World J Surg DOI 10.1007/s00268-014-2599-7

How Much Information Do Patients Want or Need Jean-Claude Givel • Benedikt Meier

 Socie´te´ Internationale de Chirurgie 2014

Abstract Based on literature and personal experience, this paper address the question of how much information patients want or need prior to surgery. It underlines the importance of not only answering patients’ questions but also making them aware of information available, to help them go through this difficult process. Aspects such as obtaining a second opinion and use of the Internet are also covered.

Introduction Informed consent has become an important part of medical practice, as well as a legal necessity for investigative and surgical procedures. However, it is difficult to define how much and what kind of information is required to fulfill the wishes or needs of the patient to allow them to make a truly informed decision. The doctor and the patient usually have different opinions on what the latter wants or needs to know. Several studies have therefore examined what patients want to know before consenting to an invasive procedure. The aim of this paper, based on literature and the personal experience of the authors, is to clarify how much information patients want or need prior to a surgical procedure.

J.-C. Givel (&) Cabinet de Chirurgie Visce´rale, Lausanne 1004, Switzerland e-mail: [email protected] B. Meier Clinique de La Source, Anesthesiology, Lausanne 1004, Switzerland

Patient information The content of an appropriate informed consent is well established. Patients must be aware of their condition, of the reason they need surgery, and of alternatives to surgery. The different surgical techniques must be exposed, along with their advantages and risks. The most common complications, the time to recover, the approximate length of stay, the anesthetic technique with its complications, and pain management are also usual requirements. In 2005, the Agency for Healthcare Research and Quality created a booklet Having Surgery, What you Need to Know [1], to help patients by providing questions to ask primary care doctors and the surgeon before surgery, as well as reasons for asking these questions: • • • • • • • • • • •

Why do I need an operation? What operation are you recommending? Are there alternatives to surgery? How much will the operation cost? What are the benefits of having the operation? What are the risks of having the operation? What if I don’t have the operation? Where can I get a second opinion? What kind of anesthesia will I need? How long will it take me to recover? Making sure your surgery is safe.

With similar aims, the American College of Surgeons published leaflets with information regarding standard procedures (available in English and other languages). In 2008, the same institution published the book I Need an Operation … Now what? A Patient´s Guide to a Safe and Successful Outcome [2]. In a chapter covering the topic ‘What questions to ask the surgeon before an operation’, the extent and details about what patients should know

123

World J Surg

about the procedure are further elaborated. Questions to address include the following: • • • • • • • • • • • • • • • • • •

Why do I need an operation? What are the treatment options? Which treatment approach do you recommend? What are the risks and benefits? What results can I expect? Do you perform this operation regularly? What are your results? Will I need a blood transfusion? Will any transplanted tissue, grafts, implanted devices, plates, or screws be used? What do I need to know about them? How long will it take me to recover? What can I do to improve my chances of a good outcome? How will you perform my operation? Who else is on the surgical team? In what facility will you do the operation? What kind of tests will I need before the operation? Will I need to make advance arrangements for care or therapy after the operation? Will you visit me in the hospital after the operation? How much will the operation cost, how will the costs be billed, and what kind of insurance coverage do you accept?

Another important question, mainly in academic centers with surgical training and fellowship programs, is, ‘Who will perform my operation; you or a resident?’ Further explanation is then required, explaining in detail the scope of the resident´s work and the attending surgeon´s supervision. This issue should be completely clear and the patient guaranteed that the surgeon in charge will be present through the whole procedure and responsible for the completion of the checklist. Information should be given in clear, concise, and intelligible words. Socio-economic and cultural background must be taken into account when choosing explanatory terms. The representation of illness may vary widely, depending on the patient’s education and origin. The assistance of a translator should be encouraged if the patient’s understanding of the doctors’ language is insufficient. Most patients desire written and verbal information. Ideally, information should be given twice: at the surgeon’s office and on the day of hospital admission or surgery. Written information alone is accepted by less than 5 % of patients [3]. Schematic drawings and/or video-assisted explanations produce a high level of satisfaction and enhance knowledge and understanding of the procedure and even information recall [4, 5]. Furthermore, this approach is less time consuming [6]. Patients with lower

123

levels of education may benefit more from video-assisted information. Contemporary society is accustomed to modern forms of information, but individual sensitivities must be taken into account when producing live videos. Messages should be easy to understand and short. Interestingly, some studies have shown that patients do not necessarily want exhaustive information and that if a written consent form is too complete, it may not be read in its entirety [7]. Why not simply ask the patients what sort of information they want? Few studies have directly asked patients which information they desire. However, for parents whose children must undergo surgery, the desire for information is very high. Details on the surgical procedure with its benefits and potential drawbacks, as well as anesthesia technique, induction, emergence, and postoperative recovery must be addressed. Recent research in the domain of anesthesia, with numerous contradictory publications in lay magazines, forces discussion on the effects of general anesthesia on the developing brain [8]. In the general adult population, there is important variability in information requirements. Roughly 90 % of people wish to be informed on the most common complications, 80 % on rare but major complications [3]. Population specifics, such as education, origin, age, social environment, and psychological health, as well as outcome related to the disease and the planned surgery must be taken into consideration [9]. Representation of illness and surgery differ widely between specific ethnic groups, as well as between city and rural populations. Comprehension and memorization are facilitated by a higher education level or when the level of pre-consent knowledge is high. The elderly population tends to ask for less information and to trust their physician, as long as a favorable clinical relationship has been established. A standardized consent form without verbal information fitted to the patient’s personality and specificity will not satisfy the needs of most patients. Therefore, an information-on-demand model seems to be more appropriate, as presented by Siegal in 2012 [10]. Future expert recommendations should therefore catch up with practice rather than vice versa, as Mendick et al. [11]. stated in 2011. Anxiety is another important point to consider. However, evidence on this topic is sparse. A recent Swedish survey showed that anxiety as a result of a thorough discussion of possible complications seems to lead 20 % of patients to prefer not to be informed on such events [3]. A Cochrane review, including almost 10,000 patients in heterogeneous prospective trials analyzing anxiety as a secondary outcome, did not show statistically significant differences between the patients’ anxiety state or the anxiety generated by the consent process [12]. Physicians often assume that an exhaustive presentation of complications

World J Surg

represents a major source of anxiety. Some studies seem to show that information is wanted regardless of anxiety generated and is effective in decreasing anxiety [13]. Information on complications is therefore surely required, but it seems to be the physician’s role to identify those patients needing a less anxiogenic approach. The information process for cancer patients before oncological surgery is orientated towards mid- to long-term disease-free outcome. Information demand on surgical and anesthetic aspects is therefore often less important for this specific group of patients. Constant development in medicine must also be considered when talking to patients. They are aware of innovative techniques and robotic surgery and need to know which benefits and risks they might expect when opting for a modern approach. There is a need for guidance to help patients decide on a new technique. Last but not least, they also want to know if the surgeon is confident with it [14].

and anesthesiologists will have to communicate and transmit a unique message, a difficult task, considering the traditional separation mounted in the operation theatre and transposed to their everyday behavior. Joint communication on the type of surgery, which is often only partially known and understood by the anesthesiologist, and the type of anesthesia, which unfortunately is not a point of concern for surgeons, will improve patient information and lessen confusion created by contradictory statements. An effective solution might be to use the same written consent form at the anesthesiology and surgeon’s visits, with specific fields to be completed sequentially by each of them. Apart from avoiding deleterious triangular information, it would help both doctors to have better and safer pre-operative knowledge of what the other is really planning.

Second opinion Internet The Internet has become an important source of information for patients. More than half inform themselves on their condition by searching the Internet. Documents, videos, and comments on surgical and anesthesiology procedures, as well as on complications, are easily accessible. Preexisting anxiety and emotional distress related to a recently diagnosed illness may focus attention on dramatic illustrations of complications. Information may not be adequately filtered, and false interpretation may result. Insufficient educational level contributes to misinterpretation of information and to confusion. The surgeon’s duty is to identify such patients and help them find what is really appropriate to their condition. A major future challenge will be to deal with the Internet as an information tool. Hospitals, surgeons, and physicians will have to produce appropriate information and make it freely accessible via the Internet to patients. The clear purpose is to adequately inform, prevent confusion, and satisfy the patient’s needs.

Joint information A joint surgical and anesthesiology consultation would facilitate the information process. To our knowledge, actual models mainly offer sequential surgical then anesthesiology visits on same-day pre-operative visits. The anesthesiologist may complete information or even contact the surgeon for clarification of aspects of the surgery that the patient was unaware of or had no time to address beforehand. The introduction of a joint visit would be an improvement, but seems to be difficult to realize. Surgeons

Patients should also be aware of the opportunity to get a second opinion before an invasive procedure or surgery. When informing the patient, especially when anxiety and doubts exist about whether the operation should be performed, or if the doctor recommending the operation is not a qualified surgeon, the patient should be informed that a second opinion might help in making a decision. The opinion might offer further information or, when in doubt, confirm what the first doctor has said. Patients may be leery or too embarrassed to ask for a second opinion when they are considering surgery. It is therefore important to inform them that there is no reason to feel uncomfortable with this process and that obtaining as much information as possible prior to having surgery is the best way to make the right decision. The patient should also be told that if their surgeon is upset by their decision to obtain a second opinion, the patient should not take it personally. Doctors should also mention that a second opinion is considered important enough for many insurance companies to pay for it for medically necessary surgeries. Some will even pay for a third opinion if the first two surgeons have differing opinions.

Conclusion Patient information before an invasive procedure represents an inescapable routine step towards anesthesia or surgery. Furthermore, research has shown that people who are well informed about their treatment options enjoy a better outcome and are more satisfied with their results.

123

World J Surg

However, knowing how much information the patient needs or wants and how to evaluate the extent of their understanding is still a matter of debate. When talking to a patient before surgery, it is easy to define the normative aspect of required information to be disclosed. But it is far more difficult to know what patients want or need in order to make grounded decisions. A good way to define the latter might be to refer to an important question sometimes asked by patients at the end of a preoperative informative discussion: what would you do, doctor, if you were in my place? Patients’ understanding and memory for medical information belongs to the reality of explaining the meaning and the characteristics of a surgical procedure. Anxiety and distress increase the difficulty of such discussions. This should influence the way a patient is informed in such a difficult situation. Should it be spoken, written, or nonverbal? Poor patient recall of verbal pre-operative information is well documented and this explains why a majority of patients want written pre-operative information. A standard written information sheet may also be the best medium by which to mention rare complications, leaving time for the surgeon to verbally discuss the particular risks and postoperative expectations pertaining to that particular patient. Ideally, anesthetist and surgeon information should complete each other via a shared document. In terms of obtaining a second opinion, the information should ensure patients understand that it would be highly unlikely for their surgeon not to obtain such an opinion if it was his or her own health at stake. Doctors often see the process of obtaining informed consent as difficult and complex, and this view is lent support by changing standards. However, the principles are relatively clear and benefit both patients and doctors. A fully informed patient is much more likely to adapt to the demands of a surgical intervention, and, should a complication occur, they almost invariably accept such misfortune far more readily.

123

References 1. Agency for Healthcare Research and Quality (2005) Having surgery? What you need to know. Questions to ask your doctor and your surgeon. AHRQ Pub No. 05(06)-0074-A 2. Russell TR (2008) I need an operation … now what? A patient’s guide to a safe and successful outcome. American College of Surgeons, Montvale 3. Burkle CM, Pasternak JJ, Armstrong MH et al (2013) Patient perspectives on informed consent for anaesthesia and surgery: American attitudes. Acta Anaesthesiol Scand 57:342–349 4. Farrell EH, Kinnersley Philips K et al (2013) Systematic review and meta-analysis of audio-visual information aids for informed consent for invasive healthcare procedures in clinical practice. Patient Educ Couns 94(1):20–32 5. Nehme J, El-Khani U, Chow A et al (2013) The use of multimedia consent programs for surgical procedures: a systematic review. Surg Innov 20(1):13–23 6. Goldberger JJ, Kruse J, Kadish AH et al (2001) Effect of informed consent format on patient anxiety, knowledge, and satisfaction. Am Heart J 162(4):780–785 7. Asehnoune K, Albaladejo P, Smail N et al (2000) Information and anaesthesia: what does the patient desire? Ann Fr Anesth Reanim 19(8):577–581 8. Wisselo TL, Stuart C, Muris P (2004) Providing parents with information before anaesthesia: what do they really want to know? Paediatr Anaesth 14(4):229–307 9. Giampieri M (2012) Communication and informed consent in elderly people. Minerva Anestesiol 78(2):236–242 10. Siegal G, Bonnie RJ, Appelbaum PS (2012) Personalized disclosure by information-on-demand: attending to patient’s needs in the informed consent process. J Law Med Ethics 40(2):359–367 11. Mendick N, Young B, Holcombe C et al (2011) Telling everything but not too much: the surgeon’s dilemma in consultations about breast cancer. World J Surg 35(10):2187–2195. doi:10. 1007/s00268-011-1195-3 12. Kinnersley P, Philips K, Savage K et al (2013) Interventions to promote informed consent for patients undergoing surgical and other invasive procedures. Cochrane Database Syst Rev 7:CD09445 13. Betti S, Sironi A, Saino G et al (2011) Effect of the informed consent format on patient anxiety, knowledge and satisfaction. Am Heart J 162(4):780–785 14. Lee Char SJ, Hills NK, Lo B et al (2013) Informed consent for innovative surgery: a survey of patients and surgeons. Surgery 153(4):473–480

How much information do patients want or need.

Based on literature and personal experience, this paper address the question of how much information patients want or need prior to surgery. It underl...
158KB Sizes 0 Downloads 3 Views