Improving the Human Side of Cancer Care

The United States boasts the best cancer care in the world, and yet many patients have complained that the "human" side of their care has lagged far behind. They often feel their treatment is directed at their tumors, while they and their families are left to fend for themselves emotionally. Doctors have historically dismissed the "human" side as too touchy-feely and were reluctant to discuss emotional issues. Fortunately, there is now a strong body of research supporting the treatment of the whole person.

When the National Cancer Centers Network (NCCN) wrote the first guidelines in 1997, the panel found that semantics played an important role in doctors' reluctance to bringing up these kinds of issues. Words like "psychological" and "psychiatric" carried a social stigma for many people. The panel therefore recommended asking patients about "distress" rather than psychological problems. Distress could refer to any level, from the normal worry, fear, and sadness anyone would feel with a diagnosis of cancer, to more severe levels that might represent true -- and potentially treatable -- psychiatric disorders. Taking away the stigma made it easier to open a dialogue that in itself could offer some relief or might pave the way for treatments that could help alleviate more extreme levels of distress. It also served to finally bring these issues "out of the closet" in recent years.

In particular, two prestigious institutions have brought much needed attention to this area. Concerns about quality of life prompted the Institute of Medicine to research the problem and recommend an evidence-based plan of action for helping patients deal not only with medical issues, but psychological and social ones as well. In 2008, the panel proposed a new standard of quality cancer care that includes psychosocial care. And in 2011, the American College of Surgeons' Commission on Cancer, which accredits the 1,500 cancer centers around the country, mandated that centers must have a plan in place by 2015.

As a result, oncology offices are now exploring how to best screen for distress and psychological needs in new patients at busy clinics. The NCCN suggested a simple question that could easily be asked in the waiting room or office. Similar to the commonly-used scale for pain assessment, the Distress Thermometer calls for patients to describe their level of distress on a scale of 0-10. Research shows that a score of 4 or higher should be followed up by a nurse or social worker to find out more about the nature of the distress and refer the patient to a proper resource for help. Of course, there is no "one size fits all" model, and oncology primary teams -- usually an oncologist, nurse and social worker -- are exploring options as to what works best for them. Some teams are finding electronic records helpful, but this is clearly a work in progress for now.

Fortunately, this new quality standard of treating the whole person has now received international endorsement as well, first by the International Psycho-Oncology Society and the International Union Against Cancer. Forty-seven other global cancer organizations have since signed on as well. Efforts are also underway to try this approach with other chronic diseases in adults, particularly heart disease, stroke and diabetes, which will be major health problems of the 21st century as the population ages.

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