Opening Case Study
Charma had always thought it was normal to feel achy and tired, until she began to feel so debilitated that she scheduled an appointment with her physician, Dr. Lopez who, in turn, sent her for additional testing. She sat down with Charma and went over the test results with her, and then gave her a diagnosis of a condition that Charma had never heard of. Tory, Dr. Lopez’s nurse, was also present.
“You have fibromyalgia, Charma. It is a chronic condition that causes the joint pain and the fatigue that you’ve been experiencing. Do you know anything about it?”
Keep in Mind: How would you be feeling if you were suddenly diagnosed with a condition that you had not previously heard of. What would your main concerns be? How would these concerns affect your willingness to become informed?
Charma didn’t know what fibromyalgia was, even the name sounded scary. “Am I going to die?” she asked.
“No,” Dr. Lopez said. “We are going to try a medication that has been helpful with other patients with your condition. It may help you, too. Tory and I are going to talk to about ways that you can adjust your life to live with this condition. It’s going to take some work on our part and on your part.”
“Okay… I guess,” Charma answered. She wasn’t sure if she wanted to know anything else. After all, at 27, she had a lot of plans for her future that didn’t include being chronically ill.
Dr. Lopez explained to Charma what fibromyalgia was, how it developed and the kinds of changes she might have to make in her life. Tori talked about some changes she would need to consider to accommodate the limitations caused by her condition. Charma listened, but was too overcome by shock to understand everything that Dr. Lopez and Tori were telling her.
“Do you have some questions for us?” Dr. Lopez asked.
Keep in Mind: Newly-diagnosed patients often find it difficult to listen to information when they are trying to cope with the emotional reactions to their condition. If you were in the position of Dr. Lopez and Tory, what would you most want Charma to know about her condition before leaving his office?
“I should have a lot of questions,” Charma answered. “But I don’t know where to start.”
“I know this is a lot for you to hear,” he said. “I don’t expect you to do anything more than listen. But I have to tell you that the best way for you to live with fibromyalgia is to be an educated patient, so you’ll understand your own symptoms, what to watch out for, and how to adjust to some of the limitations that fibromyalgia patients experience. Knowledge is power.”
“I understand,” Charma answered.
“I’m going to ask you to sit down with Tory and go over some pamphlets that we have. She’ll also review the medication schedule with you. Tory is a great resource. In fact, I think she’s an expert on helping patients live with fibromyalgia. She’ll even suggest some Websites you might want to visit. Does that sound like a plan?”
“I guess so,” Charma answered. But she wasn’t convinced she wanted to know any more about fibromyalgia than she already did.”
Keep in Mind: Tory, Dr. Lopez’s nurse, may find Charma to be a challenging patient. How would you prepare yourself to help her begin the process of learning more about her condition?
Introduction
“I don’t know how much information I can handle.”
Newly-diagnosed patients are inundated with new information at a time when they are not in a good position to process it. Emotionally, they are dealing with the shock of the diagnosis and dealing with their emotional reactions. This makes it difficult to listen to, or read, information about their condition. Furthermore, if expected to learn about a condition with which they are unfamiliar, the sheer volume of information, with or without the difficult emotions they are facing, is most likely difficult to wade through and make sense of. It is ironic that, at this difficult time in their lives, newly-diagnosed patients are expected – and indeed, need – to learn about a medical condition and its treatment, a condition that may be mysterious and confusing, as well as frightening. This information will be essential as they make treatment decisions and move forward with lifestyle management. Newly-diagnosed patients in Fight reaction are most likely to become educated about their conditions and treatment, while those in Flight and Freeze reaction are likely to be selective in what they are willing to learn, or resistant to any information.
Healthcare professionals benefit when their newly-diagnosed patients are educated. Patients need to make informed decisions about treatment, and they can only do this if they understand their options, and the implications of their decision. Educated patients are also more likely to understand the reasons behind the recommendations that healthcare professionals make and, consequently, to be compliant with their treatment. Furthermore, while the facts can be scary to
newly-diagnosed patients, patients who don’t have the facts will be more likely to make assumptions that will potentially increase their fear and result in greater resistance.
Healthcare professionals can play a valuable role in helping newly-diagnosed patients to become more active information-gatherers. They do this through encouraging information-gathering behaviors, offering suggestions for relevant information-sources, and helping patients to make understand and make use of this information.
Barriers to Information-Gathering
There are a number of barriers that newly-diagnosed patients may raise against gathering information about their condition. These barriers are the result of irrational beliefs about how learning more about the condition may be harmful rather than beneficial. These beliefs are related to the emotions that patients are experiencing, or avoiding, and they reflect concerns about being able to understand and make use of this information. These barriers are described below.
Figure 7-__
Illustration or photo of a patient holding his/her hands over their eyes.
“It’s probably better to read as little as possible about this.”
The fear factor is a major barrier to information-gathering. Newly-diagnosed patients, at least initially after hearing their diagnosis, may want to avoid information out of fear that what they learn will increase their fears around the condition, or out of a desire to avoid other uncomfortable emotions. They may be concerned that they may learn that the condition might have been avoided, which may lead to guilt. The role of heredity may cause anger, however misplaced, at family members. Information about further progression of symptoms, or the side effects of treatment, may increase the sense of helplessness. In other words, ‘ignorance is bliss,’ or at least it is avoidance of further despair.
Specific types of information that newly-diagnosed patients want to avoid includes:
- Factors in developing the disease that may indicate that lifestyle choices or heredity play a role
- Treatment options that indicate a decision which the patient feels unprepared to make
- Length and side effects of treatment that are inconvenient and frightening
- Ongoing lifestyle requirements that may lead to major changes
These concerns may prevent a patient from listening to, or independently gathering, information regarding the condition and its treatment temporarily or indefinitely. Some patients arrive at the point of readiness faster than others, depending on how they deal with their emotions, support from caregivers, and the interventions of healthcare professionals.
“I feel like the other shoe is about to drop.”
Newly-diagnosed patients may feel a sense of impending doom regarding their diagnosis. While the reasons for this sense of doom are obvious when the condition is catastrophic, or potentially catastrophic, the sense of doom may also extend to acute or chronic conditions. For example, a patient may feel that treatment for an acute condition will require a recovery period that will disrupt his/her life in ways that will be uncomfortable and disruptive, and cause them to appear less than normal to themselves and others. Regardless of the severity of the condition, newly-diagnosed patients may avoid information out of concern that they will read something that confirms their greatest fear or otherwise leaves them feeling helpless.
Figure 7-__
An illustration of a patient being protected by the ‘positive thinking police’
“My positive attitude will go away.”
Newly-diagnosed patients, especially those in Flight reaction, can carry the need to have a positive attitude to an extreme. While having an attitude of optimism can be helpful when coping with the challenges of medical treatment, positive thinking can be a form of denial. By insisting on staying positive, newly-diagnosed patients may also avoid acknowledging the serious of their condition, the urgency of treatment, the need for making major lifestyle changes, and the emotions that are associated with their diagnosis. They may tell themselves that if they ‘stay positive,’ they can avoid dealing with their diagnosis and – out of superstitious thinking – believe at some level that a positive attitude will make the diagnosis go away. Patients may feel – also a result of superstitious thinking – that information-gathering is a sign that they don’t trust their physician and their treatment and this will somehow interfere with its success.
When a positive attitude is being used as a form of denial, this will be evidenced in how willing, or unwilling, a newly-diagnosed patient is to explore information regarding the condition and its treatment. The patient will express concerns around encountering information that is ‘negative’ and that would consequently place their positive attitude at risk. They may also feel that they are doing their physicians and other healthcare providers a favor by avoiding information that might result in their feeling less optimistic about, and therefore less trusting of, their treatment.
“If I don’t know about it, it can’t happen.”
Superstitious thinking may extend to the mainly subconscious belief that not knowing about aspects of the medical condition or its treatment can prevent them from occurring. Newly-diagnosed patients with this belief essentially fear that they can cause something to happen by thinking about it too much, e.g. ‘think myself sick.’ This concern often arises in discussions of potential symptoms of the condition as well as side effects of treatment.
Figure 7-__
Illustration of a patient looking at a computer screen with a thought bubble filled with medical terms followed by question marks
“Medical information is too confusing.”
Physicians and other healthcare providers may inadvertently provide newly-diagnosed patients with information about their conditions that is too technical, with medical terminology that is hard to comprehend, confusing, or frightening. Patient literature may also be confusing. Sources of information on the Web can be overwhelming to patients for a range of reasons. Patients may encounter conflicting information among different Websites. They may not be able to determine which Website sponsors are trustworthy and which ones are not. Patient-generated content may be filled with factual errors or be irrelevant. Furthermore, the sheer number of Websites dedicated to health-related information and, focused on one specific condition, can result in a patient feeling overwhelmed with information.
Information overload can be especially harmful to patients who are exploring a condition for the first time. Not knowing where to begin – both in terms of the basic questions they would benefit from answering first, as well as the most reliable sources for this information – they are at risk for finding themselves lost in a forest of information. After one or two experiences in this situation, patients may decide against information-gathering altogether.
Additional Factors in Readiness to Gather Information
While beliefs have a impact the information-gathering behaviors of newly-diagnosed patients, so do other factors, as described below:
Patients in Fight Reaction
Patients in Fight reaction are often enthusiastic information-gatherers because they want to know as much as possible about their conditions and related treatments as a basis for making informed decisions. Fighters may need some guidance on where to begin their information-gathering but, beyond that, they are motivated to search on their own.
Gender
Traditionally, women are more involved medical consumers than are men, and this often extends to information-gathering. (REFERENCE) Women are also often the lead information-gatherers for ill parents, children, and spouses as well.
Age
Overall, younger and middle-aged adults are more likely to be active information-gatherers than are older people. They also come from a generation that is more likey to question those in authority, including healthcare professionals, and to take more responsibility for their own healthcare. They view information-gathering as a means of achieving independence. Older people come from a generation when patients unquestioningly trusted their physicians and looked to them for information and advice. Older people are also less likely to be active Internet users, though there of course many exceptions to this as older people also become more computer-literate. And as boomers age, they will continue to be active information-gatherers.
Multicultural Considerations
A wide range of multicultural issues should be considered when working with newly-diagnosed patients in gathering information. The first consideration is language. If English is not their first language, they may have difficulty comprehending much of the information they read, which can lead to discomfort and confusion. If possible, materials should be in their native language. Patients from other cultures may also feel uncomfortable asking questions, out of concern for not appearing to understand what they are being told, or because they don’t want to appear disrespectful by questioning someone in authority.
Education and Socioeconomic Status
Newly-diagnosed patients with less education may be uncomfortable reading, or have difficulty in reading comprehension. They will most likely benefit from discussions with the healthcare professionals who treat them, supplemented by easy-to-understand information and guidelines. Those from a lower socioeconomic status may have not only reading issues, but may feel uncomfortable interacting with individuals whom the perceive as more educated or in an authority position.
Facilitating the ‘Knowledge is Power’ Mentality
Healthcare professionals can help their newly-diagnosed patients to become more active information-gathers – and information-users – through a combination of guidance and encouragement. Often, what patients need is having someone who is committed to making sure they are informed, and who is willing to take the time, where appropriate, to act as a coach in the information-gathering process.
Figure 7-__
A photo of a healthcare professional and a patient reading a brochure, or looking at a visual aid, together
Helping Patients to Overcome their Avoidance of Information
Newly-diagnosed patients may need some help in overcoming the fear, denial, or other barriers that have against gathering information. Patients in Flight reaction will tend to tune out any information that may be perceived as scary in any way, or that may be contrary to whatever treatment path they have chosen. Patients in Flight reaction will also avoid information out of a desire not to deal with their condition at all, or they may do some information-gathering but focus only on the bad news. Patients in Fight reaction are generally active information-gatherers, though they too may need some help in knowing the information that will be most useful as they begin the process of learning about their condition.
Sometimes what patients most need is some encouragement to take the first step in getting informed about their condition. Healthcare professionals can help to get this process moving by taking the time to understand why patients are avoiding information, explaining the benefits of getting informed, and then encouraging them to get started, as follows:
- Discuss with the patient why they are avoiding information
“It seems to me that that you don’t want to read the pamphlets that I gave you. Patients who are first diagnosed often want to avoid information at first. Why don’t we talk about what is bothering you about getting informed about your condition. I’d like to understand this better so that I can see how I can help you.”
- Acknowledge that avoiding information is normal
“It’s normal to be __________ (scared, confused, overwhelmed) when you first start to learn about what’s going on with your health. I know you are reading about things that you would rather not know about.”
- Explain the benefits of being an informed patient
“If you understand your condition, and what to expect from treatment, this benefits you in more than one way. First, the things that are the scariest are the ones we don’t understand fully. When you understand your condition, you will also know what we can do about it. Also, when you’re informed than you can help us by asking questions and by keeping us informed, such as knowing what side effects to report. This helps us to help you.”
Figure 7-__
An illustration of a healthcare professional, with a thought bubble filled with URLs
Making Relevant and Appropriate Information Source Recommendations
Newly-diagnosed patients are faced with a healthcare information environment that is rich and varied. While this means that virtually any question a patient might have can be answered, and from a variety of perspectives, it also means that patients may be exposed to information that is biased, or that presents possibilities that may or may not be relevant to their situation, or that is laden with medical terminology that doesn’t make sense. Healthcare professionals can help to get this process started by making an initial suggestion of resources that will be appropriate to the patient’s specific needs.
Patients may have all of the best intentions while they are sitting with the healthcare professional. However, when on their own, patients find all kinds of excuses not to seek out information about their condition, due to their own individual barriers against becoming informed, as well as the sheer volume of information that they most likely encounter once they get started. It is also important to consider factors discussed previously when attempting to get patients started in information-gathering, including age, education, and cultural background. The following are guidelines to consider in helping patients take the first step with information:
- Being sensitive to the patient’s individual orientation toward information
“I’m wondering if you would like to sit down for a few minutes and talk about the best way to take your medication, and what you can avoid if you stay on track. If you want, I can write down a few of the most important things for you.”
- Helping the patient to take the first step by suggesting where they might get started
“I have a list of great Websites you can visit, and a couple of numbers of organizations that specialize in your condition. I have a list that I keep update, and I would be happy to print it out for you.”
- Placing information in the patient’s hand
“I’m going to give you a handout that we put together here at the clinic. A lot of newly-diagnosed patients have found that this gave them some useful basic information along with a few ideas on where to go for more information. It includes a couple of Websites that we recommend. I’ll point out what you might want to pay the most attention to.”
Encouraging Reading and Comprehension
During the earlier years of the Internet, only more technologically savvy individuals were active Internet users. As medical Websites such as WebMD came into being, these savvy users were began to discover the potential wealth of information available on the Web, and to actively seek out this information in understanding their health and the best way to treat any medical conditions they might experiencing. Gradually, as more and more people have started using the Internet, more and more people are also visiting healthcare-related Websites. However, visiting a Website, and even printing out some of the more relevant pages, does not mean that patients are actually taking the time to understand what they read or to make use of it. The same may be said of materials that patients are handed or pick up in the office. They may take this information home with them, but it may not actually be read.
As described previously, newly-diagnosed may have their own psychological barriers to reading information about their condition and its treatment. While these barriers affect their willingness to seek information, these same barriers may also affect their willingness to read the information that they obtain. In other words, they may gather information to please their healthcare providers or their caregivers but not do anything with it.
Healthcare providers can counter this resistance by gently, yet firmly working with patients to make sure they gain value from the materials they gather. This includes:
- Time allowing, offering to briefly sit down with the patient and review information together
“Why don’t we sit down for a couple of minutes and go over the pamphlet that I gave you. I can use a highlighter to point out some of the most important points for you to keep in mind.”
- Telling the patient what they should pay most attention to as they gather information, e.g. treatment duration, side effects, or compliance guidelines
“I mentioned that you were going to do some searching online. I wrote down a couple of trustworthy sites that you might begin with. And as you read through it, I would suggest that you pay really close attention to the information on how to get the most from your medication, including the foods to avoid while you are taking it.”
- Encouraging the patient to ask questions regarding what they have read and, if the patient doesn’t have any questions, reviewing key points
“I know you looked through some of the materials that were in the new patient packet that I gave you. You probably have a few questions about what you read. Do want to ask me anything now? If not, I can go over a few things with you.”
- Gently reminding the patient of the importance of being informed about the condition and asking if they have and specific concerns that have prevented them from making use of information
“I know you have a lot to think about and some of the information can feel overwhelming at first. But it’s so important that you have a basic understanding of your condition and the kinds of things you need to be doing for yourself. Do you want to talk about what’s keeping you from spending some time getting more informed?”
- Offering to suggest additional information sources if the patient appears to be having difficulty understanding what he/has been reading
“I’m wondering if you didn’t find the information I suggested so helpful. If you didn’t, I have some more ideas about information that could be useful. Do you want a couple more suggestions?”
- Offering encouragement in the form of praise when a patient does discuss something he/she has read or asks questions
“That’s a great question. I see you’ve been doing some information-gathering on your own.”
Figure 7-__
A photo of a healthcare professional explaining something to a patient
Making Use of Educational Moments
While newly-diagnosed patients can benefit from a conversation on information-gathering, various educational moments arise along the way which can also be used by healthcare professionals to convey information, and encourage patients to gather information on their own, when they may be most open. For example, a patient who has inadvertently been non-compliant with taking medication, perhaps taking it on an empty stomach instead of with food. The healthcare professional might remind the patient of the correct way to take the medication, as well as encourage them to take a look at other information on getting the most from their medication. Or, a patient may come with questions about how their condition developed, or how to maintain an optimal lifestyle, and this might be another opportunity to encourage some independent information-gathering. As these questions arise, patients might be encouraged not only to gather information around their condition, but also on topics like wellness, stress management, and diet/exercise. Guidelines for taking advantage of educational moments might include:
- Gently suggesting that the patient’s situation or question points to the need to be informed
“It’s not uncommon for newly-diagnosed patients to run into some glitches when they first start on a medication. I can give you a couple of rules to follow to make sure you don’t run into this kind of problem again. I also have a Website I can tell you about that really explains what it’s like to be treated for your condition, and offers a lot of ideas that you might want to keep in mind.”
- Suggesting related information to help the patient maintain a healthier lifestyle
“You bring up an interesting question about how stress might have been a factor in your recent flare-up. I have some pamphlets here on stress management that you might find helpful. I also know of a couple of great Websites that explain how stress affects health, and have some ideas for keeping stress under control.”
Key Areas of Information for Newly-Diagnosed Patients
A comprehensive list of information sources, including books, organizations, and Websites, is included in the Appendix. Here are some topic areas to consider when encouraging patients to begin gathering information:
Figure 7-__
Building blocks with each labeled with one of the sub-heads below, showing the key areas of information
Condition and its Treatment
Patients can benefit from understanding:
- How the condition is developed
- Symptoms of the treatment
- How it may develop if left untreated
- Treatment options, risks and benefits of each
- Coping with treatment
- Making lifestyle changes
- Experiences of other patients with the same condition
Health Promotion and Wellness
While it is not in the best interest of the patient to encourage them to research unproven, alternative treatment, they can benefit from health and wellness practices that work in tandem with traditional medicine, including:
Biofeedback
Yoga
Meditation
Natural foods
Vitamins (if physician-approved to not interfere with treatment)
Appropriate exercise
Support
Newly-diagnosed patients can benefit from emotional support, and support groups can also be a valuable source of information. There are a range of support options that include traditional support groups for their condition and/or its treatment and online support, possibly developed by the pharmaceutical company behind the medication being used, or through condition-focused organizations. (Support is the focus of Chapter Eight). These include:
National associations with local chapters
Local support groups
Online chats
Online behavioral modification programs
Message boards
Men’s/Women’s Health
Some conditions may be specific to men and women, e.g. ovarian or prostate cancer. However, issues arise from certain conditions and their treatment, such as diabetes, that have different implications for men and women. Patients can benefit from being exposed to information that is specific to their gender. Specific topics include:
Recovering sexually after prostate cancer treatment
Self-image after breast cancer treatment
Coping with Type II diabetes as a man/woman
Mental Health
As mental health issues arise with patients, the following are topic areas to consider:
Depression and what to do about it
Stress management
Coping emotional with a medical diagnosis
Local counselors and therapists
Local support groups
What to look for when choosing a mental health professional
Low cost options for mental health treatment
When Information-Gathering Creates Challenges
While information can be extremely helpful for patients, there are times when information is less helpful. Newly-diagnosed patients read information that is not based on sound medical practice or they misunderstand and misinterpret something that they read. Or they may behave in a manner that interferes with the relationship with their physician. As these situations arise, patients often go back to the healthcare professional with whom they work most closely to discuss their concerns or to ask for additional guidance. Below are situations that may arise with suggested responses from the healthcare professional.
Figure 7-__
A patient with a confused expression talking to a nurse
“I read something that completely contradicts what I heard from you.”
Brochures from pharmaceutical companies or even from non-profit organizations may be written from a perspective that may be in some way biased. This information is most likely not incorrect, but it may in some way appear to contradict what they patient has been told at the clinic or office where they are being treated. Or, patients may read something about their condition, or its treatment, that does not apply to them, or may misinterpret what they read. Information gained through the Internet, as has been discussed previously, most likely has additional biases, given that virtually anyone can post their ideas on a Website, whether or not they are qualified to do so. Consequently, patients may encounter information that appears to be in opposition to what they are hearing from their healthcare professionals, or reading through the information sources that they have been referred to.
In the example below, a newly-diagnosed patient, Christa, visited a patient blog that discussed the benefits of an arthritis treatment that Christa’s physician had indicated was not the best treatment for her condition. She talks about her concerns with Tony, her healthcare professional.
Christa: I read that the medication I had originally asked for works much better than the medication I am using. So now I am confused. Why aren’t I taking it?
Tony: You know the doctor said that arthritis is not a one-size-fits-all condition. Some medications are more appropriate than others.
Christa: Well, I don’t know anymore. What I read made a strong case for another approach.
Tony: Can you show me where you read this?
Christa: Sure. (They go on the Internet together.)
Tony: Christa, I just want to point out that this is a blog written by a patient, not a medical professional. He is talking about his experiences. But this is his perspective and opinion. It doesn’t apply to everyone.
Christa: I see. I hadn’t thought about that.
Tony: But if you want talk with the doctor about what you learned, I am sure she would be able to answer your questions.
“I read something that really scared me.”
Inevitably, newly-diagnosed patients are going to read something that causes them to be concerned, if not frightened, about their condition or its course of treatment. They may read something on a patient blog, as Christa did in the previous example. Or they may read biased information that attempts to sway opinion in favor of a specific treatment. Patients also encounter information on reputable Websites which frightens them if they over interpret it. Hopefully, healthcare professionals and patients have developed a relationship such that the patient can come discuss their concerns and be both educated and reassured. Potential symptoms, side effects, and disease progression are areas that are most likely to be frightening to patients.
As with contradictory information, patients can benefit from discussion of the source of the frightening information, to determine whether the information is credible or not. This can be followed by reality testing in terms of the likelihood of the negative outcome actually occurring.
Dave, a patient recovering from surgery, visited a Website that discussed side effects of the pain medication he is taking with his healthcare professional, Cathy.
Dave: I’m really worried about this pain medication the doctor prescribed. It says it causes aplastic anemia. Are you giving me something that is going to cause big problems further down the road?
Cathy: Where did you read that?
Dave: Well, I can tell you it was from a reputable source. I read it in the patient information pamphlet from the drug company. I’m sure they know their own product.
Cathy: That is a reliable source, Dave. But I would encourage you to keep in mind that the drug companies have to report any and all potential side effects of their products. The FDA requires it. The package insert will let you know of the percentages of patients who have experienced a specific side effect. Most likely, very, very few patients have experienced aplastic anemia. Did you notice the percentage?
Dave: No, I don’t think I noticed that.
Cathy: Let’s take a look and see. Any drug has risks, but when a side effect hardly every occurs, then you don’t need to be so worried about that.
Figure 7-__
A patient sitting with a doctor who appears to be annoyed or frustrated
“The doctor got mad at me for spending too much time on the Internet.”
Patients have their own unique orientations toward information, and so do their physicians. Some physicians encourage information-gathering. They want their patients to explore their condition, to know as much as possible, and welcome discussion around what they learn. Other physicians have had negative experiences with patients who they feel have become frightened or misinformed through reading the biased information, or patients who they feel have become untrusting as a result of the information they have been exposed to. Still other physicians feel it is best if they personally serve as the source of information, so that they can stay in control of what patients know about their condition, or who want to avoid ‘high maintenance’ patients who worry too much or ask too many questions.
However, regardless of the physician’s comfort level with patient information-gathering, situations do arise in which the physician expresses frustration or discomfort with the kinds of information the patient is reading, out of concern for how this information may affect trust, compliance, or decision-making. In turn, physicians may express their feelings with the patient. While this is an issue that is best resolved between the physician and the patient, the patient may want to discuss this situation with the healthcare professional. As these situations arise, newly-diagnosed patients can benefit from being reassured that their questions are welcome.
Rennie, a patient recently diagnosed with a chronic condition, tells her healthcare professional, Melissa, that her doctor scolded her for reading too much frightening information on the Web.
Rennie: The doctor got kind of mad at me. I thought it was a good idea to understand how I am being treated, and I have to get informed if I am going to be able to do that. But I think I asked him a question that made him mad.
Melissa: What were you talking to him about when you felt he got mad?
Rennie: I had read an article on a health Website that said that a new injectable drug might be more effective than the pills I am taking. I asked him if he heard of it and if he thought it was time for me to try it.
Melissa: What made you think he was mad at you?
Rennie: He said that he is comfortable with my treatment at this point and that it is working. He said he is treating me according to best practices for my condition and that I need to trust him and not second guess him all the time.
Melissa: I can’t speak for the doctor, Rennie. But in this office we encourage patients to be informed about their conditions, and we’re all here to answer your questions as they come up. If you have concerns about how your treatment is working, feel free to let one of us know.
SIDEBAR: SELF-TALK
Negative self-talk around information-gathering includes:
I will never be able to understand all of this. It’s all written for doctors and nurses.
I am only going to read something that makes me feel even more discouraged.
I will have more questions that nobody will want to answer.
It’s better not to know and let nature take its course.
You can’t even believe half of this. Who knows who it’s coming from? It’s not worth my time.
Antidotes to negative self-talk about information-gathering includes:
A lot of the information on the Web is patient-friendly. My healthcare professionals can recommend the best sites for patients.
It is better to be informed and to understand what I am facing than to guess and maybe even think the worst.
I can always ask my healthcare team a question if I don’t understand something.
Some information is more reliable. I can focus on sites sponsored by reputable organizations.
SIDEBAR: BODY LANGUAGE
Newly-diagnosed patients who are beginning the process of gathering information about their condition may have body language such as:
- Resting their head in their hands, eyes downcast
- Stroking chin as they decide where to start
- Biting nails nervously
- Looking away
- Tilting head forward in interest
Getting Caregivers Involved in Information-Gathering
Caregivers can play a variety of roles in the process of gathering information for newly-diagnosed patients.
As discussed in previous chapters, caregivers feel as much – and sometimes more – fear and helplessness than do the newly-diagnosed patients themselves. As they watch their loved one cope with a medical situation, they feel the urge to ‘jump in and make everything better.’ One of the ways they cope with their own helplessness is to learn as much as possible about the condition. They do this because they are looking for ways to help the patient, e.g. find the best treatment possible and, in the process, to feel like they are taking an active role and, subsequently, to feel less helpless in the process. Family members can play an active role in information-gathering, or in encouraging the patient to become informed. They can also play a role that is less productive.
The following are situations that may arise with family members in gathering information:
Figure 7-__
Family members sitting together looking at a computer screen
“Don’t worry. We’ll handle it.”
Family members may become involved in information-gathering to the point that they encourage the newly-diagnosed patient not to get involved, if not actively discourage them. They may fear that the patient will learn something upsetting, e.g. disease progression, that they fear will interfere with the patient’s positive attitude. If treatment decisions need to be made, caregivers may not trust the patient to use the information correctly, and so they step in and take charge of this process, and assume that the patient will prefer having someone else handle the details. Caregivers, especially those from the immediate family, may also want to avoid their own emotions around their loved one’s medical diagnosis. They may fear that if the patient knows too much about their condition or the treatment, he/she will express emotions that will be uncomfortable for the caregiver to deal with, or may stir emotions in the caregiver as well.
While patients in Freeze reaction are so emotional shut down or in denial that they may welcome this intervention, whereas patients in Flight may be emotionally unprepared to process information, in all of these situations, the result is that the caregivers, albeit unintentionally, will disempower the newly-diagnosed patient at a time when he/she needs to become empowered.
“Why can’t you handle this?”
Caregivers may also expect the newly-diagnosed to immediately become empowered – a Fighter – and take charge of their information-gathering. On one level, they may recognize that their loved one needs to become involved and begin to whatever is necessary to cope with their diagnosis and get treatment and lifestyle management underway. However, there may also be an alternate agenda working behind their insistence that the patient become active. This may be a way for caregivers to avoid their own emotions, and their own sense of helplessness, and hope that the patient will ‘get busy and get this whole thing over with.’ In this situation, patients may sense how caregivers are feeling and assume that they are on their own in learning about their condition, or they may become resistant for the same reason.
Figure 7-__
Charma and Tory sitting together having a discussion
Rx: Talking with a Patient to Introduce the Information-Gathering Process
Tory sat across from Charma, who looked as she was totally devastated by her diagnosis. She had tears in her eyes, and she slumped forward in the chair. Tory sat for a moment without speaking, to give Charma time to gather her thoughts.
Tory: I know this is a lot to hear about. Did you have any expectations about what your symptoms might be caused from?
Charma: Not really. I just thought I was tired out.
Tory: (Smiles) You are tired out. And now we know why. And we’re going to do everything possible to get you feeling as well as you can. And to get started in that process, I want to go over some information with you. Dr. Lopez already explained some of the basics of fibromyalgia. First, I’m going to review your treatment plan and answer any questions you might have.
Tory explained the schedule for the medication that Charma would be receiving, as well as how she might learn to live effectively live with her symptoms and has as normal a life as possible.
Tory: Dr. Lopez mentioned that we really want to work with you as a team, and that means that all of us need to be informed. So can I suggest some information that might be helpful for you to look through?
Charma: “I guess so.
Tory: Are you an Internet user?
Charma: Yes, I am.
Tory: Great. There are a lot of fantastic sites out there that have some excellent information. I am going to suggest a support site for young women like yourself who are dealing with chronic conditions. You can get information and find about support groups that are in the area. I also want to give you the Website address of a site that gives you the basics about fibromyalgia. You might also be interested in information on stress reduction through techniques like meditation and yoga. Does this sound good?
Charma: It sounds like too much.
Tory: Okay. Where do you think you could comfortably begin?
Charma: I’ll just read the pamphlets you gave me. And then maybe I’ll check out the site for women with chronic conditions.
Tory: You’re married, right, Charma?
Charma: Yes I am.
Tory: I am wondering if you might talk to your husband about what you learned today and see if he would like to partner with you in learning more about fibromyalgia. Remember, we are going to need him involved in your treatment. Do you think he would be up for that?
Charma: This is going to be hard on him. But I know he is going to want to be by my side.
Tory: That’s great. Don’t forget that I’m here to answer any questions that come up. We can even go through information together if you want to print it out and bring it in.
Figure 7-__
An illustration of stair steps, similar to other chapters, with steps labeled with headings from the subheads below, including: Sell benefits, Start slow, Do research, Encourage, Involve caregivers.
Guidelines for Introducing Patients to the Information-Gathering Process
Here are some guidelines to keep in mind when getting newly-diagnosed patients started in gathering information about their condition:
Sell the benefits.
Newly-diagnosed patients are often initially hesitant to get involved in gathering information. When first suggested, information-gathering for all but the most motivated patients will sound like a large undertaking, if not punishment, with a lot of time spent researching a topic they have no desire to learn about. Explaining – selling – the benefits can help patients to be more open to the idea of learning about their condition. These benefits include feeling more in control, knowing when to be concerned about symptoms and when it is not necessary to be concerned, making the best treatment decision, and making lifestyle adjustments in a way that is most comfortable and ‘normal,’ and that will yield the best results. Tory explain the benefits of information-gathering to Charma in terms of being a member of a team with the physician and other healthcare professionals.
When talking to a newly-diagnosed patient about the benefits of information-gathering, it might be helpful to tell them a success story of a patient in a similar situation who took the time to become educated and benefited from the experience of making use of reliable information on the Web and in books.
Start slow.
As was the situation with Charma, newly-diagnosed patients are feeling the initial shock of their diagnosis, and are consequently already overwhelmed. Information-gather may feel like yet another mountain to climb. Tory suggested a few areas that Charma might want to research to help her get started, but not a large amount. When she sensed hesitation in Charma, she took a step back and asked Charma where she wanted to start first. This gave Charma a sense of control and allowed her the option of starting at her own pace.
Consider doing your own research first.
While healthcare professionals cannot realistically be an expert on information resources in every condition that they treat, it can be useful to keep an informal file of resources that have proven to be reliable, especially in regard to conditions that are treated relatively frequently. In the office of Dr. Lopez, enough women were being treated for fibromyalgia that Tory took it upon herself to maintain and update her own resource list. This, in turn, made it easier for her to educate patients and to encourage them to educate themselves through relevant resources.
Stand by to encourage and interpret.
Tory made it clear to Charma that she was not sending her into the ‘forest of information’ unaccompanied. She was willing to answer questions and review information that Charma might want to print out and bring into the office. This offer might also have the effect of motivating Charma to learn more if Tory continues to encourage her. The two of them may bond around the process of becoming informed.
If possible, involve caregivers.
Caregivers can be enlisted to partner with patients on learning more about their condition. As discussed previously, they are not always willing or able to. However, Tory made this suggestion to assess Charma’s openness in involving her partner and how supportive she thought he might be.
Summary
Information-gathering is a critical step toward patient empowerment. Informed patients are much better able to actively participate in their treatment. Patients who understand their condition and treatment will be more likely to be compliant because they know not only that they have to be complaint, but also why it is important. They will know what they most need to report so that their healthcare team is better able to help them. Healthcare professionals can play an active role in both motivating and guiding patients in this process.
Patient Information-Gathering Worksheet
Patient Name ________________________
Condition ____________________
Medications Prescribed ____________________________
____________________________
Patient was provided with the following printed information:
______________________________________________
______________________________________________
______________________________________________
Suggested additional resources:
Websites
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
Other Resources
______________________________________________
______________________________________________
Checklist for Patient Orientation Package
Condition _____________________________________
Brochures
____________________________________________
____________________________________________
____________________________________________
Resource List (condition, treatment, mental health)
____________________________________________
____________________________________________
Self-monitoring Checklists
____________________________________________
Diet/Exercise Guidelines
____________________________________________
____________________________________________
Emergency Contacts
Office Procedures and Policies