Opening Case Study
Shana received her diagnosis a few days ago. At that time, her healthcare professionals had given her some basic information about her condition and described the treatment options, and had also sent home information with her. At that time, Shana had listened quietly but hadn’t talked much, and they knew she needed time to react to this news and to begin processing it. Before leaving the clinic, Shana had scheduled a return visit.
On the return visit, Lars, a physician’s assistant, sat down with Shana to review what had been discussed with her physician when Shana was first diagnosed and to answer any further questions that she might have. Lars immediately observed that Shana had been crying.
Keep in Mind: If you were Lars, what would your instinct be in terms of how to approach Shana? When patients exhibit strong emotions, healthcare professionals can sometimes feel unsure about what to say.
Lars asked Shana if she was ready to talk some more about her diagnosis. Shana nodded her head in affirmation, but she was visibly upset and had difficulty saying more than ‘yes.’ Consequently, while Lars had planned to begin the discussion by briefly describing Shana’s treatment plan, he reconsidered this approach. Clearly, Shana was too upset to talk. And while Lars wondered if he should avoid commenting on Shana’s emotional state and review the facts while she composed herself, he wasn’t sure is she would be able to really listen to this information and participate in any discussion. He decided it would be best to pause for a moment.
“Are you okay, Shana?” he asked gently?
Shana slumped forward in her chair. At this point, he knew that he had to give Shana time to experience her feelings before she would be able to talk further.
“Hey, Shana,” Lars said. “You look really upset. Do you want to talk about it?”
Shana burst into tears. Lars reached for a box of tissues, and placed it in front of her. He sat with Shana as she cried, but didn’t speak.
Figure 3-__
Photo of a patient crying with a healthcare professional.
Keep in Mind: What your internal reaction be to a patient who is this emotionally distraught? What would you say? How comfortable would you be with maintaining silence while the patient experiences strong emotions? At what point would you feel you were ineffective? At what point would you be concerned that you might be over-stepping your professional boundaries?
Introduction
“I feel so sad.”
Regardless of the way in which patients are reacting – Flight, Freeze, or Fight – the reaction to the medical diagnosis is accompanied by a range of emotions, including anger, fear, sadness… and a multitude of other emotions, including in some cases, relief. Patients are individuals, with their own unique set of life experiences and their own ways of coping emotionally with stressful situations. Information plays a role in that having an understanding of one’s medical condition, and a sense of the prognosis as well as how treatment and ongoing life management implications.
Healthcare professionals are not expected to be psychotherapists or counselors, nor to deliver direct mental health services to their patients. On the contrary, attempting to counsel patients without the benefit of being a trained mental health professional can be harmful to the patient and risky for the untrained professional. However, it is important for healthcare professionals to be able to recognize the emotional reactions of their patients for a variety of reasons.
First, patients who are preoccupied with their emotions cannot listen and process information. For example, they can’t hear (they hear but they are not listening) to information about their diagnosis and they can’t ask relevant questions. If the patient’s emotional state is not acknowledged by the healthcare professional, time spent attempting to discuss the facts is wasted. The patient may as a result become more distraught and confused, and may misinterpret what is being said. This may lead to further resistance and emotional disturbance. This can be frustrating and alarming for the healthcare professional.
Secondly, while newly-diagnosed patients may have access to their emotions and express them openly, they may also suppress their feelings. Suppressed feelings ultimately have the same affect on conversations about a medical diagnosis as do directly expressed feelings. Patients struggling with emotions can’t listen or otherwise interact in a way that is going to be productive.
Healthcare professionals, in spite of the challenges and the limitations, do play an important role in helping patients cope emotionally with a diagnosis. For better or worse, patients may, at least when initially diagnosed, have no other emotional support beyond, for example, the members of the healthcare team. Family members may not yet have been brought into the discussions about the diagnosis, or they may not yet be ready themselves to cope with the diagnosis (this will be discussed further in Chapter 11. Patients may not yet have the words they need to discuss their feelings and reactions, and may be depending on their healthcare providers to support them emotionally as they come to grips with how they are feeling.
While patients will over time develop an emotional support network, often with the guidance and encouragement of their healthcare professionals, if they are able to make an emotional connection early on in their diagnosis, they will be that much better prepared to cope as they move forward with their treatment. (REFERENCE?) Healthcare professionals can essentially pave the way for their patients.
The Role of Emotions
Hearing news of a medical diagnosis can bring up a lot of feelings in a newly-diagnosed patient, many of these feelings are uncomfortable and, consequently, may be unacceptable. It is common, for example, to feel sad, scared or angry. After all, a medical diagnosis brings with it the probability of change – in routine, in relationships, in self-image – and human beings are creatures of habit – they are not ‘wired’ to embrace change. A medical diagnosis brings about a sense of uncertainty about the future, and what challenges might soon be presented. And a medical diagnosis can introduce fears about loss, including finances, relationships, favorite activities… if not one’s vision for the future.
Newly-diagnosed experience their emotions in a way that is unique, based on individual factors that include:
- Perceptions of the severity of the diagnosis and its potential affect on their lives
Patients often have minimal information about their condition when they first receive their diagnosis, or erroneous information, or a vague awareness of the condition but not enough of the facts to evaluate it in terms of the implications for their lives. These perceptions – and misperceptions – may lead to an emotional reaction that is not consistent with reality. Alternatively, patients may be well versed in their condition and experience emotions are realistic and consistent with its severity. Either way, perceptions have a direct influence on emotions.
- Their personal style in terms of how they cope emotionally and comfort level in expressing emotions
Some people grow up in families in which emotions are always on the surface, and family members are encouraged to express how they are feeling. In other families, emotions are not so acceptable, and are kept below the surface. Newly-diagnosed patients who don’t have a history of being comfortable with their own feelings will most likely have difficulty talking about, or expressing, how they feel.
- Whether they are in Flight, Freeze, or Fight reaction
As discussed in Chapter Two, emotions are closely tied to how the patient is reacting to the diagnosis. Patients in Flight reaction will most likely be highly emotional, though they may also appear to be ‘stuck’ in one emotion, like fear or sadness, and have difficulty moving beyond it. The key characteristic of patients in Freeze reaction is that they are suppressing their emotions. It is important to keep in mind, however, that suppressing emotions doesn’t mean that the patient is not having an emotional reaction. Patients in Fight reaction may express a range of emotions – what makes them Fighters is that they are able to have their feelings without suppressing them, and without being controlled by them, and to think rationally as well.
- Experiences in coping with illness personally, or with friends or family members
Newly-diagnosed patients who have had a past illness may experience some of the same feelings that they experienced in the past. Having already dealt with a medical diagnosis may have provided them with coping skills upon which they can draw in dealing with a new diagnosis; alternatively, the diagnosis can reignite fears and other feelings that they had hoped not to re-experience. Patients who have helped a friend or family member cope with a medical condition may react similarly. This experience may have imparted a sense of knowing how to cope after having gone through this process with someone else.
The Unanswerable Question That Must Be Asked: Why Me?
Newly-diagnosed patients inevitably ask one question, namely, ‘Why me?’ This may be a medical question, as the newly-diagnosed patient tries to understand the medical reasons behind the diagnosis. They may feel a sense of self-punishment as they ask it, wanting, and not wanting, to know if they had done, or not done, something that might have led to the diagnosis. Patients with conditions like lung cancer and Type II diabetes often have the sense that their lifestyle choices may have contributed to their diagnosis. Genetics may play a role in the patients’ thinking if the condition was inherited. The ‘Why me?’ question may be spiritual in nature, as the patient looks at the diagnosis from a spiritual perspective. This may lead to a closer examination of religious beliefs and/or issues of fairness and unfairness. Patients may have a sense of guilt around this question, and wonder if they have the right to even question why they might receive this news versus the diagnosis being given to someone else.
Here is an example of how one patient verbalized this experience:
My first question was, ‘Why me?’ I knew in my mind that it was a question without an answer. But still, I had to ask it. Why was this happening to me? I certainly didn’t think I had done anything to deserve it. And in some ways, I felt guilty for asking it. I mean, bad things can happen to anyone.
Figure 3-__
An illustration of a patient with a thought bubble: Why me?
The ‘Why me?’ question often leads to an emotional reaction – sadness, anger, disappointment. For many patients, this is the question that ‘opens the floodgate’ to their own emotions, because it is a way of articulating that basic question of fairness and the role of fate. These are core issues that patients grapple with as they begin to process their diagnosis.
As implied in the example, there are multiple explanations for why a patient might be diagnosed with a medical condition. Some explanations may be more acceptable to individual patients than others. Patients often come to the conclusion that, at some level, there really isn’t an answer to the question.
Healthcare professionals can discuss the medical issues with patients. While the medical reasons may be clear, or not so clear, having this discussion can at least help the patient to begin to gain some perspective on the diagnosis. Even learning that there is no medical reason for the diagnosis answers part of the ‘Why me’ question, and can provide reassurance regarding their own level of personal responsibility in the development of the condition. Ultimately, ‘Why me?’ is an existential question – a question of greater meaning from a spiritual perspective. Healthcare professionals are not responsible for answering this question but, on the other hand, discouraging patients from asking it can result in short-circuiting the process of coming to grips with the diagnosis emotionally.
It is recommended that the patient be reminded that:
- Asking ‘Why me?” is a normal reaction for newly-diagnosed patients
- There may, or may not be, specific medical reasons regarding why the condition arose
- Any guilt or self-blaming the patient feels can be discussed in a support group or with a trained professional
- Spiritual questions that arise are best handled with a member of the clergy
What Emotions are Newly-Diagnosed Patients Experiencing?
A medical diagnosis can lead to a wide range of emotions. Some of the key emotions experienced by newly-diagnosed patients are described below.
Fear
Yolanda’s Story
“All I could think about was how concerned my doctor was when she told me I was HIV+. I had never seen this look on her face before, and I just kept thinking that if she was this concerned, I must be in a lot of trouble. Big trouble. I felt like I was on the edge of a cliff and I needed to hang on to something but there was nothing to hang on to. And at any second I might go falling into the darkness.”
A medical diagnosis can result in feelings of fear, for a variety of reasons. One obvious reason for feeling afraid is being faced with the possibility of death, as Yolanda was experiencing. If a diagnosis is life-threatening in some way, as with conditions like cancer or HIV, patients may literally feel that their lives may be at risk. As such, the diagnosis may bring about a feeling of absolute terror at a dreaded possibility.
However, the possibility of death is not the only reason for fear. A diagnosis can completely shake up a newly-diagnosed patient’s assumptions about what the future might hold, and faith that they are on the right path in life. At least temporarily, the diagnosis may leave the patient feeling that they have nothing to count on.
Newly-diagnosed often identify fear as the emotion they feel most strongly, and emphasize that getting beyond ‘the fear factor’ was a key to coping emotionally. This topic will be examined in much more depth in Chapter Four.
Anger
Mark’s Story
“I said it right from the start. I was really ticked off about this. I was doing great in my career. My fiancée at the time and I had wedding plans in place. I was actively involved in my community. And then the doctor walked in and basically told me that I better plan on taking a year off to get medical treatment. I felt like everything I valued in life was being taken away from me. The world was laughing while I was standing there empty-handed. I wanted to yell and holler. And in fact I did.”
Anger is a common emotional reaction to a diagnosis. Patients describe anger as a reaction to feeling ‘backed into a corner with no options’ or, as Mark described it, being laughed at by the world. Anger is essentially a reaction to feeling powerless. But anger is an emotion that, for some patients, is substituted for other emotions. For example, in Western culture, men find it easier and more acceptable to express anger than emotions like sadness and fear. Patients may use other terms for anger, such as frustration.
Sadness
Leah’s Story
“I sat and cried for hours. The tears kept coming to the point that I didn’t think I had ever cried this hard in my whole life. At times, I felt like my body was going to turn itself inside out I was so sad. My diagnosis left me feeling like my whole life had been taken away, and I guess I was grieving for what I thought I had lost.”
Sadness is a common reaction to a medical diagnosis. As with Leah, it is an emotional reaction to loss. For newly-diagnosed patients, the sense of loss can be devastating as they consider modifications to their day-to-day life, changes in relationships, and possibly a greatly altered future. Patients feeling this level of grief appear to be inconsolable. Another word for sadness that patients may use is disappointment.
Shame
Mario’s Story
“When my doctor handed the Type II diabetes diagnosis to me, I said to myself, ‘you knew this was coming and you didn’t do a thing to prevent it. You kept eating anything you wanted.’ I didn’t do a thing to prevent my diabetes, and I knew all along that I was at risk. Now, it’s payback time for not taking care of myself. And the people who care about me are going to have to start watching over me like a child.”
We live in a culture in which the messages about health self-determination, especially in regard to factors like diet, exercise, and avoidance of smoking, are everywhere. We are taught that each of us needs to take responsibility for avoiding chronic illness. While there is a benefit to these messages, the fact is that many people do not do everything in their power to stay as healthy as possible, for reasons that include not knowing what to do and having difficulty managing the willpower to make what would need to be radical changes in their lifestyle. Consequently, individuals diagnosed with at least somewhat preventable conditions like Type II diabetes feel a sense of failure when they are diagnosed, and those around them, including their healthcare providers, may reinforce this sense of failure. The result is a feeling of shame, or guilt (and in our American culture, it is common to place blame on others).
Relief
Jana’s Story
“I don’t mean to imply that I was happy hearing that I had picked up a virus. It was going to mean lots of medicine and some time away from my job. But I’ll be honest. I had been sick for awhile and, during that time, many thoughts had passed through my head, mostly scare pictures of what could be going on in my body and what that might mean. So when my doctor said it was a virus, I felt like a load had been taken off my shoulders. I told myself, ‘this could have been worse.’ I think I had a good cry, I was so relieved.”
Patients may have been experiencing symptoms and, in the absence of information, had jumped to conclusions about what their diagnosis might be. Or, the diagnosis may, due to lifestyle choices or heredity, been suspected before it was actually confirmed. In either case, the diagnosis may be met with a sense of relief. Relief may be accompanied by other symptoms, like sadness or guilt.
Figure 3-__
Illustrations depicting various facial expressions.
Keep in Mind: What emotions are you most comfortable with expressing in challenging situations? Do you tend to get angry? Sad? Avoid your emotions? Most likely, newly-diagnosed patients will express the emotion that they are most comfortable with, based on patterns that they have previously established.
Flight, Freeze, Fight and Emotions
Newly-diagnosed patients’ reactions to the diagnosis – Flight, Freeze, or Fight – are primarily a function of how they are handling their emotions. Keep in mind that each patient may experience any number of emotions as they process their diagnosis and what it is going to mean for their lives. Here is a quick review of what can be expected in terms of how feelings are experienced and expressed:
Patients in Flight Reaction
Patients in Flight reaction may attach to one specific emotion. For example, they may experience extreme sadness or fear, and appear to completely give in to their emotional reaction. Because they are so emotionally focused, it may be difficult to reach these patients in terms of presenting them with information or having discussions about their diagnosis and its treatment.
On the other hand, patients in Flight reaction can be prone to attaching themselves to a physician or treatment, including alternative treatments, and out of an exaggerated sense of relief, exhibit emotions that are similar to joy or elation. This is due to a sense that they are going to be ‘cured,’ or otherwise on a path toward healing. Unfortunately, because they are not in touch with their rational sides, these patients may be elated, but also not necessarily for a valid reason. Furthermore, their attachment to the physician may result in over-expectations for the healthcare team.
Patients in Freeze Reaction
While patients in Freeze reaction may not express their emotions, this is not meant to imply that they are not having an emotional reaction to their diagnosis. Instead, they may be protecting themselves by remaining in a state of emotional shock, or may be effectively suppressing their emotions. While it is not the responsibility of the healthcare team to press these patients into getting in touch with their emotions, it is important to keep in mind that what appears to be an extremely rational, business-like reaction to the diagnosis does not mean that the patient is not capable of emotions. In fact, a patient in Freeze reaction may be so afraid of his/her emotions that they are completely suppressed, at least temporarily.
Patients in Fight Reaction
Patients in Fight reaction may indeed express a range of emotions, and express them strongly. However, what differentiates Fighters is that they do not become bound up in their emotions. They experience and express their feelings, and are then able to access think and act rationally. Fighters remain in touch with their emotions and, as treatment progresses, will continue to express their feelings. One of the benefits of Fight reaction is that the emotions remain accessible, and this helps these patients to cope with the ongoing ups and downs of dealing with their condition.
SIDEBAR: BODY LANGUAGE
As discussed in Chapter Two, emotions are often apparent in body language. Emotions and associated body language are described below:
Fear
- Eyes wide, unblinking
- Arms folded across chest
- Hands up to mouth
- Ankles locked
Sadness
- Crying
- Hands held up to face
- Shoulders hunched
- Rubbing eyes
Shame
- Looking away
- Hands held up to face
- Slumping forward
- Arms folded across chest
- Patting/playing with hair
Anger
- Standing with hands on hips
- Sitting/standing erect or legs crossed
- Hands clasped in fists
- Unblinking eye contact
Relief
- Sitting with legs apart
- Hands open
- Rubbing hands together
- Relaxed expression
Introducing: Educational Moments
When interacting with newly-diagnosed patients, healthcare professionals often have opportunities to identify to patients how they appear to be feeling or thinking, and potentially to encourage them to consider an alternative viewpoint or behavior. For example, a patient may appear to be sad, or angry, and the healthcare professional might take a moment to point out to the patient how they appear to be feeling. This can be helpful for patients who are having difficulty acknowledging, or discussing their emotions. Or, when talking about his/her condition, the patient might express an expectation that is based on faulty information, and the healthcare provider might inform the patient of the correct information, or encourage him/her to have a talk with the physician.
These opportunities, referred to as Educational Moments, often arise during interactions between healthcare professionals and newly-diagnosed patients. When appropriate, healthcare professionals can use these moments to provide information, help the patient express emotions, or otherwise deepen the connection with the patient.
In each of the chapters that follow, an Educational Moment will be highlighted.
SIDEBAR: EDUCATIONAL MOMENT
Newly-diagnosed patients are experiencing emotions that may be unfamiliar and uncomfortable to them, be overwhelmed by the information they are reading and hearing about their condition, and unprepared to make decisions that they are being faced with. Because family members are dealing with their own reactions to the diagnosis, they may not be able to listen to how the patient is feeling. During discussions with healthcare professionals, patients may, directly or indirectly, through what they say or through their body language, show how they are feeling. Healthcare professionals can, in turn, use reflective listening to help patients to identify their feelings and questions, and offer to provide a listening ear.
Emerging Themes: How a Medical Diagnosis Challenges Basic Beliefs About Life
As human beings, we have certain basic assumptions about life. Mental health professionals refer to these assumptions as beliefs. These beliefs can be described as our own personal set of ‘shoulds’ regarding, for example, what we owe to the world around us, what we should receive from others, and how others should behave. These beliefs are the result of our upbringing, our personal experiences, and the culture we live in. A medical diagnosis is in effect a challenge to some of our core expectations.
A medical diagnosis is a stressful event. As patients react to this stress fundamental beliefs about life, as described above, are put to the test. Much of this stress arises out of the impact that it has on our beliefs about what we think we can expect in life. Patients experience a range of emotions around their medical diagnosis. However, these emotions arise out of these beliefs about how their lives might be impacted by their condition. Individual patients may share a similar belief yet react in different ways. For example, a belief that the condition will cause relationships to change drastically might result in sadness for one patient, anger in another, and fear in yet another.
While not the responsibility of the healthcare team to work with patients regarding their beliefs, it can be helpful to keep in mind the role that these beliefs play for patients. Not only do emotions arise out of beliefs, but the ways in which patients interpret information about their condition and the guidelines they are provided.
These expectations are described below.
Figure 3-__
A table with the expectations from the sub-heads below:
I should be able to live my life with a sense of security and certainty.
We live with the expectation that our lives will pass day-to-day according to a certain established routine. Basically, we want to know what we can expect to happen to us every moment of the day, as well as the coming day. While minor fluctuations may occur, we assume that the overall flow of life will be maintained. A medical diagnosis is associated with uncertainty that can affect of life like finances, relationships, and plans for the future.
I should be in control of what happens to me in life.
Humans live with the illusion that they are in control of our lives, that somehow we can be the masters of our own destiny. One of the ways we maintain control is by living in denial that something out of our control could somehow happen. A medical diagnosis introduces a sense of ‘out of control-ness.’
I should be able to be effective in the roles that I play in life.
Whatever roles we play – parent, child, employee, spouse, etc. – have a set of responsibilities and benefits that go along with them. As human beings, those roles essentially define who we are and our identity is placed at great risk when we feel at risk of not being able to perform according to whatever role-related standards we have set for ourselves.
My life should not change unless I want it to (and I usually don’t).
Human beings simply are ‘hard-wired’ to maintain what scientists call equilibrium, which is a sense of balance that we maintain by avoiding change. It is normal for humans to fear the possibility of change, and a medical diagnosis can result in numerous changes, including diet, daily routines, work schedule, and other aspects of day-to-day life. Humans value to familiar to the extent that even routines that have become unpleasant or boring may be maintained out of a fear of the unknown.
If I live a good life, bad things won’t happen to me.
A medical diagnosis is a direct threat to one of the greatest examples of superstitious thinking – the belief that if we live our lives in with an attitude of fairness and generosity toward others, we will, in turn, be treated with fairness and generosity.
Keep in Mind: What are your basic assumptions about life? Did you identify with any of these assumptions? How do you beliefs affect the way that you react emotionally to stressful events?
Figure 3-__
A photo of a patient crying.
A Note About Healthy Grieving
Newly-diagnosed patients – primarily those in Fight reaction – often go through a grieving process, and this can be an essential step in coming to terms with their condition and moving forward with treatment and lifestyle adjustments. When newly-diagnosed patients grieve, they are beginning the process of accepting that a change is occurring in their life. Regardless of the diagnosis, accepting that life is going to be different in some way, and that these changes are out of their hands, is an important step forward. Healthy grief is based on accepting that the basic beliefs about life, described above, are not rational. For many newly-diagnosed patients, their diagnosis causes them to take a look at one or more of these beliefs and to reevaluate it. This may be the first time that they have looked at these beliefs and how they affect their actions and emotional reactions.
One patient described it this way:
“My attitude toward life was always, if I am act in a positive and caring manner toward other people, I am always going to be successful. I realize that I also thought that having this attitude would keep me healthy. Kind of like you get what you give. And then when I got diagnosed, I had to question all of my beliefs, especially this one. At first, I felt like life had betrayed me, and I was really angry. I had to sit with that realization for awhile, and I felt really sad. It had been a nice hope, but it was one I had to let go of. Then, as people around me reached out to see if they could help, I realized that being nice to people wasn’t going to keep me from getting sick, but it meant that when I needed people, they would be there for me.”
The healthy grieving process can occur at various levels on intensity. It is generally accompanied primarily by sadness, as well as other emotions like shame and anger. As with other forms of grief, patients who are coping with a medical diagnosis will have their own process that they go through as they grieve over their diagnosis. Newly-diagnosed patients may grieve openly, crying and talking about what they have lost, or the grieving process may be more subtle as patients come to terms with what they feel they have lost. Patients experiencing grieving conduct their own life review, and contemplate what they have accomplished in their lives, as well as what they regret. They will also contemplate what they had planned for the future, and question what they have ahead of them now that they have a medical diagnosis. It is not uncommon for newly-diagnosed patients to consider their relationships, especially with their families, in terms of what they may need from caregivers, and what they will, or may not be able, to provide for them in terms of support.
While healthcare professionals may not necessarily be involved in helping patients deal with their grief, being aware of the potential for healthy grieving, and what this may mean for their day-to-day interactions with patients can be useful. Patients experiencing grief around their diagnosis may exhibit:
- Constant crying, similar to that experienced by someone who has lost a loved one
- Withdrawing into their thoughts, lack of responsiveness
- Discussing their lives in the past, rather than the present or future, tense
- Concerns regarding how loved ones are going to function without their support
- Avoidance of information and guidelines that they interpret as implying an irreversible life change
It is important to consider that healthy grieving helps patients to come to grips with the ‘Why me?’ question and to come to a resolution that is personally meaningful for them. An attitude that is interpreted as too positive, or overly optimistic, on the part of their healthcare providers may be met with resistance when patients are in the process of dealing with this grief. They, in turn, may appear to be overly pessimistic. This is a time when being a listening ear, and gently encouraging patients to be confident that they, and their healthcare providers, are doing all that is possible to treat their condition, can help patients to move beyond their grief.
Rx: Helping Patients to Open Up Emotionally
In Chapter Two, case studies of patients in Flight, Freeze, and Fight reaction were described, and guidelines suggested for the optimal way to approach them. It might be helpful to review this material when considering interacting with patients from the perspective of emotional reactions.
Shana, the patient at the beginning of this chapter, was experiencing some strong emotions regarding her illness, mainly anger. Shana was most likely in Flight or Fight reaction, evidenced primarily by her ability to acknowledge and express her emotions. However, patients in Freeze reaction might briefly express an emotional reaction, though this would most likely be a relatively brief because patients in Freeze reaction will suppress their emotions as much as possible. Fortunately for Shana, her physician’s assistant, Lars, was trained in helping patients cope emotionally.
Shana: I’m sorry for breaking down like that. I let this get the best of me, I guess.”
Lars: You don’t have to apologize for having our feelings, Shana. This is a lot for you to take in at one time. It’s normal to feel sad.
Shana: I am sad.
Lars: Do you want to tell me what you’re sad about?
Shana: This came out of blue. No symptoms, nothing. A routine check-up and suddenly my life is crashing around me.
Lars: This was totally unexpected, I know. And it feels like a big loss.
Shana: Yes it does. Like a part of me got taken away.
Lars: I understand, Shana.
Shana dabs at her eyes, then pauses and looks away, as if considering what she might say next. She looks back at Lars and frowns.
Shana: And you know what else? I’m also really angry. Up until last Tuesday, I was fine. Just living my life. I had my whole future ahead of me. This isn’t fair.
Lars: It seems like you don’t have a future right now. Of course, you’re angry about that.
Shana: I am angry. I can’t believe it.
Lars: You can still have a future. It just means that you are going to have some changes in your life.
Shana: Change? That’s all you think it is?
Lars: Your diagnosis will mean that you will need to make some adjustments in your life, and take medication on regular basis, but it doesn’t mean you don’t have a future.
Shana shakes her head in disagreement.
Shana: Don’t sugar coat this like I’m a child. I know this is going to change my whole life. I’m going to know I’m not normal and everyone around me is going to know. How would you like to live your life like this? Would you like it?
Lars: I know this is hard for you. And it’s brought up a lot of feelings for you, like sadness and anger. I just want to reassure you that is normal to have a lot of different feelings when you have been diagnosed with a medical condition. And what’s important right now if for you to take some time and let yourself have your feelings.
Shana puts her hands up to her face and sighs.
Shana: I’m not blaming you, Lars. But I feel awful. I hope you don’t think I was yelling at you.
Lars: Not at all, Shana. I know you feel awful right now.
Shana: I really do.
Lars: Well, I want to reassure you that your healthcare team is doing everything possible to treat you and your condition. We will be with you every step of the way. And as we work together, I am here to listen to whatever you have to say and to answer any questions you might have. Okay?
Shana: Okay.
Lars: Now, I do need to talk to you about your treatment plan for the next couple of weeks. Can you have that conversation with me now?
Shana: Yes, I think I can. I just needed to ventilate for a couple of minutes.
Lars: I understand.
Figure 3-__
As in previous chapters, an illustration of stair steps, labeled according to the sub-heads below, including Listen, Show Listening, Reflect Feelings, Normalize Feelings.
Guidelines for Helping Patients Talk About Feelings
Here are some guidelines to keep in mind when patients are expressing emotions:
The healthcare provider is a listener, but not a therapist.
Notice that Lars was primarily listening to what Shana was saying, not jumping in to solve her problems. Newly-diagnosed patients can greatly benefit from a conversation with an objective person in which they can express how they are feeling. This conversation doesn’t require that the feelings be resolved in any way or that they be provided with advice or a solution that will somehow take the feelings away. In fact, there won’t be any easy answers. However, as was evident in the discussion between Shana and Lars, the listening ear provided by a healthcare professional can be helpful in providing the patient a way to ‘ventilate’ and, with the uncomfortable feelings expressed, be more receptive to hearing and discussing medical information.
Patients know when they are really being listened to.
Listening is an active process. When expressing emotions, patients may feel hesitant to open up, or may feel as if they might be annoying, or going too far, with the listener. Show that you are tuned into the patient through physical and verbal cues. Physical cues include making direct eye contact, making appropriate facial expressions to show an emotional response, and gestures like nodding. Verbal cues include asking questions, and responding briefly with encouragers like ‘ok’ and ‘uh huh.’ Most likely, the more active the healthcare professional is in listening, the more likely the patient will be open and honest.
Using the patient’s name when addressing them makes the conversation more personal, and hearing one’s name over and over can be soothing. Be sure to ask the patient if they prefer to be addressed by their first name or more formally. Often, an older person will prefer to be addressed more formally, especially by a younger healthcare professional.
Reflect feelings to offer support and clarification.
Reflective listening, as described in Chapter Two, is especially important when patients describe and/or demonstrate emotions. For example, Lars reflected back to Shana that she was feeling angry about her diagnosis. The use of reflective listening is a reminder that the healthcare professional is listening, and it helps patients to clarify how they are thinking and feeling.
While patients do not need healthcare professionals to offer advice or otherwise ‘therapize’ them, they can benefit from statements that not only show that the other person is listening but also serve to help them identify their feelings and perceptions.
Talking about feelings is an opportunity to ‘normalize emotions for the patient.
You might have noticed in the discussion that Lars told Shana that it is normal to have feelings like sadness and anger about a diagnosis. Patients don’t always accept their own emotions, especially the ‘negative’ emotions like anger, and may feel that they are supposed to be ‘thinking positive’ or be keeping their emotions to themselves. So when patients are told that it is normal to have a range of emotions, this helps them to accept their feelings and encourages them to talk more.
Listening is a way of honoring another person.
Listening to a patient talk about their feelings can sometimes cause their healthcare professionals to feel helpless. After all, it is only normal to want to ‘fix’ someone who is suffering. Deeply felt, and expressed emotions, can be especially difficult to listen to without feeling pressure to take some kind of action to help them to go away. However, the value of listening – without judgment, without interpretation, and without feeling the responsibility to take away the pain – cannot be underestimated. What patients need is for someone to hear and acknowledge their emotional reactions.
Often, their families are dealing with their own reactions to the diagnosis and cannot listen to how the patient is feeling out of wanting to avoid feeling even more helpless. Instead, they may be telling the patient to ‘think positive’ or reassuring them that ‘everything is going to get better’ when the patient is not at all convinced of this. This leaves the patient with a lot of feelings but no outlet for expressing these feelings. The healthcare provider, perceived as objective but also caring, can bridge this gap.
Most likely, Shana would have come away from this discussion with the satisfaction that she had been listened to and that her feelings were valid.
Treatment Note: Assessing Depression
It is normal to feel sad for a day or two, or even a few days, when something happens that makes us feel sad. When we think of depression, we normally think of someone who is very sad, maybe crying a lot, or who is feeling so ‘down’ that they can’t get through the day. Basically, people who are depressed have trouble maintaining their normal lives – getting up in the morning, getting ready for the day, doing work around the house, getting together with friends or family. Depression causes pain for the person who is depressed, and it also causes pain for the people around them.
Newly-diagnosed patients are at risk for depression, and it is critical that their healthcare professionals be on the alert for signs of depression so that they can intervene. Depression can impact compliance with treatment and lifestyle directives as depressed patients may be too despondent and unmotivated to follow through. Research has shown that depression can negatively affect treatment outcome – depressed patients don’t get well as quickly. Depressed patients are also at risk for self-destructive behavior – suicide – and it is the responsibility of healthcare professionals to be on the lookout for this potential. (REFERENCE?)
Depression occurs when patients feel so overwhelmed by their diagnosis and its implications for their future, and the future of those they care about, that they can’t harness the psychological resources to deal with it. Patients in Flight reaction are more obviously prone to depression. However, patients in Freeze mode may be emotionally disconnected as a result of their depression. And Fighters can sometimes fall into a depressed state if they experience a set-back, such as an additional diagnosis or a treatment failure, that challenges their coping skills.
Figure 3-3 illustrates beliefs about the diagnosis that may lead to depression.
Figure 3-__
The Depression Mindset
An illustration Perceptions = Emotional State -> Depression:
Perceptions
“I can’t deal with this.”
“I will never be the same again.”
“My life is over.”
“All of my plans for the future are going up in smoke.”
“No one is going to want to be around me. I will just be a burden.”
“I will be useless to the people who count on me.”
“I won’t be normal again.”
Result
Anger Turned Inward – Hopelessness, Helplessness, Shutting Down
How do I know it’s depression?
It is often difficult to determine when a patient who is experiencing sadness over their diagnosis, and going through a healthy grieving process, has become depressed. Healthcare professionals often feel that, without a mental health background, they are not qualified to diagnosis a patient with depression. However, it may be up to a non-mental health professional to ‘raise an alarm’ when concerned that a patient may be exhibiting symptoms of depression. Making this determination is not as daunting as it might seem. The symptoms of depression are relatively easy to recognize, and if a patient has one or more of these symptoms – especially if the symptoms seem to be continuing and/or worsening – the potential for depression will be clear. These symptoms are shown in Figure 4.
Figure 3-4
Symptoms of Depression
(An illustration highlighting the symptoms of depression.)
There are different kinds of depression, which a mental health professional, working with a physician, can help to diagnose. A diagnosis is based on symptoms that are common among people suffering from depression. Here are some of the more common ways that depression shows up in people:
- Sadness
- Feeling tired, fatigued
- Losing interest in favorite hobbies or other activities
- Withdrawing from friends and family
- Changes in eating habits, with weight loss or gain
- Having trouble sleeping at night, sleeping too much, or sleeping during the day
- Feeling like a burden to other people
- Using alcohol or other drugs (including prescription drugs) to try and feel better
- Thinking about death or suicide
- Anxiety or irritability
- Being forgetful of things like medication or personal hygiene
- Feeling like the world would be a better place/family would be less burdened without you
Keep in mind that the presence of any of these symptoms does not necessarily mean that a patient is depressed. Only a mental health professional can make this determination.
Because depression can have such a profound effect on patients, and essentially place their lives at risk, many organizations train healthcare professionals to recognize the symptoms of depression and have a formal procedure in place for identifying these patients and making mental health referrals. There are also a number of simple tests and questionnaires available that simplify the process of diagnosing potential depression for non-mental health professionals, based on symptoms listed in Figure 3-__, which are often available in hospitals and clinics.
As a healthcare professional, it is also important to keep in mind that certain medications, or combinations of medications, can result in feelings of depression. Consequently, symptoms of depression should also be evaluated in terms of the medication regimen.
Keep in Mind: Have you interacted with people who you thought were most likely depressed? What was this experience like for you? Some professionals feel helpless when they are with a depressed person and would prefer to avoid them. How will you feel about working with a depressed and potentially uncommunicative patient?
The Influence of Culture and Gender
As discussed previously, there are a range of factors that affect how individuals express, or don’t express, emotions, including past experience and family background. However, it is also important for healthcare professionals to be aware of the influence of culture and gender. These factors can influence how patients experience emotions, how they express them, and their willingness to accept mental health intervention. While the differences among different groups are too complicated to describe in detail, being aware of the fact that differences do exist, and attempting to be as sensitive as possible to these differences, will greatly enhance communications around emotional issues between patients and healthcare professionals.
Feelings are expressed differently among cultural groups. In some cultures, emotions are very much on the surface, such that it might be assumed that an individual is feeling emotions much more intensely than they are. Or, conversely, individuals in another culture might be highly reserved, and these individuals might be experiencing emotions much more deeply than they appear to be. In some cultures, it is acceptable to talk about emotions and admit to having uncomfortable feelings while, in other cultures, this would be a sign of weakness. Furthermore, an individual from one culture might be uncomfortable to speaking about what are perceived as personal issues with someone from another culture – they might automatically assume that they will be misunderstood or judged.
While it is difficult to control all of the issues that might arise in working with someone from another culture, sensitivity to these issues will go a long way toward enhancing communications. It might be helpful to do some research on the other culture, or try to talk to someone from that culture, to learn more about how emotions are expressed, and any cultural barriers that might exist that could interfere with discussions about emotions. Also, simply asking a patient if they are uncomfortable with talking about their feelings can help to prevent further discomfort and embarrassment – and offending the patient – before it occurs.
Gender can present further complications in discussing emotions. In Western culture, men traditionally are much less comfortable talking about their emotions than are women. Traditionally, expressing emotions has been considered a sign of weakness for men. This has also been true in many other cultures. Also, men traditionally are less likely to admit what they fear might be perceived as weakness to a woman, and women may feel more comfortable having these conversations with other women.
As with culture, it is important to be sensitive to gender issues when emotions are involved. Gender roles are rapidly changing in Western culture and, to some extent, in other cultures as well. As the world has become more psychologically sophisticated, men and women are more able to articulate feelings and feel more comfortable with this process.
When working with anyone who is from a different culture than oneself, it is important to go into the situation cautiously, but with an open mind:
- Avoid stereotyping the other person in any way by making assumptions about their comfort level with discussing emotional issues.
- Make it clear that you are willing to discuss the issues and concerns that they might have.
- Don’t attempt to ‘help’ them talk about emotions through direct and persistent questioning.
- Consider enlisting the assistance of another professional who represents, or is familiar with, the patient’s culture.
Keep in Mind: Have you been in situations where you were interacting with someone from a totally unfamiliar culture? What was the most challenging aspect of it?
Making referrals to mental health treatment
Generally, healthcare organizations either offer some form of mental health services or they have a formal referral process in place and a list of trusted referral sources. Some guidelines for making a mental health referral include:
- Before making a referral, discuss your concerns with the physician in charge of the patient’s case. The physician may first want to re-evaluate the medications that the patient is being prescribed, and the physician may want to manage this process.
- Inform the patient that you will talk to the treating physician about recommending that they meet with a mental health professional. Be prepared to explain why you are making this recommendation, including specific examples of their behavior, or specific symptoms, that have raised concerns.
- Explain to the patient the potential benefit of seeing a mental health professional and what the process of seeing a counselor might be like.
- Ask the patient if he/she wants to talk to a mental health professional. While you may offer encouragement, if the patient is not motivated to seek help, then most likely they will not be compliant.
- Review the process of making the connection with the mental health professional and any costs involved. If the patient has multiple options, explain what they are.
- Encourage the patient to make the connection with the mental health professional. If the patient is motivated but unfamiliar with mental health treatment, it may be advisable to make the appointment while you are together.
- After the treatment begins, checking in with the patient during office visits, and providing ongoing encouragement, can help to keep the patient compliant.
Summary
Patients experience a range of emotions when they are diagnosed with a medical condition. Fighters will express their feelings and use them to become empowered patients. Patients in Flight reaction are likely to become stuck in one specific emotion and have difficulty moving beyond it. Patients in Freeze reaction will suppress their emotions, and become stuck as a result. Healthcare professionals can benefit from understanding the emotional reactions of their patients because emotions affect ability to understand medical information, make treatment decisions, and cope with treatment and ongoing lifestyle adjustments.