Understanding Value in Cancer Care
Part 2 of a series exploring what value means to the stakeholders in healthcare. Part 1 in this series can be found here.
Cancer caused almost 600,000 deaths in the United States in 2019, second only to heart disease1 and more than the first year of the COVID-19 pandemic.2 Most of us have lost someone to this devastating disease. Cancer cuts lives short at all ages. The very word frightens. It ravages patients’ bodies and minds, causing pain and the loss of independence and dignity people often fear more than death itself. Cancer treatments cost an estimated $209 billion in 2020 and this figure will continue to rise with the advent of more expensive treatments.3
John Watkins, PharmD, MPH, BCPS
It’s hard to overstate the impact of a cancer diagnosis. The emotional effect on the patient feels more invasive than the tumor, an all-consuming tidal wave that abruptly pushes everything else aside and penetrates all aspects of existence. Normal routines give way to surgery, chemotherapy, scans, labs, and other procedures as patients encounter a bewildering array of services, often poorly coordinated. Value in oncology involves not just the patient but a whole ecosystem that includes family, friends, and work associates and patients may need help to keep that ecosystem functioning.
Newly diagnosed patients face a series of complex and difficult choices they are unprepared to make. Tradeoffs are made. Life goals are reprioritized. Few anticipate the full impact of chemotherapy side effects. People tend to overestimate chances of survival and may choose a path they later regret.4,5 Framing by providers affects choices. Patients need help to evaluate the choices and make good decisions.
The Oncologist’s View
Oncologists have subtly different views of what value means. Richard McGee, MD, has 4 decades’ experience in community practice. For him, “Value is getting what you want from a treatment with the least cost and least penalty in side effects. What’s difficult with the ‘art of medicine’ is that the cost for the patient is critically dependent on their life setting, not only on their medical history, but all the other things in their life, chronic diseases, age, families, and what things they value.”
Evan Hall, MD, MPhil, an oncologist at the University of Washington, Seattle, WA, agrees that value is “mostly about individual patients.” ‘High-value treatments’ have benefits in the setting of cancer, usually measured in terms of prolonging life and hopefully improving quality, or at least not being a major detriment. “And then there is the cost,” he adds. “Pharmacy costs and impact on patients’ lives beyond their copay—logistics of getting to and from the cancer center, time in the chair, and days or weeks of side effects after treatment.”
“I think about those mostly on the patient level,” he continues, “but also at times at the population or system level—what’s a high-value treatment for the health system in general. Sometimes things line up, but there’s a little tension. Is this high value or not? it seems to have value to a specific patient, but not necessarily for the system. Some things I suspect are low value, but our evidence doesn’t give us the answer.”
Value in oncology involves not just the patient but a whole ecosystem that includes family, friends, and work associates and patients may need help to keep that ecosystem functioning.
This pinpoints a key problem. While drug prices are skyrocketing, clinical trial quality has decreased. Studies don’t tell where a drug fits in treatment pathways. Should we treat sequentially or combine 2 or 3 drugs? In what order? Which strategy maximizes survival and quality of life? Value is uncertain when cancer drugs get accelerated approval with minimal evidence. Manufacturers get the desired indication, leaving the patient care team to figure out how to use them.
The Patient’s Journey
Learning details of a patient’s life is the oncologist’s first task. Patients omit things they think are unimportant, expect providers to disapprove of, or simply forget to mention. McGee says it’s a process. “You can only get to that if you establish rapport, where you sit and chat about a variety of things. Over time you build a profile of their goals. Sometimes you ask directly.”
Getting a diagnosis is very important to patients. “My initial reaction wasn’t fear,” recalls Tae, a long-time cancer patient. “We have a name. We know what it is—no longer an unknown thing. There was relief. Now we can start planning how to fight it!” Then an oncologist presents life-determining choices. Does the patient want to fight it? What is the patient willing to go through, risk, or give up? At age 17, Tae decided to fight. The chemo made her so sick she could only make it to school 1 day a week, but she persisted, and 35 years later, she’s still swinging. “I just had something in me that—I’m not ready to give up.” She has developed deep relationships with some amazing doctors. “I always felt the medical staff was working with me, not on me—giving me the power of decision. They’ve advocated very strongly at times for certain things. I had that network around me, but I was making the decisions. It’s the patient’s life. It’s their body.”
Hall uses the image of a scale: risks on one side, benefits on the other. “I can label things to help them understand should we do this or not? I put in reasons to do it and reasons not to do it. Sometimes dollars and cents come up. These things have costs. If you’re on active treatment, you’ll probably hit your out-of-pocket
maximum, but if you’re just on surveillance, you probably won’t. I usually present it in 2 dimensions—what we know about the benefits and what we know about the toxicities, including costs.”
“When you look inside yourself, what is it for you?” asks Tae. “What do you still want to do in this life, in this physical body that you have? It’s not giving up hope. That doesn’t mean that you fight way beyond when your body has said, ‘It’s enough’ or when the doctors have said, ‘There’s nothing more we can do for you.’ There’s value in making that decision yourself—quality over quantity. What’s important to you? What do you still want out of life?
Patients who want to survive will try aggressive treatments. McGee recalls a young woman with chronic lymphocytic leukemia. “I gave her information about the state-of-the-art (treatments) and her prognosis. She said very clearly, ‘I have two boys ages 10 and 7. I want to see them get to adulthood. Can I get there?’ That was her value. She would have been willing to do a bone marrow transplant despite the cost, discomfort, and risk. And 17 years later, when she was finally on her last legs, I reminded her of that conversation. She had this big grin and she said, ‘Yeah, you got me there. You got what I wanted.’” I remember a patient who chose the shortest regimen with the worst side effects. A mother of young children and a high school coach’s wife, she needed to get it done and move on. Looking back, she said it was the right choice.”
Hall’s balance helps patients understand how they’re going to feel. “I incorporate things like quality of life. If people are not likely to be cured, I don’t want them to feel worse from the treatment than from the disease. If somebody is asymptomatic, it might be right to treat them, but probably not to make them feel terrible with the treatment. Taking them from a relatively normal health state, even though they have metastatic cancer, and making them feel that bad is probably not acceptable. I try to empower patients if they’re having toxicities to share with me, so we can adjust the plan. You try to get into their head and understand what they’re trying to do.” Hall knows he is framing the discussion to some extent. “If you really think somebody needs to do a treatment, you present that in a slightly different way, even if you present the same facts. That’s the art of medicine, helping people reach a decision, not just leaving them to fend for themselves in the sea of information and statistics.” Oncology nurses help by providing education and symptom management, helping patients and families through treatment, and facilitating communication with the oncologist.
A patient’s value equation changes over time as they reach goals and set new ones. “The experience of living through the side effects changes the value as you go along,” McGee notes. “If they say, ‘Hey, I can’t tolerate the neuropathy. It’s too uncomfortable,’ you know the value equation has changed. I would say, ‘You know, this looks to me like you’re having a hard time. Are you sure you still want to do it? We can alter the equations for you any time.’ You need to prompt them to think about it. Value statements are difficult, because they mean different things to each person and to the same person at different times, depending on their life setting. When regimens are equally effective, you select the least toxic or most tolerable. That’s the dilemma faced by a highly competitive athlete diagnosed with testicular cancer. ‘If I take bleomycin, it will affect my lungs. I need them to perform as who I am. You can’t take that away from me.’ He needed a different regimen without bleomycin in it.” McGee also recalls “a concert pianist who would not tolerate any neuropathy, so we had to eliminate vincristine and taxanes. It’s also not uncommon for patients to select regimens based on their work schedules or other logistics.”
Value is uncertain when cancer drugs get accelerated approval with minimal evidence. Manufacturers get the desired indication, leaving the patient care team to figure out how to use them.
Nurse navigators and case managers help connect the services each patient needs. “Value for me is to make sure the patient received all their care from diagnosis to long-term follow up,” says nurse case manager Char Duffy, RN, Premera Blue Cross, Mountlake Terrace, WA, USA. “When they’ve just received the diagnosis, you have to get them resources, provide emotional support, and help them prepare for those appointments. Once they’re really connected and get the feel of their treatment—once they have a treatment plan—people feel much more comfortable and they will move on to the oncology team. Then, they’re tied in.”
“You can never tell how tough treatment will be for a new patient. I tell them to plan around it, having days off,” Duffy continues, “if you have it on Thursday, you have the weekend to recover. I try to help them understand that planning for fatigue and other symptoms is important before they start. The hardest thing is seeing somebody progress in their illness, and how the family changes throughout that process. That impacts you as a clinical person.”
Case managers address care gaps. “There are major places where the system fails people,” says Duffy. “I think the hardest thing is the length of time between appointments. They get a diagnosis and have to wait for the MRI. One patient had to wait 30 days for an oncologist. That is not good support. Assessment of supportive needs is often lacking.”
End-of-Life Situations
End-of-life choices still matter. At the American Society of Clinical Oncology 2019, Atul Gawande, author of Being Mortal,6 talked about Peg, his daughter’s piano teacher. She had pancreatic cancer and canceled lessons. Gawande asked his “difficult questions:” What are your quality-of-life goals? What matters to you? What tradeoffs are you willing to make? Like Alex Trebek, Peg wanted to keep working. Teaching gave her life meaning. With home hospice, she taught for 6 more weeks and held a recital at which she gave each student a personal message. Peg made those 6 weeks count and her inspiration lives on in her students.
The Importance of Holistic Palliative Care
Oncologists naturally lean toward the most effective treatment the patient will tolerate. To promote a positive attitude during treatment, the cancer patient culture uses militant language. We had a “war on cancer.” Obituaries often say that patients “lost their courageous battle with cancer.” Organizations raise money to “fight” it. Sometimes the drive for aggressive treatment does not serve the best interests of patients unlikely to be cured, because it overlooks other long-term needs. Early referral for palliative care gives patients time and support to address emotional, spiritual, family, legal, and financial issues. Some patients fulfill aspirations involving travel. Palliative care seeks to achieve the best possible functionality for the longest time, a delicately balanced tradeoff. This, too, is more art than science, and it is less likely to happen when the focus is on survival at all costs.
Scott Ramsey, MD, PhD, Director, Hutchinson Institute for Cancer Outcomes Research, Seattle, WA, USA asks the key question. “Why do we place so little value on the end-of-life experience? Death is the one certainty, yet my experience as a researcher and a clinician tells me that we do a very poor job of preparing patients and families for this inevitable outcome, even when it is staring everyone in the face, and a worse job of managing it. If we spent 1 one-hundredth of what we spend on new drug research on new ways to manage end-of-life care, it would vastly improve its quality for everyone.”
Stereotyping: When a Patient Doesn’t Fit the Assumptions
Some patients with cancer don’t fit the usual assumptions and this can affect how people, including providers, interact with them. “The very notion that a male can contract a ‘woman’s disease’ seems like a good example of the incongruous and unpredictable nature of humor,” writes Khevin Barnes, a male breast cancer patient. Humor helped him survive.7
Patients with breast cancer are sometimes criticized because people assume it’s “their fault” for having smoked. That’s unfair to any patient but moreso for patients who weren’t smokers. Frank Sierawski, age 34, had never smoked and had no family history of cancer, until his distressing cough was diagnosed as metastatic lung cancer. Now he promotes public awareness. “If there was ever an example of someone who never smoked and never thought they would get lung cancer, it’s me,” he says. “But the truth is anybody who has lungs can get lung cancer.” In some cases cancer diagnosis is delayed because providers aren’t expecting it.8
Financial Toxicity
As cancer treatment costs increase, the burden on patients and society is becoming too heavy. “Most of the time the patient’s financial risk is limited,” says McGee. “Financial risk is borne by insurance, society, or other coverage systems. It’s extremely rare for a patient to bear the entire financial burden themselves, and so the cost issues become confused. If you’re buying my dinner, I’ll have a steak. If I’m buying it, I’ll have a hot dog.” For patients, the annual out-of-pocket limit becomes important. For the 2021 plan year, the limit on the public exchanges is $8550 for an individual and $17,100 for a family.9 Hall says that cancer patients actively treated will reach these limits, which is a substantial part of most patients’ incomes. Researchers at the Duke Cancer Institute coined the term “financial toxicity,” defined as “the patient-level impact of the cost of cancer care.”10 McGee says, “To the extent they want to get something done, especially if they’re young, patients will accept a lot of potential financial and physical toxicity that older people, perhaps wiser or more fatigued with life, simply aren’t willing to put up with.”
The Role of Payers: Achieving a More Collaborative Approach
Payers must try to slow rising cancer costs. Some adopt stringent coverage criteria similar to those used in other drug classes, but this is less successful in cancer. Lack of evidence and patient heterogeneity are problematic. Information is lacking. Drugs have multiple indications—the US Food and Drug Administration-approved labels are a moving target. Guidelines encourage off-label use and regulators may limit payers’ ability to manage cancer drugs. A collaborative approach is needed, where payers engage with providers to develop more nuanced approaches to treatment. If providers consider total cost of care, not just patient out-of-pocket cost, payers can allow more latitude so individual patient treatment decisions remain with provider and patient, where they belong.
A single article can only skim the surface of this deep, complex, and emotional subject. Hopefully, this one encourages readers to explore on their own. Most of us have already been touched by cancer in one way or another, and it is almost certain that we will be again. Despite the unknowns, there is much that we do know that will help us care for others with cancer and make better decisions for ourselves, if needed. A cancer diagnosis is not the end of life, and for many, it leads to a richer and more meaningful experience of the time that remains.
About the Author:
John Watkins, PharmD, MPH, BCPS is a regular contributor and a pharmacist at Premera Blue Cross, Mountlake Terrace, WA, USA. The content of this article reflects the opinions of the author and interviewees and do not represent the views of Premera.
References:
1. Centers for Disease Control and Prevention. An Update on Cancer Deaths in the United States. Updated February 23, 2021. https://www.cdc.gov/cancer/dcpc/research/update-on-cancer-deaths/index.htm#:~:text=From%201999%20to%202019%2C%20cancer,deaths%20per%20100%2C00%20population. Accessed 07/03/2021.
2. Centers for Disease Control. COVID-19 Data Tracker. https://covid.cdc.gov/covid-data-tracker/#trends_dailytrendsdeaths. Accessed 07/15/21.
3. National Cancer Institute. Financial Burden of Cancer Care. Updated July 2021. https://progressreport.cancer.gov/after/economic_burden. Accessed 07/03/2021.
4. Kahneman D, Tversky A. Prospect theory: an analysis of decision under risk. Econometrica. 1979:47(2);263-291.
5. Heukelom FA. History of the Allais Paradox. Br J Hist Sci. 2015:48(1);147-169.
6. Gawande A. Being Mortal: Medicine and What Matters in the End. Metropolitan Books, Henry Holt and Company, 2014.
7. Barnes K. Laughing Through Male Breast Cancer. CONQUER: The Patient Voice, Vol. 5, No.5. October 2019.
8. Doyle C. Just Ask Frank Sierawski: Anybody With Lungs Can Get Lung Cancer. CONQUER: The Patient Voice, November 2020.
9. HealthCare.gov. Out-of-Pocket Maximum Limit. https://www.healthcare.gov/glossary/out-of-pocket-maximum-limit. Accessed 07/13/21.
10. Zafar Y, Abernethy AP. Financial toxicity, part I: a new name for a growing problem. Oncology (Williston Park). 2013:27(2);80-1, 149.
