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Coming to grips with childhood adversity

By Oliver J. Morgan September 7, 2017

Counselors and mental health professionals of all stripes are coming to understand the prevalence of childhood adversity, toxic stress and trauma in our caseloads. Barely a day goes by that we do not see someone with a trauma history, whether we are aware of it or not. Some have even called for universal trauma screening of all clients and patients as an ethical responsibility, especially for those individuals who are more at risk, including first responders, military personnel, refugees, those with serious medical and chronic illness, and people struggling with addiction. It would help to know what we are dealing with upfront.

I became aware of a duty to inquire about trauma in 2007 when I began the Supportive Oncology Service (SOS), a psychosocial counseling practice colocated in a medical oncology setting. I had been teaching, practicing and publishing mostly in addiction studies at the time, but I was hungering for change in my own clinical work. When the opportunity to work alongside physicians and learn about serious medical illness came along, I jumped at it. Quickly, I discovered that what I was learning about the interface between addiction and trauma could just as easily be applied to the occurrence of trauma in a cancer-involved population. This cross-fertilization of ideas and their practical outcomes has been a rich source of learning for me.

The Adverse Childhood Experiences (ACE) studies, a collaborative project between Kaiser Permanente and the Centers for Disease Control and Prevention (CDC), instigated my interest. The ACE project was designed to study long-term relationships between adverse experiences in childhood and adult health and behavioral outcomes. I had begun looking into this as an offshoot of my addiction work but promptly came to realize its applications in the general population. The initial studies were conducted from 1995 to 1997 with 17,000 ordinary Americans in a large outpatient medical clinic and now have been replicated across a number of states and even internationally.

Since its inception in 1995, numerous papers have been published by the ACE project that present the evidence for consistently strong and graded relationships between adverse experiences in childhood, household dysfunction and a host of negative health outcomes later in life. Many of the most serious illnesses facing our country — heart disease, cancers, chronic lung and liver disease, a host of autoimmune disorders, obesity, substance-related and addictive disorders — as well as a variety of health-risk behaviors, including smoking, use of illicit drugs, high numbers of sexual partners and suicide attempts, are strongly related in a dose-response or graded fashion to childhood adverse experiences.

This suggests that the impact of adverse childhood experiences on adult health status and adult suffering more generally is powerful. Dose-response relationships indicate a change in outcome (e.g., harmful substance use or ischemic heart disease) that is associated with different levels of exposure to a stressor. Experiencing multiple categories of trauma in childhood increases the prospects for later illness. ACE studies measure the number of categories of exposure and not the number of instances; for example, one instance or multiple instances of sexual assault would count as one category. If anything, this underestimates a person’s exposure to adverse experiences.

Researchers are finding that the occurrence of adverse experiences is quite common in all populations. Relationships found in the original population are being replicated elsewhere. Fifty-two percent of those participating in the original study acknowledged at least one category of adversity in childhood. Eighty-seven percent of those who acknowledged one adverse childhood experience also experienced additional adversities. The study revealed that adverse experiences occur in clusters, with 40 percent of the original sample reporting two or more categories of adversity and 12.5 percent experiencing four or more categories of adversity.

The ACE categories are as follows:

  • Physical abuse
  • Sexual abuse
  • Emotional abuse
  • Physical neglect
  • Emotional neglect
  • Mother is treated violently
  • Loss of a parent for any reason
  • Mental illness in the home, including suicidal behavior or institutionalization
  • Substance abuse in the household
  • Criminal behavior in the household, including incarceration of a household member

‘Mild’ adversities?

What first strikes people when they review the categories above is how different the list seems from what we expect. It challenges our assumptions. Many of us are familiar with the standard understandings of trauma connected to natural or human-made disasters, battlefield experiences, violence or sexual assault. Clearly, these are life-altering events. Although these categories are on any list of traumatic events, so are forms of household dysfunction, neglect, and emotional abuse and humiliation. We are coming to understand that, when dealing specifically with children, a wider range of traumatic experiences can be equally devastating and produce debilitating outcomes years later. Further studies are also uncovering negative outcomes related to more “ordinary” adversities such as accidents, childhood hospitalizations or the loss of a sibling.

The ACE results had suggested that the different categories were essentially equal in their damage. This was startling. However, ongoing trauma science supports this conclusion. Although some categories of adversity stand out because of the social significance and stigma attached to them, we now know that more hidden or subtle adversities, such as neglect and experiences of recurrent humiliation by a parent, can both be detrimental in the present and carry long-term consequences for adult health and psychiatric illness. Scientists such as Martin Teicher and his colleagues at Harvard University have documented the potent negative effects of parental verbal aggression and emotional maltreatment.

More common adversities can have large impacts on children. The clinical and research focus on posttraumatic stress disorder may have slanted our expectations, giving us the impression that adversity comes only with high-profile suffering. If it doesn’t leave a mark, it can’t be all that damaging, right? In reality, nothing could be further from the truth.

In short, poor health and risk for illness — medical as well as psychiatric — can be rooted in childhood psychosocial experiences. They can also be hidden due to time, denial and social taboo. The ongoing ACE studies and allied research have given us a new lens for viewing health, wellness and disease. This is nothing short of revolutionary. It is instructive that this new vision has been picked up by the Center on the Developing Child at Harvard University and the American Academy of Pediatrics. Programs for medical education, intervention and prevention are being developed by these groups and others.

Looking at cancer

In 2010, one of the ACE papers made the dose-response link to risk for lung cancer. This got my attention. Adverse childhood experiences are obviously not the only causes of cancers — disease is often multicausal. However, the associations this paper made between having a history of adverse childhood experiences and those who were first hospitalized at younger ages with lung cancer and died prematurely at younger ages from lung cancer were striking. Smokers were much more likely to have a history of adverse childhood experiences than were nonsmokers. In addition, those with adverse childhood experiences were more likely to begin smoking at younger ages than were other smokers.

I was amazed until I went back and did a chart review for my small oncology service. At that time, we had seen about 100 patients. Admittedly, this was a potentially skewed population, but even so, 60-70 percent of our patients with a variety of cancers met the ACE criteria for adverse experiences, and a large proportion of them had multiple ACE categories in their past. Research had suggested that those with four or more categories of childhood adversity were likely to be diagnosed with cancer or some other serious illness. Those with six or more categories had a life expectancy shortened by up to 20 years. My patient population buttressed those numbers. In addition, several of my patients who were not smokers but nevertheless were diagnosed with lung cancer did have a history of trauma. That day I became a believer in universal screening for trauma in my population of cancer patients. My colleagues and interns have also become believers.

When I discussed these outcomes with several of my physician colleagues, they quickly came to the conclusion that because childhood adversity was strongly associated with the risk of early smoking — nicotine is a powerful anti-anxiety agent — that would likely explain the prevalence among patients with lung cancer. Case closed. If a cancer patient also had a traumatic childhood history, smoking was the likely pathway from trauma to lung cancer. Risky behavior led to later disease.

This did not sit well with me, however. First, it did not explain the high trauma numbers in my cancer patients more generally (a number of whom were nonsmokers) and, second, identifying only this pathway seemed too facile. I believed that more was involved.

Changes that make us vulnerable

At first blush, ascribing disease to risky behaviors and poor lifestyle choices seems reasonable. There is obviously some truth to it. Lots of scientific evidence points to smoking as a risk for cancer. Still, I wondered, could there be other pathways from childhood adversities to cancer? The connections seemed clear, but what were the explanations? As an addiction specialist, I was suspicious of the “poor choices” explanation. Were there other, hidden dynamics that were not so obvious?

This is where the intersection of childhood adversity and neurobiology becomes so important. As a counselor, I had focused my thinking on the social and psychological explanations. Childhood adversity short-circuited psychosocial development. Trauma created toxic stress in a person’s life. Negative experiences became part of a person’s sense of self and view of the world, which made living difficult. These negative experiences also placed emotional burdens on the person’s psyche and spirit, creating negative internal images, expectations and attachments at the core of the personality. People learned to be wary of others and became more guarded, isolated and distrustful. Fair enough. But how do we get to physical disease?

This move requires an alchemical kind of insight — namely that the footprints of our psychosocial experiences of attachment and caregiving are inscribed into our brains and bodies in what Allan N. Schore, Daniel J. Siegel and others call “psychobiological” experiences. Donna Jackson Nakazawa, in her 2015 book Childhood Disrupted, described it this way: Biography becomes biology.

We are continuing to learn about the depths of this process. From our earliest beginnings, experience shapes the development of our brains, bodies and critical survival systems. The formation of our neural architecture, emotional and cognitive networks, regulatory systems, coping and stress response, and immune systems depends on the kinds of caretaking we receive. Social networking is part of our DNA it seems; it is essential for our survival but can also create vulnerabilities.

In childhood, all the essential systems are forming and developing. When children are caught in cycles of abuse, neglect or humiliation, their stress response and coping mechanisms can be degraded and become stuck in the “on” position. Their bodies are continually bathed in inflammatory stress chemicals. This can lead to physiological changes, long-lasting inflammation, eventual breakdown and disease. The immune system can be weakened, even at the level of genes. Neuroscience is helping to document these enduring kinds of changes, large and small, that are the pathways to later illness.

Another form of negative development that can follow from childhood adversity affects the child’s regulatory coping mechanisms for stress. This can lead to difficulties such as substance use and addictive disorders. Emotional and behavioral regulation are essential skills, built upon the foundation of neurological development. Toxic stress, however, can alter and “miswire” the development of critical coping systems, resetting their baseline levels of activity and making them supersensitized, not only to stress but also to triggers that signal the approach of rewarding or stressful situations. In these instances, individuals may substitute chemical or behavioral forms of coping, reward, relieving stress or alleviating anxiety and pain. Regularly resorting to such substitutes can ingrain these choices into neural channels that are resistant to change once firmly set.

These ways of thinking have opened my eyes. Childhood maltreatment and adversity alter children’s brain development and create the underlying conditions for short-term coping and long-term medical and psychiatric problems, including cancers and addiction. The intersection of knowledge from developmental psychology, attachment theory, trauma and neuroscience is presenting us with many new ways to conceptualize the challenges that confront us. As counselors, it is imperative that we remain open to these new developments.

Recommendations

Based on my experience, I want to make some practical recommendations:

1) Counselors need to learn all we can about adverse childhood experiences and their impact on adult living.

2) We can all benefit from universal screening for adversity and trauma as a first step in clinical work. A few simple questions can be added to our standard history taking. Asking these questions on an abstract or computerized form, followed up with face-to-face conversation, has been found to be the best practice for obtaining accurate information. There may be direct health benefits to these conversations. As reported in Nakazawa’s book Childhood Disrupted, physicians who discussed adverse childhood experience questions with patients following completion of intake forms found a 35 percent reduction in office visits and an 11 percent reduction in emergency room visits for patients with chronic ailments over the ensuing year.

3) When we discover a history of adversity, we should remain curious, be empathic and be predisposed to believe. The primary consideration initially is creating a safe space.

4) Be prepared for pendulum swings in the conversations. It is normal to move forward in the story and then back off when the client shows anxiety.

5) Teach grounding techniques so that the client can retreat to safety when overwhelmed.

6) As is the case in much of our counseling work, self-knowledge is critical. Each of us can benefit from conducting our own self-assessment of adversity and trauma. Understanding our own issues and working with them may be the most important first step in recognizing the problem and then working with others.

Good luck. This work, I believe, is one of the greatest secrets and potential resources in clinical practice today. Trauma continues to be a hidden occurrence among our clients and patients for too many counselors, physicians and human service providers. We need to do better.

 

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Oliver J. Morgan is a professor of counseling and human services at the University of Scranton in Pennsylvania. He is beginning his 27th year at the university and is completing a book titled Hungry Hearts: Unlocking the Secrets of Addiction and Recovery. Contact him at oliver.morgan@scranton.edu.

Letters to the editor: ct@counseling.org

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

A counselor’s view of advanced breast cancer

By Cheryl Fisher February 29, 2016

Breast cancer touches all of our lives, and I am no exception. In February 1996, I went for my first mammogram. I was only 33 at the time, but I had read about the importance of having a baseline mammogram for early detection of breast cancer. Early detection meant cure, right? As a single mother of two young daughters, I was all about early detection and cures.

So, I went for a mammogram, astonished at how my 34B’s were able to squish like a schnitzel on the chilled mammography plate. The technician greeted me with a smile and warm hands, and for both I was grateful. The procedure, while uncomfortable, was not unbearable. I mean, I had given birth to Branding-Images_Canceran 8-pound baby without so much as an episiotomy. This was a simple walk in the park. The technician informed me that no news was good news, and I left feeling initiated (once again) into the sisterhood of womankind.

You can imagine my shock when I received a call mid-March that something unusual had been detected in my mammogram and that I needed to return for an amplification. The previously chipper technician met me with a solemn face and greeted me in almost a whisper. She did not make eye contact. The amplification was done in silence. Again I was told that I would be contacted if something was detected.

A week later, I was scheduled for a needle biopsy. As I lay facedown, my left breast dangling through the hole in the hospital table, thoughts raced through my head: “What if it is cancer? I can’t stop working. How will I take care of the girls?”

“No,” I told myself. “This is not cancer. I’m only 33 after all, and who gets cancer this young? I am a vegetarian. I am an aerobics instructor, for heaven’s sake! I don’t feel sick!”

I was provided with a bag of ice to place over the area of my breast that had been biopsied. They had found three suspicious areas and removed them, leaving a marker just in case … In case of what? I wondered. I left with my bag of ice and a fearful heart.

I started noticing articles in newspapers and magazines about young women with breast cancer. Had these always been there? Was I just now seeing them? I went home, hugged my daughters and cried. I cried the entire weekend as I waited for Monday’s pathology report.

I went alone to the hospital. I didn’t want to feel like I had to take care of another human being if my news was grim. I wasn’t sure I could take care of myself, let alone another person.

I went to the desk and announced my arrival. Again, the quiet whispered reception. I was immediately whisked away to a back office. Alone. Alone with a running video titled Living With Breast Cancer. Oh, my God! It’s true! I must have breast cancer. They’re preparing me by showing this video.

I began rehearsing how I would tell my family … my parents … my brothers … my daughters. The pathologist arrived and sat in a chair across from me. I took a deep breath. I don’t think I exhaled until I had been home for several days.

The pathologist began. “Well, we found three suspicious nodules and we removed them.” OK, buddy, so what are they?

“I’m curious,” he continued. “Have you ever experienced a trauma to the left breast?”

A trauma? You mean other than the needle biopsy that occurred the previous week? “No,” I replied in a small voice while still holding my breath. “Not that I am aware of. Why?”

“These are calcifications that appear to be from a traumatic blow to the breast,” he answered.

Let me get this right. I have been poked, prodded and petrified because of benign calcifications that possibly occurred during a Thanksgiving round of family football?

“So, I do not have cancer?” I whispered.

He shook his head and finally made eye contact. I was flooded with relief. I would live. I would raise my daughters. I would endure their teenage antics, their graduations, their weddings perhaps. I might even experience grandchildren!

What I wasn’t prepared for was the second wave of emotion that I experienced — anger. Anger at the time wasted, waiting and worrying for four excruciating days before I had to return to the hospital, find parking and sit in a room for 20 minutes watching a video about breast cancer. Anger at waiting for a doctor to hand over my fate. To me, this seemed so insensitive and cruel. What is wrong with health care that we treat the disease without treating the person?

However, I was 33 years old, a single mother, and I had just been told that I did not have cancer. I left that hospital, lived my young life and put breast cancer aside — until recently.

The call

I am a licensed clinical professional counselor. I had been in private practice for a few years when I received an email from METAvivor (metavivor.org), a local nonprofit group whose mission includes providing emotional support to individuals living with stage 4 metastatic breast cancer and promoting funding for research projects. The organization was looking for a therapist to facilitate a support group focused on meaning construction and stage 4 metastatic breast cancer.

Author and psychiatrist Viktor Frankl provided us with a foundational understanding of the importance of meaning construction in his classic book Man’s Search for Meaning. He proposed that the search for meaning was universal to the human experience and that it was a prerequisite for mental and physical well-being. Furthermore, an inability to make sense of our situation has been found to be associated with poor health. Therefore, a cancer support group that promoted meaning-making could provide patients with the necessary tools to experience a sense of well-being, even in light of their diagnoses.

My clinical practice had included counseling for bereavement and hospice care, but I had been spending more time working with survivors of trauma and had focused my advanced training in the area of trauma and spirituality. So, I wasn’t certain that I was going to be the best person to facilitate a support group for stage 4 metastatic breast cancer. Regardless, I agreed to co-facilitate
the pilot group with a colleague from a local hospice.

The pilot group lasted eight weeks. During that time, I became acutely aware that the youngest member of the group was experiencing her diagnosis in a much different way than her older counterparts were. She was a 30-year-old married woman who had been diagnosed with stage 4 metastatic breast cancer eight months prior to the launch of the group. She had a beautiful 6-month-old baby boy who provided all of us such joy when he visited our group. Her disease appeared to be relentless, however, resulting in a complete bilateral mastectomy and oophorectomy and causing her days of nausea and fatigue. She would come to group pale and weak, convinced that the last round of treatment had to be curative because of its great potency. She died two months after our group ended.

According to the Metastatic Breast Cancer Network, approximately 162,000 women in the United States are living with stage 4 metastatic breast cancer, and only 27 percent will survive as long as five years. This translates to one death from metastatic breast cancer every 14 minutes. Of this population, 5 percent are women younger than 45. Metastatic breast cancer is more aggressive the younger the person is at onset; only 2 percent of premenopausal women with metastatic breast cancer survive longer than five years following their diagnosis of advanced cancer. Most women living with breast cancer may share similar experiences regarding self-image, relationships and support issues, but unique needs appear to exist among young women living with advanced breast cancer.

As a result of meeting the young woman in our pilot support group, I conducted my dissertation research on spirituality and meaning-making in premenopausal women diagnosed with stage 4 metastatic breast cancer. I dedicated my dissertation to her and to all of the young women living with advanced breast cancer, and I committed my work to serve as the voice of those who can no longer speak. What follows is some of the wisdom provided to me by the women in my pilot group and research study.

I am woman?

The treatment for advanced breast cancer involves invasive surgeries that remove not only what many women described as their femininity (breast tissue and nipples) but also their fertility (ovaries and uterus). As a result of treatment, women were catapulted into early menopause and became subject to the physical and psychological manifestations of estrogen depletion.  These manifestations included weight gain related to decreased metabolism, hot sweats, dry skin, decrease in vaginal lubrication and decline in libido.

According to the women in my study, the experience of metastatic breast cancer had stripped them of their bodies, their fertility, their youth and their sexuality. Extensive research demonstrates that physical alterations of the body related to the treatment of breast cancer may have negative effects on identity, confidence, mood, esteem, sexuality, self-satisfaction and quality of life. Treatment may involve not only the removal of breast tissue and nipples, surrounding lymph nodes and ovaries, but also the insertion of an external port to receive chemotherapy. This may be followed by radiation therapy. The body is left scarred and burned with an existing portal that emerges from the upper trunk.

Many of the women in my study described feeling like a “freak,” a “mess” or a “patchwork quilt.” All of the women described feeling detached from their bodies following their treatments. The body that remained was described as lifeless and clinical, almost corpselike.

BFFs and other strangers

The struggle to cultivate authentic relationships was a common theme in this study. The women spoke of their desire to be able to discuss the genuinely harsh reality of their diagnoses with family members and friends. However, the women felt that a substantial portion of their circles of support were unable (or unwilling) to assimilate adequately and comprehend the grave world of living with advanced cancer. The women were asked (directly and indirectly) by family and friends to compartmentalize their experience with cancer and to act as if they were not ill. Such requests led at times to feelings of anger, resentment and, eventually, rejection and isolation.

Sexuality

In addition, there appears to be an absence of sensuality as it relates to the body that remains. This, combined with decreased libido, proved to be a common issue for all the participants in my study. The women expressed a desire to resume an active, healthy sex life with their partners, but they struggled with experiencing a lack of sex drive and feeling unattractive.

Research indicates that women younger than 45 who are diagnosed with breast cancer have more difficulty adjusting than do older women. These younger women have lowered overall quality-of-life ratings linked to concerns about body image, partner relationships and sexual functioning, and they also exhibit less adaptive coping styles.

It also appears that having casual sexual encounters becomes less attractive when living with advanced cancer. One of the women described the need to feel emotionally safe before allowing a stranger into the scarred world of breast cancer. She noted, “I will need to trust the person to tell my whole story.”

Legendary living

Engaging in honest dialogue regarding the fears experienced by a person living with a life-threatening illness seems to provide some degree of anxiety relief for the person. This appears to be the result of directly identifying and addressing that which concerns the individual.

For example, many of the women in this study spoke of their fear of being forgotten and not having a part in the rearing of their children. This discussion provided opportunities to identify ways that might allow their values and beliefs to continue to exist even after their lives ceased. Among the ways these women attempted to provide continuity of their presence in the lives of their families was through writing letters, keeping journals and signing cards for future events.

In addition to memory-making projects, all of the women in the study were involved in using their stories to promote education and awareness of the specific needs of young women living with stage 4 metastatic breast cancer.

Pink isn’t my color

In addition to feeling isolated from family and friends, these young women living with advanced breast cancer described feeling alienated from the breast cancer community as a whole. The “pink” model of breast cancer awareness strives to inspire hope of survival and a cure. However, these women live with a diagnosis that mandates that they are not in remission and that the cancer has spread to other organs. For them, there is no cure at this time. One woman in the study described the pink ribbon as “a noose that is killing me.”

Faith and peace

Psychiatrist and author Irvin Yalom proposed, “If we must die, if we constitute our own world, if each is ultimately alone in an indifferent universe, then what meaning does life have?”

As one of the study participants said, life-threatening illness can “suck the meaning out of life, making the person feel already lifeless.” In facing death, we are faced with making sense of life, and it would appear that we make choices about how to live our lives until death. Therefore, anything that affirms life force, meaning and importance to others can counter the sense that death has made its claim.

Frankl reminds us that we have the ability to choose how we respond regardless of our circumstance. This can be empowering even when facing death. The women in my study discussed the role of choice. One woman described using humor to help her cope with the chemotherapy. Another described an attitude of gratitude: “I show gratitude more often. … It is liberating to know I can choose happiness.”

The women spoke of feeling a sense of being part of a bigger, universal plan. In particular, they described feeling that a divine presence was actively participating in their illness. Some women in the study felt that their diagnosis was a wake-up call to be more present in their lives and to be closer to the transcendent. Each described a restoration process of reclaiming and redefining her life.

Other women in the study believed that their spiritual faith gave them the strength to endure the changes brought about by their illness and its subsequent treatment. Interestingly, all of the women described experiencing a richer, more authentic life that a “loving presence” had transformed from the ashes of advanced cancer.

Conclusion

As counselors, we have an incredible opportunity to help support young women living with advanced breast cancer in the following ways.

Body talk: We can help these women (and their partners) reconnect with their bodies in a healthy and empowering manner. We can talk about sexuality and recognize the role that it plays in our emotional, spiritual and physical well-being. To support premenopausal women who are living with advanced breast cancer, we need a greater understanding of their fears around rejection and increased recognition of the role that sexual intimacy plays in their lives. This is a focus of my current research.

Bittersweet friendships: We can validate the changes that occur in these women’s friendships and offer grief work around these losses. We can help clients establish healthy boundaries in relationships that feel authentic and protective. In addition, we can promote the strengthening of those relationships that are nurturing and empowering.

Legacy work: We can help clients cultivate strategies for legacy. Lillie Shockney, administrative director of the Johns Hopkins Breast Center, has written an exceptional book titled 100 Questions & Answers About Advanced and Metastatic Breast Cancer that helps clients and families navigate the challenges of advanced breast cancer. It also provides excellent ideas for being present and remembered beyond the cancer. In addition to her book, Shockney hosts exceptional retreats for families living with advanced breast cancer and provides a forum for discussion, connection and community to these patients and families.

Beyond the pink ribbon: We can connect young women who have advanced breast cancer to communities that are validating and supportive. Wonderful online communities include Young Survivors Coalition (youngsurvival.org) and the Pink Daisy Project (pinkdaisyproject.com).

Faith and justice: Facing death directly can be strangely comforting and empowering. However, counselors may be uncomfortable facilitating a candid dialogue that might be painful for their clients. Furthermore, counselors need to be open to their own discomfort in discussing death and dying. Counselors are encouraged to work from a conviction that they are helping rather than hurting clients by asking them to lean into the discomfort that comes from confronting one’s death. These clients are faced with family members and friends who are reluctant or unable to join them on this journey of facing death. Counselors have the opportunity to embody the existential experience and join the client on this difficult journey. The essence of relational, embodied theology is not captured simply by the empathic presence of the counselor, nor the rites and rituals that inspire spiritual and psychological nourishment. The essence of embodying suffering is to give voice to marginalized persons and to tell their stories. Better still, counselors can be instrumental in nurturing the intrinsic divine wisdom that is present in all of us and empowering clients to tell their own stories.

 

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Cheryl Fisher is a licensed clinical professional counselor in private practice in Annapolis, Maryland. Additionally, she is a visiting full-time faculty member in the pastoral counseling program at Loyola University Maryland. Her current research is titled “Sex, spirituality and stage 3 breast cancer.” Contact her at cy.fisher@verizon.net.

Letters to the editor: ct@counseling.org

Counseling clients with cancer

By Lynne Shallcross February 24, 2015

As of Jan. 1, there is official recognition that a cancer diagnosis can, and often does, affect a patient’s mental health. At the beginning of the year, a requirement was put in place for cancer programs to screen all patients for psychosocial distress in order to receive accreditation through the Branding-Box-CancerAmerican College of Surgeons Commission on Cancer. The centers accredited by the commission treat almost 70 percent of newly diagnosed cancer patients in the United States every year.

The new guideline represents a step forward in terms of acknowledging the link between mind and body when it comes to cancer. But for Gary Patton, this “new” emphasis is really nothing new at all.

Patton has worked as a counselor in the cancer center at St. Mary’s Medical Center in Huntington, West Virginia, since 2008. Working at the time as the director of St. Mary’s employee assistance program, the hospital reached out to him after medical professionals there took note of increased mental health concerns among oncology patients.

St. Mary’s ultimately decided to establish a Department of Mental Health Counseling and Employee Assistance Program, which Patton directs. The main purpose for creating the department, he says, was to bring a counselor to the bedsides of patients, primarily in the oncology center. In addition to Patton, the mental health counseling department employs another full-time counselor and one part-time counselor. It also runs a medical-based counseling internship program for counseling students.

“The thing that St. Mary’s was looking at in 2008, [hospitals are] looking at across the nation now: What psychologically happens to patients when they hear ‘You have pancreatic cancer’ or ‘You have lung cancer’? You know, what’s happening to these patients and these families? If we’re not going to assess their distress levels with that, then we’re leaving a piece of their care unattended,” says Patton, a member of the American Counseling Association.

Patton says the new accreditation requirement means that hospitals “can’t just assume, ‘Oh, that patient looks like they’re OK. They’ll let us know if they need something.’ So just like [with] every patient, you check their vitals, you check their blood levels … but every patient needs to be assessed for the psychological reaction to cancer.”

According to the World Health Organization, the number of new cancer cases is expected to rise globally by about 70 percent over the next two decades. The news is better in the United States, where the cancer death risk is actually decreasing. But the numbers are still staggering. According to the American Cancer Society, an estimated 1,658,000-plus new cancer cases will be diagnosed in the United States this year. And if the vast majority of the country’s new cancer cases are treated in centers now required to screen for psychological distress going forward, a growing need may soon exist for mental health practitioners to work with these patients.

“Historically, psychologists and social workers are the most commonly found mental health providers in medical systems,” says Mary Jones, a counselor in private practice in Sioux Falls, South Dakota, who also teaches in Capella University’s mental health counseling graduate program. “I think we [counselors] need to be more involved in getting in on that turf.”

Jones’ background includes previously serving as a counselor in the oncology clinic at a hospital in Sioux Falls, where she worked with cancer patients, their family members and their caregivers as well as the health care providers treating those patients. To illustrate how well suited counselors are for this area of work, Jones points to recommended practices that she says were given to hospitals by the National Cancer Institute Community Cancer Centers Program a little less than a decade ago. The recommendations included facilitating communication between patients and health care providers, identifying the psychosocial needs of patients and engaging patients in the management of their care.

“All of those things are things that mental health counselors do,” says Jones, an ACA member who presented on the topic of working with cancer patients at the ACA 2014 Conference & Expo in Honolulu. “We work on communication, we work on coordination, we work on getting clients invested in their wellness journey, so it just seems to me like this is such a natural fit.”

The gamut of emotions

A man recently took a bad fall on his construction job, so he came to St. Mary’s Medical Center to get checked out. The doctors took X-rays and scans, but instead of finding an issue related to the fall, Patton says they discovered a cancerous mass.

People often get blindsided by a cancer diagnosis, Patton says, even when they sense that something is wrong. “Sometimes we find with these patients that their symptoms don’t seem to add up to the severity of something like cancer,” he says. “Many of our patients will say, ‘I’ve been tired, I haven’t had much of an appetite, I’ve lost a little bit of weight and my back’s been hurting.’ That could be the flu. [But] they come here and find out that it’s cancer.” Understandably, he says, they leave in total shock.

Patton describes other instances in which patients receive a cancer diagnosis and, instead of shock, immediately adopt a defeated attitude. “So on the one hand you have crisis and shock, and on the other hand, as soon as they hear it, [certain patients think], ‘Well, I’m not surprised. Most of my family members had cancer, and I’m going to die too.’ I think those are two unique dimensions of treating people who have cancer from a psychological perspective,” Patton says. “Because on the one hand, you’re doing crisis counseling. And on the other side, you’re talking about the will to live and trying to help people mobilize some resources.”

Jones says several clients told her that they prayed to God and tried to bargain even before a formal cancer diagnosis was made. “If you don’t give me cancer,” they’d pray, “I’ll do this or that in exchange.”

It may come as a surprise to learn that once those patients actually received a diagnosis and treatment plan, they often experienced some decrease in their anxiety and depression, Jones says. “Now they had a plan. Now they had knowledge. It [was no longer] scary, unknowable stuff that was happening,” she says.

But once treatments such as chemotherapy and radiation were set to begin, Jones says the patients’ fear tended to spike back up because they didn’t know what to expect. “Once they got through the first two sessions, there was again a lessening of anxiety because they knew what to anticipate,” she says.

When cancer clients have a history of severe mental illness, the cancer diagnosis has the potential to exacerbate that illness, so counselors should be on the lookout for increasing symptoms, Patton says. Along those same lines, he says counselors should be aware of what psychotropic medications the person is taking and what impacts the cancer treatments could have on those medications, and vice versa.

Patton worked with a client being treated for cancer who also had a history of schizophrenia. The client was on a medication for the schizophrenia that wouldn’t cooperate well with chemotherapy treatments. Patton, the pharmacist and the oncologist worked together to gradually move the patient to a different schizophrenia medication so she could safely begin the chemotherapy for her cancer.

ACA member Sejal Barden, an assistant professor of counselor education and coordinator of the marriage, couples and family therapy program at the University of Central Florida, says clients with cancer can also feel isolated. Although friends and loved ones often provide plenty of support right after a diagnosis is made, as time passes, they often don’t know what to say, explains Barden, who previously worked in a cancer center for two years and currently researches the impact of breast cancer on Latino couples. In cases in which a client feels isolated or abandoned, support groups for cancer patients can provide a good forum to vent and to feel less alone, she says.

Questions of a spiritual or religious nature are also common when patients are dealing with a cancer diagnosis and treatment, Jones says. “There was a lot of discussion in sessions over ‘What’s going to happen to me when I die? Where do I go? Where does my spirit go?’” she says. “Difficulties for me [definitely included] seeing them die but also trying to help them say goodbye to family members and trying to make meaning out of what was going on.”

In cases in which clients are unable to beat cancer, Jones says, counselors might be tasked with helping them consider end-of-life decisions or quality-of-life issues in their remaining time. Jones tried to connect clients in such circumstances with a variety of resources depending on their concerns, including helping them meet with a hospital chaplain or reach out to hospice care.

Predictably, Jones says that feelings of fear, depression and anxiety are quite common in clients throughout the cancer diagnosis and treatment process. Other issues she encountered regularly with her clients included changes in appetite, difficulties sleeping, financial concerns related to paying for the treatments and concerns about changes in sexuality due to the cancer or medication. “And then, almost without exception, somebody with cancer worries about it recurring,” she says.

Patton agrees. Even patients who get through cancer treatment and seem to be recovering well become very anxious again whenever the time comes for a regularly scheduled checkup scan, he says.

In the script of a television commercial Patton did for St. Mary’s about how counseling helps clients with cancer, he said, “Once that word cancer is used in the same sentence with your name, your life will never be the same again.”

That change can take two forms, he explains. “It could put a cloud over this person that never fully goes away, or it could show them a vitality and resilience for life they never had before because they know how close maybe they came to death or how close they came to chronic suffering. And they’re past that now, and they’re enjoying life more than ever because they’ve had that critical experience,” Patton says.

Taking a systemic approach

Although cancer traditionally has been conceptualized as an individual diagnosis, research has begun conceptualizing it as a couple’s or family’s disease, Barden says. The impact of cancer on loved ones became apparent to Barden in her work with a cancer survivor support group in North Carolina.

“What kept coming up for those women was how much the cancer had impacted their relationships, their marriages, their partners, but how there were no supports for their partners,” says Barden, who spent a month last summer as a fellow at the National Cancer Institute. “The cancer survivors felt there were adequate psychosocial groups, counselors, etc. [for them], but there was really nothing for their partners to be able to talk about how they were experiencing [it].”

“Sometimes the loved ones are actually more distressed than the patient is,” observes Patton, who also teaches in the online counseling program at the University of the Cumberlands in Williamsburg, Kentucky. “I’ve had patients tell me, ‘My family needs to settle down. … It’s like they’re more worried about me than I am about me.’”

Burnout can be a huge issue for loved ones and caregivers of a client with cancer, Jones says. “The thing I heard over and over again in my support group for caregivers was they needed a break, they needed to get away from it,” she says. “These are things we’d work on in our group sessions — being able to say to people around them, ‘I don’t want to talk about cancer today. I don’t want to think about cancer today. Can we just talk about anything else?’”

Jones says she would remind her caregiver clients that if they didn’t take good care of themselves, then they wouldn’t be able to adequately care for their loved ones with cancer over the long term. Caregivers and loved ones can also experience feelings of anger for bearing the heavy burden of caregiving, Jones says, and, oftentimes, they then feel a sense of guilt for having such feelings.

Additionally, Jones says, there are often concerns around parenting, especially related to deciding what to tell children about the cancer diagnosis and when. Jones recalls one client and his wife choosing to wait to tell their college-age children about his cancer diagnosis until he was in his third session of chemotherapy, primarily because that was when their children would be finished with their final exams.

The hospital where Jones worked had a program in place for parents with younger children. Jones would fill a backpack with age-appropriate information about cancer as well as toys and games to send home to the children.

When taking a systemic approach, counselors should also pay attention to how the actions of loved ones might be affecting the cancer patient now and what the dynamics of the family system were prior to the diagnosis, Patton says. “Maybe there have been disruptions of some kind — divorce or alienation from family,” he says. “Once that diagnosis of cancer comes, it can be a resurgence of all that. Either people try to overcompensate for the harm or the damage or the disruption that they’ve had in the past, or it can take those problems and make them worse.”

At times, Patton and his colleagues will notice loved ones hovering over the patient and drawing a negative reaction from the person. “Sometimes you’ll find that this [involves] family members who haven’t spoken for seven years, and now they’ve heard cancer and they’ve rushed in to be the rescuers. And it’s really irritating the patient.”

Helping the patient and his or her loved ones communicate about the realities of the diagnosis and treatment can also be a critical role for the counselor, Patton says. He has witnessed situations in which both the patient and the patient’s family thought the other didn’t truly understand how bad the cancer diagnosis was. Therefore, they completely avoided talking about it with each other.

Patton says he tries to “expedite a different type of conversation,” reminding the patient and the patient’s loved ones that “truth does not have to be projectile.” Meaning, he says, that they don’t need to share everything they know in one encounter but can instead slowly open up the lines of communication.

From theoretical to practical

Patton says that in his experience, cognitive behavior therapy (CBT), mindfulness and group work can be especially productive when working with clients who are dealing with cancer.

CBT allows clients to explore their emotions and feelings without allowing those emotions and feelings to control everything, Patton says. Behaviors and emotions are determined by thought processes, he points out. So while CBT gives emotions respect, it also enables clients to look at their individual situations again and think about them differently when tackling questions such as “Am I going to be compliant with treatments?” or “How will I live my last days?” says Patton.

A colleague of Patton’s practices mindfulness with clients at St Mary’s cancer center. Patton says this helps clients bypass some of the associated distress and experience some physiologic comfort and relief. Mindfulness can also help clients to reconnect with their bodies and their existence as a person, he says. For example, “I’m not just a cancer patient. I’m a patient who has cancer, but I’m also a patient tomorrow who’s going to see my grandchildren,” Patton says.

Group work can also be beneficial for these clients because it offers them a place to feel support, a sense of belonging and camaraderie. One of the support groups at Patton’s hospital is for cancer clients under the age of 40. One of the topics the group has addressed is being confronted by mortality at such a young age and how to respond to clichés from other people, such as “You’re young; you’ll be fine.”

Judy Green is an ACA member who teaches in the Walden University School of Counseling and co-presented with Jones at the 2014 ACA Conference in Honolulu. She says counselors must be aware of grief issues when working with clients with cancer and their loved ones. For example, Green says, even clients who have survived cancer go through a grief process. Counselors can help those clients validate their feelings of having survived cancer and navigate a new normal now that their life has changed. They might grieve the loss of what they thought their future would be or the loss of their self-identity as a healthy person, Jones adds.

When working with clients who have lost a loved one to cancer, Green says she gravitates toward William Worden’s “tasks of mourning,” which consist of accepting the loss, working through the pain, adjusting to the new reality without the person and finding an enduring connection with the person who died. Green adds that grief counseling groups can be therapeutic both for those who have received a cancer diagnosis and those who have lost a loved one to cancer.

Though each counselor may lean on his or her own preferred counseling approach or framework when working with cancer clients and their loved ones, Barden reiterates that counselors must not conceptualize cancer as an individual diagnosis. “Really understand how the whole system — the family and the couple — has been impacted, and [know] that while your cancer survivor might come to you an hour a week, they’re really going home to their family each day and every day.” Counselors should strive to educate and work with the whole system, Barden emphasizes. “Taking some kind of family, systemic, couples approach is probably what I would say is best practice,” she says.

Patton also supports taking a systemic approaching and says the family must be included in the counseling work. But he also advises counselors who might be treating cancer patients at bedside to recognize when these patients want and need family there with them and when they need to talk alone with the counselor.

Providing these clients with practical and educational information and resources is also a key element to counseling in this area. Jones points out that cancer patients are typically given a substantial amount of educational information before they begin treatment, but they may be in shock and have difficulty absorbing it all at that point. “In many cases, though they had been given that information, it was kind of my job to synthesize it in a more palatable way for them,” she says.

In addition to screening the oncology patients she worked with for psychological stress, Jones also screened them for the types of services they might need. She connected her clients with available resources such as a nutritionist to discuss what to eat when nothing appealed and the financial services representative at the hospital to discuss how they might afford all the treatments. She also gave out free cancer cookbooks to her clients at the hospital.

At St. Mary’s, Patton provides substantial psychoeducation and cancer education to patients, aiming to “simplify this complex, scary thing called cancer.” Patton often stays behind after the oncologist leaves so he can try to explain anything the patient didn’t understand. He says counselors should focus on simplifying the answers and information without resorting to clichés. “Don’t say, ‘Just hang in there. We’ll take care of things,’” he advises.

An opportunity for counselors to emerge

Even if providing mental health treatment to clients with cancer isn’t a specialty for counselors, Patton suggests that they become educated about it because it is highly likely that cancer will affect one of their clients to some degree. For instance, the client a counselor is treating for bipolar disorder might come to session one week and announce that his dad has cancer. “Well, that counselor needs to be able to understand that concept without becoming so alarmed or so anxious that they give the easy answers or give the clichés,” Patton says.

Because cancer can be a scary word, Patton says counselors should start by becoming comfortable with it themselves. They can take steps toward that by educating themselves about different cancers and treatment processes as well as increasing their awareness of cancer resources in their communities, including other mental health providers who may specialize in this area.

“Because it is so prevalent in our society, I think every counselor needs to become more proficient in understanding what this disease process is, who are the people involved in the treatment of it, what are the various kinds of cancer, how does one begin to understand the treatments available for it and [get] acquainted with the treatment process,” Patton says.

Jones says having education and experience in grief work is helpful for counselors who might like to work in this area, as is the willingness to be at the end of life with clients. She suggests checking the website for the American Psychosocial Oncology Society (apos-society.org) for free resources or even signing up for a membership and taking advantage of workshops and continuing education opportunities.

Barden recommends that counselors visit the National Cancer Institute website (cancer.gov) for resources and read the journal Psycho-Oncology.

Counselors interested in working with cancer patients should reach out to the human resources departments at local hospitals and cancer centers and keep an eye on job openings, Jones says. If there aren’t any current openings, she adds, counselors can explain the kinds of services they provide and investigate doing the work on a contract basis.

When a counselor successfully secures work in a cancer center setting, Jones suggests forming an alliance with the resident doctors and nurses as quickly as possible. Jones says that in her experience at the hospital, oncologists were often open to prescribing sleep and anxiety medications to patients. But oftentimes, she says, neither the doctors nor the patients thought to ask the other about this possibility. When counselors can make those connections and work collaboratively with doctors, nurses and other health care providers, patients will see that everyone is working together on the same team for their benefit, Jones says.

With the new accreditation requirements regarding psychological distress screening for cancer patients, Patton expects to see growth in the resources and continuing education opportunities surrounding this topic. And with that, he sees an opening for counselors, and ACA, to fill the new demand.

“What an opportunity for counselors to emerge here,” he says. “What an opportunity for the American Counseling Association to take a step forward and say, ‘Let’s start looking at this, look at resources, make resources available and become the leader in this field of medical-based counseling.’”

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To contact the individuals interviewed for this article, email:

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Lynne Shallcross is a former writer and editor at Counseling Today. She is currently pursuing her master’s degree in journalism at the University of California, Berkeley. Contact her at lshallcross@berkeley.edu.

Letters to the editor: ct@counseling.org