If you or a loved one has had cancer, how much do you really know about your disease after you have completed your treatment?
If the experts are right, not much. Certainly not enough to tell another doctor the stage of your disease, the type and dose of chemotherapy you received, the plan for follow-up and the potential long term side effects. And that doesn’t even begin to address the questions of the impact of the disease and its treatment on your psyche and your pocketbook.
Now, fast forward with me. It is twenty years after your diagnosis and treatment. You are doing well, and you are now under the care of a primary care clinician. A researcher writes a report about a new finding that would put you at high risk of having a heart attack as a result of a drug you received during your cancer treatment. But you and your primary care clinician don’t read or hear about the report, so you can’t take preventive steps to protect yourself.
This scenario is not far fetched. The sad truth is that most patients treated for cancer are not informed of these things, and perhaps most importantly aren’t given a record for them to carry along so that others who care for them can get the details easily.
In 2006, the
One of the recommendations from that study was that there had to be better coordination between specialists and primary care clinicians to ensure that all of the survivor’s health needs are met.
There was a lot of excitement at the time among cancer organizations and experts in cancer treatment about the potential of moving this process forward. Unfortunately, the hope we had hasn’t meshed with the reality we see. Survivor care plans are simply not getting the traction they deserve.
Organizations like the American Society of Clinical Oncology have devoted considerable efforts to developing model survivor care plans. You can find some of these model plans—in particular, for breast and colon cancer as well as a “generic” template that applies to all cancers—on the ASCO website.
But doctors and nurses aren’t running to complete these documents, or providing them to their patients or their primary care clinicians.
What is a care plan all about?
It should tell you some basic information, including your diagnosis, the stage of your disease, the precise treatment you received, the problems you had during your treatment, instructions for follow-up with your doctors, the possible short and long term side effects of your treatment, and where to go to keep updated to get information about new problems that may be discovered in the future. It should also provide you information about your diet and exercise plans, as well as screening for other cancers.
I have discussed the problem with getting survivor care plans off the ground with some of my knowledgeable doctor friends, and the responses have in some cases been underwhelming.
One of my colleagues who knows a lot about these things tells me that patients and families are in denial, not only about survivor plans, but with the entire concept of taking charge of their health.
His particular concern was that with all of the electronic capabilities we have—including developing online personal health records—people just don’t seem to care. (The discussion was broader, including his observations about the lack of interest on the part of many people to take charge of their health, and implement preventive programs including healthy diets, weight loss, exercise, and so on).
These plans aren’t’ easy to put together. Doctors tell me it can take an hour of unreimbursed time to research the record and fill out the form. Nurses are busy and they also have difficulty finding the time to complete these documents.
I should point out that the document itself is just a piece of paper. Probably the most important part of a survivor care plan isn’t the information on the page, but rather is the discussion that should occur between doctor and patient using the care plan as a stimulus to get that discussion going.
When you finish your treatment for cancer—especially if you receive chemotherapy—you should have a complete and thorough discussion with your oncology nurse or doctor about everything that has happened to you, and what you should expect in the future. You should have the opportunity to ask questions about your care, and get answers about your follow-up and the long term side effects of your treatment. You should get explanations you understand and that are helpful.
I can tell you that a number of organizations—the American Cancer Society among them—are concerned that there hasn’t been more acceptance and implementation of survivor care plans and the concept of an end-of-treatment consultation/discussion.
Those organizations are going to be working together to increase awareness of this process, and make this happen for the benefit of our patients and their families. We are going to work to improve the technology so that these care plans are easier to put together, and are based on better medical evidence and expert opinion. We are going to figure out how to get the information to you about what you need to know and how we can get it updated and in your hands, so that you can act on it when you need it and hopefully avoid serious complications in the future.
But there is one really important piece missing in this equation, and that is you.
During a meeting I attended earlier this week where a number of organizations interested in cancer care came together to discuss this topic, we went through a list of things that had to happen to make survivor care plans more available.
The one thing that everyone agreed on was that until patients and their families demand a survivor care plan and an end of treatment consultation, it isn’t going to happen.
Medical practice is slow to change. Let me assure you that I know first hand all of the excuses and reasons doctors can think up not to do something new and different from what they already do.
Survivor care plans are here to stay. They are important. As cancer survivors increase in number, grow older, move to other locales, change doctors and health plans, and as our models of care change, these plans are going to become increasingly important sources of information about you and your cancer treatment.
Hopefully, one day in the future, we will have many survivors who have lived years beyond their treatment. They will have something in their hand that gives them the information they need to know and can share with their new doctors. They will have online resources that can keep them updated on advances in knowledge about their disease and their treatment, and that information will be customized for their benefit.
That may be a dream. But only you can help to start making that dream a reality today.