Tag Archives: cancer

Thriving in times of crisis

By Lennis G. Echterling December 10, 2018

I am now reaching the age when people assume that I have achieved a certain amount of wisdom. I admit that I usually enjoy playing the role of the sage as a professor, but at times it definitely has its downside. For example, a new faculty member once said to me, “Hey, Lennie, you’re the silverback gorilla in our department. What’s your advice about this proposed new policy?” I was so irritated that I wanted to hit him with a banana.

For me personally, a more serious downside of aging is that I am now facing a threat to my health, well-being and life. Two years ago, I was notified that I have cancer. A biopsy that I had fully expected to be benign instead turned out to be malignant. I received the call in my office, just before leaving to teach my crisis counseling class. Ironically, after decades of responding to the crises of others, I suddenly became my own case study.

When I entered the classroom late and out of breath, still reeling from the shock of the cancer diagnosis, I realized that I had taught my students well — they immediately sensed that I was troubled and kindly invited me to talk about it. Touched by their sensitivity and concern, I decided to take a risk and openly share with them my bad news.

As I told my story, I began to feel a mixture of profound emotional relief as a person and immense pride as a teacher because my students intervened in my personal crisis with empathy, skill and compassion. It turned out to be a powerful lesson, both for my students and for me. I believe that my students learned to trust the process of counseling, no matter when, where and with whom an intervention suddenly is required. The lesson I learned was to accept the gifts that others generously offer me in my own times of turmoil. That is the essence of counselor education — to practice our craft with one another to promote professional growth and personal healing.

Four principles of thriving

As counseling students, supervisors, teachers and practitioners, we all will have our share of personal, professional and family crises. So, I offer here four principles of thriving that emerged from my own life lessons in dealing with times of turmoil, threat and adversity.

The first principle of thriving is to be resilient. Resilience comes from the Latin word resilire. To resile means to bounce back. In physics, resilience refers to the elasticity of material that can endure strain. For each and every one of us, personal resilience involves not only surviving those inevitable crises ahead, but also truly thriving in our lives.

As I reflect on my two years of cancer treatment, I find that my personal experience has mirrored the typical reactions to a life-threatening situation. I appreciate now more than ever how adaptive negative emotions such as fear and anxiety can be because they focus our attention on the threat and press us to take appropriate action rapidly. But during this time, I also have been discovering deep and abiding positive emotions such as hope, compassion and heartfelt gratitude. Those emotions have broadened and enriched my ways of being. The truth is that both negative and positive feelings are essential for surviving and thriving in times of crisis.

My second principle for thriving is a reminder that you are not alone (and neither am I). Every culture has its folk tales and myths that portray a hero on a quest. No matter how talented and strong this protagonist may be, the person neither travels nor triumphs alone. Jason, the ancient Greek mythological hero, counted on his Argonauts in his search for the Golden Fleece. Somewhere over the rainbow, Dorothy was gifted with the Cowardly Lion, the Tin Man and the Scarecrow to help her find the Wizard of Oz. And in his Star Wars adventures, Luke Skywalker relied on Obi-Wan Kenobi, Princess Leia and Han Solo.

Like the protagonists in those archetypal stories, we also will encounter others who will have a profound impact on our life’s journey. To thrive in our future endeavors, we must accept the gifts that others offer us. To flourish in our personal lives and professional careers, we need to join with others to engage in the collaborative work of supporting, inspiring, challenging and encouraging one another. We are not islands unto ourselves in achieving our potential. We cannot succeed as completely, or as joyfully, on our own.

Third, thriving in our future involves remaining committed to learning throughout our lives. Our graduate training is not a mere dress rehearsal. It is an integral part of our lifelong dedication to continued professional development. A mind is like a parachute — it works best when it’s open. And actions do speak louder than words, so we must seek out mentors who exemplify what we aspire to become, because the most important lessons in life are not taught but caught. Passion, commitment and curiosity are highly contagious. For that reason, I regularly take a close look at my colleagues and my students. What do I want to catch from them?

The counseling profession is like a fidgety kid who is never still — it is constantly on the move as students and practitioners contribute to its vitality. The Mbuti of Africa have a ritualized song that offers a wonderful example of what every professional community should aspire to achieve. In the song, individual singers are responsible for specific notes, but no one carries the entire melody. As a result, only the community can sing the song.

My fourth and final principle for thriving is to make the journey your destination. In Travels With Charley, John Steinbeck wrote, “We do not take a trip; a trip takes us.” I am neither the person who originally entered my own training program nor the beginning counselor who launched my counseling career. Along the way, I have gained a sense of confidence and trust in my own abilities. I have questioned my old assumptions and, as a result, made new discoveries that guide my work. I aspire to continue going with the flow of my career and to be open to the enormous possibilities of future transformations.

Decades ago, as I was immersed in my own graduate education, I was fortunate to develop lifelong friendships with members of my cohort. We brought to our training a similar mixture of rough edges and fine potential, nagging doubts and yearning dreams, neurotic hang-ups and transformational hopes. We told our life stories to one another and threw ourselves into heartfelt discussions that lasted late into the night. Along the way, we would party together. My fellow students taught me how essential it is not only to work hard with your colleagues but also to celebrate with them.

More lessons to learn

Six months ago, lab results revealed a recurrence of my cancer. After completing 15 more radiation sessions, my skin was a raw and painful reminder of my vulnerability and mortality. I continue to Google for any innovative breakthroughs for my cancer, to remain committed to practicing a healthier lifestyle and to explore complementary approaches. I now face a regimen of medications, phototherapy sessions, appointments and lab tests.

I have become accustomed to the role of the patient, but I endeavor to thrive throughout the process. I cherish my loved ones. I give extra hugs to my family and dear friends. And I take every opportunity to show my gratitude for the countless acts of kindness that others bestow on me every single day. My hopes and dreams for the future, which serve as the personal beacons that light my way, are to savor and cherish all the meaningful, loving and joyful moments that remain in my life. I have many more lessons to learn from my students.

 

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Lennis G. Echterling is a professor of counseling at James Madison University. Contact him at echterlg@jmu.edu.

 

Letters to the editor: ct@counseling.org

Counseling Today reviews unsolicited articles written by American Counseling Association members. To access writing guidelines and tips for having an article accepted for publication, go to ct.counseling.org/feedback.

 

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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.

Helping families cope with cancer

By Laurie Meyers November 26, 2018

Cancer. The word alone can evoke terror amid visions of painful treatments and possible early death. Even though many advances have been made in cancer treatment, and despite the fact that heart disease is the actual No. 1 cause of death for adults in the United States, cancer is the diagnosis that many people fear the most.

Receiving a cancer diagnosis is often a devastating blow, not just to cancer patients themselves but to their families. At a visceral level, it is easy to imagine how frightening a cancer diagnosis must be for the patient, but many people — including the families themselves — often underestimate the emotional toll the disease can take on loved ones.

Dark times

Cancer casts such a dark shadow that licensed clinical marriage and family therapist Maya Pandit often encourages clients to refer to it as the “C-word” in an attempt to rob the term of its power. Cancer “is such a ‘big bad’ — not just because it can cause death but because the treatment is difficult and painful,” she says.

For family members, this means grappling with the fear of losing their loved one while hoping for a “cure” that often requires debilitating treatment. Pandit, who is trained as a medical family therapist, a specialized form of family therapy for individuals, couples and families who are coping with physical illnesses, notes that watching a loved one suffer can be more difficult than enduring the suffering oneself.

Managing physical illnesses such as cancer can be isolating and bewildering for patients and their families alike. That feeling of isolation, coupled with the stress of diagnosis and treatment, often strains family relationships — not just between the patient and other family members, but among family members themselves, Pandit explains. Her goal is to help families and couples cope with the reality of the diagnosis while providing support for the patient and one another.

When families are confronted with a cancer diagnosis, their coping strategies often follow a kind of all-or-nothing approach, Pandit says. For some people, the reality of their loved one’s illness is so painful that they refuse to talk about or even acknowledge it. Instead, these family members go on as if the cancer doesn’t exist and everything is fine. In contrast other people attempt to manage their anxiety by becoming hypervigilant and centering all aspects of daily life on cancer, Pandit says. Operating under either of these extremes only makes responding to the crisis more difficult, she adds.

As Pandit explains, getting each family member’s “illness story” is an essential step because it allows counselors to uncover the emotions and difficulties that have arisen from the diagnosis. Then counselors can begin helping the family find a more balanced way to cope. The illness story encompasses each family member’s experience of the crisis, which Pandit solicits by asking questions about when the symptoms started, when and how their loved one was diagnosed and how it felt for the family member to hear the diagnosis. These basic questions encourage a conversation that can help to verbally unlock clients, allowing Pandit to begin unwinding the emotional knots that keep family members from facing the cancer.

With clients who are hypervigilant, Pandit’s goal is to “open the door” to the thought that the cancer already plays a big role in their lives, and if they allow it to always be the primary focus, it will consume all family interactions.

“I often do an exercise in which I ask family members to fill out a pie chart of their lives and how much cancer has taken over,” she says. “We talk about the ways cancer has impacted their daily lives and the creative ways to take back what they can.” Activities such as watching TV shows and movies together or reading the same book and then discussing it serve not only as a distraction but also give family members something to talk about that isn’t related to cancer.

On the other hand, Pandit says that asking open-ended questions or talking about some of the common challenges that families coping with cancer face often helps resistant clients become more willing to speak about what they are experiencing. “If I make sure to be patient and as matter-of-fact as possible, even the most closed people open up at least a little,” she says. “I find that people want to talk but sometimes need time, space, a person who won’t shrink at the topic and, occasionally, some privacy.”

Pandit adds that the most frequent feedback she receives from family members is that once they have opened up and talked about their struggles, they feel lighter. “Talking about how people feel more often than not makes them feel as if they are not alone — that they can handle things one day at a time,” she says.

Family dynamics

Counselors should also keep in mind that each family member has his or her own individual and unique relationship to the person with cancer, says licensed professional counselor (LPC) Kerin Groves, who has worked with older adults in retirement communities, assisted-living residences, nursing homes and home care settings. “Relational dynamics are part of the family system, which often includes old baggage and unfinished business such as wounds or secrets from the past,” she says. “It is imperative that therapists ask each [person] about that individual relationship.”

Among the questions that Groves, an American Counseling Association member whose specialties include grief and loss, suggests that counselors should ask: “Who is this person to you? What does this diagnosis mean in the context of your relationship? What is the nature of your relationship to the patient, both past and present?”

“In that relationship, what are the sparkling gems and what are the sharp rocks? For example,” Groves says, “I have worked with family members of cancer patients who had deeply conflicted negative feelings about the patient, but they were aware that it was not socially proper to say so. They could either stuff their true feelings and experience inner shame and guilt, or they could speak out and experience open shame and guilt — quite a lose-lose scenario. In these situations, a therapist can best serve the family by providing a safe space for whatever needs to be vented, with no judgment.”

“Setting aside any conflicts in family relationships can be as simple as asking for it,” she says. “A counselor should not be afraid to pose the question: What relationships are you worried about right now that are distracting you? What do you need from [a particular family member] in order to set this aside for now? And what does [that family member] need from you? What needs to be said between you and [the family member] in order to move forward with more peace?”

“A counselor can be a rational outside resource in scary times,” Groves continues. “Family members make many critical decisions, and they need a safe place in which to explore options out loud and be heard, encouraged, supported, validated and attended to.”

A source of nonjudgmental support is particularly important because family members often fail to recognize or validate their need for emotional support, Pandit says. “It’s like, ‘You [the patient] are the one with cancer. What right do I have to be upset?’”

Pandit discourages family members from engaging in what she calls the “pain game” — a kind of comparison to determine who is in the most pain. She tells families that pain is pain and that it needs to be addressed, regardless of who is harboring it or the circumstances of those around them.

Mary Jones, an LPC who counseled patients and families during her 20 years in an oncology facility, agrees. She says that most of the adult family members with whom she worked, both in family counseling sessions and in a support group for caregivers, experienced debilitating emotional and physical side effects. These clients regularly reported being unable to focus, having trouble making even small decisions and becoming easily overwhelmed. With their worlds being transformed, sometimes overnight, by a loved one’s cancer diagnosis, some clients felt so disoriented that they wondered if they were going crazy, Jones says.

These family members were often irritable, especially if they were not sleeping well. They felt a pervasive sadness but were often afraid to cry lest they further upset other family members and friends. Physical symptoms such as backaches and stomach issues were also common. Not surprisingly, Jones says, the turmoil often affected these family members’ work lives and personal relationships. 

As Groves points out, counselors may not be working with cancer patients or families in a typical 50-minute therapy session. “Counselors working in cancer treatment centers, infusion clinics, oncologist’s offices and other medical settings may do mini-interventions of 15 minutes between physician visits, or two-hour support group meetings, or brief encounters in hallways or treatment rooms. In these settings, a counselor’s role should simply be [to act as] a calm presence. They are to listen, support, be a container for powerful emotions — including angry rage or hysterical crying — and provide warmth and acceptance.”

A life-threatening illness typically necessitates a major shift in roles and responsibilities within families. One of the things counselors can do is help clients prepare for and cope with these changes in family structure, says licensed marriage and family therapist Ryan Wishart, who also specializes in medical family therapy. For example, a mother with breast cancer who will no longer be capable of doing the bulk of the child-rearing would need the father or other family members to step in and shoulder more responsibility in that area. If the person with cancer is the family’s primary breadwinner but is too sick to work, it may require other family members finding additional means of financial support. Housework may need to be distributed differently, and older children may have to become more independent.

Wishart helps families assess and redistribute their duties by creating a deck of cards that have major roles, responsibilities and chores written on them. “We discuss who ‘owned’ which cards prediagnosis and ways that they can be redealt,” he says.

Groves raises a similar point. “There can be very practical concerns that lie under the surface and get ignored in the medical crisis,” she says. “For example, if one family member insists that the patient be able to go home but dumps the caregiving duties on to someone else, emotions can erupt. A counselor can help by walking the family through the practical options that are both available and realistic.”

Giving care

Caregiving is often one of the most difficult, emotional and divisive issues faced by families with a loved one who has cancer. Family members must work through questions such as what kind of care to pursue, whether a loved one can be cared for at home and who will provide the care.

“Many people get quickly overwhelmed with the details of the cancer journey,” Groves says. “There are just too many decisions and no crystal ball to see the outcomes of each choice. Treatment plans that are too aggressive are uncomfortable for many people, but cultural norms may prevent family members from disagreeing or questioning a medical professional. Palliative care can seem inhumane to some, sending the message that they have given up or don’t want to be bothered with the patient anymore. In addition, I have seen well-meaning doctors who refuse to give up and wait until just before the patient dies to call in hospice — much too late for the family and the patient to benefit from the supportive services they could have received in making the journey through death.”

Families may also disagree about what treatment should be pursued, forgetting that the choice ultimately resides with the patient unless he or she is no longer competent to make the decision. But even after the family has decided the where, when and how of care, providing it can be a time-consuming endeavor that is both emotionally and physically taxing. In addition, caregiving often requires difficult role adjustments or role reversals. For instance, parents battling cancer may become like children to their own children. Relationships may take on decidedly unromantic aspects when one spouse or partner needs to play a more parentlike role for the other spouse or partner.

It can be especially challenging and humbling for parents to give up so much personal control to their children, even if those children are now adults themselves, says Cheryl Fisher, an LPC whose areas of specialization include counseling families and individuals with cancer diagnoses. However, counselors can help these parents see this shift in a different light. Fisher, an ACA member, says she often reminds parents of all the years they spent getting up in the middle of the night or staying up late to give care to family members. Now it is their time to receive and accept care from others, she tells them.

With adult children, Fisher says, the adjustment usually involves probing to see what aspects of caregiving they feel confident about and which ones give rise to discomfort. Personal hygiene is a particularly sensitive area, she points out, because sons are typically uncomfortable with the thought of bathing their mothers and daughters are typically uncomfortable with bathing their fathers. Fisher validates this discomfort, letting her clients know that it is perfectly acceptable to look for home health care support for that particular task. She then talks about other areas of caregiving with which the adult children might be comfortable, such as housekeeping, cooking, doing yardwork or providing transportation.

Fisher also helps adult children who are geographically distant from their parent come up with ways that they can participate with caregiving. For instance, they may be able to contribute financially or pragmatically, such as by locating home health care support or paying for respite care. Perhaps they have enough vacation time to fly in every few months to visit and give assistance to the parent. Distance caregiving can also consist of smaller personal acts such as sending cards and care packages or FaceTiming with a parent while the sibling or other family member who provides most of the in-person care gets a much-needed break to take a nap or make phone calls.

Pandit says that couples going through a cancer diagnosis often don’t know how to talk to each other about the ways that caregiving changes the dynamics of their relationship. She helps these couples explore means of ensuring that caregiving doesn’t take over the whole of their relationship — for example, by dedicating time to just being partners again through activities such as a regularly scheduled date night. She also encourages couples to make sure they continue to talk about things other than the cancer.

Cancer foments a significant amount of fear and guilt, and caregivers often feel that if they make a “wrong” decision or take time for themselves, their loved one will get worse or even die, Jones says. This makes it even more difficult to convince caregivers to engage in self-care. Jones explains to caregivers that to properly take care of their loved ones, they must also take care of themselves. With male caregivers, she found it particularly helpful to tell them to picture themselves as a car. As a car, the caregiver must go to many destinations. Cars, of course, require gasoline to run. So, Jones would ask, what happens when the car makes a lot of trips without stopping to fill up the gas tank?

Similarly, Jones would direct women to picture themselves as a pitcher full of resources and imagine that everyone surrounding them was holding a cup. With so many cups to pour, unless the caregiver refilled her own pitcher, her loved one’s cup would eventually go dry.

Jones also recommends that clients who provide care to a family member with cancer literally schedule self-care for themselves. Making an appointment for self-care — just like making an appointment for the next cancer treatment — helps reframe it so that the caregiver starts viewing self-care as a means of survival, not a selfish desire, Jones says.

True self-care goes beyond taking breaks, getting enough sleep and eating healthy regular meals, and the source is different for everyone. Jones urges clients to identify the things that make them feel nourished. “What recharges your batteries? What fills your cup back up?” she asks. Jones says she finds even a little time interacting with nature rejuvenating, but for others, it may be practicing yoga, meditating, spending time with animals or reading a good book.

Something else that Jones urges counselors to do is to ask caregivers to identify things they can “outsource” that would make life easier. This might involve thinking of friends willing to volunteer a few hours of house cleaning each week, asking a neighbor to walk the dog or seeing if a church care group would be willing to make and deliver 10 days’ worth of casseroles.

Because caregivers are continually fighting burnout, guilt and isolation, Jones thinks that group therapy is a particularly effective method of support. Among others who understand their struggles, caregivers and other family members can more freely give voice to emotions that they don’t necessarily feel comfortable expressing anywhere else. They can admit to being tired, angry, resentful or hopeless without fear that they will be judged poorly. Groups are also a good place for brainstorming and solving problems, Jones says. Individuals can share their challenges, and other group members can talk about what has worked best for them.

Coping with the unknown

The treatment process for cancer is usually hard on everyone. Pandit says the constant ebb and flow of watching a loved one struggle and not knowing for certain that it is going to be worth it in the end is often agonizing.

Groves agrees. “An unknown prognosis is very hard for families [and patients] to tolerate,” she says. “The fear of the unknown is powerful. Facing a known outcome is certainly frightening, but at least there is little or no ambiguity. With a terminal prognosis, there are fewer choices to agonize over. There may be more powerlessness but fewer regrets.”

A terminal diagnosis can sometimes be a “strange kind of blessing,” Pandit says. Knowing the end is coming often encourages loved ones to say things they might never express otherwise, both to the person who is dying and to those who will be left behind.

“Whether the diagnosis is terminal or chronic, a good counselor will bring up universal existential concerns … [such as] fear of incapacitation, of death, suffering, aloneness, meaninglessness, and normalize them,” Groves says. “This allows family members to recognize that their fears are common to the human experience and that it is safe to talk about them. The counselor may not have a solution but does offer accompaniment on the journey.”

That perpetual state of suspended animation that accompanies an unknown diagnosis is painful, but for some family members, it is still preferable to admitting that it is time to let go. Cancer patients are often the first to recognize this truth, and as long as they still have all of their faculties, it is ultimately their choice whether or when to discontinue treatment, Fisher notes. However, family members sometimes remain in denial and may refuse to acknowledge the patient’s impending death, even pushing for continued treatment.

Jones recalls a female patient whose husband had accepted that the time had come to cease treatment but whose adult children kept insisting that the family could “find another way.” The constant badgering was completely exhausting to the patient. She finally turned to Jones and said, “I need you to look my kids in the eyes and say, ‘Your mom has three to six months to live.’” Jones followed the woman’s wishes and then urged the children to ask themselves how they wanted to spend the last months of their mother’s life.

Fisher had a 36-year-old female client with a terminal diagnosis who had moved into inpatient treatment. The woman’s mother kept bustling into the room with vases of sunflowers and other things. Her stated intent was to make the room pretty until her daughter could come back home. The daughter, in obvious distress, yelled, “Mom! I’m not coming home!”

Fisher asked for some time alone with the client and helped her come up with the words that she needed to say to her mother, which were, “I’m going to die, and I need you to be here with me.”

“Counselors often worry too much about techniques and forget to just listen,” Groves says. “Our presence is our best intervention.”

 

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Supporting the client who has cancer

“Fear is the constant companion of the cancer patient,” says Kerin Groves, a licensed professional counselor (LPC) and American Counseling Association member. “Fear that the diagnosis is wrong, fear of telling young children too much or not enough, fear that the surgeon didn’t get it all, fear that the chemo or radiation missed a few rogue cells, fear [during] remission [of] the cancer coming back, fear of getting a new type of cancer, fear of long-term effects of chemo or radiation, fear that tiny bump or growth is cancerous, fear of going out in the sun after skin cancer, fear of every stomachache or headache, fear of loss of sexual function or cognitive function, fear of social stigma with body disfigurement and so forth.”

“These chronic fears are exhausting and can exacerbate into an anxiety or mood disorder,” Groves continues. “Acknowledging fears is the best way to take the power out of them, so invite a patient to tell you all the fearful thoughts that run through their head. They can write them down or say them aloud, with no rules and no judgment. ‘Let’s release them all,’ I tell patients, ‘like taking out the trash. We don’t need them stinking up the house.’”

One of Cheryl Fisher’s current clients had cancer for many years before achieving remission and outliving the original prognosis. However, the client recently reported that she can feel her fear returning. She told Fisher that she doesn’t want to let the fear in because she is concerned about what it might do to her mentally and to the cancer itself. Fisher, an LPC and ACA member, told the client that when people fight back against what they’re feeling, it causes stress hormones to rise. So, ultimately, she says, it is better to face the fear head-on.

“When I’m sad or angry or afraid, I like to pull it outside of my body and look at it,” Fisher told her client. “Fear, you’re here. What is prompting this? What is it trying to tell me?”

The client told Fisher she was afraid that she was already living on borrowed time. As a consequence of this belief, the client was in essence just waiting for the cancer to come back, Fisher explains.

To counter the client’s sense of helplessness and being “stuck,” Fisher acknowledged that neither of them could prevent the cancer from returning, but she asked the client to consider what she did have control of. Did the client have things she had been putting off that she would like to do? Did she have things she was holding on to that needed to be said?

Another of Fisher’s clients was a newly diagnosed cancer patient who seemed to want Fisher to “somehow absolve her from her journey with the diagnosis.”

“I don’t have a magic wand,” Fisher told her. “There’s nothing I can say that will lift you from this journey that you have to go through, but I can promise that I can be there with you side by side during the journey. I can’t solve this for you, I can’t make it go away, but I promise you I will be there with you.”

Fisher notes that being an unflagging source of support is perhaps the most essential role that counselors can play with clients who are seriously or terminally ill. Sometimes, a cancer patient’s family or friends cannot or will not endure their inherent fear and stress to be by their loved one’s side, but counselors can step in and fill that gap, she emphasizes.

“Existential concerns are within all of us, with or without cancer, but cancer and other critical illnesses have a way of bringing them to the forefront,” Groves says. “The work of [Viktor] Frankl and his logotherapy concepts are very valuable for counselors to read and learn. While in a Nazi concentration camp, Frankl came to understand that each of us has a choice in how to respond to our circumstances, no matter how horrific. When all a human’s [other] choices are taken away, we still have the choice of facing our suffering with dignity. This can be empowering for a cancer patient, when presented by a sensitive counselor who honors the values and humanity of the patient.”

— Laurie Meyers

 

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Additional resources

To learn more about the topics discussed in this article, take advantage of the following select resources offered by the American Counseling Association:

Counseling Today (ct.counseling.org)

Books and DVDs (counseling.org/publications/bookstore)

  • Counseling Strategies for Loss and Grief by Keren M. Humphrey
  • Mediating Conflict in Intimate Relationships, DVD, presented by Gerald Monk and John Winslade

ACA Mental Health Resources (counseling.org/knowledge-center/mental-health-resources)

  • Resources for Professional Counselors

Podcasts (aca.digitellinc.com/aca/store/5#cat14)

  • “When Grief Becomes Complicated” with Antonietta Corvace (ACA252)
  • “Integrated Care: Applying Theory to Practice” with Eric Christian and Russ Curtis (ACA149)

Webinars (aca.digitellinc.com/aca/store/5#cat46)

  • “ABCs of Trauma” with A. Stephen Lenz (CPA24329)
  • “Children and Trauma” with Kimberly N. Frazier (CPA24331)
  • “Counseling Students Who Have Experienced Trauma: Practical Recommendations at the Elementary, Secondary and College Levels” with Richard Joseph Behun, Julie A. Cerrito and Eric W. Owens (CPA24339)

 

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Laurie Meyers is the senior writer for Counseling Today. Contact her at lmeyers@counseling.org.

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.

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

Counseling Today reviews unsolicited articles written by American Counseling Association members. To access writing guidelines and tips for having an article accepted for publication, go to ct.counseling.org/feedback.

 

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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 cyfisherphd@gmail.com

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.

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 American 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