Survivor Care Plans: What You Need To Know For You

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.


 


Oops…


 


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 Institute of Medicine published a book called “From Cancer Patient To Cancer Survivor: Lost in Transition.”  That book outlined some of the problems we have in caring for cancer patients, especially since there are now more survivors—about 12 million at last count—than ever before, and that number is fortunately growing every year.


 


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.


 


In 2007, the Institute published a “follow-on” book which made specific recommendations on how to implement cancer survivor plans.


 


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.


 


 

8 thoughts on “Survivor Care Plans: What You Need To Know For You

  1. Let’s ask the cancer patient, what they can do to help themselves?

    They can request copies of important documents during and after close of their treatment. Some of these documents will be a copy of the initial consultation with the medical professional, whether they are medical oncologist, radiation oncologist, gynecologic oncologist or primary care physician. These documents can also include labs/blood work results, copies of Scans (including PET/CT and MRI’s). If we get the patient to get in the habit of requesting these documents and making a file for themselves, then we are halfway there. The patient will be able to take the medical file they have created to any other medical professional and show their history.

    Once you have patients accumulating medical documentation, they are more likely to ask questions of the medical professional and get the answers. They will also be more likely to go online and research the various medical terms and diseases etc., which can prove dangerous in itself. I think that once patients start this, then the care plan can become a reality, because patients will make it a reality.

    What about the side effects of the various drugs or treatments? Most patients don’t ask the doctor because they are not informed or are scared and want to get over the present treatment quickly. They don’t understand medical terminology and are so shocked with their diagnosis that they can’t always think clearly because they keep on saying “WHY ME!

    Lastly the patient must help themselves. It is very important that the patient feel good about themselves. When you have a cancer diagnosis, it changes your perspective. Again it is the WHY ME or how did this happen! Having had a cancer diagnosis twice in my life in the past 7 years and I face more tests in the coming weeks, I know that you must stay POSITIVE. A cancer patients ATTITUDE is so important, it can help or hinder you.

    Here are a few saying from Small Miracles Calendar. When I had my second cancer surgery, I asked a coworker for copies of her daily Small Miracles Calendar sheets. I read these every day and reread some of them. I posted the ones that mean’t the most to me on my wall and it uplifted me. Some are them are as follows:

    A strong positive attitude will create more miracles than any wonder drug – Author is Patricia Neal

    Once all struggles are grasped, miracles are possible. Author is Mao-Te-tung

    To be alive, to be able to see, to wlak, to have houses, music paintings – it’s all a miracle. I have adopted the technique of living life miracle to miracle – Author is Arthur Rubinstein

    When you’re half asleep, a small miracle can look just like a dull coincidence. -Small Miracles for Women

    Miracles often arrive at the moment we depart from fear and head for faith. – Small Miracles for Women.

    Why! Who makes much of a miracle? As to me, I know of nothing else but miracles. – Walt Whitman

  2. Carole Murphy’s acknowledgement of staying positive means a lot. My wife told me one time about her “attitude” in fighting her disease, “it’s 90% Faith and the Will to Live, and 10% the Art (not science) of Medicine.” Having said that, I believe in “measured” moral support and consider it important, but knowledge is power, and knowledge is going to be what makes the fight successful or not.

    ——-

    I like what the Medicare Modernization Act did with medical oncology. It tried to remove the profit incentive from the choice of cancer treatment, which were financial incentives for infusion therapy over oral therapy or non-chemotherapy, and financial incentives for choosing some drugs over others.

    ——-

    The Medicare Modernization Act changed how CMS paid for doctor-administered drugs to a system based on doctors’ costs for the drugs from one based on average wholesale price. The government wasn’t reducing payment for cancer care, it was simply reducing overpayment for cancer drugs.

    ——-

    Medical oncologists are now reimbursed under Medicare for providing evaluation and management services, making referrals for diagnostic testing, radiation therapy, surgery and other procedures as necessary, and offer any other support needed to reduce patient morbidity and extend patient survival. In other words, being paid to think rather than just dispense drugs.

    ——-

    This would enable the better coordination between specialists (medical oncologists) and primary care clinicans that Dr. Lictenfeld talks about, to ensure that all of the survivor’s health needs are met. The medical oncologist are being paid more for talking to and listening to patients.

    ——-

    According to “Cancer Medicine: Principles of Multidisciplinary Management; 6th Edition,” the medical oncologist usually serves the traditional role of internist in the multi-disciplinary management of cancer, where they have continuing responsibility that may stretch over months or years of therapy, and decades of follow-up, depending on the neoplasm.

    ——-

    This could or should include the primary care clinician, but the medical oncologist may also superintend the medical activities of the patient that are not addressed by the primary physician, together with general oncologic assessments that are of importance to the surgeon, radiation oncologist, medical oncologist, integrative specialist and the alike.

    ——-

    While Medicare tried to remove the profit incentive and let medical oncologists be physicians again, private payors may still go along with it. The new legislation started the process of providing access to a “full range” of modalities to enhance the quality and standard of treatment for cancer.

  3. Hi Dr. Len:

    I recently read on CNN that more and more internists and family physicians are turning from traditional practice, where they treat approximately 2,500 patients, to boutique or concierge practices, where patients pay roughly $1,500 a year for the privilege of having the physician limit the size of his or her practice to about 600 patients. Here is a link to the article:
    http://www.cnn.com/2008/HEALTH/09/18/ep.concierge.medicine/index.html

    Since approximately 1 out of 2 men and 1 out of 3 women will develop cancer during their lifetime, you can do the math to get a rough idea of how many of a primary care physician’s patients are or will likely become cancer survivors. Given these numbers, and the decreased number of new medical school graduates reported to be going into primary care specialties, I find it hard to believe that the experts about which your blog speaks have a realistic expectation that this proposal for survivor care plans will be met with success. I for one knew as soon as I read about this “survivor care plan” concept several years ago that it was unrealistic given today’s medical climate, and I am not the least bit surprised that, as you say, the idea “hasn’t meshed with the reality.”

    I strongly concur with Carole Murphy’s suggestion above about the need for cancer survivors to maintain complete copies of their own medical records. Since my endometrial cancer diagnosis and treatment 9 1/2 years ago, I have made it a practice to obtain copies of all medical tests and laboratory results, hospital records, and treatment notes. Obtaining these records has not only helped me learn more about my disease and enabled me to perform more precise research, but also resulted in my finding errors in my medical records. As just one example, the report of a CT scan ordered by my gynecologic oncologist stated that I had been treated for “metastatic cancer.” However, I knew that this statement was clearly wrong, not only from discussions with my oncologist about the extent of my disease, but also from having confirmed what my oncologist told me by reviewing the surgical pathology report. I was therefore able to have the erroneous information about the extent of my cancer removed from the CT report. This is no small thing, since, as you know, errors in one’s medical records have the potential for serious future negative consequences to the patient. It is therefore in every cancer survivor’s best interests to read and obtain copies of all treatment records and ensure that his or her medical records are complete and accurate.

    I for one am fortunate that I still regularly see my gynecologic oncologist more than 9 years after completing treatment. However, I consider myself ultimately responsible for implementing my own survivor care plan. I continue to educate myself about any new research developments pertaining to my cancer. I also make sure that I regularly see specialists who might detect other primary cancers that have some potential to be associated with endometrial cancer and the radiation treatment I received (for example, breast and colon cancers).

    Studies have shown that the patients who are most educated about their disease and involved in their own care have better outcomes. Being informed about your disease enables you to ask intelligent questions, which in turn causes your treatment team to think a little longer and harder about your case. I for one would not want to trust my survivor plan to a primary care physician who has 2,499 other patients on his or her mind.

    Best regards,

    Maureen Kanc

  4. Unfortunately, I was introduced to this disease unwittingly twelve years ago. I was a spouse/caregiver to a cancer patient and became intensely interested in it by virtue of working through, enduring and surviving my wife’s illness. With the discipline of a college education, the experience helped me to gather knowledge by virtue of voluminous reading and hundreds of hours of past and ongoing personal communication with noted authorities and experts in the field. I still keep in touch with many of them. The only way to make sense of losing the love of your life is to turn the tragedy into anothers hope. It is a voice that lives on and challenges an establishment of medicine that is indeed imperfect, but one that I hope will be receptive to change.

  5. These are all excellent comments, and much appreciated.

    Maureen, you are absolutely correct about the impending shortage of primary care physicians. There was a recent report that only 3% of medical graduates plan a career in general internal medicine.

    We are going to face a much different medical care process in the years ahead, and we are going to have to figure out some way of getting our information and our recommendations from one place to another.

    There is one thing we all agree on: an informed patient, who understands the need to understand their disease, is going to be a critical part of this environment. The old “let the doc take care of it” simply isn’t going to work in the future.

    Again, my thanks to everyone for reading my comments and sharing your thoughts. We all have much to learn from each other.

  6. Hi Dr. Len,
    I wonder if it is time to revisit this topic in light of health care reform etc. I heard from Dr. Rowland of the Office of Cancer Survivorship last week that a bill is in the works to make survivor care follow up planning a billable expense. In Minnesota our Cancer Alliance has just completed a survivorship care plan booklet written for the cancer survivor. We felt strongly that we needed to educate and empower survivors to be able to ask the right questions and understand what they needed to know to take care of themselves post-treatment. Thanks so much for your blog.

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