Cancer patients anxiety & full access to medical records
For quite some time now I wanted to write about a recent research I read about in an article in Reuters by Genestra Pittman: whether access to medical records increases cancer patients’ anxiety. According to a new study by French scientists of the Paoli-Calmette Institute, when cancer patients get full access to their medical records their satisfaction with the treatment increases, without increasing their anxiety.
I consider this research, the first on this specific issue, as very important, as it helps to abolish health professionals arguments that patients prefer not to be fully informed about their condition. Determining how much information and when to deliver it is at the center of ongoing discussions among health professionals, while patients and more particularly, knowledgeable, expert patients, e-patients request full access to their data and an open frank information by their health care professionals to help them make decisions about their health.
«Cancer patients who were given full access to their medical records at the beginning of treatment said the records helped them understand and discuss their disease with others, and they weren’t any more anxious than other patients in a new study from France.
While there has been a trend toward increasing patients’ access to their own medical information, some doctors fear that giving full records to patients will increase their anxiety, the authors note in the journal Cancer.»
Allowing full access to personal medical records increased satisfaction without increasing anxiety in patients with newly diagnosed cancer.»
Increased levels of “undue” anxiety in newly diagnosed or metastatic cancer patients is exactly the argument most Greek oncologists use for not fully informing their patients and withholding important information about their options, medicines, adverse events, long range implications of the various therapeutic options. They argue that complex medical information is difficult and that it will take a very long time to be properly explained in tight clinical schedules and that moreover, it is not only difficult to understand but also limited in the great majority of patients, due their low socio-economic and demographic characteristics. Besides, physicians argue that cancer is a disease patients fear so much, as it is generally conceived as a “deadly” disease and therefore, more than often they don’t want detailed information about their condition. It cannot be denied that people but also mass media do not even call it by its proper name “ cancer”, preferring other popular euphemisms e.g. the “bad disease”, the “disaster”, etc..
Greece is among the first European countries to have established, already in 1992 (Art. 47-L. 2071/1992) legislation on patient rights. Specifically, article 47 stipulates that patients have the right to request information and the right to complete & accurate information. Moreover, same duties are assigned to physicians in the Code of Medical Deontology (Law 3418/2005) in art. 8 “Medicine as a relationship of trust and respect”, art. 9 “Obligations of the medical doctor towards the patient” and art. 11 “The obligation of information”. (for more info on patient rights in Greece, see my presentation http://bit.ly/qJxKTM).
In Greece we do have a legal framework that clearly and in detail defines the obligations of the physicians to fully and clearly inform patients about their disease, and the rights of patients on complete and accurate medical information about their condition. Moreover, patients can request and get a copy of their medical records (not imaging records as public hospitals do not have yet modern equipment for offering imaging records on cd, only written documents and also blocks/samples of their tumor) kept by a physician, diagnostic center or hospital.
On the other hand, is legislation sufficient to guarantee that patients are fully and accurately informed by their physician at the time of diagnosis? Being a twice breast cancer survivor myself, and having experience from other medical cases in my life, my answer is no. Physicians either will just bluntly tell you that you have cancer, you must have an operation and ask you on the spot for a convenient date for the operation or they will come around the truth with vague allegations about taking care of your emotional upset and announcing to the patient a diagnosis in vague terms, not really explaining what the disease is, what all the patient’s options are and far less caring about the patients preferences….
I have rarely met a doctor who would calmly explain my condition, inform me about the available therapeutic options, ask my preferences and any other health problems I might have and how I feel about them, and help me select the most appropriate course of action for me. What in reality happens is that the physician, in the ten minutes medical appointment, presents to the patient the only therapeutic option he knows best, or is more at ease with for the particular disease and presents it to the patient. Often, the patient is not able or facilitated in making sense and arrive at a decision for the proper course to follow, even if he opts for a second opinion….It happens that a patient may visit three doctors in a row for the same ailment in search of a second/third opinion, but all he will hear is the only preference of the physician, so he may hear three different therapeutic approaches in the same day, and he/she , as patient, will have to decide who of these three doctors has the right solution for him/her…
Physicians fail to understand that anxiety rises not from what you know but from the unknown in patients with critical disease. If patients are given complete information and the time to “digest” it, to discuss it with their loved ones, further read and get informed about it, communicate with other patients with the same disease, anxiety may not go away, but it is reduced and it can be handled. Knowledge of the situation and of available options arm the patient to better face difficult medical procedures and for better cooperation with his/her medical team.
It’s a mystery to me why physicians squarely refuse to even discuss this type of issues with patients and carers. Are they also afraid by the realization of the power that truth has? Are they also, as humans, scared by the death shadow that every cancer diagnosis might bring with it? Do they feel uneasy and afraid to deal with the feelings of patients to whom a difficult diagnosis is announced? It is true though that in most countries, physicians are not trained in the most important part of the profession: the patient-doctor communication. It is not taught and if it is, it is an elective or a subject with very few teaching hours and no workshops.
Have the physicians, as medical students or interns, ever attended a seminar or workshop, in which a patient tells them about his feelings during a critical diagnosis, what he expects from his doctor when he communicates to him/her a diagnosis and discusses therapeutic options? Have physicians, medical students or interns ever asked themselves how patients, alone, make sense of a cancer diagnosis and of the course to follow? Has it ever crossed their minds that it is their duty to help patients make a decision, offering them all the information they need about their disease and therapeutic options? Have they ever seen the patient as A PERSON and not as a disease, have they asked him/her about his/her preferences, how disease affects his/her life?
I am sure that if physicians allowed themselves to ponder over these questions and put themselves in the position of the patient, change in how medicine is practiced could seriously start…. My personal experience does not differ from that of the thousands of cancer patients. After my second breast cancer, the oncologist just handed me a prescription for tamoxifene, telling me that I should take this drug for five years and that this drug was the golden rule for patients with my type of cancer. He did not bother to ask me how I felt about taking a potent drug with many adverse effects, about any other health problems I might have, which might interfere with this drug neither inform me about any screening I should perform during these five years to check whether this drug had impact on other organs or bodily functions….
It was 2001, and I was already an expert patient and internet user, so after reading the info to patient, I searched Pub-Med for research on adverse events from tamoxifene. I took those to my oncologist who of course, laughed at me reading “silly internet stories” (Note: when he reads and use in his medical practice this same information, it is not “silly”) and dismissed me insisting that I start immediately my therapy, as everybody else… But, I am not, and no patient, is “everybody else”…
Hopefully, my late gynecologist to whom I explained my concerns about going for 5 years on that drug, took them seriously and prescribed regular screening for the necessary blood tests (I had already hypercholesterolemia) and an I/U ultrasound (tamoxifene may provoke DVT-deep vein thrombosis and uterine cancer)…..Needless to say that the oncologist refused to validate the test referrals I had from the gynecologist (so that they were refunded by my social insurance fund) on the grounds that these were not mentioned in “EBM breast cancer guidelines”…Finally, the drug was interrupted by my gynecologist due to alarming adverse events … after 4 1/2 years… Much later in 2008, on the occasion of a thorough exam for Hypercholesterolemia (presence of high levels of cholesterol in the blood), the hematologist told me that I was lucky to have had an uneventful 4,5years on tamoxifene….as my blood tests showed a tendency to DVT..
Should the oncologist had explained to me, all about the adjuvant therapy, why he was prescribing tamoxifene, what my other options were, what the risks for taking “tamo” were, had he cooperated with me and looked at the statistics and explained MY RISKS, asking me about my family and personal health record, indicating and prescribing the necessary screening to monitor the therapy, I would have not passed four and half years in anxiety, spent a lot of money in tests not covered by my insurance and would be spared of medical procedures caused by the adverse events…..
Indeed, things have changed since 2001, but very little regarding how doctors understand information to cancer patients, they still consider themselves as the holders of the key to information box….. Patients on the other hand, have started to become internet-savvy, research their symptoms and diagnosis or disease, communicate offline and online with other patients (should I mention here the very well educated about their disease ladies on the breast cancer listserv of http://www.acor.org or the lady who commented on a post of my blog asking for information for IBC-inflammatory breast cancer?), to exchange information on drugs, hospitals, expert doctors.
This research on the anxiety of cancer patients when they are offered full access to their medical record is the first of its kind and definitely further research is needed. As many may react that the situation is very different, outside the controlled environment of the research cohort, i.e. in the “average” oncology hospital, with “average” health professionals and cancer patients, newly diagnosed and with metastatic disease, I quote the closing phrase of the research
«…further evaluations need to be carried out on larger cohorts in a multicenter setting, including all types of cancers and in the context of more advanced disease. Moreover, future studies need to be implemented in the context of the electronic medical file, which provides patients with secured, direct access to their records, even from home. This would avoid both documents classification and time for collection issues.”