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The Patient Perspective on Value

The Patient Perspective on Value


Diane Blum, MSW, FASCO

The rising cost of cancer care has led to extensive discussions, conferences, papers, and recommendations on how to define “value” for society, the health care professional, the innovator, and the insurer. Patients, often identified as a stakeholder in these discussions, are in fact the end user of all the interventions, and value to them is overarching and paramount.

There is growing recognition among all stakeholders that high costs do not necessarily equate with high value, and experts across multiple fields have worked to measure value to determine whether the treatment is “worth it” to all concerned. Each stakeholder participating in the cancer treatment process brings a different perspective to the question of value. Our goal as health care professionals is to determine the common ground that allows the health care system to provide quality care to all patients.

Definitions of Value

Researching the definition of value in cancer care is challenging and provides many alternatives. For example, philanthropist Warren Buffett is quoted as saying, “Price is what you pay; value is what you get.” All of us can respond to this, as we understand the effects of choice in our everyday lives. Michael Porter, PhD, of Harvard Business School, has led the way in defining value as outcomes related to cost. He and Elizabeth Teisberg, PhD, of the Dartmouth Center for Health Care Delivery Science, have written that in health care, the creation of value for the patient determines the rewards for all others.1 The Patient Protection and Affordable Care Act, passed by Congress in 2010, uses the word “value” more than 200 times in a health care context but never defines it. The National Institute for Health and Care Excellence in the United Kingdom says that value is based on scientific value judgment, which includes clinical and economic evaluation, and social value judgment, which includes efficiency and effectiveness.2

One definition of value that reflects patient concerns is from Scott Ramsey, MD, PhD, of Seattle Cancer Care Alliance. “An intervention in cancer care can be described as having value if patients, their families, physicians, and health insurers all agree that the benefits afforded by the intervention are sufficient to support the total sum of resources expended for its use,” he wrote.3 This definition broadens the components of value to include the wide range of issues (e.g., “the total sum of resources”) that are crucial to patients as they work to determine what is important to them during cancer treatment. These issues might include how effective the treatment will be, the potential side effects, and the overall cost. Other considerations could include how far a patient must travel for the specific therapy, the total duration of necessary time off from work, and whether the therapy is providing the patient with a sense of inclusion in the decision-making process for his or her treatment plan.

How ‘Value’ in Cancer Care Is Different

A cancer diagnosis presents different challenges in defining value than other illnesses. Cancer can be life threatening, and the most predictable immediate response is the fear of death from the disease. A sense of urgency prevails, often making less aggressive treatment or the clinical choice of watchful waiting difficult for patients and their families to tolerate. As a society, we have been conditioned to believe that “new” means “the best,” and we view more treatment as more effective than less treatment.

Initiatives such as the Choosing Wisely® Campaign from the American Board of Internal Medicine have focused on educating the public and health care professionals alike that a variety of interventions across diagnoses may in fact be counterproductive and costly; that more is not always better.4 However, when faced with a cancer diagnosis, a common response is to do whatever it takes and to mobilize all of the resources available. Cancer treatment creates side effects that are difficult, ongoing, and upsetting, all of which influence the concept of value. Patients and health care professionals must consider the quality-of-life changes that a treatment and its side effects would cause. In addition, there is often a reluctance to stop active treatment by patients and their caregivers, again, altering the perceived value of the treatment.

Factors Influencing Value

Value is almost always influenced by clinical benefit, side effects, and the toll it will take on the quality of life. Response to treatment, time to progression, survival, and toxicity are all established measures of value.

Value is a dynamic process for the patient as hopes and expectations change through the continuum of the illness. The public reads first-person accounts in blogs by patients and encounters perspectives of those patients who are in the public eye in the media that detail how a cancer diagnosis will not affect their lives; what is important to them is to get the cancer taken care of and move on. Each individual’s perspective of value is different. For example, when Sandra Day O’Connor, a retired United States Supreme Court Justice, was diagnosed with breast cancer, she focused on a cure, assured the public that her prognosis was for total recovery, and she “did not anticipate missing any oral arguments.”5 This view contrasts with that of Lisa Bonchek Adams, a private citizen who chronicles her treatment of metastatic breast cancer in a well-known blog (lisabadams.com/blog). There, she clearly states that her value is in “searching for joy”—watching her children at the beach and waiting for flowers to bloom in her yard. She describes the difficult choices she makes in treatment to improve her quality of life with her family.6

As shown by the contrast between Justice O’Connor and Lisa Adams, stage of disease is crucial in making decisions. When a patient is diagnosed with an early stage of cancer, patient advocate Robert Erwin describes “people aggressively seeking life” and focusing on survival.7 If the disease progresses and the treatment options narrow, for many patients, value lies in what can still be accomplished in their lives: the book they want to write, the trip they want to take, or the grandchildren about to be born. Ideally, health care professionals help patients make these transitions as the chance of clinical benefit from treatment diminishes. However, as character traits and personality style also influence determination of value, there are always individuals who want to do more in order to eliminate any feelings of regret of what was left undone. For these patients, value lies in “the valiant fight” when a positive clinical outcome is not possible.

Patient convenience—meaning how complicated a treatment will be in terms of administration, schedule, transportation, and demands on family—also influences value. Cultural values play a crucial role, as some cultural groups value interventions regardless of cost, whereas others may choose a more fatalistic path.

Value for the patient is also influenced by cost as more patients incur out-of-pocket expenses for their cancer treatments. This potential “financial toxicity” presents the clear question of “Is it worth it?” in the form of dollars and cents as the cost for a therapy is determined.8 There is increasing emphasis on providing clear cost information to patients to help them make decisions because sometimes there are lower-cost alternatives, an option that includes less treatment, or public or private resources that help offset costs.9 However, cost discussions are complex because decisions must be made at times of emotional stress in a situation, during which patients rarely feel that they have a full understanding of choices. Discussing money with a physician to make a treatment choice is not a conversation with which most people are familiar. A cancer diagnosis presents what Peter Ubel, MD, of Duke University, calls the “triple whammy of bad news, talking to a doctor about money, and making choices of money [versus] survival,” which is the ultimate question of what is it worth.10

Informed Shared Decision Making

Health care professionals are responsible for helping patients determine their personal definition of value. An initial assessment of patient preference for how information is provided and what role the patient wants to play in decision making sets the stage for discussions of diagnosis, prognosis, treatment options, and end-of-life care. Effective communication is necessary for a shared decision-making process, therefore, communication skills are critical for health care professionals. An extensive body of literature exists that documents how these skills can be learned by physicians and the oncology team, and it provides examples of specific language and statements.11 Verbal discussions can be structured and complemented using decision aids such as written pieces, videos, or electronic tools. Hundreds of decision aids used in cancer treatment discussions have been evaluated and found useful in clinical decision making.12-14 Discussions and decision aids should focus on what is crucial to the patient including personal preferences, the patient’s and family’s understanding of the disease and treatment options, cost considerations, potential side effects, logistics, and the emotional toll of treatment overall.

In a post on ASCO Connection's online blog, “Beliefs, Attitudes, and Evidence,” Don Dizon, MD, FACP, of Massachusetts General Hospital, related an interaction with a patient with breast cancer who is anxious about not having surveillance testing and “wants to do something.”

“I will listen to my patient, her values, and preferences,” Dr. Dizon wrote. “I will proceed with the surveillance testing that both she and I are comfortable with.”15 In the comments, Deanna Attai, MD, of the Center for Breast Cancer, responded that this is an example of shared decision making, and that patient education alone is not enough. “We need to take the time to review the data, but also to really figure out what the patient’s fears, concerns, and beliefs are,” Dr. Attai wrote. “Some misconceptions may be clarified, but in the end, the decision for or against a particular test or therapy should be a collaborative one.”15

This shared decision making recognizes the patient’s values and fears and incorporates medical evidence and relevant facts into the preference of the individual.

Making decisions about value are more straightforward when treatment will most likely lead to a good clinical outcome. They become increasingly difficult as the therapeutic options narrow and the choices become less evident. Honoring patient preference, understanding patient values, and assessing them over time through informed shared medical decision making, combined with a thorough grasp of the medical evidence, should help achieve our goal of a sustainable health care system that provides high-value cancer care to all patients. 

About the Author: Ms. Blum was the executive director of CancerCare for 25 years until 2009. She was CEO of the Lymphoma Research Foundation from 2009-2013. An ASCO member since 1992, she is the former editor in chief of Cancer.Net and is a current member of ASCO’s Cost of Cancer Care Task Force. Ms. Blum presented the patient perspective during yesterday’s Extended Education Session, “Can We Find Common Ground? Stakeholder Perspectives on Value in Cancer Care.”