Cancer Care System in Crisis

Americans fear cancer. In a poll for MetLife, when participants were asked which major disease they feared most, 41 percent said cancer, 31 percent said Alzheimer’s disease, and small percentages of other respondents said other diseases. Not surprisingly, The National Institutes of Health has a budget allocation of $4.9 billion for 2014 to The National Cancer Institute, far more than any other Institute and over 25 percent of the NIH’s total funding to study organ-based diseases ($19.2 billion).

Despite this longstanding commitment to cancer research, the Institute of Medicine (IOM) reported in September 2013 that America’s cancer care delivery system is “in crisis.” The IOM determined that physicians ask for patients’ preferences in medical decisions only 50 percent of the time and that 25 percent of patients report that their clinicians fail to share important information, such as test results or medical history, with other care providers.

Of bankruptcies in the U.S., 33 percent are related to medical concerns, and many people are referring to the astounding cost of cancer therapies as another “toxicity” of the disease. Patients are too often prescribed cancer treatments that can cost double the conventional treatment options but have no evidence-based incremental benefits.

Exacerbating the situation, the number of cancer patients is expected to grow by 45 percent in the next 15 years as the baby boomers age and become a “silver tsunami,” with a commensurate increase in costs, which are now well over $100 billion. Yet, the current health care system is ill-equipped to treat older patients who require complex care that accounts for multiple comorbidities, large numbers of medications, independence-robbing functional losses, and cognitive declines.

The attention directed towards cancer research, and subsequently towards cancer care for patients, has overly focused on the “cancer” side of the problem and under-focused on the “older patient” side of the problem. How can this be changed?

A New Model of Health

We believe that this crisis is largely a result of our own misconceptions about health. In our rush to aggressively treat anything labeled as “cancer,” even among older, frailer people with low-grade diseases who are much more likely to die from other causes, we often over treat patients, causing unnecessary costs, unnecessary care fragmentation, and unnecessary pain and suffering for patients. By focusing our attention on the continuing “War on Cancer,” we are too often distracted from more important health concerns.

Support for a new view comes from The National Social Life, Health, and Aging Project (NSHAP), a multidisciplinary study supported by a series of grants from the NIH/NIA. NSHAP seeks to determine relationships between sociological, psychological, and biological health factors among community-dwelling, older adults in the U.S.

Participants are asked detailed questions about their health, financial and social circumstances, psychology, and relationships in order to study health in a way that is based on the World Health Organization’s (WHO) definition of health: “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” This broader view of health focused on quality of life can serve as a better guide when thinking about our investments in health care.

Using more than 50 health-related characteristics of participants across many possible features of health, including comorbidities (e.g., cancer), physical measures (e.g., blood pressure), mental health (e.g., depression), physical functioning (e.g., activities of daily living), and frailty (e.g., gait speed), NSHAP’s team created a “latent class” index of health  using a standard type of statistical analysis. This index allows us to determine which individual aspects of health most contribute to one’s well-being.

Our study reveals some fascinating features about population-level health for older adults. For example, despite being relatively ignored in our current health care system, health behaviors (e.g., exercise), functional assessment measures (e.g., mobility deficits), and mental health (e.g., depressive symptoms) are key factors when identifying patients at-risk for health declines.

Also, there are important health differences throughout the NSHAP population that are primarily due to social network structure, which is often ignored completely. Essentially, NSHAP has determined that the contexts in which medical concerns about diseases arise are more important in many ways than the medical concerns themselves. These contexts are not “secondary concerns” — they are fundamental.

Furthermore, one of our most compelling results related to cancer care was that having been diagnosed in the past with cancer—being a cancer survivor—was not especially informative when predicting participants’ current overall health status. For example, breaking a bone after the age of 45, poor mental health, disordered sleep, diabetes, cardiovascular disease, and frailty were much more important predictors of health status than cancer.

People who had “very good” or “excellent” health were as likely to say that they had cancer as those with “fair” or “poor” health. Thus, our results suggest that there is a high risk of “collateral damage” from prioritizing cancer over other types of diseases and problems in clinical care and research.

A New Model of Health Policy

Our finding that cancer may not be as harmful as other diseases should not be surprising. Many prevalent cancers are very treatable. In 2011, there were 12 million cancer survivors in the U.S. These survivors live with cancer as a chronic condition and often die of unrelated causes. Older patients (age 65 years and older), who represented nearly 60 percent of cancer patients in 2011, make up over half of the population of cancer survivors.

Prostate and breast cancer are among the most common cancer diagnoses, and, in both cases, patients more often die of other causes, especially cardiovascular disease. In fact, heart disease kills about 20,000 more people than cancer each year.

Our rush to prioritize cancer over all other diseases is often unjustified and most likely stems from our deep-seated fear of the disease. “Cancer phobia” has existed at least since 1955 when the term was coined in “A Plea Against the Blind Fear of Cancer.” Unfortunately, the strong emotional reaction we have to a cancer diagnosis often leads to unnecessary, aggressive treatments that end up being more harmful than the disease itself by compromising other, more important aspects of health.

Of course, some forms of cancer, such as acute cancers in younger patients like the pancreatic cancer that killed Steve Jobs, are indeed deadly. The term “cancer” should be reserved for these types of diseases. Beyond this, however, we should focus our attention on the overall health of the patients.

This change would be one of the first ways that we could “reconceptualize health” to make it more compatible with the WHO’s sensible definition, emphasizing quality of life and the many other dimensions of health included in our new model. If we did reconceive health along such lines, our health care system could be guided by a new, more appropriate idea of health that is focused on patients’ overall functioning, mental health, and social circumstances rather than on specific diseases like cancer.

Cancer is perhaps the paradigmatic example of how a disease-centric mindset towards health often fails to improve patients’ lives and puts our health care system “in crisis.” Each patient’s disease, or more likely multiple diseases, need to be considered in light of his or her overall function, psychology, financial situation, social support options, and values. Treatment options may differ significantly based on each patient’s individual needs, and his or her preferences should be considered.

Not every new diagnosis should be aggressively treated, including a cancer diagnosis, and our research efforts need to be shifted from finding disease-specific treatments to determining how to better prioritize treatments for patients with multiple diseases, to find out what patients really want, and to organize our patient care system to deliver a different kind of care.

With NSHAP, we found a scientific model of health, based on this broader conceptualization of health, that we believe could be a crucial first step in creating an effective, holistic, patient-based health care system. The model offers a way to prioritize a patient’s illnesses and shows that we should focus less on cancer care and more on other aspects of health.

A new health care system based on our reconceptualization of health would focus on reducing the burden of treatment for patients and improving overall quality of life. Care coordination services, psychosocial services, and physical therapy would be emphasized along with the maintenance of independence at home, through home care services. Multimorbidity and patient preferences would be researched and considered more thoroughly. Areas that focus on symptom management and quality of life, such as palliative medicine, would be expanded.

Overall, in order to reorganize health care to overcome the growing “crisis” described in the IOM report, we need to change our conception of health. If we continue to focus on specific diseases like cancer and ignore more important dimensions of health, we will repeat the same mistakes that have led to the current state of our health care system.