Opening Case Study
Walter thought that his prostate cancer diagnosis was worst thing that could possibly happen to him. At age 61, he felt like his future was suddenly cut short by the news that, in his words, was ‘signed, sealed, delivered’ by the urologist his physician had referred him to only a month ago. And hardly any symptoms, other than some difficulty urinating, that might have helped him to prepare for this possibility.
And then, a week later, Dr. Shapiro, his new oncologist, sat down with him and discussed the treatment. If the situation weren’t so serious, Walter told his wife, Betty, that he would have been tempted to laugh as the doctor tried to sound upbeat about his treatment. “You have lots of options,” Dr. Shapiro had said, “not just one like in the old days. And while each option has a downside, we can work together to decide which one is going to be best for you.”
Keep in Mind: While everybody wants options, sometimes in a healthcare situation, multiple options can feel like a few too many. What kinds of concerns would you have in a situation like Walter’s? Would you feel confident? Insecure? Confused? Overwhelmed? When approaching a patient who is faced with a complicated treatment decision, sensitivity to their situation begins with being aware what our own fears would be.
“Yeah,” Walter said to Betty. “Lots of options. Surgery, radiation, radioactive seeds. How lucky am I? I can have the Devil or the deep blue sea.”
Dr. Shapiro had gone through each treatment option thoroughly with Walter, explaining the treatment process, the recovery, the side effects, and the risks. However, when Walter thought about this conversation later, he realized that he had been mainly focused on the risks and side effects of each treatment, and had missed a lot of the other details. He had basically had two questions about each of the options: Will I be able to function fully at my job? Will I be able to have a sex life again?
While Dr. Shapiro had addressed these concerns, he was also honest with Walter that, while many of his patients had come through their treatment and returned to their lives, they had had to make adjustments, at least temporarily, in their sex lives. And he couldn’t give Walter any absolute guarantees.
Walter knew that his wife Betty was focused on keeping him healthy, and was probably less concerned about their sex life than he was. But this didn’t feel very comforting to him.
Keep in Mind: If you were in the position of talking with Walter about the return of his sexual function after prostate cancer treatment, what would your goal be? Honesty? Reassurance? Optimism? Acceptance? While as healthcare professionals, it might be preferable to combine all of these goals, patients may not be so cooperative.
“This is a lot to think about,” he said to Dr. Shapiro. “I have hardly ever taken a sick day in over thirty years, and now you are telling me that I am a very sick man with life and death decisions to make. And these decisions will affect the rest of my life, whatever that is going to be.”
“You don’t have to decide today,” Dr. Shapiro said. “Your cancer is not growing rapidly and there is no bone involvement. But I would like to get treatment underway within the next month.”
“I understand,” Walter said. “I get a little reprieve. But maybe not a sex life after next month.”
“We’ll keep talking about the best way to treat your cancer,” Dr. Shapiro said. “The healthcare team is also available to talk to you about your treatment and answer questions. They have worked with a lot of patients in your situation.”
Keep in Mind: Walter described the time he has to make a decision about his treatment as a ‘reprieve,’ as if having to make a decision was a punishment. This is a valuable insight into how fearful he was feeling about this decision. How would you react if Walter said this to you?
Overview
“We need to get started on a treatment right away.”
These words can be alarming to a newly-diagnosed patient because it means that decisions, large and small, need to be made, decisions which, most likely, the patient feels neither emotionally nor intellectually prepared to make. What kinds of decisions have to be made? These include:
- Understanding the diagnosis
- Considering a second opinion
- Choosing how to treat the condition in the short term, e.g. surgical or non-surgical alternatives
- Choosing how to treat the condition long term, including the use of medications for chronic conditions
- Choosing lifestyle modification options, e.g. what activities to give up or modify
- Considering alternative medication and treatment within and outside of the US
Some patients – Fighters – decide to become educated and to work with their healthcare professionals to make decisions. Others resist making decisions and leave this task to their physician. Assertive patients can of course present challenges to the healthcare team because they may question – repeatedly – their information and their recommendations. On the other hand, patients who cannot or will not participate in making decision are less likely to be complaint because, at some point, they may conclude that they haven’t had any control over the decisions that have been made for them, or that they are dissatisfied with the direction of their treatment. In other words, they may disagree with these decisions and, where possible, want to change direction. This can place further strain on communications.
Healthcare professionals play an important role in facilitating the decision-making process. They do this by recognizing and acknowledging the patient’s emotions, such as fear, that are interfering with their ability to process information, help them to become educated on and, subsequently evaluate, the options.
Keep in Mind: Think about the last time you had to make an important decision. What kinds of emotions were you experiencing? How did your emotions affect the decision-making process? The decision itself?
Figure 5-__
An illustration showing a patient making a decision and influenced by emotions and logic.
What Goes Into Making a Decision?
It is useful to begin our discussion of helping patients make decisions with an overview of healthcare decision-making. Decision-making from the cognitive perspective is multi-faceted, and includes seeking and evaluating information, weighing alternatives, and coming to a final decision, and involves both emotions and thinking, also referred to as cognition. The emotional perspective focuses on how patients’ individual needs, personal values, and emotions affect how they make decisions. The cognitive perspective focuses on factors like how information is evaluated and how different options are weighed. Overall, the psychological and the cognitive perspectives should ideally work in tandem as newly-diagnosed patients make decisions, however patients are not always able to access all of their emotional and cognitive resources. Patients in Flight, Freeze, or Fight reaction will experience their emotional and cognitive perspectives in ways that are consistent with their reaction type.
As a quick review, Fighters are more likely to maintain a balance between the emotional and the cognitive perspectives as they make decisions, though it is human nature that these two perspectives are not continuously in balance. For example, Fighters are comfortable experiencing their emotions fully, or relying more on an objective, cognitive perspective, depending on the situation. Those in Flight reaction are more likely to view the decision-making process from primarily an emotional perspective, which may result in an inability to evaluate information effectively or otherwise view decisions from a cognitive perspective. And those in Freeze reaction, because they are emotionally shut down, may not be able to avail themselves of the sense of optimism and hopefulness that can energize the decision-making process.
Emotional Perspective
Patients often have to make decisions in the face of uncertainty, and this has a major effect on their emotions. As discussed in Chapter Four, uncertainly about the future is closely tied with the fear experienced by newly-diagnosed patients. Uncertainty can cause patients to resist listening to information that they are concerned might cause them to become even more fearful, which means that they will not have information that might help them to make informed decisions. Furthermore, fear-based resistance to information creates a cycle of fear, because in the absence of rational information, it is human nature to fill in the gaps with assumptions and stories that serve to further increase the fear and make it even more difficult for patients to make decisions.
Other emotions can affect the ability to make a decision. Having to make a major decision, especially under pressure of time, can be frustrating, and it is human nature to react to frustration with anger. The ‘Why me?’ question may again emerge as major decisions loom on the horizon, which may result in more anger. Lifestyle related decisions may cause feelings of sadness if change, e.g. change in daily routine or diet, is equated with loss. Even happiness can have a negative impact on decision-making. A patient who is enthusiastic over a chosen – but not necessarily optimal or realistic – course of treatment may refuse to consider other factors in making the treatment decision.
When patients are overwhelmed emotionally, it is difficult for them to listen and to process information.
Cognitive Perspective
Cognitive skills, from the perspective of making decisions about medical treatment, include being able to objectively process information and weigh alternatives. This is seldom an easy process for patients. First, emotions can interfere with this process. Secondly, newly-diagnosed patients most likely have no experience with their condition and, in most cases, little or no experience in dealing with any other medical conditions. So they have none of the decision-making perspective that past experience would provide in terms of how to best approach the decision-making process.
Overall, in the optimal decision-making situation, newly-diagnosed patients will be able to:
- Discuss their diagnosis and suggested treatments with their healthcare providers
- Read information suggested by their healthcare providers and gather information on their own
- Consider the treatment options, and weigh the benefits, risks, and inconvenience of one treatment option versus another
- Consult with family members to discuss the impact that the treatment may have on relationships as well as potential caregiving needs that may arise
- With the healthcare professionals involved, come to a final decision and give consent
FIGURE 5-__
A flowchart showing the decision process, including:
Discuss diagnosis and treatments
Get informed
Consider options
Consult with caregivers
Decide
Ideally, newly-diagnosed patients would be able to work with healthcare professionals, as well as use their own resources, to come to a decision about their treatment. However, human nature is such that cognitive abilities are impacted by human nature in ways that interfere with the ability to easily go from one decision-making step to the next. Human nature intervenes in a number of ways during the treatment decision process. For example, patients may have a desired or expected treatment in ‘the back of their mind’ – a bias – when they being the discussion about treatment options. This bias may be based on experience with a friend or relative, or something they read about or were exposed to in the media. For example, a patient may enter into the cancer treatment decision process having had a relative who underwent radiation for cancer. While the patient’s treatment team may present the patient with other options, such as surgery, the patient may listen ‘selectively’ to the non-radiation options, to the extent that he or she essentially ignores the facts that support the other options. The information regarding alternatives may be viewed as less important, or confusing. In this regard, it is also not uncommon for patients to reach for the first option that is presented and ignore the other options, or make an initial decision and then explore further, out of a desire to avoid becoming confused, or having to face the potential stress of having to decide among multiple options.
Wishful thinking can play a role in decision making. Newly-diagnosed patients may be so focused on a positive outcome that they downplay the serious of the treatment decision, and consequently are less willing to consider information and options that may contradict their image of the best possible outcome and therefore be too uncomfortable to consider. Superstitious thinking, discussed in Chapter 3, may emerge during the decision process if patients fear that thinking too much about the treatment begins to feel like they are ‘questioning’ its efficacy and therefore ‘jinxing’ themselves. Wishful thinking and superstitious thinking often go hand in hand and can be difficult for healthcare professionals to counteract. Wishful thinking tends to be associated more with patients in Flight reaction, while both those in Flight and Freeze reactions may demonstrate superstitious thinking. A patient’s claims of ‘intuition’ and gut reaction’ may be no more than a way of defending wishful or superstitious thinking. For example, a patient may state that he or she has an intuition about the best treatment but, on further examination, this treatment is closed to the most hoped for route to recovery, but not based on objective facts.
Experience with health-related information may influence the treatment decision-making progress in both a productive and less product manner. Educated patients will ideally ask more questions and be better prepared to weigh the alternatives. However, exposure to healthcare information can interfere with optimal decision-making. For example, it is human nature to pay more attention to recent information. Consequently, patients may be easily swayed by the most recent argument (this may be a reason why, on the other hand, patients may make a decision early on in the process and refuse to listen to additional information). On the other hand, patients may be affected by what they heard initially. For example, the newly-diagnosed patient may talk to another patient, or another healthcare professional, who presents a different treatment, and suddenly decide that this is the best direction.
Patients may also pay attention to information that has been presented repeatedly, even if it is not the best information. A patient may repeatedly talk to a family member, or view an advertisement about a medical treatment or drug, and may over-estimate the value of this information and consequently be unduly influenced. Furthermore, the information sources affect willingness to listen to, and accept, information. If a patient has a bias toward an information source, like a respected company or a favorite organization or Website, may place more value on information that comes from this source than from other sources, whether this is a valid perception or not.
Basically, while the process of making a decision would appear to be relative clear cut, the nuances of human nature interfere with patients’ ability to navigate this process. That these nuances are primarily subconscious (below the level of awareness), and therefore beyond patients’ awareness, presents further challenges.
FIGURE 5-__
An illustration showing the heart and the mind working together
The Emotional and Cognitive Perspectives Working Together
The emotional and cognitive perspectives do not have to work against each other, nor do they have to work separate from each other. Instead, emotion can empower decision making. When emotions are fully expressed, this can result in a sense of relief as the emotions are released, potentially replaced by a sense of calm and acceptance. As discussed previously, the struggle against experiencing unacceptable and uncomfortable emotions is more debilitating than experience the actual emotions. With the emotions, the mind is clearer to focus on the present. Patients may begin to accept that their condition and its treatment, and accept that the need to make decisions is not going to ‘go away.’ At this point, they are they are more likely to face what they have ahead and begin making rational decisions.
This interplay of emotions and rational thought are what distinguishes those in Fight reaction from those in the Flight and Freeze reactions. Patients who have achieved this balance are able to work more effectively with their healthcare providers because they can listen to information, evaluate it, ask questions and, ultimately, participate in the decision-making process. Patients who feel part of the process are more likely to also accept the risks, cope with the side effects and other inconveniences, and to be compliant with treatment. (REFERENCE)
Keep in mind: Have you ever felt so overcome by emotions that you ‘couldn’t think?’ On the other hand, have you ever made a decision that you felt was premature, and that was motivated out of an emotion like fear or anger? Healthcare providers can work with patients as they struggle with making decisions by being sensitive to the challenge that patients face as they make what are monumental decisions.
Figure 5-_
An illustration of the components of assessing patient readiness to make decisions, based on the sub-heads in the following section.
Assessing When Patients are Ready to Make Decisions
Newly-diagnosed patients may directly indicate their readiness to make a treatment or other decision, either by enthusiastically embracing the decision (whether or not it is the optimal route) as an opportunity to move forward or, on the other hand, by refusing to participate in this process. The emotional impact of the diagnosis may be such that the healthcare professional is met with a wall of resistance when attempting to work on a treatment plan with patients. The following are factors to consider when assessing whether a patient is ready to cooperate with healthcare professionals in making decisions.
Direct Expression of Emotion
What patients say:
“I can’t face this! I’m so angry that I have to go through this!”
“What choice do I have? Take some kind of harsh treatment that is going to make me even sicker?”
“I have about three options and they are all bad. I feel so awful I can’t even think about all of this.”
“Leave me alone!”
Body Language:
Consistent with the emotion, slumped over, crying, arms crossed in defiance, turning away
Figure 5-__
Photo of patient slumped over.
What’s going on with the patient:
As discussed previously, the patient is not able to think rationally due to a rush of emotions that are, at least temporarily, interfering with the ability to take in and evaluate information.
Lack of Emotion
What patients say:
“Just tell me what I need to do. Let’s get it over with.”
“I am sick and I have to get treated. What is there to talk about?”
“I can’t sit here and wring my hands.”
“Just give me the facts and I’ll decide.”
Body Language:
Consistent with being emotionally shut down, including staring into space, lack of expression, attentive but no emotional response.
Figure 5-__
Photo of patient staring into space
What’s going on with the patient:
The patient may be temporarily disconnected from his/her emotions. This can be productive if the patient is attempting to focus on the facts in an objective way, such that he/she can evaluate the information from a purely factual perspective and consider the alternatives. Newly-diagnosed patients may alternate between being emotional and unemotional as they consider the facts and then have an emotional response. This is not uncommon in patients in Fight reaction. It is how they maintain a balance between logic and emotions.
Patients who remain disconnected emotionally may also be reacting in a way that is in tandem with their decision-making style. In other words, lack of emotional response does not necessarily imply that the patient is not facing the diagnosis or dealing with the issues. These patients may simply have an unemotional approach to making decisions. In general, patients who have prepared themselves for the diagnosis, e.g. been experiencing symptoms or have been previously warned by their physicians that they might be suffering from a specific condition, are more likely to also have experienced at least some of the emotions around the illness.
While patients in Freeze reaction do not express emotions, they most likely are also not willing or able to consider information that is presented to them. They have disconnected to the point that they are not experiencing their feelings and not able to consider information.
Questions, or Lack of Questions
What patients say:
“Can you define…?”
“What are the side effects of…?”
“What experiences have you had in treating other patients with this approach?”
Body Language:
Patients who are engaged in asking questions will demonstrate active listening, including eye contact and nodding. Patients who are avoiding asking questions will look away, and appear to be either disinterested or overly compliant.
Figure 5-__
Photo of patient engaged
What’s going on with the patient:
Patients’ willingness to ask questions is one of the most telling ways to gauge their willingness to consider the facts and make a decision. While excessive questioning can begin to feel like skepticism and second-guessing to a healthcare professional, nevertheless patients who ask questions are willing to hear information and want to learn as much as possible as they move toward a decision.
Clearly, some patients are better able to articulate a question, and respond with questions that further deepen the discussion, than others. Patients who have not educated themselves, for example, or are not accustomed to communicating with medical professionals, may require some assistance from the healthcare professional in better articulating the question. And patients may express fears about the answers they might receive, or otherwise express ambivalence at receiving the ‘whole truth.’ Some sensitivity regarding how the answer is given, in terms of being more tentative and hopeful (within the confines of being honest) than blunt, will serve to encourage patients to continue asking questions.
Keep in Mind: Have you ever made a decision that, looking back, you realized you had jumped into without thoroughly considering the options? Think about what caused you to make the decision so quickly.
When Patients Overestimate Their Readiness
Newly-diagnosed patients may at times assume they are ready to make a medical decision when, in actuality, they are not. There are a range of reasons why this occurs.
Figure 5-__
An illustration of a patient anxious to being treatment, e.g. waiting impatiently to begin a race.
Sense of Urgency
Patients often feel a sense of urgency around their medical condition. A cancer diagnosis, in which the patient fears that the cancer is growing and spreading rapidly, which may or may not be true, is an obvious example. Patients with cancer diagnoses often want to start treatment as soon as possible. Heart conditions also result in a sense of urgency if the patient fears that they may be destined for a heart attack, as may diabetes for patients who fear the potential of loss of sight or amputation. Out of the sense of urgency, and impatience to move forward with the treatment, patients may profess a comfort level with the recommended course of treatment and/or impatience with being presented with multiple treatment options. While this sense of urgency may have a positive effect on compliance, patients making quick decision out of urgency may enter into treatment unprepared for the effects of the treatment and, potentially, with unrealistic expectations regarding effectiveness.
Figure 5-__
An illustration of a patient overloaded with information
Information Overload
Newly-diagnosed patients may feel so overwhelmed with their diagnosis, and the information they have had to listen to and attempt to process, that they reached the level of information overload. The result of information overload is cognitive exhaustion. Patients may feel that their minds can’t hold any more information and that they can’t take in, or process, any more. The risk is that the patient may shruggingly grasp at the alternative that seems most understandable, and proclaim that they have made a decision. Furthermore, information overload can become so uncomfortable that patients may decide against seeking additional information, even from a source that might prove to be both reliable and helpful, such as the experiences of another patient.
Figure 5-__
Illustration of a patient smiling at their nurse.
Pleasing the Healthcare Professional
Newly-diagnosed patients often feel a strong bond with their diagnosing physician, or may want to establish a bond, as they anticipate working with this individual through treatment and possibly beyond. Superstitious thinking may be operating here. Patients consciously and subconsciously want to believe that their physician holds some kind of ‘magic’ that will result in their recovery, if the physician chooses to employ this magic. Consequently, they also feel that they need to do whatever possible to show their faith in their physician by professing their loyalty and somehow ‘pleasing’ him or her. Patients who are experiencing fear and uncertainty are especially likely to want to believe unconditionally, and to want to demonstrate this to their physicians.
One of the ways that patients feel they can please their physician is by professing immediate faith in the recommended course of treatment, and expressing a ‘positive attitude.’ Patients in Flight reaction are likely to react to their physicians in this manner. While this enthusiasm may streamline the pathway from diagnosis to initialization of treatment, patients may also have unrealistically high expectations in terms of expecting the physician, and other healthcare professionals, to be flattered and to form a deeper emotional bond with them, and patients may also have magical expectations about the treatment, e.g. that they are going to receive a treatment that will totally eradicate their condition and quickly return them to their former lives. Patients who are focused on pleasing their physicians through premature readiness to move forward with treatment may not listen to information about less positive aspects of the treatment like timing and side effects. The need to please can also be framed as a need to ‘pacify’ the healthcare professional as a means of avoiding having to hear any more negative information.
Figure 5-_
An illustration of a patient squeezed between multiple options.
Resolving Discomfort
When faced with multiple options, ambivalence can result. For example, patients may see the pluses and the minuses of each alternative, and not be able to decide which direction to go in. Or, they may see the value of the direction that their primary healthcare professional is recommending, but also see advantages to an option that they have read about or that has been recommended through a second opinion. The discomfort that comes from sitting with ambivalence may become so strong that the patient decides to ‘give in’ to the healthcare professional who makes the strongest recommendation, or ‘flip a coin’ between two options merely to ‘get it over with.’
Figure 5-__
Photo of a patient flipping a coin
Facilitating the Medical Decision-Making Process
Healthcare professionals play a wide range of roles for newly-diagnosed patients who are faced with making treatment decisions. These roles include educating patients on the alternatives and helping patients to weigh the risks and advantages of each alternatives. The healthcare professional may recommend resources for a second opinion and/or make a recommendation for which treatment route to take. And the healthcare professional will inevitably play a supporting role as the patient moves forward with the results of this decision, going through treatment and subsequent recovery.
Keep in Mind: Have you ever looked to someone else to help you to make a difficult decision? What did they do that helped you? Anything they could have said or done to be more helpful?
Figure 5-_
A photo of a patient sitting with a healthcare professional and having a discussion.
The Overarching Goal: Building Trust
Healthcare professionals can be most helpful in facilitating the decision-making process for their patients if they are able to build a relationship based on trust. A high level of trust may or may not mean that patients will trust their healthcare professionals to recommend the optimal course of treatment and, in turn, pursue this direction without question. Actually, most healthcare professionals prefer that the patient only make a treatment decision after carefully considering the options.
However, patient trust in the healthcare professional does mean:
- Patients trust the healthcare professional to ask the right questions and to understand how to competently use medical equipment and understand test results.
- Patients trust the healthcare professional to be aware of the latest treatments and to provide a balanced discussion of the benefits and risks of each treatment.
- Patients trust the healthcare professional to listen to their concerns and answer their questions honestly and in terms that they can understand.
- Patients trust the healthcare professional to consider their opinions, including opinions based on what they have learned through their own research, as well as to consider opinions they have gained by consulting with other healthcare professionals.
Establishing this level of trust during the initial treatment decision-making process is not completely under the control of the healthcare professionals. As discussed in previous chapters, newly-diagnosed patients bring their own experiences and prejudices to the relationship, and patients may subsequently erect barriers that are difficult if not impossible to overcome. How patients are reacting – Flight, Freeze, Fight – plays a role, especially in regard to the role of emotions. However, below are some basic techniques to both create an environment in which patients are more likely to lower their defenses and be open to the information provided by their healthcare professionals.
A Decision-Making Toolkit for Healthcare Professionals
The following are suggestions for creating trust and facilitating the decision-making process for newly-diagnosed patients:
Listening and Being Supportive
Listening to another human being is the greatest way to honor them. Newly-diagnosed patients can greatly benefit from being with healthcare professionals who are willing to simply listen to their concerns, gently probing around areas that, if illuminated, might help the patient to make a more informed decision. Being a good listener means being non-judgmental, being open and receptive, without showing disapproval or otherwise directing the patient toward what the healthcare professional wants or does not want to hear. When patients feel that their healthcare professionals are listening to them, they are more likely to feel as if their individual needs are being acknowledged and considered in the information that they receive. Essentially, patients are more likely to feel that their healthcare professionals care about them. During what can often be a highly stressful situation, as the implications of various treatment options are considered, this reassurance can be invaluable to a patient.
Sample Dialogue
Patient: I am being hit with a lot of options right now, and I don’t think I am qualified to make a decision.
Healthcare professional: Let’s go through each option, starting with surgery. Why don’t you tell me what you are thinking about each one in terms of the advantages and what you are worried about.
Patient: I told you I’m not an expert. You’re not going to get much out of listening to what I have to say.
Healthcare professional: Actually, I think I would get a lot out of this. I’m really interested in knowing how you view each one. For example, you mentioned that you had heard that surgery would provide the quickest route to recovery. Tell me some more about what you know about the surgical option as well as what you aren’t so sure about surgery.
Reflective Listening Reminders
- Lean forward toward the patient and make eye contact
- Nod as the patient is talking
- Maintain open body language, e.g. avoid crossing the arms or legs
- Reinforce your listening with phrases like ‘ok’ and ‘got it.’
- Encourage the patient to go deeper into concerns that will impact the decision, including discussing ambivalence about deciding between two or more treatment options
- Reinforce a non-judgmental attitude by identifying the patient’s concerns and repeating them back to the patient
- Help the patient to identify remaining questions that need to be answered before a decision can be made
Figure 5-__
A photo of a healthcare professional presenting information to a patient.
Educating the Patient
Patients will be most receptive to information if it is presented from the perspective of an educator. There is a not-so-subtle difference between lecturing a patient and educating a patient. When a patient is lectured, the facts are presented in a one-size-fits-all format and the patient is left to digest what was clear and what was not so clear. Educating a patient is a step-by-step process which begins with gaining an understanding of what the patient currently understands, and the stepping through the process of expanding the patient’s knowledge, supplemented by check-ins along the way to assure that the patient is indeed understanding what is being discussed while also gauging how the patient is reacting emotionally. As such, educating a patient requires interacting with the patient on both cognitive and emotional levels.
Patients appreciate hearing about the treatment experiences of other patients with the same diagnosis, through anecdotes, printed information, and links to Websites. They also respond well to third party information about their diagnosis, and the treatment alternatives, published through independent organizations like the American Heart Association or the American Cancer Society. Brochures provided by pharmaceutical companies can also be useful as an information source. The benefit of providing patients with information from various sources reinforces that the healthcare professional is attempting to be objective, and that he/she is making recommendations that are widely acceptable in the field and that have benefited other patients in the past.
Patients respond well to healthcare professionals in an educational role from an emotional perspective. While newly-diagnosed patients are usually unfamiliar with interacting with healthcare professionals at the level of involvement required after a diagnosis has been made, they are familiar with the teacher-student role and have generally positive associations with this relationship. Consequently, they may relax their defenses when healthcare professionals present themselves in the teaching role. And the teacher-student relationship is certainly positive when patients are attempting to gain and process the information necessary to make an informed medical decision.
Sample Dialogue
Patient: I’m kind of lost right now on what to do next.
Healthcare professional: Would you like to sit down and go over the facts about your condition and the ways it can be treated?
Patient: I have a feeling most of this medical jargon is going to be lost on me.
Healthcare professional: I would be happy to go through it step-by-step. We’ll start by talking about what you already know, and then move forward from there.
Patient: Okay.
Healthcare professional: Great. Now your doctor has recommended making some changes in your day-to-day life. What did she tell you about that?
Patient: I can tell you that I know I am going to need to go on a diet that I’m not going to be very happy about: No salt, no sugar, no taste.
Healthcare professional: I can see why that wouldn’t seem like anything to look forward to. I don’t blame you for not looking forward to it. But I have some brochures from an independent medical organization to give you, and they include some simple and healthy recipes. And I can recommend a great dietician to talk to. Does that sound like a plan?
Tips for Educating Patients
- Offer to educate the patient so that he/she feels in control of the situation.
- Start by getting an understanding of what the patient currently knows about treatment options.
- Acknowledge feelings.
- Gradually build upon the patient’s knowledge, taking time to assure that the patient understands what they have been presented and seeing if they have any questions or reactions before moving on.
- Reference third party resources in the discussion to enhance credibility and to reassure patients that he/she is being presented with state of the art information.
Promoting Teamwork
Patients want to feel like they are working with their healthcare professionals as a team. Teamwork implies that not only do the healthcare professionals care about their welfare, but that they also have a stake in seeing them get better. This is especially important when patients are making decisions about their treatment because teamwork enhances a sense of security and facilitates greater communication. Healthcare professionals can encourage a sense of teamwork by directly referring to themselves as members of the patients’ team, as well as through more indirect methods like sharing information, continuing to check in with patients regarding concerns and feelings, and answering questions in an honest manner.
Sample Dialogue
Healthcare professional: I want to reassure you that we view our relationship as a team. Your doctors and nurses and other healthcare professionals you work with are members of that team, and you are also a team member. We’re going to be working together as you go through your treatment and recovery. How does that sound?
Patient: It sounds good.
Healthcare professional: One of the things teamwork means is that we are going to be sharing our knowledge of the options for treating your condition. We want to make sure you are well-informed and to answer any questions you have. And we’ll share our experiences with treating other patients with your condition.
Patient: What does that mean for the next steps?
Healthcare professional: As a team, we’ll work together to decide on the best option for treatment. We’ll work together to make the best decision, but you’ll always be part of the process.
Figure 5-__
Photo of a group of healthcare professionals with a patient, as if they are a team
Tips for Enhancing Teamwork
- Be direct in explaining the teamwork approach and what this will mean for the patient.
- Wherever possible, use ‘we’ instead of ‘us’ and ‘you.’
- Clarify the concerns that members of the healthcare team regarding treatment options in terms that the patient will understand.
- Emphasize that information is being shared and that the patient’s opinions and questions are important.
Encouraging Self-Efficacy
There is a subtle difference between advising and educating a patient. When patients feel advised, they assume that the healthcare professional is basically telling them what to do. While patients may appreciate direct advice, they may also be skeptical of this advice, based on the assumption that the healthcare professional’s personal biases are being reflected in this advice. Furthermore, patients who perceive that they are being directed toward a specific treatment will be more likely to feel less in control of their healthcare and less likely to take personal responsibility for the decision.
Self-efficacy is enhanced when patients are encouraged to be independent and self-directed during the process of making medical decisions. This can be accomplished in a variety of ways. Guiding patients toward their own information-gathering can be a starting place in building a sense of control. Allowing patients to make simple choices wherever possible, e.g. where they report to for tests, or what kinds of exercise they choose, can begin to instill the idea that patients can be active in their treatment. While patients realistically have only a limited amount of power over their treatment destiny, encouraging as much self-efficacy as possible helps to provide a feeling of involvement and influence that can help to counter the sense of helplessness that ultimately all newly-diagnosed patients experience at some level.
Sample Dialogue
Healthcare professional: We talked about getting another MRI before we decide on treatment. Do you remember that?
Patient: Yes, I do. I remember you wanted to see if I had done any additional damage when I fell last week.
Healthcare provider: Exactly. When I explained what was going on with your back, you had mentioned that you were going to look up your condition on the Website of the American Association of Orthopedic Surgeons. Anything you learned that you found useful?
Patient: Actually I printed out a few pages to go over with you.
Healthcare provider: Great idea. But before we do that, I want to schedule the MRI. Your insurance company will allow you to have it done at the hospital or to use a private lab that might be closer to you. Do have a preference?
Patient: Yes, I work near the hospital, so I would like to try to do it there.
Healthcare provider: It’s your choice. Let me make a quick call and then we’ll talk about what you found on the Website.
Tips for Building Self-Efficacy
- Use ‘you can’ statements.
- Provide options for the newly-diagnosed patient to make choices whenever possible.
- Encourage self-directed exploration of information regarding the condition and its treatment.
- When evaluating treatment options, allow the patient to express preferences and concerns before healthcare professionals express theirs as a means of building confidence.
Being Sensitive to the Readiness Factor
The importance of readiness to listen to information and to make decisions has been implied throughout this discussion. Patients progress at their own individual levels of readiness in terms of when they can hear and process information. Some patients can begin immediately after diagnosis to listen to information and consider their options, while others can’t. Emotions, past experiences, and current knowledge level all play a role here, as does how the patient is reacting to the diagnosis. The patient’s individual intellectual abilities are also a factor. Overall, lingering concerns of readiness are the result of unresolved fear. However, a contradiction also exists. While patients may not feel ready to face their condition and its treatment, the situation may be of an urgency that patients may need to make decisions before they have achieved emotional readiness. There are no clear guidelines here – the patient’s individual readiness must be weighed against the urgency of beginning treatment.
Sample Dialogue
Healthcare professional: The doctor has asked me to talk to you about scheduling your first treatment. We’ll sit down together and talk about potential dates, and then I’ll call the hospital and see what they have available.
Patient: Do we have to do this right now?
Healthcare professional: Sounds like you are feeling some hesitance about getting started.
Patient: It’s happening too fast. It’s like I am being railroaded into something that I might not want to do.
Healthcare professional: That certainly isn’t our intention. Maybe we need to take a couple of steps back and talk about your treatment.
Patient: I’m just not sure I’m ready to do this. I’m not sure if I’ve really considered the options.
Healthcare professional: Okay, let’s go through them again and I’ll clear up any questions you might have.
Tips for Gauging Readiness
- Watch for demonstrations of hesitancy on the part of the patient, verbally and through body language.
- Avoid being too aggressive about pushing for further actions around treatment, such as scheduling, to avoid causing the patient undue stress and building resistance.
- Encourage the patient to talk about any hesitancy they might feel.
- The act of listening to patient’s concerns, and encouraging the patient to ask any additional questions, may help the patient to achieve a greater level or readiness because he/she may simply need to review their knowledge and the decision and feel that it is validated.
Keep in Mind: Have you ever been so worried about someone that you felt like jumping in and taking over someone’s life for them?
When Healthcare Professionals Experience Helplessness
Because healthcare professionals have witnessed what patients encounter during the period of time leading up to treatment, and beyond, it is not surprising that they may become frustrated or alarmed when a patient appears to have hesitations about moving forward with their treatment. This reaction arises out of practical time management concerns; time spent talking to patients about treatment decisions is not unlimited. This reaction also arises out of concern that patients not delay treatment out of indecision.
In this situation, the healthcare professional may feel a sense of helplessness in feeling like he/she knows what is best for the patient, but the patient is not listening. The danger here is that the healthcare professional will act out of this helplessness and subsequently cross professional boundaries by imposing his/her will upon the patient. This will, in turn, alarm or alienate the patient. While it is not uncommon to have these concerns, it is important to establish boundaries between what the healthcare professional wants for the patient and what the patient is ready, willing, and able to process.
When professional boundaries are at risk, it is recommended that another healthcare professional be brought into the relationship. Remember that when you make a decision for someone else, what feels like helping them is actually taking their power away.
Figure 5-__
Photo or illustration of a healthcare professional addressing a couple.
Getting Family Members Involved in Making Decisions
Newly-diagnosed patients do not make treatment decisions in a vacuum. Family members are directly affected by their treatment in a variety of ways. They are experiencing their own fears as they consider not only how treatment might impact their loved ones, but also how their lives may be affected. Providing emotional support during the decision-making process can be stressful – family members may be even more aware of the risks than are the patient, especially in a life-threatening situation where the healthcare professionals may be having even more frank conversations with the family members than with the patient, and caregivers may be doing their own research as well. Treatment that requires a lengthy recovery time, or a chronic illness, presents issues that include finances, assignment of caregiving duties, and other changes in daily routine for the entire household. Consequently, family members are in many ways as affected by the treatment decisions as are the patient.
As discussed previously in this chapter, patients are not always presented with complicated treatment decisions. Depending on the condition, the treatment options may be relatively limited, or treatment may be based on established best practices. Treatment for other conditions may be less clear cut. However, regardless of the treatment route chosen, household routines will be impacted, and the potential for change presents the need for numerous decisions. Questions arise such as: How will we get by with a reduced income during the recovery? What will our meal routines be like when one family member is on a different diet? How will help watch over compliance with medication regimens?
The following are considerations for working with family members during the process of making treatment decisions (It may be useful to refer to Chapter 12, in which family communications are discussed in depth, to gain a more in-depth perspective on how to communicate with families during this time.)
Provide the same information to patients and their family members, so that they are making decisions on the same set of facts. This reduces the suspicion that patients often feel that they are not being given the complete picture.
- If possible, outline the treatment options – including not only the treatment itself, but ongoing lifestyle management considerations – in a joint discussion with patients and family members when discussing treatment decisions.
- Family members often feel overwhelmed by the potential responsibilities of caring for an ill family member. They may hesitate to voice their concerns out of a sense of guilt, though these concerns may influence the advice that they give to the patient. It can be helpful to provide family members with an opportunity to discuss their concerns separately with a healthcare professional who can answer their concerns honestly but also inform them of available resources.
- As needed, be ready to make referrals to other allied professionals, like home care services and social workers, who can offer services to family members.
- Emphasize that the patient is the ultimate decision-maker when discussing treatment options with patients as well as with family members.
When working with patients in Freeze reaction, it may be necessary for family members to step in and make all treatment decisions. In the absence of the patient’s willingness to do this for him/herself, family involvement may be the only option. Patients in Flight reaction may also require family involvement if their emotional reaction is such that they are not able to face this decision. Fighters can inspire confidence in family members as they face their condition and take responsibility for their destinies; however, they may also be perceived as stubborn when their independence clashes with a family member’s need for involvement in this process.
SIDEBAR: SELF-TALK
Examples of negative self-talk that newly-diagnosed patients might use when faced with a treatment decision include:
Why bother? I am probably going to die anyway.
I can’t know enough to make a life and death decision.
Now this is all on my shoulders. I guess nobody wants to take any responsibility for what’s going to happen to me.
All I see ahead of me is uncertainty.
My life is never going to be the same, any way I look at it. So why should I care about making decisions?
Antidotes to negative self-talk about decision-making include:
I don’t have to make this decision today. I can take time to get informed.
My healthcare team has my best interest at heart and they can help me make the right decision.
The road ahead is uncertain but I am getting the best possible support from my healthcare team.
I am facing change but I am taking it one step at a time.
I have access to accurate information and supportive people as I make decisions about my healthcare.
SIDEBAR: EDUCATIONAL MOMENT
Newly-diagnosed patients who are facing treatment decisions may express their fears and doubts in conversations with their healthcare professionals. When patients make comments such as ‘I don’t know how I’m going to make this decision,’ these are opportunities to reassure them that the healthcare team is available to answer questions, provide information, and offer support. Patients need reassurance that they are not facing these decisions alone.
Rx: Coming to a Treatment Decision With a Patient
Walter, the patient at the beginning of the chapter who had been diagnosed with prostate cancer, sits down with Toni, one of the nurses in the hospital oncology clinic. Toni will be responsible for overseeing Walter’s care, pre- and post-treatment. Dr. Shapiro has gone over Walter’s file with Toni and she knows that he is struggling with making a decision about his treatment.
Walter: I feel like this whole decision is being dropped in my lap. I don’t want to be told what to do, mind you, but I’m also not sure if I trust myself to make the right choice.
Toni: You’re really feeling scared about this decision and what it’s going to mean to you.
Walter: You’re darned right I am.
Toni: We’re here to help you decide, Walter. You’re not alone.
Walter: That’s good to know.
Toni: You’ve probably heard that knowledge is power. For you to be as comfortable as possible with the direction your treatment takes, we want to make sure you are fully aware of the treatment options and what each option will mean to you. And I know you are aware of what the doctor is recommending at this point.
Walter: Yes, but I am the guy who has to live with this decision, so I know I need to have my part in making it.
Toni: Exactly. Now let’s talk about where you are right now with this decision. What’s on your mind?
Walter: I listened to the doctor and I did some research on my own. I printed out a lot of stuff from the Internet. Some of it is pretty scary.
Toni: We can go through the options together. I have been through this with a lot of patients dealing with the same thing as you. But before we do that, let’s take a step way into the future, and then work backwards from there.
Walter: What do you mean?
Toni: Well, you have a prostate cancer diagnosis. Looking into the future, what would you say is your treatment goal?
Walter: Easy. I want to be alive. I want to be at my job. And I want to have sex with my wife on some kind of a regular basis.
Toni: Okay. So that is you want to end up. You are certainly clear on that one. As the doctor told you, these are all possibilities, though the return to your sex life may be somewhat gradual, and we can’t guarantee that things will be exactly like they were before your treatment. Can you work with that?
Walter: I guess I’ll have to.
Toni: Here’s my suggestion. Let’s take your goals, and then consider each of the treatment options based on these goals. Does that sound good?
Walter: Why not?
Toni: I’ll start by making a chart on this sheet of paper. At the top I am going to list your goal based on what you told me: alive, working, having sex. And then I am going to list the potential treatments along the side. Are you with me so far?
Walter: I think so.
Toni: Good. And then as we go through each of the options, we are going to evaluate it according to your goal. As we do this, I am going to show you the statistics about each treatment. And I’m going to go over the advantages and disadvantages, and tell you about my experiences with other patients. Okay?
Walter: Let’s do it.
After Toni and Walter discuss the treatment options…
Toni: What are you thinking, Walter?
Walter: Well, I at least have a better idea of the direction I don’t want to go in, so I guess we are doing a process of elimination. I’m not there yet but I guess since there used to be three options and now there are two, I am 33% closer. And I’m leaning toward the doctor’s recommendation, so maybe I am even closer. Not too shabby.
Toni: That’s a good way to look at it. What would you say are your biggest questions now?
Walter: I’m not sure if I know what my questions are. I am kind of loaded with information right now. Maybe I need to sit with this for awhile.
Toni: I could offer you some additional help, if you would like me to.
Walter: Help is a good thing.
Toni: You had mentioned wanting to get an option from another practitioner. I could give you the name of a Website that could provide you with a few local doctors to follow up with. I could also give you the names of a support group you could attend where you could meet other men who have also been treated for prostate cancer. You might learn something from them as well.
Walter: I am not sure if I am a support group kind of guy, but I’ll think about it. But I’ll take the name of that Website. I’d like to get another opinion before I jump into anything.
Toni: Great. I’ll write it down for you. And I’m standing by whenever you want to talk more. But I’ll also be following up with you in a few days.
Guidelines for Coming to a Treatment Decision
Here are guidelines to consider when working with patients during the treatment decision-making process:
Figure 5-___
An illustration of the decision process, using stair steps, as in other chapters. Labels for the steps include:
Define goal
Educate patient
Review implications
Weigh risks and benefits
Narrow options
Negotiate
Choose path
Help the patient to articulate a realistic goal for treatment.
The starting place for a treatment decision may actually be the end point. Patients and the healthcare team may be talking around treatment but not have actually taken the time to get down to the specifics in terms of expectations for treatment. Questions to ask include: Is it full recovery? Partial recover/remission? Will the condition require ongoing medication management and lifestyle modifications? If the treatment will result in change, what kind of changes?
The healthcare team may want to meet first and determine what is realistic and what is not realistic for the patient so that this perspective can be presented during the conversation and discussed with the patient. The team’s perspective also needs to be reflected in the goals. Because of the need to include this perspective, the discussion of treatment goals can be a difficult one, and may require some adjustment of expectations on the part of the patient. Notice that, in the example above, Toni reminded Walter that he might have to modify his expectations regarding his sex life. However, if this discussion does not occur, the patient may enter not enter into the treatment fully informed.
Work backwards from the goal. What do we have to do to reach it?
Once the patient has defined his/her goals, he/she will most likely be in a better position to understand the treatment options, both short and long-term, because these options will be grounded in reality. The patient will now be clearer on what is possible and can begin to understand what it will take to reach the treatment goal. Any ambiguity – over or under-expectations – will be resolved. Treatments, recovery, outcome probabilities, lifestyle modifications… can be discussed in terms of the goal. In the example, Toni took the time to write the patient’s goals on a sheet of paper to assure that the discussion remained focused on goals.
Educate the patient about the treatment options.
With pre-determined goals to work from, patients are likely to be more receptive to information about each treatment option. As discussed previously, patient education begins with assessing what the patient currently knows as well as the level at which he/she can understand information. In the example, Toni’s approach was to describe each of the treatment options in terms of Walter’s key goals. During this process it is important to assure that the patient understands each option and the implications for recovery, relationships, and day-to-day lifestyle.
Help the patient to narrow down the options.
During the process of reviewing the options with Walter, Toni helped him to narrow down the options. She was able to do this because, by discussing the options in light of Walter’s specific goals, it became clear that at least one of them would not be acceptable. Of course, the options are more straightforward with some conditions than they are for others, depending on the condition itself, and whether it is life-threatening, acute, or chronic. Therefore the level of guidance that healthcare professionals may need to offer will vary accordingly. Also, the physician may have one or more recommended courses of treatment, with minimal flexibility for patient choice. This may result in some skepticism on the part of the patient, as well as resistance. In the example, Toni also offered Walter referrals for a second opinion and the opportunity to talk with other patients facing the same condition.
This is an area in which the healthcare professional will want to use his/her judgment in terms of how the patient is guided in weighing the options, and how the physician’s recommendation is reflected in the discussion. Professional ethics, as well as the guidelines established by the individual clinic or physician’s office, will guide this discussion.
Some negotiation may be needed.
Clearly, some aspects of treatment are not negotiable. However, patients need to feel that they have some control over their destiny, and patients are more likely to participate in – and subsequently embrace – treatment decisions if they feel that they have some input. While some aspects of treatment are determined based on best practices and are non-negotiable, there is often at least a small amount of flexibility in areas like start dates, morning versus afternoon schedules and, in some cases, the venue in which the treatment is delivered. Patients are more likely to be compliant in lifestyle management decisions if they are allowed some control. Diet and exercise requirements, for example, may be flexible depending on patient preferences. Consequently, the healthcare professional and the patient may go through some negotiations as they come to an agreement regarding direction of the treatment.
Patients may simply decide not to decide.
Some patients may decide that they do not want a role in decision-making but, instead, prefer to leave this to their healthcare providers. For patients who are not Fighters, the passive decision-making position may be ultimately what they choose. While not optimal, the physician may be left to make this decision for the patient, with the other members of the healthcare team charged with carrying out the physician’s directions. (And some physicians prefer to take this role with their patients.) The risk is that patients may later resist these decisions which can affect compliance and ultimate satisfaction. However, in the absence of a willingness on the part of the patient to be involved, this may be the only option.
Keep in Mind: Have you ever felt resistant when you felt that someone in authority was attempting to dictate what you should do? Patients do not respond well to feeling like the healthcare professional is forcing decisions on them, or that they are being pressed into making decisions prematurely.
Summary
Making treatment and other healthcare-related decisions is daunting to patients who, after all, generally have no medical background and minimal experience in making these kinds of decisions. The emotional impact of a medical diagnosis further impacts the ability to make these decisions, beginning with the ability to process the information required to make informed choices. By understanding the challenges that patients face as they contemplate their choices, healthcare professionals can be effective in facilitating the decision-making process.