Improving the Cancer Experience

A national study proves that patients and caregivers want more.

When my friend Lelia was scheduled to have surgery to remove a lump on her breast, she asked if a plastic surgeon could be present in the O.R. to also give her a face lift. “I might as well take full advantage of the anesthesia,” she told me at the time. The operation was complex and, thankfully, it turned out that the tumor was benign. But she was still miffed at her doctors for nixing her rejuvenation plans while she was “under.” All right, she isn’t your typical patient. And nothing ever really makes her happy anyway, short of a Chanel sale. But, in the real world, as the healthcare landscape evolves, survivors everywhere are changing how they look at their treatment experience – and demanding more from it.

With that in mind, Cancer Treatment Centers of America® (CTCA) set out to get feedback directly from patients and caregivers across the country with The Cancer Experience — A National Study of Patients and Caregivers. This first-of-its-kind study provides critical insights as to the serious gaps between the expectations and/or apprehensions of care, and the reality of what is actually received. (Ancillary uplifts excluded!)

All patients want to overcome their illness. That’s a given. But many are finding that simply addressing the clinical aspects is not enough. Indeed, when I first started researching my concept of being Better Than Before, many survivors had said that even when they were told there was no more visible signs of disease and they could resume their normal lives, they were still left asking: “What do I do now?” They may have initially sought treatments that addressed the whole person, not just the clinical outcomes. But now they were also looking for both psychological and spiritual support to help them deal with their quality of life issues going forward. And happily, today’s healthcare professionals and institutions are increasingly providing it.

“A great deal of emphasis is currently on creating an environment where patients are more educated about their conditions and care options,” says Gerard van Grinsven, President and CEO of Cancer Treatment Centers of America. “The ‘Cancer Experience’ study results indicate that patients want better communication and improved supportive care and that’s what we strive to provide each and every day to them and their families.”

One of their patients, Beverly Knudson of Phoenix, Arizona, diagnosed with non-Hodgkin’s lymphoma three years ago, confirmed the study’s results: “I have been treated by doctors who were dismissive of my concerns and did not communicate with one another, forcing me to try and manage all the moving parts of my care on my own,” she says. “Dealing with cancer is hard enough without having to worry about the added stress of trying to coordinate all my appointments. When I finally found a team that I could trust — one that thoroughly explained my diagnosis and treatment approach — it took a huge burden off me and my loved ones. It made me feel more at ease and in control of my health. Most importantly, it allowed me to focus fully on my recovery while my team coordinated my care.”

Interestingly enough, the study’s most eye-opening finding is that — independent of treatment outcome — nearly one-quarter of patients and caregivers are dissatisfied with their care experience. Suffice it to say, this is a wake-up call to the healthcare community. Patients are no longer passive about cancer treatment; they’re highly-motivated consumers. And when expectations are not met, they are inclined to switch providers. This is a very real occurrence and one that will be increasingly common in the future if providers don’t start delivering on their promises.

Another finding in the study, clinically speaking, was the lack of pain management. Cited by 64 percent of patients as important to their experience — and even more so for their caregivers — surprisingly, only 55 percent received this care.

“There is no question that the pain associated with cancer is a serious issue, in some cases, more debilitating than the cancer itself,” says Dr. Raed Rahman, Medical Director of Pain Management at the CTCA. “When patients are in pain, it affects everything including their mental state, but they often don’t report it because they don’t want to alter their treatment plan.” The doctor contends that it pays to be prepared when talking to your doctor. “Clear communication is vital in receiving proper and effective treatment for pain. People who are informed and prepared will have more productive medical visits by relaying critical details and asking the right questions.”

Below, Dr. Rahman provides some simple steps you can take to communicate your pain levels with your healthcare professional:

• Describe your pain with adjectives: Only you know how your pain feels. But you can better help your doctor understand by using words such as aching, throbbing, shooting, stabbing, gnawing, sharp, tender, burning, exhausting, penetrating, nagging, numb, and unbearable.

• Rate the severity of pain: Use a scale of 0 to 10, with 0 being no pain and 10 being the worst pain you can imagine. Rate your pain for a period of time before your doctor visit, noting for each time frame when it’s worst and best. It also helps to keep a pain diary to record how you feel over a period of time.

• Be specific: Is your pain continuous, periodic, or occasional? Recall the time of day when it is the worst and best, and if it is triggered or helped by particular activities—even simple things, like standing, walking, or getting in/out of a car.

• Show your doctor where it hurts: Point to a specific location or to more than one area. Keep track of pain by marking an “x” on a simple outline drawing of the body. Take the picture with you on your next visit as a visual reminder.

• Describe any other symptoms: For instance, do you have flu-like symptoms, such as being tired and having an achy feeling all over the body, nodules on your hands or elsewhere, or rashes that accompany your pain?

• Devise a unique treatment plan:  Your doctor can suggest anything from massage or yoga to prescription medication.

• Speak up. Talk with your doctor about different treatment options and adjust your pain management plan accordingly. Your symptoms are real, and you deserve to have your pain relieved.

“It’s so important to have a voice when it comes to your health,” concludes Linda Marshall, a 55-year-old brain tumor patient. “If something doesn’t feel right, you have to say something. You can’t hide it.”

In other words, this is your health and your life and you must learn to be proactive. And in doing so, you are taking the first steps to becoming Better Than Before.


By Jane Wilkens Michael | Posted September 3, 2013

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