"Cancer Coaches" Start to Play Significant Role in Cancer Care

Cancer patients need all of the help that they can get, particularly from empathetic and knowledgeable guides who are familiar with the ups and downs of the treatment process. But the kind of "help" that I am discussing here is not necessarily a shoulder to cry on -- it's assistance in making informed decisions when and where they count most. I did not have a suitable name for this type of person until now -- I have discovered that they are now referred to as cancer coaches or patient navigators and below is an excerpt from an article (see: Cancer 'coaches' sway treatment choices) that describes the role in detail (boldface emphasis mine):

Bad advice, or just too much of it, can compound the trauma and damage done by the disease itself, cancer patients often find. Friends and relatives are important for support, but when these untrained people act as cancer coaches, they can sway people to make poor decisions about their care....Many advocacy groups and hospitals are using "professional" coaches — trained volunteers or paid workers who can objectively help new patients navigate the maze of information and options. The American Cancer Society started a patient navigator program a few years ago that now operates in 87 locations and is planning to expand.....

Whether amateur or professional, a good cancer coach should offer these things, experts say:

• Support: an ear to listen, a shoulder to cry on, a hand to hold.
• Resources: reliable information or help getting it, and only if the patient wants it.
• Objectivity: a willingness to help patients discover what is best for them, rather than to validate the coach's own cancer battle and choices.

Click here to view a video on YouTube produced by the American Cancer Society about their cancer navigator program.

One of the most important roles for a cancer coach is to provide a second set of ears during important physician and nurse visits relating to treatment. Let's be realistic here. The patient may be lucky to hear and retain half of what is being told to him or her during such visits for obvious reasons. The coach always needs to have a pad and pencil handy to take detailed notes including the exact names and dose schedules for all drugs that are being prescribed.

In my opinion, an ideal cancer coach will also be knowledgeable about web searches in order to acquire information about such matters as adverse drug effects, disease symptoms, and the availability of clinical trials. Clinicaltrials.gov is a good place to start to explore open drug trials. Although one's instincts would to be to turn to a relative to act as a cancer coach, my instincts tell me that friends or even trained previously unknown volunteers might serve  better in this capacity because they could bring more objectivity to the process.

Comments

[bev M.D.]

Although I am also aware of this trend, when you think about it, it's sad that people need a "cancer coach." Whatever happened to the Dr. being their coach? I know people don't retain the information at the visit, but maybe that just means we in the profession should find better ways to convey it - perhaps a written handout personally tailored to the individual patient's condition, or a CD given to them recording the conversation, or followup emails for questions, or whatever. Surely technology can help us out here, without having to add yet ANOTHER professional (with ensuing costs, handoff mixups, etc.) to the equation.
The Dr. should also be totally free of any suspicions about having prescribed certain chemotherapies for economic, rather than patient-related, reasons. To the extent this is going on (and I believe it is happening), it is disgusting.