Opening Case Study

          Amar thought that he knew just about everything about HIV, including what to do to prevent himself from being infected.  As a volunteer for a local HIV organization, he had passed out literature at community events and participated in fundraising events.  Amar had a few friends who were HIV positive and often talked with them about their treatment and how having the virus affected their day-to-day routines.  He certainly knew how to prevent being infected himself.

Looking back, Amar described his attitude toward HIV infection as ‘enlightened,’ and thought of this condition as an inconvenience, like other chronic illnesses.  While he was aware that HIV requires lifestyle changes, and that medications can have numerous side effects, he had friends with this condition who seemed to be leading full lives, with promising futures.  He had not viewed HIV as a condition that would invariably keep anyone from living a full life.

But for Amar, HIV evolved from a condition that he was aware of to one that had entered into his own personal experience.  During his annual physical, Amar was informed by his doctor that he had become HIV positive.

 

Keep in Mind: Based on our own personal experiences, some diagnoses are more familiar, and comfortable to talk about with patients, than others.  HIV is an example of a diagnosis that can raise issues with healthcare providers in terms of their own values, and also raise concerns.  Would you have taken time to be aware of your own fears around this diagnosis and your own prejudices and to be educated?  Life-threatening conditions like cancer, and lifestyle related conditions like Type II diabetes, might also raise these issues.

 

First, Amar felt shock, as most newly-diagnosed patients experience.  He couldn’t believe that he was being told that he was HIV positive.  It didn’t seem possible that this could be happening to him.  To someone else, yes, but not to him.

As he moved beyond the initial shock, Amar was overcome by fear.  He admitted to himself that he thought that his life might be slipping away.  He imagined himself with a weakened immune system, then with symptoms of AIDS that progresses to advanced AIDS requiring hospitalization.  He worried that he could become debilitated to the point where he would be unable to work, which would leave him financially dependent on others.  And he wondered how his friends and family might react to his diagnosis, whether they might think less of him and even reject him.  Amar constantly struggled  with these thoughts and images, which at times left him, in his own words, “in a state of terror.”

“Everything I knew about HIV got thrown back in my face when I received my own HIV diagnosis,” he said to Jason, the nurse practitioner at the clinic where he is being treated.  “And at this moment, it doesn’t matter how much I know about HIV.  I am still terrified about what might happen to me.”

 

Keep in Mind: What would your initial reaction be to Amar’s feelings of fear?  Could you be an objective listener or would you this bring up feelings of your own helplessness to ‘fix’ this situation?  A healthcare professional should remain objective, but this objectivity begins with an awareness of his/her own responsibilities and boundaries.

 

Jason had worked with many patients facing HIV and other chronic conditions, and he understood the fear they often experience when they are initially diagnosed.  He knew that newly-diagnosed patients, regardless of their knowledge level about their condition, have fears about the future – not only the possibility of death, but other fears as well, such as how they will appear to others, or whether they will be able to maintain their responsibilities as employees or parents.  As a healthcare professional, Jason also knew that it was important for patients to have an opportunity to acknowledge, and talk about, any fear about what their diagnosis might mean for the future. Patients who have addressed their fears about their condition will be more able to work with their healthcare team.

While Amar had tried to remind himself that he was armed with knowledge, and that HIV is not a death sentence, his fear did not seem to be subsiding.  “This is ridiculous,” he said to himself.  “I shouldn’t be so scared… But I am.”

 

Keep in Mind: Amar says that he ‘shouldn’t’ be scared.  What is your first response to that word?  Reassuring a patient that they shouldn’t experience fear, or that they have a reason to be fearful, might both be counterproductive in this situation.

 

Overview

“I’m so afraid.”

In just a few words, a newly-diagnosed patient is describing what may be a temporary emotional state, and one emotion among a range of emotions, as he or she adjusts to news of the diagnosis.  A patient who is essentially a Fighter, for example, may experience some fear along the way but will recognize fear as a valid feeling but will also consider the relevant medical information and will not be overcome by fear.  On the other hand, a patient in Flight reaction may attach to fear to the point that he or she, in turn, commits unwaveringly to an uninformed treatment decision or simply becomes engulfed in terror.  A patient in Freeze reaction may essentially be afraid of being afraid – and the loss of emotional control that might result from acknowledging fear – and, consequently, shut down emotionally to avoid experiencing fear.

Fear has numerous implications for healthcare professionals.  Fearful patients can’t listen to medical information because they either don’t want to become any more fearful, or they evaluate it in a way that only increases their fear.  Fearful patients may not want to make treatment decisions because they don’t trust themselves to make an informed decision, or are too fearful of the alternatives they are presented with.  The optimism and flexibility required to cope effectively with chronic conditions may not be possible for a patient who hasn’t yet worked through the fear.

Healthcare professionals are not responsible for treating fear from a mental health perspective.  However, recognizing the fear factor in newly-diagnosed patients, and knowing how to address it, will increase sensitivity to what patients are experiencing and help in countering reactions like resistance and indecisiveness.  The fear factor can keep patients emotionally stuck and unable to communicate with their caregivers at a time when this interaction is essential.

 

Figure 4-__

Photo/illustration of a patient with a speech balloon – blah, blah, blah

 

What if…?   The Question That Opens the Door to Fear   

In Chapter Three, the ‘Why me?” question was described as a question which the majority of newly-diagnosed patients inevitably ask, even as they realize that no real answer exists.  It is human nature to question what might have caused a medical condition, and these questions are not only medical, but also related to concerns about how past lifestyle choices may have impacted the development of the condition.  “Why me?” can also be less concrete and more psychological in nature, with concerns about how past attitudes, e.g. ‘negative thinking,’ and behaviors toward others might be factors.  This question is also spiritual in nature, and question the possibility of a greater meaning in the origin of the diagnosis.

 

Keep in Mind: If a patient began to discuss the ‘What if?’ question around their diagnosis with you, what would your initial concerns be?  Where do you see your involvement here in your specific role as a healthcare professional versus the roles of other professionals, especially the attending physician?  And how would you react emotionally to these questions?  Don’t forget that healthcare professionals can also experience helplessness when faced with difficult or unanswerable questions.

 

In many ways, as a newly-diagnosed patient adjusts to the diagnosis, the ‘Why me?’ question gives way to the question of ‘What if?’  The ‘What if?’ question is tied in with fears about the future, and can result in thoughts and images that will most likely increase any fears that patients have about their diagnosis.  These include:

 

Figure 4-1

Illustration of a person facing death.

Caption: “I keep wondering if this is going to mean the end my life.  Do I need to start preparing myself?”

 

Mortality

 

Conditions like cancer can automatically raise questions about death, regardless of any assurances that the patient may have been provided by the healthcare team, because these conditions have been known to cause death in others.  Patients may even have experienced the death of a friend or relative who had this condition.  Images around death can be very specific, e.g. a patient may imagine him or herself going through the process of dying, the body shutting down and saying good-bye to loved ones.  Death related images may also include imagining what familiar surroundings, like the home or workplace, might look like after death as other adjust to their absence.  In spite of cautions not to generalize, it is human nature to imagine the worst scenario which, in turn, contributes to an increase in feelings of fear and dread.

Patients may also experience fears about death with illnesses of a more chronic nature, such as diabetes, if aware of the possibility of further decline over time.  Fears about death can be difficult for patients to acknowledge and discuss, but traumatizing nonetheless.

 

Figure 4-__.

Illustration of a two people standing together, and a third person off to the side.

Caption: “Sometimes I feel like I am just in the way.  Is everyone going to get tired of me if I can’t keep up with them?”

 

Relationships

Humans are social beings, and a medical diagnosis invariably introduces fears that important relationships may change.  Patients who are partnered fear that they won’t be as attractive to their partner, that they won’t be able to handle their responsibilities in the home, that they somehow be embarrassing, or a burden, to their partner.  Parents worry that they won’t be able to provide care and guidance for their children.  Concerns about loss of friends, if activities formerly enjoyed with others can’t be resumed, or of needing to ask friends for help, are common.  Other concerns include changes in workplace relationships, e.g. needing to accept a reduced role or forego an opportunity for a promotion, can, in turn, affect self-esteem.

Inevitably, fears about relationships lead to the fear of abandonment.  No one wants to be alone.  Conditions that require an extensive period of recovery, and potentially extensive need for caregiving, are especially likely to raise concerns about loss of relationships.  And even a simple diagnosis, or one that may require treatment but will most likely result in a full recovery, can raise questions regarding how others will be impacted, and whether loved ones will reject them.

 

Figure 4-__ 

Illustration of a man/woman emptying his/her pockets.

Caption: “I am getting hit with one expense after another.  If I can’t get back to my job right away, what’s going to happen to my finances?”

 

Finance

Healthcare has financial implications, and concerns about finances are one of the issues that newly-diagnosed patients are most likely to consider.  Satisfying managed care deductibles, co-insurance, and co-payments can be a burden, as are costs related for healthcare-related transportation, and even lodging, if treatment in another geographical area is required.  Special diets and other lifestyle changes, like exercise, can be costly.  A medical condition often requires time off from work, and potentially large amounts of time, and this can be a frightening prospect, especially if the newly-diagnosed patients is the primary income-provider for the household.

Finances can present concerns that are both immediate, as the initial managed care costs are introduced, as well as ongoing, as additional health-related costs are introduced.  As such, fears around finance are often something that patients continually struggle with.  Newly-diagnosed patients have a tremendous time understanding their insurance benefits, and they often don’t have the physical or emotional energy to effectively advocate for themselves.  (REFERENCE)

 

Loss of Roles

People identify themselves by the roles that they play – professional, parent, spouse, son/daughter, boyfriend/girlfriend, community member, church/synagogue member, volunteer… each of these roles is associated not only with responsibilities and, to some extent, status.  Our roles provide a measure of comfort and reliability in life as we perform our basic roles on a daily basis.  In that way, our roles provide a sense of routine.  Furthermore, other people treat us in certain ways, depending on our roles, and that also provides a measure of comfort and reliability.  While we don’t always choose the roles that we play, and on some days may be happier in a role than others (like being a parent), they still provide ongoing stability.

Newly-diagnosed patients often fear that the roles they value in life may somehow be denied.  The implications of not being able to perform as a parent or spouse were discussed above under ‘Relationships.”  Fears about loss of other roles may also have major implications.  For example, an older person may place a high value on being a volunteer in the community, and may gain a measure of self-esteem from volunteering.  If medical treatment, or lifestyle adjustments, requires that this activity be temporarily or permanently discontinued, then the patient would view this role as a major loss and correspondingly fear this loss.  While a job loss obviously affects finances, it also affects self-esteem.  For example, a patient who values him or herself primarily on their job title or profession, and views this as the primary role, is going to experience a high level of fear when considering the possibility of losing this role.

 

Changes in Routine

Daily life is made up of the elements of our basic routine – waking up and making coffee, going out on the front steps to pick up the newspaper, making breakfast, going to work, coming home in the evening and relaxing or making dinner, getting together with friends on the weekend.  These are aspects of life that we often take for granted.  Yet, the prospect of having to make changes in our daily routine, even the smallest changes, can be fear-inducing.  The prospect of having to take a medication in the morning and avoiding breakfast until later in the morning, for example, or being unable to make the trip out to the porch for the newspaper, can indeed feel drastic to a newly-diagnosed patient.

Certainly, routine provides a structure for our lives and a sense of security; the familiarity of day-to-day routines is emotionally soothing.  However, routines also provide a sense of normalcy, in terms of taking care of ourselves and handling our responsibilities like everyone around us.

 

The Overarching Fears: Uncertainty and Change

Human beings don’t do well with uncertainty.  We want to know what’s going to happen tomorrow, next week, next month, and beyond, or at least feel like we have a sense of what is going to happen.  Humans are also hardwired to avoid change but, instead, to attach to what is known and familiar, even when it is not so comfortable.  Uncertainty can lead to change, and so the two are interrelated.  A medical diagnosis, with its potential for affecting relationships, routines, finances, etc., introduces the possibility that life may never be the same.  This may for newly-diagnosed patients be the first time in their lives that they have had to consider the possibility that their lives are not under their own control.  This can be terrifying, and raise not only practical but spiritual questions (discussed in Chapter 10).

The possibility of change leads to a further question: Will I ever be normal again?

The possibility of not being normal, however the patient defines this term, is a key source of fear.  Being normal not only means performing basic tasks and maintaining relationships, as discussed previously in this section, but also appearing normal to others.  Somehow we never outgrow the need to feel like ‘one of the crowd’ and not be singled out in any way, or at least in ways that we don’t choose to be singled out.

This possibility strikes fear in the hearts of newly-diagnosed patients.

 

Approaching Patients Who Are Overwhelmed by Fear

As discussed previously, a newly-diagnosed patient who is caught up in fear will present challenges to the healthcare professionals with whom they come into contact.  While healthcare professionals are not delivering mental health services, interactions with fearful patients can be facilitated through the following overarching guidelines:

• Be sensitive to the patient’s fear.  As irrational as it may seem to the healthcare professional, the fear as real to the patient.
• Remember that fear may be temporary.  A patient may experience fear as part of a range of emotions, such as sadness and anger.  That may necessitate ‘backing off’ of a discussion that the patient is not momentarily able to have.
• Be gentle and tentative when approaching the patient.  Fearful patients may overreact to any suggestion that their healthcare professionals are treating them in a confrontational manner.
• Suggest information and experiences that are contrary to the patient’s perceptions, but present this information in a tentative, non-confrontational manner.

 

 

Keep in Mind: In what areas would you see the fear factor to be most of greatest concern in your patient interactions?  Educating around the condition?  Making treatment decisions?  Ongoing compliance?

 

Here are some examples of how fear may enter into their interactions with sample interactions.

 

Understanding the Condition

A patient overwhelmed by fear, even temporarily, will have difficulty listening to and processing information regarding their condition.  Essentially, the patient’s fear may result in selective listening, such that they hear only the negative information and then, in turn, process it in a manner that further contributes to their fear.  The conversation between Marla, a nurse, and Saundra, a patient, demonstrates the difficulty that a patient caught up in the fear factor may present when the condition is being discussed.

 

Marla: “I want to review what the doctor told you about your condition.  First, I’d like to talk to you about what it means to have sickle cell anemia.”

Saundra: “I know what it means.  It means I’m going to die.”

 

At this point, the patient is demonstrating that she is experiencing extreme fear about her condition.  In her mind, the diagnosis means death.  While she may be open to information, she may also be likely to interpret it from this viewpoint.

 

What not to do:

Marla: “That’s not true at all.  Who told you that?”

Saundra: “I don’t need anybody to tell me.  I have heard all the stories.”

Marla: “Well, you need to update your information.”

 

The optimal approach:

Marla: “Saundra, it sounds like you’re really scared about this.”

Saundra: “I’m really scared.  I feel like my life is going to be over and I can’t think about anything else right now.”

Marla: “Would you like me to talk to you about some of my experiences in working with patients with sickle cell anemia?  I can tell you that I know a lot of patients with sickle cell who are leading happy and productive lives.”

Saundra.  “I’m not sure if I can listen to anything else about it.”

Marla: “It’s up to you.  But I’m going to leave with you with some literature and my number here at the office if you have questions.”

 

In this example, Marla was given the choice of directly confronting Saundra with rational knowledge or instead talking with Saundra from an emotional perspective.  Given that Saundra was viewing her situation from an emotional perspective, she was more receptive when Marla also communicated emotionally.

 

Figure 4-__

A patient talking with a healthcare professional.

 

Making Treatment Decisions

Patients must often make treatment decisions soon, if not immediately, after being informed of their diagnosis.  Some patients are able to make these decisions while others don’t feel ready and must rely on the recommendations of their healthcare providers and/or their families.  When the patient does need to be actively involved in making the treatment decision, the prospect of the condition itself, as well as the treatment, may result in such fear that the patient is unable to consider the treatment options.

Jack, in the example below, has been presented with options for a back problem, and his medical assistant, Tanya, has been tasked with offering any additional assistance as he makes his decision.

 

Tanya: “Jack, the doctor talked with you about surgery as taking a wait-and-see approach with physical therapy.  Any thoughts about what you are considering?”

Jack: “What I can tell you is that I have a family to support and if I’m not able to do my job, a lot of people are going to be suffering.  I can miss work while I recover from surgery or I can miss work while I go to physical therapy.  I don’t see any upside to either option.”

 

From Jack’s comment, Tanya can immediately see that he is afraid about how his condition is going to affect his finances.  His fear of economic distress is so strong that both options are being considered only in relation to his fears around loss of income.

 

What not to do:

Tanya: “Jack, your income is not the issue here. You’ve got to decide what you want to do about your back and get started on getting better.”

Jack: “Don’t you understand that this may break my family?  How are we going to pay the bills if I’m laid up?”

 

The optimal approach:

Tanya: “You’re really concerned about your finances right now.”

Jack: “Yes I am.  And so I’m afraid to make this decision.  Either way, I lose.”

Tanya: “Is there any information I could give you that would help you to look at your treatment from the financial perspective?”

Jack: “Well, I’m still not sure how much time I might be out of work after the surgery.  And I didn’t get much of an idea what the time commitment would be with the physical therapy.”

Tanya: “Okay.  Let’s talk to the doctor and ask her to make some projections for you.”

 

Tanya clearly saw that Jack needed to move beyond his fears about his financial concerns and focus on getting better.  However, had she allowed herself to approach Jack by focusing on the decision, and not his fears, she risked being met with more resistance.  What Jack did not want to do was launch into a decision until he had dealt with his fears about financial ruin.  Instead, Tanya acknowledged Jack’s fear and offered to facilitate his gaining more knowledge that would help him to make a more educated decision.  Basically, Tanya acknowledged and worked with Jack’s fears in a way that would facilitate the decision-making process.

 

Making Lifestyle Changes

Patients experiencing fear can be resistant to discussions about making lifestyle changes because looking at aspects of their lives that may need to be modified – such as diet, daily routines, and activities – may also be connected to their greatest fears about how their condition may impact their lives.  Furthermore, patients often fear that lifestyle changes will have a negative effect on others as well.

Donna, recently diagnosed with high cholesterol and high blood pressure, has a discussion about lifestyle changes with her nurse, Alberto:

 

Alberto: “Donna, I know you met with the dietician and the fitness coach about having a healthier lifestyle.  How did that go?”

Donna: “How did it go?  I can have food with no salt, no fat, and no taste.  My husband and I used to enjoy cooking and eating together but their telling me that has to end.  And I’m supposed to become a fitness nut instead of sitting with my husband and watching TV.  How long do you think it’s going to be before he decides to find someone more fun to spend time with?”

 

Alberto can see that Donna is fearful about how her lifestyle changes, if she decides to make them, will affect her relationship with her husband.  And because she is fearing that the loss of these shared experiences might make him less interested in her, she is indirectly expressing the fear that he might abandon her.  She is unable to have a productive discussion around lifestyle change because her fear is causing her to interpret the lifestyle guidelines in terms of how these changes will result in the loss of her relationship.  Alberto knows that emphasizing the importance of these lifestyle changes, without acknowledging her fears, may result in increasing Donna’s resistance.

 

What not to do:

Alberto: “We can’t worry about what your husband is going to do right now, Donna.  What’s important is that you focus on your health and get started right away with a healthy diet.  I would recommend that you plan on starting tonight by cooking a healthy meal for the two of you!”

Donna: “So I am supposed to drop this on him, that either he give up the food that he loves or that we eat separately?  That’s like telling him that he isn’t good enough for me anymore.  What do you think he is going to do with that message?”

 

The optimal approach:

Alberto: “I know the diet feels really drastic to you.  And I can see you’re worried about how this is going to affect your husband, too.”

Donna: “You bet I am.  This isn’t going to be fair to either one of us.  How would you like it if the person who cooks for you suddenly changed the rules?”

Alberto: “I know this is frustrating.  Can I ask if you have talked to your husband about your diagnosis?”

Donna: “Just a little bit.  I didn’t want to upset him.”

Alberto: “I am wondering if it might help to have a conversation with him about what’s going on with you and what your healthcare team has recommended.  Do you think that might help?”

Donna: “Maybe.  I’ll think about it.”

Alberto: “And let’s talk about how we can all work together on this end to help you get started on keeping you as healthy as possible.  Can we do that?”

 

 

Rather than confronting Donna with the rational argument for changing her diet, Alberto instead talks to her on a feeling level, beginning with reflecting back that she is worried.  Donna responds to these feeling words, and is more open to listening to what else Alberto has to say.  Notice that he offers the beginning of a solution by suggesting that Donna educate her husband.  And, given her resistance to change, Alberto offers the assistance of the healthcare team in working with Donna on implementing change.  This is reassuring to a patient who is caught up in fear.

 

Figure 4-__

A patient sitting slumped over with head in hands.

 

Caution: When Fear Leads to Helplessness

The fear experienced by newly-diagnosed patients may be so strong that they essentially become immobilized by it.  This level of fear occurs when patients’ thoughts and images around their diagnosis are such that they can’t face their fear and feel that they have any control over the outcome.  This level of fear is often based on lack of information yet patients may be so terrified by the prospect of their diagnosis that they are unable to listen to information or otherwise discuss their situation.  And patients overwhelmed by helplessness may be unable and/or unwilling to deal with their diagnosis beyond passively accepting treatment.

Patients for whom fear has led to a feeling of helplessness exhibit symptoms similar to depression.  Those in Flight reaction are more likely to appear emotionally distraught, while those in Freeze reaction may exhibit no emotions at all.

If it is patient is suspected of having fallen into a state of helplessness, it is recommended that they be referred to a mental health professional, as described in Chapter Three.

 

The Upside of the Fear Factor: When Fear is a Motivator

As with stress in general, fear can sometimes be a motivator.  Stage fright, for example, can motivate a presenter to carefully prepare and practice a presentation, and use the fear as a source of energy when making a presentation.  So too can newly-diagnosed patients be empowered by fear when it is balanced by a rational understanding of their condition and what they need to do to remain healthy.

Healthcare professionals understand the role of fear as a motivator for lifestyle change and compliance.  For example, smokers are heavily influenced in their decision to quit by the prospect of lung cancer, and diabetics are motivated to remain compliant by the potential consequences of non-compliance like kidney failure and amputation.  While this is not to imply that healthcare professionals should attempt to ‘scare’ their patients into being compliant, patients can benefit from an understanding of consequences.  It’s important to keep in mind that fear may be the result of lack of information about consequences – a patient who does not have the correct information may ‘fill in the gaps’ with his/her own projections, that essentially lead to more fear.  Therefore, helping patients to understand realistic information, including consequences of non-compliance, can serve to dispel the irrational fear and use rational fear as a motivator.

When presenting information intended to promote an understanding of realistic consequences, it is recommended to keep this conversation positive, with a focus on benefits to the patient rather than risks, to avoid touching off the patient’s fear response.  These phrases include:

• Do you want to talk about why it’s important to start treatment as soon as possible?
• I’d like to go over some of the reasons why you can benefit from a healthier diet.
• Let’s talk about why making these changes can help you to avoid certain conditions.
• You have a lot of choices here, and the choices have consequences, some of them good, some not so good.  I’ll go through them with you.

 

Patients in Fight reaction are most likely to be naturally motivated by fear.  They will acknowledge this emotion and, rather than being defeated by it, will use it to empower themselves to perform tasks like gathering-information, asking questions of healthcare professionals, obtaining a second opinion, and being compliant with treatment and lifestyle recommendations.  These patients essentially have faced their fear, understand what they most fear, and have concluded what they can and should reasonably be afraid of in regard to their illness.  Fighters are most motivated by fear of making an uninformed decision and fear of not doing everything possible to maintain their optimal health.

 

Keep in Mind: When can fear be a useful motivator?  Have you witnessed another healthcare professional use fear as part of a ‘pep talk’ with a newly-diagnosed patient?  Have you witnessed fear being used to ‘beat a patient over the head’ to force them into being compliant?  How do you personally view the role of fear as a motivator?  What is your comfort level in using fear in motivating patients?  What do you see as the risks?

 

Figure 4-__

Photo/illustration of healthcare professional shaking his/her finger at the patient.

 

Techniques for Coping with the Emotional Effects of Fear

It can be helpful if healthcare professionals engage newly-diagnosed patients through techniques that are effective in helping them to cope with their fears.  Some of these techniques are more rational in nature while others are focused on helping patients to cope emotionally.  Also, some require more active involvement by the healthcare professional while others can be achieved through making a recommendation or referral.  These techniques are discussed below.

 

Techniques that Engage With the Rational Side

Presenting Counter Evidence

Patients who are overwhelmed by fear do not respond well to confrontation.  However, it is possible to gently suggest evidence that is contrary to the information that the patient is holding onto.  Counter evidence, when presented in a manner that the patient is receptive to, can be useful in reducing the fear factor.  Counter evidence can be based on the knowledge of the healthcare professional, or on past experience in working with patients with a similar diagnosis.

When presenting counter evidence, it is important to keep in mind that the patient is in a highly emotional state.  Therefore, they will not be receptive to a straightforward presentation of facts.  However, as discussed previously, it is recommended to introduce the discussion with feeling words, to gain the patients trust and lower their resistance.  Furthermore, information should be introduced tentatively.  If the patient remains resistant, then this approach may not be useful, at least at that time.

The following is an example of a conversation between a nurse, Charlene, and a patient, Ashweeta, using a counter argument:

 

Charlene: How are you doing today, Ashweeta?

Ashweeta: I am terrified of what’s ahead of me.  I don’t see any future for myself right now.

Charlene: Why no future?

Ashweeta: Because I know that with this diagnosis, my life is going to go on a downward spiral.  The medications are only going to help a little but not enough.  It won’t be long before I won’t be able to do much of anything.

Charlene: I have worked with a lot of patients who were diagnosed with MS.  We have been treating many of the same patients for years in this practice, so I have witnessed their success stories firsthand.  Would you be interested in hearing about some of their experiences?

Ashweeta: I don’t know how that’s going to help me.  I’m not them.

Charlene: You’re right.  But I have learned that people with your diagnosis have a lot of different experiences.  I was thinking that hearing about some other experiences might suggest some alternative outcomes.  What do you think?

Ashweeta: I guess that might be interesting, sure.

 

Note that Charlene begins by acknowledging Ashweeta’s feelings without judgment, and without directly arguing the point that she could be looking at her future differently.  This gentle approach encourages Ashweeta to be open to talking more, and also to listening.  Charlene then suggests that she can impart further information but leaves the decision to Ashweeta.

 

Bibliotherapy

Bibliotherapy is a term used to refer to the therapeutic value of information.  Being exposed to valid information can be especially helpful for patients experiencing fear because while it may confirm some of their suspicions regarding the potential affects of their condition and its treatment, information may provide a greater sense of the likelihood of these issues occurring in the future, and it may serve to dispel other fears.   Some patients are natural information gatherers; this is more common among those who are in Fight reaction.  However, even Fighters may need some encouragement to expose themselves to information when they are feeling the most overwhelmed by fear.  Those in Flight and Freeze are most likely even more resistant to information.

Generally, hospitals, clinics, and physician’s offices maintain a stock of information pamphlets available through non-profit organizations as well as pharmaceutical companies.  The Web is also filled with information, though not all of this information is reliable or helpful.  When carefully selected by a healthcare professional, and its use gently encouraged, providing information to patients experiencing fear can be helpful.

Jeanine, a patient recently diagnosed, is fearful about a treatment she is soon going to undergo.  She mentions her fear to her nurse practitioner, Alicia.

 

Alicia: Any questions you want to ask me about your treatment regimen?

Jeanine: Yeah.  How am I supposed to survive it?  I know I’m probably going to feel awful.  Nausea, headaches… I’m going to be tired.  Sounds like fun, doesn’t it?

Alicia: I know this is scary, Jeanine.  Where did you hear about all of these side effects?

Jeanine: Everybody knows what you go through with chemotherapy.

Alicia: You know, Jeanine, we have some really good pamphlets here that you might want to take a look at.  They are written in layperson’s terms, and can give you a clear picture of what you might expect.  Chemotherapy treatment has really improved over the past few years and you may find that a lot of the side effects have been greatly reduced.  Would you like to take a look at a little bit of this information?

Jeanine: I don’t want to be even more scared.

Alicia: If you want, I can go over one of them with you and point a few things that you might want to consider.  How would that be?

Jeanine: Okay.  I’ll give it a try.  But not scare tactics like telling me all the bad things that might happen!

Alicia: Absolutely not.  Just some information.

 

As in the other scenarios, Alicia, the healthcare professional begins by acknowledging the patients’ emotional state.  Rather than confronting Jeanine with the need to update her knowledge and not create stories, she suggests that that she might want to read some valid information and update her knowledge.  To help Jeanine take this first step, she offers to take a moment and review some of the information with her.  This way, she can be assured that Jeanine reads the information thoroughly, and not selectively, so that her fears are not made worse.  And Alicia can answer questions that might come up.

 

Support Groups

Newly-diagnosed patients can also benefit greatly from support groups in which they can learn from the experiences of other patients, which can potentially serve to neutralize some of their less rational fears about their condition and its treatment.  It is important to keep in mind that newly-diagnosed patients may initially not be ready for a support group.  They may find the stories that patients relate in these groups, and their experiences, serve to increase, rather than decrease, their fears.  Consequently, the healthcare professional may consider not recommending support groups when a patient is initially diagnosed and, instead, recommend that a patient talk individually with a patient who can be trusted to project an upbeat, positive attitude.  And, if possible, the healthcare professional might also be aware of the support groups that are best for newly-diagnosed patients.

 

FIGURE 4-__

An illustration of positive and negative self-talk, maybe a cartoon of a patient with a devil on one shoulder and an angel on another.

 

Introducing: Negative Self-Talk and Antidotes of Positive Self-Talk

Patients who are feeling afraid often focus on the worst possible outcome and then repeatedly remind themselves of what might be in their future.  A fearful thought is often accompanied by an ultimate outcome: ‘This will happen to you’ or ‘you will feel that way’ or ‘you will end up like this.’  This is referred to by mental health professionals as negative self-talk, in which patients ‘talk to themselves’ about all of the possible negative outcomes, often without enough information to know if the ‘possibilities’ are realistic or not.  When patients bombard themselves with negative messages, they are effectively reinforcing their own fear.

Negative thoughts are like poison in that they create more fear.  And poison can be cured with an antidote.

An ‘antidote,’ as the word implies, heals poison, in this case, a poisonous thought that leads to negative self-talk.  The idea behind antidotes is essentially to take the counter argument, described above, and turn it into positive self-talk that the patient can then use to counteract the negative self-talk.  By listening to the patient discuss their fears, the outcomes that the patient is imagining will be clear to the healthcare professional who, in turn, can begin to create antidotes to negative thinking.  These antidotes can then be introduced gently into the conversations with the patient.

Tyrone, who is being treated for a lung condition, has a discussion with his nurse, Albert.

 

Albert: You seem upset, Tyrone.  What’s going on?

Tyrone: I am upset.  I can’t help but see where I might be in another year or less.  I might not be able to take care of myself.  I will be a burden to my wife.  I won’t be able to work.  Who knows, I might be bedridden by then.  I have to be realistic here.

Albert: You’re really thinking a lot about what could happen.

Tyrone: Yes, I am.  I need to prepare myself for the worst, and the worst is about all I see right now.

Albert: Maybe I could make a suggestion, Tyrone.  Would that be okay?

Tyrone: Okay.

Albert: It seems like you are being hard on yourself, Tyrone, by reminding yourself of all of the bad things that can happen.  I am thinking that you might also want to say some positive words to yourself.

Tyrone: Like what?

Albert: We really don’t have all of the information yet in terms of what your treatment is going to be, and we don’t know how you will do on whatever treatment you and your doctor decide on.  So maybe you could also remind yourself that you don’t know what the future holds but that you and your doctors are doing everything possible to treat your condition.  Do you believe that?

Tyrone: Yeah, I believe it.  But it’s hard not to look on that scary side when you have this diagnosis staring at you.

Albert: I know, Tyrone.  Let’s work together on standing up to the fear with some positive thinking.  Maybe every time you have one of those scary thoughts you could come back at it with a reminder that you are doing all the right stuff.  Want to try it?

Tyrone: Okay, I’ll give it a try.

 

Albert heard how Tyrone was inundating himself with repeated messages about fearful outcomes and suggested ‘antidotes’ of more hopeful messages.  Notice that he did this through suggestion of a positive thought, and also did a reality check with Tyrone, in terms of whether he believed this message.  Once Albert had Tyrone’s agreement, he then suggested how Tyrone could use this message to counteract his fear.

 

Techniques that Engage Directly With the Emotions

Patients experiencing fear may not always respond to talking.  This is because fear is an emotion, and patients overwhelmed by fear may respond better to techniques that engage emotions directly, rather than ‘talking to them.’  Consequently, the use of techniques that are less rational, and more experiential, may help to release the fear by helping the patient to achieve a sense of relaxation and inner peace.  Research (REFERENCES) has shown that complementary therapies like mediation and visualization can be highly effective in helping fearful patients to move beyond their fear.  While the healthcare professional may not be directly involved in delivering these services, suggesting these alternatives, and directing interested patients toward valid and convenient resources.

 

Meditation

Meditation has been highly useful in helping individuals facing stressful situations by promoting peace of mind, relaxation, and enhancing energy.  Science has shown that the fear factor is accompanied by a rush of adrenaline and other hormones which, in turn, increase blood flow to the muscles and increase the feelings of stress.  Newly-diagnosed patients can subsequently benefit from mediation as it helps to release feelings of fear and anxiety.  There are a range of meditation techniques available; some are based in Eastern religions like Buddhism while others have been adapted for Westerners.  Patients experiencing fear might be encouraged to consider mediation by presenting benefits that include:

• Reducing fear and anxiety
• Promoting a sense of self-confidence
• Aiding in promoting restfulness and reducing anxiety
• Creating a state of relaxation and a feeling of well-being

John Kabot-Zinn, PhD, is a pioneer in using meditation and related wellness techniques in working with patients facing catastrophic illness.  His research has shown that meditation not only reduces anxiety, but can also be of great benefit during treatment as it reduces not only the fear but creates a sense of well-being that helps patients to be more receptive to treatment (REFERENCE).

While some patients are familiar with mind/body practices like meditation, others less familiar are nevertheless often receptive to giving mediation a try, providing that it is taught in a way that is consistent with their religious beliefs and overall comfort level with trying something unfamiliar.

 

Activity

Patients who are active in some way may also experience a reduction in anxiety.  Activity, especially some form of exercise, can release hormones that contribute to a sense of wellbeing and peace of mind.  The increased circulation that results from exercise can result in anxiety reduction.  Exercise has reduces depression and helps to create a more positive mood.  (REFERENCES)

The act of taking steps to get involved in activities can result in a sense of empowerment and mastery that can also contribute to self-confidence.  Being with other people can also increase well-being, and provide an opportunity to receive additional emotional support.

Obviously, patients are not always physically able to engage in vigorous aerobic exercise.  However, in consultation with the physician, patients can be encouraged to try some form of activity, whether mild exercise, yoga, new or formerly enjoyed hobbies, or socialization.

 

Facing the Fear With the ‘What If?’ Question

Asking the ‘What If?’ question can provide patients with an opportunity both to confront their greatest fears as well as to obtain useful information that might, in turn, help to dispel their fears.  While the discussion thus far in this chapter has been focused on reducing the fear factor, this is not to imply that patients may have some fears that are identifiable, and concrete and, at some point, will need to be discussed with a healthcare professional.  Among others, these fears include the real potential with some conditions to have substantial side effects from medication, loss of work (and potentially medical benefits), and the need for increased assistance from caregivers.  While it is important for patients to remain focused on maintaining their health, if not getting better, and reduced fear and anxiety certainly contribute to these goals, newly-diagnosed patients can also benefit from frank discussions about the future.

Essentially, there is fine line between encouraging a patient to remain optimistic –not to give in to irrational fear – and encouraging a patient to go into denial of the reality of their condition.  For a patient in Flight reaction, the potential for denial is especially strong because their emotions may be so out of control.

The key to keep in mind here is that that some fears are realistic and some fears are not realistic.  Patients are not able to make this determination on their own; and they need to be able to talk to their healthcare professionals about their fears and get realistic answers and become informed about their condition and treatment.   Patients learn more about the realistic expectations they can have for the future by having the ‘What if?’ discussion with their healthcare professionals.  A benefit of working through their fear – through rational and emotional-based techniques, and even simply talking about it with a supporting person – is that when it is ‘exposed to the air,’ the bottled up fear begins to dissipate.

At this point, the ‘What if?’ discussion can become much more productive.  And it is certainly a discussion that may need to be conducted so that the patient can be assisted in making treatment and lifestyle management decisions.  Fighters will insist on having this discussion, while those in Flight and Freeze reaction will need help coming to terms with their emotions first.

In the section that follows, an example of the ‘What if?” discussion with a patient experiencing fear is described.

 

SIDEBAR: BODY LANGUAGE

Newly-diagnosed patients experiencing fear might have body language such as:

• Hunched over, arms folded across chest tightly
• Frowning, anguished expression
• Eyes wide open
• Rapid breathing
• Hands up to mouth
• Nervous movements
• Expressionless, looking away

 

SIDEBAR: SELF-TALK

The fear factor can result in self-talk that included:

I am not going to come out of this alive. 

My God, what’s going to happen to me?  I know it’s going to be awful. 

Why have any hope when I’m just going to be disappointed anyway.

Maybe the best thing to do is to give up and let my life fall apart. 

I am so afraid.  I can’t even think about this. 

 

Antidotes to fear-related self-talk includes:

I have a great team of healthcare professionals around me and they are doing everything possible. 

I can’t predict the future but I have a lot to live for right now. 

I am going to focus on being calm and focused and not give in to fear.

My family will be with me as I face the future, and I will be there for them. 

The evidence shows that many people are able to go on with their lives with my condition, even though they have to make changes.  I am ready to face the future. 

 

SIDEBAR: EDUCATIONAL MOMENT 

Newly-diagnosed patients who are experiencing the fear factor can easily fall into negative thinking.  Evidence of fear and hopelessness will often into conversation with healthcare professionals, e.g. expressing fear of medical treatments or doubts about whether treatment is worthwhile.  Healthcare professionals can help patients during these moments by acknowledging that it is normal to feel fearful when first diagnosed with a medical condition and encouraging patients both to discuss their fears as well as be as educated as possible.

 

Rx: Helping a Patient Cope with the Fear Factor

Amar, the patient from the beginning of this chapter who had recently received an HIV diagnosis, has a discussion with Jason, his nurse practitioner.  Jason provides Amar with an opportunity to discuss his fears in more depth, and attempts to help Amar to resolve some of his feelings.

 

Jason: It’s normal to have a lot of fear when you receive a medical diagnosis like HIV.  You weren’t feeling sick, so this diagnosis is totally unexpected.

Amar: Totally unexpected.  I feel like I’m standing on the edge of a cliff and I’m not sure when I might fall over the edge.

Jason: That’s a scary feeling.

Amar: Yes it is.

Jason: I know you have talked about your feelings with some of the other members of the team.  Any ideas that were helpful to you?

Amar: Terry suggested I might try a meditation group to help me to relax and sleep better.  They have one here at the center that meets every week, and I am going to give that a try.  I have been thinking about trying meditation in the past and I guess now I finally have a good reason to.

Jason: Great.  Anything else?

Amar: I was really down in the dumps about a week ago when I stopped in for a blood draw and Tony gave me some advice about using more positive thinking, starting with telling myself that I have excellent healthcare and am doing all the right things to keep the upper hand with my health.  So I am doing that, too.  And, of course, I have picked up a few pamphlets.

Jason: Fantastic.  Has that been helping?
Amar: I would say it has.  But let’s be honest.  I still have a lot to be scared about.

Jason: I understand.  Why don’t you tell me what’s scaring you the most?

Amar: How about dying, to start with?  I mean, I do have a fatal illness.

Jason: Do you mind if I offer you a couple of thoughts here?

Amar: Okay.

Jason: You’re familiar with the recent advances in HIV treatment, right?

Amar: Yes, I am.

Jason: So you know that medical science has made incredible advances.  People are living longer, much longer, as long as they work closely with their physicians and are compliant with their medication schedules.

Amar: But what if I am put on the meds and they don’t work?  If that happens, I’m outta here.

Jason: Did you know that if one treatment regimen doesn’t work, there are other options available?

Amar: I guess I hadn’t thought much about different treatment options being available.  I can accept that possibility.  Still, I don’t want to hear that people don’t every die of AIDS.  I read about a case in the paper just last week.

Jason: I can’t tell you people don’t die of this condition.  A lot of factors are involved, including being the best regimen, maintaining a healthy lifestyle, and being compliant.  But you’re right, there aren’t any guarantees.

Amar: So you’re being honest with me here.

Jason: I am, Amar.  And you’re working with a really experienced team of professionals here.

Amar: Okay.  That’s reassuring anyway.

Jason: I have a chart in one of the treatment rooms that shows all of the current medications and how they can be combined in various ways so that patients have the best regimen available to them at the time.  Can we take a quick look at that together?

Amar: If you think it might help.  I’d be willing to try anything that would help me not be so scared about this.

Jason: I can’t promise that you will feel any less scared.  But I can certainly give you some education.  And knowledge is power, right?

Amar: Yes it is.

 

Guidelines for Addressing Fear and the ‘What if?’ Question

Here are some guidelines to keep in mind when patients are experiencing fear:

Use emotional words to reduce resistance. 

As discussed in Chapter Three, patients who are acting and reacting from an emotional perspective are more open to emotional words.  Jason began the conversation by acknowledging and showing empathy for Amar’s feelings of fear.  This in turn was honoring to Amar, and caused him to be more open to talking further.  It also increased his trust in Jason.

 

Reinforce progress actively overcoming fear. 

Patients like to feel they are making progress, even when they are initially diagnosed and may not have begun treatment.  They appreciate being told by healthcare professionals that they are making progress in coping with their condition, especially when this positive reinforcement is associated with a specific action they have taken.  And receiving praise encourages more action.  When Jason responded enthusiastically to Amar’s interest in meditation and use of positive thinking, Jason helped to assure that Amar will continue with his efforts.

 

Ask the patient to articulate specific fears.

Don’t assume you know what the patient is afraid of but, instead, invite the patient to start the conversation.  Otherwise, the patient may agree with you out of a need to please you and/or to avoid talking about the real fear, or you may introduce something else to be afraid of.  Instead, ask the client to identify a fear, perhaps starting with the greatest fear, as Jason did with the question, ‘Why don’t you tell me what’s scaring you the most?’

This approach provides the patient with an opportunity to attain some emotional relief by identifying a fear, and provides a starting place for helping the patient to gain a realistic view of their fears.

 

Approach the discussion of information tentatively. 

As discussed previously, patients who are experiencing strong fear are hypersensitive to aggressive behavior, or any insulation that they ‘should’ be feeling or behaving a certain way.  And any information that is perceived as being forced upon them will most likely be immediately rejected because a fearful patient will feel threatened by the potential of feeling even more afraid.  Jason began by inviting Amar to discuss his fears: “Why don’t you tell me what’s scaring you the most?”  This was followed by a tentative offer of information, which Amar could then accept or reject.

 

Caution: Patients may react to hearing the word ‘fear.’

While a patient may appear to be experiencing fear around their diagnosis, the healthcare professional is advised to use this word carefully.  There are two reasons for this caution.  Directly addressing fear may imply to patients that they have a ‘reason’ to be fearful – they may take this as a subtle cue from the healthcare professional that there is reason for alarm.  Secondly, patients may assume that the healthcare professional is implying that they are overreacting, or are somehow ‘weak,’ if they are experiencing fear.  Instead, use softer terms like ‘concerned about’ when approaching fear with patients, and let the patient be the first to use stronger terms like ‘fear’ and ‘scared.’  Once the patient has articulated fear in these words, then it is appropriate to follow up using the same language.

 

 

Be prepared to make a mental health referral. 

Fear can be crippling if it leads to helplessness and, in turn, depression.  The healthcare professional should always be on the lookout for symptoms of depression, as described in Chapter Three, and be prepared to make a mental health referral if needed.

 

A Note About the Role of Superstitious Thinking

While the fear that newly-diagnosed patients feel around their illness is based on concern for how the medical condition might affect multiple areas of their lives, as described earlier, fear can also be related to superstitious thinking, e.g. imagining the worse in the hope that the situation will not be that bad.  The concept of superstitious thinking is described in various ways but, in relation to patients’ feelings of fear in reacting to medical diagnosis, it can best be described as follows:

 

If I think it is going to be awful, then maybe it won’t be quite as bad and I won’t be disappointed and I might be pleasantly surprised.

 

Patients who are coping with their diagnosis through superstitious thinking will basically create a sense of fear in themselves, and express this fear, out a irrational hope that if they expect the worse, or act as if they are expecting the worse, the situation won’t actually be this bad.  Patients in superstitious thinking, for example, may express the belief that they are going to die from their condition, regardless of the evidence to the contrary.  They may talk about their expectations of losing their job or their family, or having to give up the activities that they enjoy most in life.  Superstitious thinking is a way of avoiding disappointment by imagining the absolute worse.  It is also based in a belief – a superstitious belief – that this kind of thinking can somehow serve to avoid a negative outcome.

Patients whose fear is derived from superstitious thinking can be a challenge to healthcare professionals because they have a stake in believing, or at least professing to believe, the worst.  Consequently, they can be frustrating to work with if this attitude results in refusal to listen to recommendations and information and/or an insistence on interpreting what their healthcare professionals say in terms of supporting evidence for the worst outcome possible.  Patients in Flight reaction may adopt this attitude as may those in Freeze reaction.

When suspecting that a patient’s fear is based on superstitious thinking, it is recommended that the healthcare professional gently encourage the patient to consider the facts as well as their own positive experiences at this point in the diagnosis.  It may require repeated discussions to help patients move away from this attitude.

 

Summary

Fear is a normal response to a medical diagnosis and is generally experienced, at varying levels of intensity and duration, in newly-diagnosed patients.  However, patients experiencing fear may have difficulty being open to information or making decisions about their treatment. Healthcare professionals can assist patients by being sensitive to their fear so that it doesn’t become a barrier to communications.