary by patients, when in fact the true concern lies with the burden of additional costs to themselves or their families.2

Do Patients Want to Discuss Cost With Their Oncologists?

Clearly, the cost of cancer care is high and seems to affect the decisions that many patients make about the treatment they receive. Does it not follow, then, that finances should be part of the formal discussion and decision-making process when a patient meets with his or her oncologist? Can we not assume that patients will derive better outcomes and greater satisfaction with their care if their physicians introduce cost into the decision equation? In fact, ASCO recently published a guidance statement explaining that “discussion of cost is an important component of high-quality care.”1 However, there exists no body of literature speaking to the issue of patient perspectives on communication about cost of care when specifically applied to oncology. One cannot make assumptions about quality of care without first understanding the perspective of the patient.

What little is known about patient-physician communication about cost of care stems largely from the general medicine literature. In 2003, Alexander et al18 surveyed both internists and their outpatients in 31 US academic and community general internal medicine practices and found that although 63% of patients reported a desire to talk with their physicians about out-of-pocket costs, only 15% reported ever having discussed these costs. Interestingly, the same study showed that 79% of physicians believed that patients in general wanted to discuss these costs, yet only 35% reported ever having had such discussions. Furthermore, only a small minority of patients (16%) felt their physicians knew the magnitude of their out-of-pocket expenses. Barriers to cost discussions that have been identified in the internal medicine setting are numerous. From the patient perspective, one of the most common barriers is discomfort in raising the issue; patients are unsure whether personal finances are appropriate to discuss or are embarrassed about discussing them with their physicians.19 Another significant patient barrier is concern over how considerations of cost might compromise quality of care; some patients fear that they may receive a less effective treatment substitution.19 Other barriers include a sense that physicians have insufficient time to discuss finances and lack knowledge of and/or solutions to patients' financial difficulties.19

Although one can imagine that patients with cancer share many of the same desires and concerns of general internal medicine patients, we cannot simply extrapolate from the internal medicine literature. The proportion and characteristics of patients with cancer who want to discuss cost of care with their oncologists has gone unstudied and is therefore unknown. Moreover, the simple fact of being diagnosed with a potentially fatal disease makes this population unique. Patients with cancer may make decisions and judgments that differ from those of other patients; in fact, multiple studies have shown that patients with cancer consistently assign greater value to high-cost treatments than do healthy individuals.1,20,21 Patients may feel compelled to fight a life-threatening disease at any cost, resulting in subordination of financial concerns to medical ones.1 Furthermore, to make a decision about the value of a cancer treatment in relation to its cost, a patient must fully understand both his or her prognosis and the expected benefit of the treatment. This can be particularly difficult for both patients and physicians to discuss, particularly in a palliative setting where cure is not attainable.

The issue of prognosis and expected benefit of therapy may indeed pose one of the biggest barriers to open discussion of the cost of cancer care. For example, multiple studies have shown that many patients are unaware of their true prognoses. One study demonstrated that one third of patients with advanced lung cancer thought they were receiving chemotherapy with curative intent.22,23 Another study of patients with lung cancer found that patients often gradually learn of poor prognosis from their own physical deterioration as well as from the experiences of fellow patients in the waiting room rather than from their physicians. It was concluded that “physicians did not always want to pronounce a ‘death sentence’ and patients did not always want to hear it.”22,24 Elkin et al25 demonstrated this in a study of 73 elderly patients with advanced colon cancer, of whom only 44% wanted information on prognosis when making treatment decisions. An additional barrier in discussing prognosis with patients may be that the concepts and terminology that traditionally accompany such discussions are complex and may be difficult for patients to understand. Such examples might include complete versus partial response rates, medians versus means, and overall versus disease-free survival. Thus, discussion of cost of care may prove difficult when many patients remain unaware of, are unwilling to discuss, or do not fully understand their true prognoses.

A report by Lamont et al26 suggests that patients with cancer may actually prefer not to discuss sensitive topics with their oncologists. They studied 111 patients with cancer on an oncology inpatient service to determine the frequency of advance care planning. Of these patients, only 9% (10 of 111) reported having discussed advance directives with their oncologists. Of the remaining 101 patients, only 23% desired to discuss the issue with their oncologists. Yet the authors found that 58% of patients favored discussing the issue with the anonymous admitting physician. These results suggest that patients with cancer are reluctant to discuss certain issues with their oncologists that they believe may have implications on aggressiveness of care. Finances may be a similarly sensitive issue for oncology patients, particularly in the face of life-threatening illness. Patients may prefer not to discuss cost, and those who do may instead prefer to discuss the issue with an anonymous person who is not directly involved in making treatment decisions.3 The answers to these questions are unknown; potential obstacles to discussion of cost of cancer care as well as potential benefits are summarized in Table 1.

Table 1.
Potential Benefits and Barriers in Patient-Oncologist Discussion of Cost of Cancer Care

Potential Approaches to Patient-Physician Communication Regarding Cost of Cancer Care

Regardless of patient preferences, the fact remains that cancer costs are rising, and there is increasing pressure on oncologists to raise the issue with their patients. It has even been suggested that “the job of discussing the issues will trickle down to the oncologists and their business offices, whether [they] like it or not.”3 Thus, oncologists and patients would be well-served in understanding how best to foster and frame such discussions. Unfortunately, evidence-based literature on how to effectively discuss cost of care with oncology patients and implement this information into decision making is scant. One approach that has been suggested is to facilitate patient initiation of discussion of cost, most notably in the form of prompt lists. Prompt lists are short questionnaires given to patients while they wait to be seen before their oncology visits. They include items about which patients may want to ask their physicians, such as stage, prognosis, and treatment goals. Prompt lists have been studied in oncologic settings and shown to be useful with regard to patient initiation of discussion of important issues. However, finances have not been included as a focus of these studies.3,27

Decision aids have also proven to be helpful to oncology patients. These are tools that are meant to assist in the decision-making process by providing information on treatment options, benefits and risks, potential outcomes, and guidelines to clarify personal values. Some decision aids also include information on the condition and guidance in the steps of decision making. More than 20 oncology decision aids have been studied formally in controlled trials, yet none has focused on cost of care.28

One area of research that may prove applicable in developing a patient-based approach to discussing finances is the concept of consumer-based willingness to pay (WTP). As applied to oncology, this economic term refers to the maximum amount a person would be willing to pay, either directly or indirectly, for a given treatment. Although several methods can be used to determine consumer WTP, the basic approach is one in which a patient facing a therapeutic decision is presented with the risks and benefits of one treatment relative to another and asked which he or she would prefer. Once the preference is selected, the patient is asked to identify the maximum amount he or she would pay out of pocket to receive the preferred treatment. Although typically applied to formal cost-benefit analyses, the concept of WTP may have practical application in the clinical setting as well.29 In fact, a number of studies have demonstrated successful use of WTP to measure treatment preferences and economic value among patients with cancer; nevertheless, many such studies use surrogates for actual patients with cancer, and results are typically interpreted at a societal level rather than at the level of the individual.2931 To my knowledge, it follows, then, that no specific decision aid is currently available using a WTP-based approach.

An alternative approach to broaching the issue of finances would be for oncologists to raise the issue directly with patients. Some have suggested that a simple screening question during a patient visit—such as “Are you having financial worries about your treatment?”—seems enough to foster a discussion.3 McFarlane et al3 published a more formal approach, the SPIKE$ protocol, in which oncologists frame the discussion of finances around five core principles: setting and listening skills, patient perception, information, knowledge in giving facts, exploring emotions and options, and strategy and summary. Though promising, this tool has not been formally studied in the oncology setting.

A final approach may be simply to provide patients with ready access to information regarding cost of cancer care, which they can use at their own discretion. Recently, ASCO published a patient-oriented information booklet entitled “Managing the Cost of Cancer Care,” available both in print and online at Cancer.net.32 This booklet addresses several key issues, including anticipated expenses, available financial resources, health insurance options, and suggested questions to ask care providers. This resource may prove to be a useful option for both patients with cancer and oncologists.

Regardless of the approach, several practical considerations must be anticipated by oncologists before raising the issue of finances with patients. Not only must physicians be knowledgeable about the efficacy of and specific costs associated with various treatments, but they must also be prepared to discuss alternative strategies if patients are unable to afford suggested treatments. The physician should have a concrete plan and resources to offer to a patient in need of financial assistance once the issue has surfaced (Table 2).

Table 2.
Practical Considerations Before Discussion of Cost of Cancer Care

Discussion

Patient-physician communication about cost during treatment decision making has been promoted as a potential solution to the rising cost of oncologic care. Although this may ultimately be true, little is known about the preferences of patients with cancer regarding discussion of finances with their oncologists and the impact such discussions may have on cancer outcomes, cost, and overall patient satisfaction. Given the complexities a cancer diagnosis imparts on a patient, it may be misleading to simply extrapolate from the general medicine literature on this issue. The oncology literature on patient-physician cost communication is scant, and the only formal study comes from the perspective of oncologists. Practical guidelines and tools for discussion of cost with patients with cancer are also limited. In short, patient preferences surrounding discussion of cost of cancer care when making treatment decisions have gone largely unstudied and are thus unknown. The assumption, then, that raising the issue of finances with oncology patients equates to high-quality care is unsubstantiated. Nevertheless, the question is a crucial one. If the ultimate goal is to provide high-quality care while controlling rising costs, more research is needed to better understand patient perspectives on communication surrounding the cost of oncologic care (Table 3).

Table 3.
Essential Elements of Future Research on Patient-Physician Communication on Cost of Cancer Care

Acknowledgment

I thank Drs Stephen Cannistra, Andrea Bullock, Lowell Schnipper, Marcia Testa, and Donald Simonson for their helpful comments during the preparation of this manuscript.

Author's Disclosures of Potential Conflicts of Interest

The author indicated no potential conflicts of interest.

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Articles from Journal of Oncology Practice are provided here courtesy of American Society of Clinical Oncology