Men diagnosed with low-risk prostate cancer can choose between various treatment options that are similar with respect to disease-specific survival but differ in terms of side effects [2, 8, 9]. Surgery and radiation therapy may, for instance, impact continence, potency, and bowel function, while active surveillance may cause anxiety and distress due to living with untreated prostate cancer [5, 10, 11]. Informing men on the advantages and disadvantages of suitable treatment options enables them to exercise their right of self-determination, i.e., to govern themselves without outside interference.

Providing treatment information to patients is the basis for informed consent. The American Cancer Society describes informed consent as a process that includes several steps, one of them being the receiving of information about the possible risks and benefits of treatment and the receiving of information about the risks and benefits of other options, including the option of not getting treated. In the United States, informed consent is an important patient right that is embedded within both national and state’s law. The way information should be given may be listed in the state’s laws and therefore can vary per state. In Canada doctors have a duty to treat with a reasonable degree of care, skill, and knowledge, but it also extends further and includes the obligation to provide sufficient information therewith allowing patients to make intelligent, informed, and rational decisions with respect to the proposed medical treatment [12]. The four elements required for informed consent are included in the Ontario’s Health Care Consent Act : (I) consent must relate to the treatment, (II) consent must be informed, (III) consent must be given voluntarily, and (IV) consent must not have been obtained through misrepresentation or fraud. A consent is said to be informed if a person received the information about the nature of the treatment, the expected benefits of the treatment, the material risks and side effects of treatment, and the likely consequences of not having the treatment a reasonable person in the same circumstances would require in order to make a decision. If requested, additional information about one of these matters should have been received as well [12]. In England the “NHS constitution for England” contains an informed choice right, stating that patients “have the right to be given information about the test and treatment options available to them, what they involve and their risks and benefits.”

In the Netherlands, the information right is embedded within the Medical Treatment Contract Act (WGBO), article 7:448 Dutch Civil Code. This article states that the physician has to provide information on the intended medical actions, treatment, and the patient’s current health status. The information provided has to be clear, relevant, and adjusted to patients’ educational level [13]. The information right enables patients to make a well-informed decision on whether or not to provide informed consent on starting the proposed treatment. If information is not provided in whole or in part, this may lead to the situation where a patient is not, or only partly, able to use his right of self-determination. This then may lead to the situation of the patient making a choice he would not have made, had he been well-informed upfront [13]. In addition to the information about treatment itself, in the Netherlands a discussion is ongoing on whether the physician has to provide information on how successful he has been in completing certain procedures and/or operations. The current point of view encourages an open and transparent discussion if the patient asks his physician directly, but providing the patient with statistics upfront is not necessary [14].

In Germany, patients choosing between treatment strategies have to be fully informed by their doctors as well, because only a fully informed patient can rightfully exercise his right of self-determination and provide informed consent on one of the treatment options. Providing comprehensive information entails regarding the treatment options as each other’s equivalent. This is the case when, for instance, radical prostatectomy, radiotherapy, and active surveillance all likely lead to success, while the risks associated with the procedures may be different but comparable in weight. Treatment options should then be presented to the patient alike, while the physician is withholding any personal preferences that may guide the patient into a certain direction. The physician informing the patient has to be aware that recommending either one of the treatment options holds risks. The physician may not make the treatment decision for the patient when options are equal. He may be inclined to do so but then bears the risk of being accused later on by the patient saying that the decision for active surveillance was wrong. The patient may demand compensation for his pain and suffering and because he was advised wrongly. If this occurs, the physician runs into the risk – at least from a legal perspective – that the informed consent was invalid, as it was not preceded by comprehensive and unbiased information on all treatment options. If the consent must be classified as invalid for this reason, the physician is liable for all health impairments resulting from the advised procedure – even if the side effects in itself were a consequence of medical behavior lege artis [15].

Patient-physician communication is a key element in the active surveillance monitoring strategy . At the same time, communication between a patient and physician is a common source of patient dissatisfaction, and communication failures are strongly correlated with medical malpractice litigation [16–20]. Common predictors of medical malpractice claims are the physicians’ inability to clearly communicate with a patient, to disclose both risks and benefits of treatments properly, and to answer patients’ questions [21–23]. Levinson et al. assessed communication patterns between those physicians who did not experience malpractice litigation before and those who had previously been sued. They found that physicians who had been sued previously tended to demonstrate poorer communication skills and were less likely to start up helpful interactions with patients [23].

That good communication may avert litigation is shown in one of the worldwide active surveillance cohorts in which men whom their prostate cancer has metastasized while on active surveillance have accepted this outcome. From personal communication with the treating physician, it has become clear that he has been open to his patients from the start, explaining that it was a scientific study they were participating in with both risks and potential benefits. Open and honest communication led to transparency for both the treating physician and the patient, resulting in a good patient-physician relation in which the risks of participating in a scientific study are accepted.

There are two principles regarding communication that are important to patients: (1) the need to know and understand which demands instrumental communication from the physician (giving information and advice) and (2) the need to feel known and understood which demands affective communication from the physician (showing empathy and providing emotional support) [24]. Physicians should master certain basic communication skills as these are the basis for effective communication. And effective communication in its turn determines, to a large degree, the quality of healthcare [25]. Physicians may use the Calgary-Cambridge model to guide the patient-physician communication process. How we communicate is just as important as what we communicate [25].

Men diagnosed with low-risk prostate cancer face a preference-sensitive decision, as no single treatment (active surveillance, radical prostatectomy, and radiation therapy) is uniformly superior in terms of survival [30]. Side effects, however, vary considerably among these treatment options. Therefore, shared decision-making is recommended by the European Urological Association (EAU) , the American Urological Association (AUA) , and the National Comprehensive Cancer Network (NCCN) . Shared decision-making refers to the process in which a patient and health professional strive to reach a healthcare choice together. High-quality shared decision-making demands that patients understand available treatment options and potential adverse outcomes of these treatments and that they have the opportunity to consider their personal values when evaluating treatment options [30]. Therefore, shared and informed decision-making are highly related, as effective shared decision-making can only be done if a patient is fully informed of the treatment options (more information on shared and informed decision-making can be found in Chap. 15).

As mentioned above, shared decision-making for low-risk prostate cancer is incorporated into several guidelines (EAU, AUA, NCCN). Furthermore, the Patient Protection and Affordable Care Act includes several sections emphasizing shared decision-making in preference-sensitive decisions [31].

Sharing a decision can be difficult. Loeb et al. examined the motivations behind physician decision-making in relation to active surveillance monitoring practices in the United States [32]. Loeb and colleagues interviewed 24 physicians , until thematic saturation was reached. Eight themes could be distinguished that explain the variation in active surveillance monitoring and reveal the motivations of physicians in offering active surveillance: (1) physician comfort with active surveillance, (2) protocol selection, (3) beliefs about the utility and quality of testing, (4) years of experience and exposure to active surveillance during training, (5) concerns about “inflicting” harm – including medicolegal concerns – (6) patient characteristics, (7) patient preferences, and (8) financial incentives [32]. Physicians stated that they try to adhere to shared decision-making and taking into consideration patient preferences. Whether a decision is truly shared, however, is dependent upon more characteristics. Recent research by the Dutch Patient Federation NPCF among 8.200 Dutch patients showed that only 37% of patients were offered more than one treatment option and were involved in the decision-making process versus 63% of patients who were offered a single treatment option or were not involved in the decision-making [33].

As said, sharing a decision can be difficult. Expert assumptions about patients’ roles and responsibilities often do not reflect patients’ experiences or expectations [34–37]. Still, many patients prefer to share a healthcare decision with their treating doctor, although individuals do vary in how much they wish to concern themselves with the relevant evidence [33, 37]. Decision aids may be of help in the decision-making process. In a systematic review, Durand et al. found that simulated scenarios suggested that documenting the use of decision aids or other decision support interventions in patients’ notes could offer some level of medicolegal protection [21].