After the Diagnosis: Helping Patients Cope With their Emotions

After the Diagnosis: Helping Patients Cope With their Emotions

by Gary McClain
Psychotherapist Gary McClain discusses the importance of understanding clients' reactions to new diagnoses, the three main responses they have, and advocating for them with healthcare providers.

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The New Normal

“I just got diagnosed. Now what do I do?”

The focus of my professional work is on helping patients to cope with medical diagnosis, so I hear this question a lot. But many psychotherapists tell me that their patients also talk to them about their health issues, including sudden, serious medical diagnoses.

As mental health professionals, we may provide the only opportunity that newly-diagnosed patients have to talk to someone in this situation. The traditional medical establishment is equipped to help patients from a medical, but not an emotional, perspective. Family members and friends are also suddenly thrust into the emotional chaos surrounding the diagnosis, and often need help with their own emotions and helplessness.

Our patients facing a medical diagnosis look to us for help in sorting out complicated and scary feelings during a highly stressful time so that that they can move forward in their lives. In this regard, our job is to help patients define and embrace a “new normal” —with a positive self-image, retention of as many cherished routines and rituals as possible and supportive relationships—but also help them to integrate the effects of treatment and make ongoing lifestyle adjustments. Patients facing a diagnosis want nothing more than to be as normal as possible.

If newly-diagnosed patients are able to get needed emotional support early on in their diagnosis, they will be that much better prepared to cope as they move forward with their treatment. As therapists, we help them to prepare for the road ahead.

Medical Diagnosis=Stress

Receiving a catastrophic medical diagnosis is a stressful and sometimes traumatic event. Newly-diagnosed 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, it gives way to one of three reactions that occur in response to stress: 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.
Patients can be taught how to be Fighters.
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. Those in fight response are best equipped to deal with a new diagnosis. They 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 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. 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 decision-making to coping with the treatment to ongoing recovery and life management. And if those patients find their way to the office of a mental health professional, we can play a formative role in their journey.

The First Reaction

Whether catastrophic or chronic, almost invariably patients describe their reaction with one word: shock. People often experience numbness, as if they are in a trance, or simply have “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 that they have previously been on. Still, it is only human nature to cling to that possibility that “it won’t happen to me.” This belief is mainly unconscious; after all, most of us don’t 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 realized that, no matter what, my life was never going to be the same."

The initial shock may last a moment, 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, that they really aren’t invincible after all.
Being faced with a diagnosis, while not usually a death sentence, is similar to hearing about a death.
And the diagnosis —whether it requires extensive treatment that 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, and the healthcare professionals they are working with may or may not be able to provide emotional support for their patients.

During this time of initial shock, patients are often not open to more information, nor willing to discuss their diagnosis and what it means. It is difficult to communicate with patients who may be unable to hear or comprehend what they are being told, which presents a particular challenge to their healthcare providers who may need to begin a medication regimen and/or make a decision about the path of treatment. The newly-diagnosed patient may need some time and space to sit with the news, and 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.

Patience is required. Human beings can’t be forced to take in more information than they can process at any given moment moment, and often the best way to help patience move through this early stage is to be willing to sit with them, offering support while being sensitive to the readiness of the patient to process this news. Psychotherapy can provide vital support during this time, a chance to vent about the frustrations and the fears.

Clearly, sensitivity to how a patient is responding must be balanced with the level of urgency in taking any necessary action. For example, it may be appropriate for the therapist to act as a patient advocate by encouraging the patient to schedule a follow-up appointment with their healthcare provider to further discuss the diagnosis and formulate his/her questions. And even to help the patient formulate a list of questions to ask their healthcare provider. Scheduling a follow-up session with the patient to discuss and process what they learned in this second appointment can also be invaluable.

The Three Fs

Accepting that life is going to change is the first step toward coping with the emotional impact of the diagnosis and making decisions. Though newly diagnosed patients come to this realization differently and at different times, most patients fall within one of the fight/flight/freeze responses.
 

Fight Freeze Flight
Positive Thinking Isolation Empowerment
Rigidity Helplessness Emotional Coping Skills
    Rational Thinking


Flight: The Case of Dave

The best way to introduce the Flight response is through a case example of a newly-diagnosed patient I’ll call 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.
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 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 in this state 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, they may profess to “love” their practitioners, which can preclude them from obtaining a second opinion on the diagnosis, investigating treatment options, and at least checking into the credentials and track record of their physician. Patients in Flight reaction may also attach themselves to an unproven, non-medical treatment with potentially alarming consequences.

The flight reaction can also result in such strong emotions that patients are unable to access their logical mind. Excessive crying, expressions of anger, giving in to fearfulness—these responses signify that a patient is also in flight of a different sort—not toward the first available treatment or the most loved practitioner, but instead running away from their diagnosis.

Freeze: The Case of John

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, 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, emotions appear to stop working, not because they are broken but because they are being tightly held in place.
Logic without emotion is not necessarily going to result in rational thinking.
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 aren’t consciously suppressing their emotions, but their emotions are nonetheless inaccessible to them. They may think they are being “rational” 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 adopt an attitude of hopelessness and helplessness. By not allowing themselves to work through the initial emotions, like anger and fear, they essentially remain stuck. Often they refuse to discuss their condition any more than absolutely necessary with their healthcare professionals, and may avoid telling family members as long as possible. Whereas patients in flight reaction may completely give themselves over to their emotions at the expense of rational thinking, patients in freeze don’t acknowledge their emotions, which leads inevitably to avoidance 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 for them. In essence, they decide not to decide.

Fight: The Case of Marie

Being open to emotions can result in an 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. These are the fighters.

Fight doesn’t necessarily imply aggression and, in fact, sometimes patients 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 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 acknowledge the feelings that arise 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 think.
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 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, but they are on the whole 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; they may be more temperamentally inclined towards this kind of response to adversity once they move beyond the initial shock. These individuals will sometimes present challenges to their healthcare team, because they tend to be much more active in their own treatment, and believe that the ultimate decisions regarding sources of information, treatment alternatives, and lifestyle adjustments, lies in their own hands. However, the healthcare team can work with patients experiencing freeze and flight reactions to create and enhance fighter skills.

Psychotherapy: Bridging the Gap That Healthcare Professionals Can’t Fill

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. But newly diagnosed patients often have a hard time processing the overwhelming information they are bombarded with by their healthcare providers, and this is where psychotherapy can play a vital role.

Often patients are so flooded with emotion when they first receive their diagnosis that they aren’t really listening to what they are being told; they might “hear” it, but not be able to make sense of it and, as a result, they may miss key pieces of information or misinterpret what they’ve heard. This can be frustrating and alarming for the healthcare professional, who may or may not have the patience or skill to help their patients through this initial phase. Psychotherapy can help the patient to cope with the fear and anxiety that may be preventing them from processing information about their diagnosis and their treatment options, and to evaluate the options from both rational and emotional perspectives.

This can also be a good time to involve family members in the therapy. They often need support as well in processing and understanding the diagnosis, figuring out how best to support the patient, and deciphering what their role will be throughout the treatment process. Both patients and their families and close friends may not yet have the words they need to discuss their feelings and reactions with each other, and therapists can play an important role in helping to facilitate communication between patients and their loved ones.

Newly-Diagnosed Patients in Psychotherapy

A new medical diagnosis brings with it the probability of change—in routine, in relationships, in self-image—and human beings are creatures of habit, not wired to embrace change. Uncertainty about the future and what challenges might soon be presented, fears about loss, including finances, relationships, favorite activities and one’s future dreams are all a part of what the newly diagnosed patient brings to therapy.

Some of the factors that influence the way an individual reacts to a medical diagnosis include:
  • Perceptions of the severity of the diagnosis—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 own 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 that are realistic and consistent with its severity. Either way, perceptions have a direct influence on emotions.
  • Personal coping style—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 suppressed. 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.
  • Prior experience of illness—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 to deal 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.

The Unanswerable Question

Newly-diagnosed patients inevitably ask one question: “Why me?” This may be a medical question, as the patient tries to understand the medical reasons behind the diagnosis, though there is usually an undercurrent of self-punishment—“If only I’d eaten better” or “if only I didn’t smoke” this would never have happened. People may also feel guilty about asking this question, as it can seem to suggest that it would be more fair and right if it happened to someone else. And patients may also express acceptance, but nevertheless ponder the randomness of life.

The point for therapists is not to answer this question. For many patients, “Why me?” opens the floodgate to releasing their own emotions, because it is a way of articulating that basic question of fairness and the role of fate, core issues that patients grapple with as they begin to process their diagnosis and move toward acceptance and empowerment. Ultimately, “Why me? is an existential question, and as therapists, we can use it to delve more deeply into the meaning of life for our clients and, if appropriate, work with them to cultivate a deeper connection to their religious or spiritual communities and practices.

Facing Difficult Emotions

When I first met with a patient I’ll call Yolanda, who had been diagnosed with cancer, she said:

“All I could think about was how concerned my doctor was when she told me I had cancer. 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 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.”

During the course of our counseling sessions together, I was able to help Yolanda identify the emotions that she was experiencing, especially those that she thought she “shouldn’t” be feeling (I always begin by kicking the positive-thinking police out of the room).
“All I could think about was how concerned my doctor was when she told me I had cancer. 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 big trouble."
I also supported her as she began to deal with her diagnosis on a day-to-day basis, including giving the news to her family, making the treatment decision, undergoing surgery and chemotherapy, and making lifestyle changes. Helping Yolanda recognize, accept, and cope with the emotions around her illness allowed her to move into an empowered fighter position.

Yolanda gave voice to her greatest fears about cancer. As we worked through the “why me?” question, I told her about similar experiences by other patients facing cancer to help normalize her reaction. It’s important for people to remember that they are not alone and that many have walked the path before them. I also encouraged her to arm herself with real facts by asking questions of her treatment team and information-gathering on her own, and at her own pace. Information is an antidote to fear.

As Yolanda faced her fears about her cancer diagnosis, I encouraged her to express other emotions as they arose. Allowing herself to be angry was an important step for her, as she was able to express her frustration at having to take a break from her active life to go through treatment. As she stated, “I want to scream at life and how unfair everything is!” During a later session, as she was beginning cancer treatment, she talked about attending a wellness lecture and leaving feeling ashamed that she “might have avoided this if I had taken better care of myself.” And during chemotherapy, she expressed sadness that she wasn’t able to “be the mother that my kids need me to be.” Yolanda needed the opportunity to express these emotions in a safe, non-judgmental environment so that she could continue to cope with her day-to-day life and responsibilities.

Challenging Harmful Beliefs

As patients react to the stress of their diagnosis, their fundamental beliefs about life are put to the test, many of which, from a Rational Emotive Behavior (REBT) perspective, may be irrational and therefore lead to reactions and emotions that are unproductive and self-destructive. I was able to gently help Yolanda to identify beliefs that resulted in, as she said, “beating up on myself” and “telling myself that I shouldn’t feel the way that I do.” Irrational beliefs common to newly-diagnosed patients include:
  • My life will not change unless I want it to.
  • I must be available to the people who need me at all times.
  • If I live a good life, bad things won’t happen to me.
  • If I don’t keep a positive attitude, other people will think I am a failure.
  • If I don’t maintain control of my emotions I will collapse.

I can’t emphasize enough the importance of first and foremost being a supportive, listening ear in the true sense of Carl Rogers—non-judgmental, unconditional positive regard.
I can’t emphasize enough the importance of first and foremost being a supportive, listening ear in the true sense of Carl Rogers—non-judgmental, unconditional positive regard. This is what patients need most when they first get diagnosed. Motivational interviewing techniques can also be helpful in assessing readiness and introducing alternative ways of coping.

As Yolanda was ready for me to move from the role of supporting and normalizing her emotional reactions to examining her beliefs and understanding the connection with her emotions, I used a more active approach to help her identify her triggers, reframe her irrational beliefs, challenge either/or thinking, recognize and replace negative self-talk with health-enhancing affirmations and use progressive relaxation techniques.

A Note About Grief

Newly-diagnosed patients 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 they 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. For many newly-diagnosed patients, their diagnosis causes them to take a look at one or more of their basic beliefs about life and to reevaluate them. This may be the first time that they have looked at these beliefs and how they affect their actions and emotional reactions. During this process, assessing a patient’s spiritually, and encouraging them to seek spiritual guidance in whatever way is meaningful to them can be helpful in getting through the grieving process.

Sensitivity to the Influence of Culture and Gender

It is also important for healthcare professionals to be aware of the influence of culture and gender. Cultural background can influence how patients interact with the medical establishment, how they experience and express emotions, and their willingness to accept mental health intervention. Gender can present further complications in expressing emotions around illness as well as in getting informed. In Western culture, women tend traditionally to be more active medical consumers than are men.

Working with the Healthcare Team

The healthcare professionals that are working with newly-diagnosed patients can greatly benefit from the ability to understand and recognize how patients are reacting to their diagnosis, and psychotherapists can play an important role in consulting with them. Understanding whether a patient is having a flight, freeze, or fight response, for example, will guide healthcare professionals in gauging their readiness to receive information, so that it is presented in a manner in 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 in 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.

I often work directly with physicians and, depending on the wishes and permission of the patient, will contact the healthcare team to share information and, as needed, to advocate for my patient. Where possible, maintaining open communications with healthcare providers, and offering to support them during especially difficult times during and after treatment, can be invaluable to the patient. Many healthcare providers also recognize the emotional component as key to enhancing recovery and ongoing compliance and are happy for the support.

Offering the healthcare team an understanding the patient’s particular reaction style can help them tailor their approach in ways that leverage the patient’s strengths. We can specifically give the team advice about how best to:
  • Present information on the condition and its treatment
  • Coach patients through the treatment process
  • Make recommendations on lifestyle management
  • Encourage patients to seek support with activities of daily living
  • Monitor ongoing compliance

Preparing for the Road Ahead

Finally, I always tell my clients: You are not a diagnosis. Your diagnosis is only part of who you are. Remind yourself every day that you are a fascinating, multi-dimensional creature with a past, a present, and a future that belongs to you and to you alone. Embrace life and your potential to live your life, with all of its triumphs, set-backs, surprises, and detours. Now, let’s get prepared for the road ahead!



© 2014 Psychotherapy.net, LLC
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Gary  McClain
Gary R. McClain, PhD, LMHC, CEAP, is a psychotherapist, patient advocate, and author in private practice in New York City, with a focus on newly-diagnosed patients. His publications include a supplementary textbook for healthcare professionals, After the Diagnosis: How Patients React and How to Help Them Cope (Delmar, 2010). He blogs as “Dr. Gary” on the social health communities of AllianceHealth.com and is Mental Health Editor of HIVPlusMag.com. He maintains an award-winning Website, www.JustGotDiagnosed.com. He can be reached at gary@JustGotDiagnosed.com

CE credits: 1

Learning Objectives:

  • Define the three most common reactions to serious medical diagnoses
  • Discuss ways to help patients become fighters
  • Explain the importance of working with healthcare providers during treatment

Articles are not approved by Association of Social Work Boards (ASWB) for CE. See complete list of CE approvals here