To follow is an article on understanding the emotional reactions of newly-diagnosed patients. This article is for the benefit of both health professionals in understanding the reactions of their patients and the patients themselves in trying to come to terms with their feelings after a medical diagnosis.
This article has been written by our guest writer Gary R. McClain, PhD. Gary is a licensed counsellor, life coach, and educator who specialises in working with clients who are facing chronic and catastrophic medical diagnoses, as well as their caregivers and healthcare professionals. His coaching and education program for newly-diagnosed patients, Prepared for the Road Ahead ®, is organised around emotions, personal relationships, embracing change, communicating with healthcare professionals, staying informed, making treatment decisions, self-image, and planning for the future. He maintains an award-winning Website, JustGotDiagnosed.com offering advice, inspiration, and information.
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By Gary McClain, PhD
Receiving a catastrophic medical diagnosis is a stressful event. Patients feel an immediate sense of uncertainty – life will never be quite the same. And life may end. And like other stressful events, our minds and bodies are hardwired by nature to react. The initial reaction is shock, as our conscious minds essentially shut down while, subconsciously, this information is processed.
As the shock fades away, it gives way to one of three reactions that occur in response to stress. These reactions are commonly known as flight, freeze, and fight. The Flight response is primarily an emotional reaction, and patients may be so caught up in their emotions that they may not be able to make objective decisions regarding their condition and its treatment. On the other hand, those having a Freeze response may be unable to acknowledge their feelings at all or may have a fatalistic view, either of which may result in inaction. Ideally, those in Fight response have access to their emotions as well as their logical resources, and are able to harness both as they face their illness. Most important, patients can be taught how to be Fighters.
These basic reactions, in turn, impact the kinds of emotions that newly-diagnosed patients experience, and how they cope with these emotions, as well as how they deal with their diagnosis from a rational standpoint, e.g. including information gathering. For better or worse, how patients cope during those first few days and weeks after receiving the diagnosis will have implications throughout their treatment process – from treatment decision making to coping with the treatment to ongoing recovery and life management.
For healthcare professionals, understanding and recognising how patients are reacting to their diagnosis can be of mutual benefit to them and their patients. For example, while patients experience a range of emotions in reaction to their diagnosis, understanding whether a patient is having a Flight, Freeze, or Fight reaction will guide healthcare professionals in gauging readiness to receive information, so that it is presented in a manner to which patients will most likely be receptive: Those in Flight reaction may need some additional emotional support while those in Freeze reaction may need some coaching on interpreting what they read and hear with a sense of optimism. Fighters may ask a lot of questions for which the team needs to be prepared. And going forward with treatment and recovery, patients who don’t become Fighters may continuously erect barriers to compliance and life management.
The First Reaction: No Reaction
When healthcare professionals are sitting with a patient who has been newly diagnosed with a health condition, whether catastrophic or chronic, almost invariably the patient describes his or her reaction with one word: shock, or related terms like numbness, in a trance, or simply, ‘no feeling at all.’ The experience of shock is often associated with disbelief or a sense that their emotions might be so strong that they should be held at bay for fear that they might be overwhelming. There are of course exceptions. For example, when a condition from the past is recurring, or when symptoms over time have rendered the diagnosis inevitable, patients may report an initial feeling that ‘the other shoe has finally dropped’ or that they are about to go down a road that they have previously been on. Still, it is only human nature to cling to the possibility that “it won’t happen to me.” This belief is mainly unconscious; after all, most of us spend our time assessing our chances of getting hit by a medical diagnosis.
Carole described her reaction when she was first diagnosed with cancer.
"It was like the world suddenly stood still. I mean, all I could hear was my own breathing, and the thumping of my heartbeat. At first, I was completely numb, and I wasn’t thinking anything. And then I started saying the word ‘cancer’ over and over. Still, no feelings. But deep inside, I realised that, no matter what, my life was never going to be the same."
The initial shock may last moments, hours, days, or may continue on, as the patient’s emotional and rational sides are both struggling with the news. If you have been through the experience of a diagnosis, you might remember how you first reacted, or didn’t react, to the news, or maybe you have seen someone else go through it and felt your own helplessness as you watched them struggle.
In a way, being faced with a diagnosis, while not usually a death sentence, is similar to hearing about a death. As Carole, in the example above described her diagnosis, nothing will ever be quite the same. Newly-diagnosed patients are left with the knowledge that, yes, bad things can happen. They realise that they aren’t invincible after all. And the diagnosis – whether it requires extensive treatment that essentially interrupts normal life for months or longer, or whether it requires medication and alterations in diet and lifestyle – will at some point require the patient’s acknowledgement and full attention. Knowing that this looms ahead can also be initially overwhelming for the patient.
During this time of initial shock, patients are often not open to more information, nor willing to discuss their diagnosis and what it means. This presents challenges to the healthcare providers who may need to begin a medication regimen and/or make a decision on a path of treatment. It is difficult to communicate with patients who may feel as if they are unable to hear or comprehend what they are being told.
Some patience is needed at this time. The newly-diagnosed patient may need some time and space to sit with this news. If the healthcare professional pushes them too hard to discuss the treatment plan or to make a treatment decision during this time, the patient may become defensive and refuse to talk further, potentially becoming even more resistant. Human beings can’t be forced to take in more information than they can process at any one moment.
It is recommended that patients be provided with some time to sit with their diagnosis. Clearly, sensitivity to how the patient is responding must be balanced with the level of urgency in taking any necessary action. However, it may be useful to schedule a follow-up appointment to provide the patient with some time to react to the diagnosis and formulate his/her questions, or to call the patient in a day or two to either schedule an appointment or to remind the patient to make sure they don’t avoid their follow-up appointment.
After the First Shock
Ironically, accepting that life is going to change is the first step toward coping with the emotional impact of the diagnosis and making decisions.
Newly-diagnosed patients all come to this realisation at the same time and in the same way, and some unfortunately do not face it at all. What is consistent among newly-diagnosed patients is that each individual goes through their own process in terms of how they deal with this news and how they move forward. Still, patients’ reactions can be categorised as Flight, Freeze, or Fight.
These three terms are rooted in the earliest days of the human race when, anthropologists tell us, a predatory beast might appear at any moment. In the 1920s, psychologists began using the term “flight or fight” to discuss how humans react to a threat, and when stress emerged as a concern in the 1970s and 1980s, a third reaction – freeze – came into use.
These three basic reactions – flight, freeze, and fight – are also relevant in describing how we react to medical diagnoses.
Flight - Positive thinking, rigidity.
Freeze - Isolation, helplessness.
Fight - Empowerment, emotional coping skills, rational thinking.
Flight: Charging Forward, but Blindly?
The best way to introduce the Flight response is through a case example of a newly-diagnosed patient who will be referred to as Dave. An active man, without a history of health problems, his diagnosis of a heart condition took him totally by surprise. His physician presented him with what she thought was the best recommendation, which was a triple bypass, and then suggested that Dave go home and do some thinking before making a decision.
Dave later reported that the sense of shock continued not only that evening, but for a couple of days afterward. He couldn’t believe that he, of all people, was being told that he was in anything but top condition. And his heart? Not a chance. He told his wife only that his doctor was watching his heart, but that he was absolutely fine, which of course she was skeptical of but knew better than to push if Dave wasn’t ready to talk. Dave describes the next few days like this:
"Once the numbness started to wear off, I kind of went into a panic mode. It was like I had this thing around my heart and I wanted it cut out as soon as possible. I was afraid to think because I was afraid I might talk myself into doing nothing, or that I might put too much strain on my heart. I imagined my doctor as my savior. I wanted to put all of my faith and trust in her and have her direct my path. I was in such a rush, I asked her to call the cardiologist she had recommended to try and influence him to schedule me for surgery as soon as possible."
While Dave is placing all of his trust in the first physician he encounters, he is also running toward the treatment that feels most expedient. He is not considering the implications of the treatment, in terms of factors such as side effects, recovery, and ongoing lifestyle management. As a result, he may later discover that this is not a treatment that he was prepared to deal with, which has implications for ongoing compliance as well as dissatisfaction with his healthcare provider.
The Flight reaction has other implications as well. Individuals with this reaction may – out of a sense of panic – run toward unproven alternative treatments with potentially alarming results. They may also be susceptible to the recommendations of healthcare providers with whom they feel comfortable with emotionally but who may not offer the best treatment option. For example, patients in Flight reaction may profess to ‘love’ their practitioners. Like falling head-over-heels in love, the Flight reaction doesn’t leave room for obtaining a second opinion on the diagnosis, investigating treatment options, and at least checking into the credentials and track record of the physician. Patients in Flight reaction may also attach themselves to an unproven, non-medical treatment with potentially alarming consequences.
On the other hand, the Flight reaction can result in a strong emotional response whereby patients are unable to move beyond their emotions and cannot access their logical side. Excessive crying, expressions of anger, giving in to fearfulness… these responses signify that a patient is also in Flight – not toward the first available treatment or the most loved practitioner but instead running away from their diagnosis.
Freeze: Don’t React and Maybe the Diagnosis Will Go Away
Not all patients ‘take flight’ toward the first available treatment. Some don’t take flight at all. Instead, the initial shock gives way to sitting and staring into space, literally and figuratively, waiting for the nightmare to pass, or for someone, often a family member, to step in and take charge. This is understandable. After all, between the shock of the diagnosis, and their perception that they are unprepared to make the decisions that are suddenly thrust upon them, or that they have no hope, they are essentially immobilized.
When in Freeze reaction, the emotions appear to stop working, not because they are broken but because they are being tightly held in place. And while this might be an opportunity for the rational side to kick in and take charge of the situation, logic without emotion is not necessarily going to result in rational thinking, as evidenced by John.
"I just sat there when the doctor told me, and I guess I’m still just sitting still. I can hardly get out of the chair, to tell you the truth. I kind of decided to be philosophical about it. I don’t know much about this but I do know that statistically, the numbers are against me. I mean, what can I do when fate isn’t on my side?"
John is using the defense that individuals in Freeze reaction often adopt: refusing to react emotionally. Not getting actively involved in learning about the condition and its treatment. Unfortunately, this also means giving up.
Essentially, the Freeze reaction is an extension of the original feeling of shock, but with some key differences. Shock is the mind’s way of shutting down the emotions, and allowing the brain to process the information, before reaction. Patients in Freeze reaction are consciously suppressing – holding down – their emotions. Instead, they are giving in to rational thinking, based on their view of the facts. But there are risks involved when the logical mind is operating without the emotions.
Patients in Freeze reaction, because they are operating without their emotional side, may be at risk for adopting an attitude of hopelessness and helplessness. First, they are not allowing themselves to work through the initial emotions, like anger and fear, which patients generally experience when they are initially diagnosed.
They are missing that experience. Often patients in Freeze reaction refuse to discuss their condition any more than absolutely necessary with their healthcare professionals, and may avoid telling family members as long as possible. And while patients in Flight reaction may have completely given themselves over to their emotions, at the expense of rational thinking, patients in Freeze have not acknowledged their emotions, which leaves them stuck in avoidance and isolation.
One characteristic common among patients in Freeze reaction is an unwillingness to make decisions about their treatment. They rely on their physicians, possibly working with family members, to make these decisions. Basically, they decide not to decide.
Fight: Striking a Balance Between Emotion and Logic
Being open to emotions can result in a inner sense of optimism and hope. If this optimism is balanced with rational thinking, patients are in the best position to make treatment decisions, deal effectively with treatment and lifestyle changes, and otherwise cope with the changes and challenges that may arise as they face the future. Again referring to the standard reactions to a stressful situation, these individuals are in Fight reaction.
Fight doesn’t necessarily imply fighting in the sense of taking up arms and, in fact, sometimes clients resist this word because of that association. Being a fighter means being empowered in terms of understanding the diagnosis, the options for treatment, and what lifestyle adjustments need to be made in the near future, and beyond. Being empowered is about arming oneself with emotional coping skills as well as rational thinking.
Fighters have acknowledged the feelings that arose as a result of hearing the diagnosis and continue to honor their own emotions. It would even be reasonable to say that dealing with the emotional aspects of a diagnosis opens the door to rational decision making. Fear may, realistically, never fade away. The anger and disappointment may flare up at times. But emotions like fear and anger, when they are acknowledged and experienced, may also give way to hope, optimism, and a renewed passion for life.
Marie said it this way:
"I sat and cried and asked ‘why me?’ for quite awhile, maybe a few days. And then I stood up and said, ‘I am going to fight this beast. I’m not going to let it beat me down.’ The next day I made a list of who I needed to talk to, where I needed to go for information, and what I needed to start planning for. That doesn’t mean I don’t feel overwhelmed sometimes, because I still do. But I’m also in active mode."
Marie didn’t hold back on her emotions but, instead, faced her disappointment and fear. She sat alone with her emotions and, in her case, had a good cry. She also discussed her emotional reactions with a member of the healthcare team, who was comfortable being a ‘listening ear.’ Had she not taken the time to experience how she was feeling, she would have been forced to sit with a large block of emotion, and it would have essentially taken all of her mental energy to hold it down. By doing so, she was able to start asking questions and making decisions.
Patients in Fight reaction are more prepared to take action with their condition. By working through their emotional reactions – feeling their feelings and expressing them to supportive listeners – they are not running from their feelings, nor are they so overwhelmed by them that they can’t – or don’t have to – think. The result is a sense of self confidence that comes from being aware of, and open to, emotions. Fighters also have access to their rational minds. This doesn’t mean that they are in perfect balance every day, or that they don’t have bad days when nothing seems to go right.
Fighters are able to search for, and process, information. They are more likely to ask questions and to evaluate alternatives. They take more control over their treatment decisions and the ongoing lifestyle adjustments that they need to make.
Their balance of emotions and logic results in an attitude of empowerment toward their healthcare and the individuals who deliver it. For some patients, the Fight attitude comes naturally; it is simply how they react toward their diagnosis, once they move beyond the initial shock. These individuals will sometimes present challenges to their healthcare team, because they believe that the ultimate decisions regarding, for example, sources of information, treatment alternatives, and lifestyle adjustments, lies in their own hands. However, they are also more likely than those in Flight and Freeze reaction, to be active in their treatment. Furthermore, the healthcare team can work with patients experiencing Freeze and Flight reactions to create and enhance Fighter skills.
Recognising a Patient's Reaction
The healthcare team can greatly benefit from recognising the type of reaction that individual patients are having to their diagnoses. If the healthcare team is sensitive to the implications of these reactions for patients, time and energy can be focused on the patient’s strengths as well as weaknesses in how they approach their diagnosis and treatment. Understanding the patient's reaction can be useful for:
- Presenting information on the condition and its treatment;
- Coaching patients through the treatment process;
- Making recommendations on lifestyle management;
- Encouraging patients to seek support with activities of daily living;
- Monitoring ongoing compliance.
Recognising emotional reactions can enhance patient satisfaction and lead to a more productive relationship between patients and healthcare professionals. Emotional awareness is empowering!
This artical is well written, it is difficult to understand another persons emotions or to comprehend what an indervidual is thinking when given a diagnoses of a catastrophic medical condition. By understanding initial reactions and reconising the stages of Flight,Freeze or Fright more support can be given.
Thanks very much! If you have any question, please let me know! Gary