Not So Hidden Costs

Recently ASCO came out with a recommendation that all patients and families should be apprised of the cost of cancer care at the beginning of their treatment.

Recently ASCO came out with a recommendation that all patients and families should be apprised of the cost of cancer care at the beginning of their treatment. Sounds simple and makes perfect sense, but they’ve taken it a bit deeper. They have a entire booklet that anyone can download for free to give to patients that touches on areas related to the cost of cancer care that, until recently, many people did not discuss perhaps were even aware of. We see the patients come and go to their appointments or to their inpatient stays and we certainly are aware of the obvious costs. We know that every drug we use from antiemetics to pain medications to the chemotherapy and biotherapy itself can be astronomical in terms of cost. We get the social worker and the discharge planner in line, we try to determine if there is another drug with the same efficacy that is not as expensive, we realize that this may be a hardship on our patients; not to mention the cost of supplies. Whether you work at a facility where the cost of supplies is seen as a part of the overall charge for treatment or one where each item is billed separately, you must be aware that patients are charged exorbitant amounts.

Beyond what we know to be the high costs of care, this new booklet for patients does a really nice job of explaining to the patient some of the perhaps not as obvious costs that they may encounter. It starts out by recommending to group expenses into several categories. These include doctor appointments, medications, transportation, cancer treatment costs, family and living expenses, caregiving, and employment/legal/financial issues. Some of these are obvious, but to the person who has perhaps never had to deal with the healthcare system, even those could be overlooked. For instance, do you have a copay when you go to the doctor, do you have to pay so much out of pocket first, and are lab tests billed separately? Medications and cancer treatment does not just include the actual treatment but any medications that may be needed to counter act the side effects of treatment. Transportation costs could not only include the cost of gas but also parking once at the office or treatment facility. And how often will that occur? Will a patient need to get child care or elder care while they go to their appointment or are getting their treatments. Or will they have to increase the care they are currently receiving while they recuperate from the effects of treatment. What about employment issues, loss of wages, or getting information about income tax issues regarding medical care and the cost of paying someone to help with power of attorney or will preparation? These are all things that our patients and families face daily through their treatment. Things we, as frontline providers don’t often address or even are aware of.

I think this is a wonderful tool that has been put together to help with the things that we don’t often know. Not only does it address each category but gives a list of things to find out about and questions to ask in each topic. It seems like an invaluable tool and one that has been much to long in the coming. So here’s the dilemma that some people are having. Should we give this to our patients, if so when and will the doctors be angry that we laid this all out for them? I think some people are afraid that someone may not have their treatment if they know all of this. And maybe so. But isn’t that what true informed consent entails? Is it not about more than knowing the potential side effects, toxicities and outcomes of a treatment? Informed consent should include discussing all aspects of treatment and how it could impact on a person’s life. This tool is available to every patient, if we tell them about it. This tool could head off some issues that weren’t thought about, if we tell them. I believe it’s our job to tell them. I believe the more information we can give the better. And this tool even has lists of resources that can be of help to patients. Why would we even consider not using this tool or at least modified versions of it and then informing the patient where they can obtain the entire thing? I applaud ASCO for stretching beyond our limited awareness into areas that were previously left to deal with only after problems arose. I applaud their efforts to present a truer picture of how cancer can impact a patient and family and for opening the door to the real costs of cancer care.

If you are interested in reading more about this booklet or downloading it for your patients, it can be found at I know after reading it myself I have a much broader understanding of things that I just never considered much before.

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