Thursday, August 22, 2013
Famously attributed to Justice Potter Stewart, this phrase suggests that it’s not what you call it but how you perceive it that matters. (Actually, we prefer Sean Connery's use of the phrase in Goldfinger. You can probably check it out on cable tonight, or tomorrow, or this weekend, or...).
One of the risks of starting or growing a palliative care programs is that your constituents, both practitioners and patients, will interpret what that means in the context of their own biases. Too often, the first interpretation is that palliative care means hospice. It's something we all fight. And even if we can get practitioners to get past this hurdle, they can get pretty protective about how their patients are approached. Even if the practitioner knows better, it doesn't mean that the patients will understand. In both cases, I don't think you get the opportunity to have people get a chance to "...see it..."
In our practice, we had more than one failed attempt to integrate palliative care. But we didn't quit; and we didn't lament our failures. We learned from them. We learned that we needed to focus less on what we call it, and on finding ways to make it happen.
Hiring a certified cancer exercise specialist doesn't sound like starting a fledgling palliative care program...but it turns out it is. Focusing on quality of life and helping folks become more able to do what they used to do are central components of a solid palliative care program.
All too often fatigue is simply the way it is for patients with metastatic disease. After multiple treatments, numerous medical appointments and simply feeling terrible, patients spend a significant amount of time in bed dealing with or adding medications to deal with side effects. And that's simply the way it is. Is it really? Hardly.
Over 90% of patients with cancer report fatigue and there are very few solutions offered by traditional medical providers. We can focus on an education and solutions based approach that empowers patients and supporters under our three pillars of wellness; exercise, nutrition and mind/body activities. Why wellness? Wellness is defined as a healthy and proactive approach to living well and being healthy? In patients with metastatic disease? Absolutely!
We know that exercise is one of the most powerful tools to fight cancer related fatigue, but understandably, it’s a very daunting task for most patients. Much of the fatigue that patients experience is loss of lean muscle tissue which is required to complete every single body action from getting out of bed, making meals, working at a job, playing with kids you name it. These muscles are the rocket boosters of moving the body. We all know the use it or lose it saying, this is exactly what happens for our patients. In those with advanced disease, the fatigue is typically greater from the cumulative treatments where patients frequently have a lot of side effects, rest more and are active less. They lose muscle at an even greater rate. This loss often won't show up on the scale as frequently muscle is replaced with body fat.
A cancer specific wellness program shares not only the importance of exercise but how to do it. Education might include tips on chair based strength training the best starting point for deconditioned patient instead of walking, improving core and posture for patients with lung disease. Energy conservation and input from a dietitian are integral parts of cancer specific wellness programs. Whenever possible it is best to individualize support even exploring mind body activities, such as meditation, guided imagery and yoga. An introductory class can give patients a taste of all of these so they can have the tools to use what they feel is the most impact for them.
We didn't call what we did palliative care, and we certainly didn't tie any of these services to end of life care. But we certainly gave patients with metastatic disease part of their lives back and there is little doubt it was appreciated.
At the end of the day, that's palliative care...I know it when I see it.
John Hennessy is Vice President, Operations for Sarah Cannon, the global cancer enterprise of Hospital Corporation of America (HCA). His focus areas at Sarah Cannon are medical oncology, survivorship, and palliative care. He serves on the Board of Trustees of the Association of Community Cancer Centers (ACCC), and on several committees for the American Society for Clinical Oncology (ASCO), including the Clinical Practice Committee. This article was co-written with Sami Papacek a Certified Cancer Exercise Specialist at the University of Kansas Cancer Center.