Every day we’re bombarded with new information on research, statistics, and treatments for cancer. One day mammograms and self-exams are considered necessary, and the next, not terribly useful. One day we’re urged to take immediate and drastic measures following a diagnosis of Stages 0 and 1cancer, only to hear later that it’s better to wait. This growing debate over the best ways to detect and treat breast cancer even made the cover of Time magazine recently, in an issue featuring a comprehensive article citing the views of two progressive doctors on the subject.
Certainly, it’s vital that research evolves and new evidence is presented. Yet I can’t help but wonder how patients, caregivers,and even healthcare professionals are expected to navigate this ever-changing pool of information. Creating a space where patients can make their most conscious, informed choice is therefore more important than ever.
In my own life, I’ve seen a different outcomes through different approaches to treatment. I witnessed my sister’s brave journey through breast cancer. All she wanted was to have a say in how her treatment course was designed. Sadly, she wasn’t able to find a healthcare team willing to override the treatment protocols they were boxed into in order to give her that say. By the time she found an oncologist who truly listened, it was a bit late. However, in the process she educated herself and everyone around her about tools that would support her in her fight,ranging from nutrition to mindfulness through spiritual belief and beyond, exploring every conceivable complementary treatment she felt could be helpful. She did receive some conventional medical care. But in the end, the doctors’ lack of awareness and fear of complementary therapies prevented them from collaborating with her on a treatment regimen. In spite of that, through it all my sister maintained her quality of life as she defined it.
Alternately, I saw friends who totally surrendered themselves to the medical system, enduring countless hospitalizations and one experimental protocol after another. Some survived, and some did not.
In yet another scenario, my mother also had breast cancer and survived it, twice. She detected it herself, each time very early. Opting for mastectomy, she didn’t require further treatment.
As a healthcare professional, caregiver, family member, and friend to those affected by this disease, I have long wondered what factors determine whether someone survives or succumbs to cancer. After years of personally and professionally pursuing answers, I’ve come to realize that each journey is different. Each person reacts differently to news of their diagnosis–and their reaction to that diagnosis can change throughout the course of the illness. But the one common denominator I discovered, based on my observations and the feedback of those afflicted? How the diagnosed handle their fear. This realization led me to recognize how important quality of mind was for patients making life-altering decisions about treatment options.
From the time they first receive the news to possible relapses and through the late stages, fear is the one element that the medical system, patient,family and caregivers have the most trouble dealing with.
Granted, our medical system does not adequately train oncologists to deliver bad news. On top of that, in the physician’s view there is a significant risk in taking more time to determine a comprehensive and customized treatment approach for the individual. Whatever the actual extent of that time risk,in my view treatment outcomes depend significantly on the individual, and how they perceive the news of their illness.
A doctor friend of mine, also a cancer survivor, recently shared that when she delivers bad news to patients she can see their eyes instantly gloss over. They shut down, unable to hear the rest of the conversation. Then they go home and call back several times, asking her to repeat the information. For the patient, this initial state of shock (which can continue well past diagnosis delivery) is far from an ideal state in which to make informed decisions.
And then there’s short time frame normally given the diagnosed to make treatment decisions. My physician friend believes that just as the disease doesn’t develop overnight, choosing a treatment option shouldn’t happen quickly either. Depending on the cancer Stage, an individual can take up to 2-3 weeks to make decisions. Time enough to digest the news, look at all the treatment options, get a second opinion if necessary, and then choose the option that feels right.
So what I set out to do is help bring the patient to an optimal state of mind and spirit from which they can best determine treatment options for themselves. This includes giving them ample information about their choices, listening to their concerns and needs, and reducing the “fight or flight” response that their body automatically goes into after hearing their prognosis.
A person’s state of mind is crucial in dealing with any life changing predicament. Yet in too many cases it is overlooked or underappreciated due to the overwhelming volume of patients that the system and its professionals are faced with, and the “one size fits all” mentality of our medical system. We cannot fault the system alone. There are too many variables doctors have to consider: age, gender, cultural beliefs, language barriers, income disparity, as well as their own knowledge base and belief system.
Thankfully, there is evidence that researchers are beginning to pay attention to the patient’s belief system and frame of mind as they relate to treatment outcomes. Growing in popularity are the concepts of ‘patient-centered care’, and ‘qualitative research’–approaches based on patient experience, not only numbers and statistics.
Until the healthcare system is better able to embrace and implement these changes, it behooves us as healthcare professionals, family members, and friends to exercise diligence and compassion when caring for individuals faced with this difficult journey.
That is what we strive for at BCN. One patient at a time.