Originally coined by in 1990 by Dr Harold Freeman, patient navigation referred to a community-based program he developed to help uninsured and underserved cancer patients overcome barriers to care. Since then the term patient navigation has evolved to have a much broader meaning.
Most hospitals and cancer centers have implemented the use of patient navigators to help guide patients to their various appointments in the hospital and to provide free support and counseling on the treatments that they are currently receiving. While some patient navigators are volunteers, most are employed by the hospital or cancer center. Independent navigators are more like coaches or strategists.
Coaching is the missing link in healthcare. Coaches look at quality and quantity of life and do not base success solely on tests and procedures. They empower clients to make lifelong changes to live a life of wellness, not as lifelong patients.
A coach or strategist is an unbiased advocate who empowers the patient to seek out the best team and treatment, and can do so beyond the confines of a specific hospital system. Surgical options vary from doctor to doctor, and by institution. Further, big decisions require big conversations. It is very difficult to process all that is being said during this time of distress, and emotions run high. You cannot undo a mastectomy and you cannot always undo the damage of treatment. The benefit of a coach is to quell the fear and support you in choices for your cancer, and your needs. Too often a well-meaning loved one will pressure a patient to follow an unwanted course. A coach can provide information, clarity and an unbiased ear to facilitate informed decisions, not fear-based decisions.
A coach can improve cancer plans and outcomes by bridging the gap between conventional cancer treatment and the integrative holistic therapies that can improve the efficacy of treatment, mitigate side effects, improve quality of life and extend survival. S/he will help you to uncover the cause of your cancer and to change the environment in which your cancer was permitted to grow. Patients with rare or advanced cancers often use coaches to help research their illness. They may be able to find opportunities and therapies that you or your clinician is not aware of.
But above all, a cancer coach is an empowerment coach. Empowerment allows us to regain the control that is lost with a diagnosis. When you empower someone to take control of their care they become active participants in their health. Think of the power when you say “this is what I am doing to beat cancer” as opposed to “this is what they are doing to me”. The latter is very negative and does not inspire anyone. Plus, when you have confidence in the treatment, you develop the much needed positive attitude. Not the one that says you have to be happy you have cancer, but rather the one that says I will beat cancer.
Another role of a coach is to aid survivors. The survivorship coach is more of a life coach helping the patient to overcome the psychological trauma of cancer and helping them to find their new normal in life. As we all know, cancer is a game changer–for better or for worse, life will never be the same.
Does a coach or advocate have to be licensed?
No, as of right now, there is no nationally or internationally recognized certification. About two dozen organizations offer everything from degrees and certificates, to workshops or continuing education. While some formal training is necessary, and is downright essential for certain types of coaching (such as nurse navigators), an advocate can have any number of life experiences or educational background. Some of the most amazing coaches became coaches only after their own diagnosis, and bring with it invaluable experience and with little or no medical backgrounds; these coaches will then complete the necessary training. The most important trait is a genuine desire to assist patients in the direction the patient wants to go.
What does a private coach cost?
It depends. Some coaches work by the case and others by the hour. Expect to pay between $75 and $150 per hour. Be sure you understand the terms and skills offered before you begin working with a coach. What to expect? Your coach cannot tell you what to do, but s/he can provide you with the information and tools you need to make the best possible choices. Interview your coach; be sure s/he understands you and will respect and support your choices.
How do you find a coach?
Sadly, there is no central listing for coaches. But it helps to know what you are looking for. Are you looking for help with conventional options, holistic care, or integrative care which combines the two? Have you gone through surgery and are now looking for alternative options for drug therapies? My best suggestion is to ask reputable organizations for recommendations or to use search engines, where you can find different types of coaches. Know that coaches are happy to recommend other coaches to fit needs.
The biggest mistake you can make is to assume that your clinician or oncologist will understand your needs or even everything that it will take to keep you alive. They may do their best, but you cannot make that assumption. You need to be your own lead researcher and advocate or enlist a trusted friend or loved one; you can also hire a coach.
Elyn Jacobs is a breast cancer survivor, professional cancer strategist, radio talk show host, speaker, and the Executive Director for the Emerald Heart Cancer Foundation. Elyn empowers women to choose the path for treatment that best fits their own individual needs. She mentors women who are coping with issues of well-being associated with breast cancer and its aftermath; she is passionate about helping others move forward into a life of health and wellbeing. Elyn has been featured on CNN Money, Talk About Health and more and has contributed to Breast Cancer Answers as well as written for the Pink Paper, Breast Cancer Wellness, Integrative Oncology Essentials, and she writes the Options for Life column for the Natural Healing-Natural Wellness Newsletter. Elyn lives in New York with her husband and two young boys. Find Elyn at www.elynjacobs.wordpress.com