Tag Archives: cancer

When counselors grieve: Witnessing a loved one approach death gracefully

By Suzanne A. Whitehead March 21, 2022

My wonderful, dear, precious mother is dying. She has terminal metastatic cancer, adenocarcinoma, that began in her colon and quickly metastasized to her liver. She first started experiencing periodic stomach pains in early 2019, but numerous tests and exams divulged no significant results. We were concerned for her but felt relieved when all tests came back negative. It is with her gracious permission and indominable spirit that I relay our story.

When the global COVID-19 pandemic shut the world down in March 2020, we sheltered in place as most Americans did and prepared to ride out what we hoped would be a short storm. I was teaching remotely from home, and as the coordinator of a counselor education program, I was blessed to be able to make the final decisions on that front. As May 2020 rolled around, my mother complained off and on of more stomach discomfort, but it would quickly fade and was nonspecific. On May 18, however, she woke with great discomfort in her belly. A trip to the doctor led to more tests, and we were finally able to schedule a barium swallow exam for early morning on May 20.

My mother endured the pretest liquids with great difficulty but was eventually able to have the test completed. She came home with us, feeling exhausted and very nauseated. The vomiting soon ensued, and she became increasingly uncomfortable. Our alarm grew after making frantic calls to the doctor throughout the day and taking a resultant trip to the emergency room in a neighboring city.

After my mother had a thorough examination, a surgeon was consulted, and a blockage was located in my mother’s large intestine. Papers were hurriedly signed, and we kissed my mother goodbye. Due to COVID-19 restrictions, no one could stay with her. My mother was 94 at the time and scared to death to face the operating room alone.

The surgeon called us close to midnight. My mother had made it through the surgery OK and (miracles as well) did not need to have a stoma or colostomy bag put in. The surgeon believed he had been able to dissect the entire tumor but would have to test the margins of course. This was a slow-growing tumor, he told us, and my mother had probably had it for some time. Due to her advanced age, even if it ever spread in her colon, she might actually pass away from something else entirely. So, not to worry, he said.

Recovery in the hospital was a nightmare. The first night went well, but my mother had sadly aspirated the next morning and wound up with pneumonia. The medical staff was trying its best to help her, but that becomes trickier with advanced age. My mother is a bit hard of hearing, has short-term dementia-related memory loss and can be a very feisty Italian lady. She stands all of 4 feet, 4 inches and has severe osteoporosis that has resulted in very pronounced scoliosis of her spine. Therefore, she cannot, lie flat and must have the head of her bed propped “just so” to even sleep. I learned later that the medical staff had called the crash cart twice for her, almost losing her in the process.

I tried frantically to get answers as my mother seemed to linger but not improve. Several days went by, and numerous “hospital specialists” were assigned to her case, but none realized all the nuances of her interwoven symptoms. My first career in life, before I became a substance use disorder counselor, school counselor and university professor, was as a respiratory therapist. The names of some of the equipment have changed over the years, but not a person’s anatomy and metabolic processes. I was therefore able to keep up with the physicians regarding the dire circumstances of my mother’s respiratory acidosis, lowered PO2 oxygen levels in her blood, and the infiltrates and atelectasis in her lungs.

The head medical staff finally acquiesced on my mother’s eighth day there, and they let me visit her. My counselor training helped profoundly in working with everyone in her care. My mother was quite in distress when I first arrived, but as is often the case with family visits, began to thrive. The nursing staff said I had to stay put in her room, and they brought me meals and provisions. By the second day, I had her up walking. I swapped places with my grown daughter, and by the fourth day, they said we could take my mother home. It was indeed a miracle that we were able to wheel her out of the hospital.

Twists and turns

We took the rest of the summer of 2020 to help my mother recover. It was slow going, but she gained strength each day. It was decided that the fall of 2020 would be taught remotely at my university, so I looked for a wonderful place for her to convalesce. I was incredibly fortunate to find a condo for rent right on the ocean, and we spent the month of September sitting by the ocean, taking long walks on the beach, watching the boats sail by, and loving every minute of life.

My mother was feeling stronger by October and was even cooking again, which is her favorite pastime. A monthly checkup raised some concerns, and more tests were ordered. To our heartbreak and dismay, the cancer had massively invaded my mother’s liver and was voracious. Her oncologist suggested chemotherapy medication that she could take at home but, sadly, it would perhaps prolong her life by only a few weeks or months. There was no cure or other treatment.

My irascible and feisty mother said she wasn’t ready to give up, so we began the ritual of chemotherapy pills at home just after Thanksgiving. She seemed to tolerate that well until just a few days after Christmas. The pills had reduced the size of her tumors, but she became quite toxic to the point of having constant diarrhea, vomiting and not eating.

January 2021 rolled around, and my mother was still quite ill from the chemotherapy. With incredible strength of will and sheer grit, she fought on and finally began to feel a little better by the end of the month. Her oncologist introduced the chemotherapy again, but at a lower dosage, and she tolerated that well.

By June, her tumor marker blood tests showed that they had been reduced by over half. That was indeed remarkable in and of itself. Her oncologist had thought in October 2020 that my mother might possibly live up to another year; by June 2021, she seemed to be thriving. Incredibly, we were able to bring her to Hawaii that month, where I was presenting at an international conference that had been postponed from the year before. We were so very blessed to have that conference occur during the brief “sweet spot” when COVID-19 seemed to diminish a bit and the delta variant had yet to arrive. The trip was glorious. Several family members joined us, and we were able to visit many places we had gone to when we lived on Oahu a few years previously.

Early July brought another jolt of reality when another severe colon obstruction landed my mother in the hospital. After six days of intense, painful therapy and tests, my mother was slated for additional surgery. Her physician was extremely cautious and tentative about her prognosis. Literally, at the eleventh hour, just before her scheduled surgery, the treatments they had given her began to work. Another miracle had occurred! Three days later, we were again able to wheel my mother out of that hospital, without more surgery. It was a day to celebrate.

Sadly though, by September, her blood tests revealed that her tumors were growing again with a vengeance. The painful decision to stop the chemotherapy was agreed upon, because by then it was doing her more harm than good. Fall 2021 also had its extreme joys, however, as we were able to celebrate our daughter’s very tiny, but beautiful, wedding on Nov. 6. My mother was able to stand up for her as the matron of honor; it was a poignant and blessed day for all.

The long goodbye

The holidays have now come and gone, and again I marvel at my dear mother’s strength and perseverance. Despite our fastidious precautions, with all of us getting the vaccines and booster shots, COVID-19 entered our home in early January, and we all became infected with the omicron variant. It is a true testament to my mother’s will that even COVID-19 cannot stop her. Her symptoms resembled that of a bad cold — something else she could have done without. Thankfully, however, she made it through that horrible hurdle too.

Painful realities remain though, and we all agreed in late January that the time had truly come to begin the hospice process. I have never had hospice services for a loved one before, and there was a lot to learn. Some of the realities were quite painful, such as that my mother cannot see her established physicians any longer. We’ve also been asked several times to consider a “Do Not Resuscitate” order; we’re not quite there yet. I am reminded once again that death and dying is a process, not an event.

A plethora of nurses, social workers, delivery workers (bringing oxygen tanks, shower supplies and comfort meds) and a minister for spiritual support have come to visit. The very slow reality of the long goodbye is now at hand. As a counselor and university professor, I “know” about self-care, the many aspects of grief and loss, the need for continued support, and the existential angst one feels when realizing that nothing else can be done. It is an empty, hollow feeling that begets profound sadness.

I am extraordinarily blessed with wonderful family support. My husband and I have three grown children (two of whom are nearby and one six hours south), a wonderful son-in-law and daughter-in-law, and two amazing grandchildren. My university colleagues have been immensely supportive, as has my faculty and staff. I have the dearest friends one could ask for but, sadly, most are a great distance away. The miracle of iPhones and the internet have helped with that.

The pandemic has brought innumerable obstacles and immense sadness, pain, distress and heartache to us all, in one form or another. For us, it has meant that the last remaining months and days of my mother’s life must be limited to home. Yet serendipitously, I have been given even more precious moments at home with her. The days of shopping together, visiting nearby museums, going on short camping trips or talking for long hours at a lovely luncheon spot have all ceased. Instead, the tiny joys of taking an afternoon walk, watching a great movie together or enjoying the sunshine and warmth on our faces have taken on greater significance.

I marvel at my mother’s internal strength, her spirit and her deep love of life. I sit in despair sometimes as I watch her try to catch her breath, see her moving much more slowly, and recognize the distant look in her eyes; I wonder where she has drifted off to at times.

We talk often. She shares her innermost fears, regrets (blessedly, very few), and final wishes with me. These are sometimes painful talks, but they are necessary, cathartic, and I let her choose her timing.

I find myself walking with great trepidation down the long hallway to my mother’s bedroom in the morning when I haven’t heard her stir yet. Will I at some point just find her gone, peacefully? Will she have to suffer greatly (I fervently pray that she doesn’t), as my dear father — her husband — did from cancer so many years ago? Will I be able to let her know how very, very much she has meant to me, how much she is so dearly loved by us all? Can I properly express that without her, I never would have become the counselor, teacher, mentor and social justice advocate that I am? My family and I have been blessed by her comfort, wisdom and beautiful spirit for close to 96 years now. Letting go by inches is so incredibly difficult …

A shared reality

So many of my dear counselor colleagues, friends and students have lost loved ones due to COVID-19 over the past two years. We have shared this reality as human beings, and together we mourn each loss. I have been honest about my mother’s condition with all of them so that they realize that even counselor educators deal with grief and loss. I teach all my students about the vital importance of knowing your limitations, knowing when to reach out for support, knowing when to step back and take a break, knowing when you are not at the “top of your game,” and knowing that it is OK for us to be fully human.

Perhaps putting my thoughts into words here is just my way of doing so. I hope that for those who have endured or are enduring similar circumstances, my words can offer some support, connection and solace. It is our humanity and spirit as counselors that binds us.

So too, as counselors, each of us has helped dozens, if not hundreds, of people cope and work through their grief and loss. It is part of our very nature. It is what we do, and we are honored to do so. We have learned our craft well and know what to say, how to say it and how to sit with another human being during their profound sense of pain and despair. We must make that kindness and compassion that we so freely give to others available for ourselves as well.

My mother is dying with grace; I am learning from her strength to honor her journey thusly. I will grieve horrifically when she passes. She has asked me not to grieve so, but that would be impossible. What a gift she has been to my entire family, that she even worries about how we will feel once she is gone! The price we pay for loving someone so fully, so unconditionally and so openly is to grieve their passing with our whole heart, soul and being. To have been eternally blessed with her love, I would not have it any other way.

Leon Seibert/Unsplash.com

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Suzanne Whitehead is an associate professor and the program coordinator of the counselor education program at California State University, Stanislaus. She is a licensed mental health counselor, a retired school counselor and a licensed addiction counselor. Contact her at swhitehead1@csustan.edu.

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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.

Life after cancer

By Laurie Meyers April 29, 2020

To the uninitiated, a favorable cancer prognosis may appear to follow a challenging yet relatively linear path ending on an upward trajectory: diagnosis, treatment, elimination, champagne.

After all, what’s not to celebrate? Treatment is over! You’re cancer-free! Everything is great! You may now return to your regularly scheduled programming.

You are ecstatic, right?

For most people completing cancer treatment, the answer is: It’s complicated. And bewildering, because almost no one talks about the messy reality of “after.”

These are some of the unspoken truths about life after cancer:

  • The end of treatment is a cause for celebration and a time of uncertainty and fear.
  • The end of daily, weekly or monthly medical visits can leave patients feeling as though their safety net has been removed.
  • The emotional support that patients receive from those around them may shrink — sometimes dramatically — once their cancer is “gone.”
  • Surgery, chemotherapy and radiation may be over, but treatment is not; patients still require regular scans and, in some cases, pharmaceutical maintenance regimens.
  • Pain, neuropathy, fatigue, mental fogginess, physical restrictions and other side effects often last long after treatment is completed.
  • After months or years of focusing on cancer, survivors can struggle with a sudden loss of structure and purpose.
  • Physically or metaphorically, cancer patients have lost pieces of themselves.
  • Scars, hair loss, skin changes, bloating, weight gain or loss, medical devices such as intravenous ports or ostomy bags, and other changes in appearance frequently have a negative effect on body image.
  • The physical and psychological effects of treatment can cause lasting intimacy issues, both physically and emotionally.
  • A professional clinical counselor can be the one person who never tires of hearing about the individual’s cancer experience and helps the individual make meaning of that experience and find their new “normal.”

Seeking solid ground

Cancer patients are often surprised by their reaction to the last day of treatment, says licensed professional clinical counselor Cheryl Fisher, a private practitioner in Annapolis, Maryland, whose specialties include counseling clients with cancer. Most cancer clinics have some kind of ceremony — a bell to ring or a certificate to present — so there is a feeling of celebration, she notes.

But then? Fisher says these patients often have a sudden realization: “Oh, crap. Now I’m on my own.”

The medical support group that has sustained those in treatment week after week, month after month, suddenly is no longer there, notes Fisher, a member of the American Counseling Association. Yes, the physicians and nurses are still available, but those reassuring regularly scheduled visits that provided a consistent sense of forward momentum are over, leaving patients unsure of what comes next and whether they’ll truly be OK.

During treatment, patients are essentially swept along, focused on navigating the tasks placed in front of them, Fisher explains. “What do I do next? What do I do next? OK, tell me what do I do next?” she says. “You’re just going through the motions almost on autopilot.”

And then, suddenly, the merry-go-round stops, and survivors are left standing still, yet psychologically awhirl with everything they’ve lived through. “Your body, your mind, your neurology is still trying to catch up with all that has happened,” Fisher says. “You’re still processing it.”

ACA member Mary Kathryn Rodrigue, a licensed professional counselor who is certified in psychosocial oncology with a focus on young adults, agrees. Many of the clients who come to her practice after completing cancer treatment are just beginning to process their grief, she explains, because they felt compelled to put everything else — financial worries, job concerns, questions about fertility, relationship concerns — on the back burner during treatment.

Rodrigue, founder and co-owner of The Wellness Studio, located in Baton Rouge and Covington, Louisiana, uses the Functional Assessment of Cancer Therapy-General, a scale that measures physical, social/family, emotional and functional well-being, to help determine her clients’ needs. In addition, she administers standard depression and anxiety assessments.

Many of her clients present with anxiety surrounding “what if” scenarios. Rodrigue describes exploring these fears as “peeling back layers of an onion.” Follow-up tests are a frequent source of anxiety. “I have a scan coming up. … What if the doctor doesn’t call right away? How will I cope?”

Rodrigue frequently uses journaling with her clients and says that “worry journals” can be very effective. “It’s allowing you to tangibly take that worry that feels like it’s on a ticker tape and put it somewhere else,” she says. Clients might also use their journals to play out the worst-case scenario, imagining that a scan shows evidence of cancer, taking stock of their support systems, and attempting to formulate a plan. Examining that fear and planning possible responses keeps clients from “back burnering” their fears and letting them build momentum, Rodrigue says.

She also teaches clients mindfulness and grounding techniques such as environmental awareness — noticing the temperature of a room, focusing on the feel of clothing against the skin, and identifying the textures and tastes of the food they are eating, for example.

Fisher, who is also the director of the online master’s program in clinical counseling for the California School of Professional Psychology at Alliant International University, says scan anxiety is a constant concern for many of her clients, some of whom face scans every three months. When the first scan comes back clear, Fisher says, clients begin “just testing the toe on the water, trying to gain some semblance of this new normal. What does it look like?” But then, as the next scan time approaches, their anxiety amps up again. Fisher helps clients develop tools to manage their fears without derailing the process of reengaging in life.

She recalls one client whose scans indicated a small recurrence of cancer on the lung. “There’s this little, teeny, tiny spot. It’s not growing fast. They’re actually not going to do surgery. They’re just going to watch it,” Fisher explains. And, so, the client had to make peace with the unknown.

Fisher asked the client what she was feeling.

“I’m afraid,” the client said.

“OK, great,” Fisher responded. “Acknowledge that you’re afraid. Call upon it, sit down, have a conversation with it [through journaling or self-talk]. What’s the fear about? What’s the greatest aspect of the fear? What is it telling you, teaching you? How would it ask you to live your life differently now, with the unknown? What would that look like?”

The client was anticipating the birth of her second grandchild and was afraid that she wouldn’t be around to experience it. So, Fisher asked the woman to think about how her plans might be altered by knowing there was no guarantee she would be in the child’s life. The client decided to make some preparations for the birth of the child. She had previously been putting off her plans, paralyzed by fear of the unknown. As it turned out, the woman’s follow-up scan showed no sign of any growths.

“What we do with fear,” Fisher says, “is tell fear, ‘OK, I know you’re going to co-journey with me around this. I know you’re going to be there, but you cannot lead it. You cannot be the leader of my life. What I’m going to do is … to pull you out periodically. We’re going to have a conversation. I’m going to allow myself to experience you, cry, be angry, journal, do some work around it. Then I’m going to tuck you back in and tell you [that] you have to walk beside me, not in front of me.’”

Fisher emphasizes that this intentional practice allows clients who have experienced cancer to decide what is essential — the nonnegotiable things they want to experience no matter what.

All that you can’t leave behind

As clients learn to negotiate their fears and reengage with life, they will inevitably need to reevaluate. Everything. But especially the people in their lives.

“Your whole world turned upside down,” Fisher asserts. Clients’ perspectives are altered — sometimes radically — by what they’ve been through. “Now you’re really evaluating people, places, things, and how they’re serving you in your life,” she explains. When assessing relationships, clients are seeking reassurance that the people around them are able to allow them to move forward while still understanding — and respecting — the radical life changes cancer has brought on.

Rodrigue was struck by a presentation she attended in 2019 on issues affecting young women with breast cancer that described three different categories of relationships and the need — particularly in times of significant change — to do an inventory of the people in one’s life and where they fit. The first category comprises the closest relationships — those built on unconditional love in which people willingly make sacrifices for each other. The speaker emphasized that it is essential not to have too many of these relationships because it is easy to spread oneself too thin. The second category consists of reciprocal relationships — people who do things with you and for you, Rodrigue says. And the third category of relationships includes people in your life by default — family members, friends you’ve known for a long time, individuals with whom you were brought together by a crisis or a project, etc.

Major life changes and shake-ups tend to call attention to those relationship lines, Rodrigue says, explaining that it is not uncommon for people who have recently gone through cancer treatment to feel anxious about their relationships. She encourages clients to ask themselves several questions: What is driving their anxiety? How are relationships not meeting their expectations? Is there a lack of reciprocity? A tendency to be unavailable or unsupportive? Perhaps a previously unnoticed pattern of negative and undermining comments and behavior? Is the pattern a new development caused by a change in friendship dynamics, or was the relationship never based on equal footing?

In many ways, cancer survivors have an even greater need for support once they’ve finished treatment. Not knowing whom to count on or being betrayed by someone who seemed like a trusted ally can have a significantly detrimental effect on clients’ emotional and physical health. Taking a relationship inventory that allows clients to recognize the need to “refile” or even release a relationship can reduce anxiety and help eliminate unnecessary conflict.

Both Rodrigue and Fisher say another significant challenge cancer survivors encounter in their relationships is everyone else’s need for them — the patient — to be “OK.” But they’re not. At least not all of the time.

This inability on the part of others to consider the person as anything less than “good as new” sometimes comes from a place of selfishness or ignorance, but it can also come from fear, Fisher says. Those close to the client have endured months or even years fearing the loss of their loved one, so they desperately want to believe the person will be fine, she explains.

And cancer survivors often want to ease that burden, to say they’re fine even when they’re not, Fisher continues. “Oftentimes, we still are in that protective role, where we’re like, ‘Yeah, yeah. I’m good. I’m fine,’ rather than saying, ‘You know what? I could still use a weekend away,’ or ‘I don’t know if I can take on my full life right now in one swoop.’ … So, now it’s like, OK, on your mark, get set, go. It’s too much. It’s overwhelming.”

This is where counselors need to step in and educate their clients. Fisher tells her clients that their A-game no longer looks the same; that there is no “back to normal” — inevitably, it is a new normal; and that finding secure footing on the path forward takes time. People will want to assume that the person who went through cancer treatment is fine, so it is up to that person to set boundaries, to let others know when they need time off or to say, “I can’t deal with your bull,” Fisher asserts.

Sometimes, helping clients manage others’ expectations requires bringing in the third party. Fisher had a client who was a cancer survivor and a widow. The woman’s daughter would come to town to visit and had a hard time hearing that her mother had bad days. During one of these visits, the client asked Fisher if she could bring her daughter to a counseling session so that they could work on expectations together.

“That was where, of course, the daughter was able to break down and say, ‘I’m scared. I can’t stand the idea of seeing Mom vulnerable. I have to see her as super mom,’” Fisher recounts. “Mom is crying, saying, ‘I would love to be that super mom, but that’s not my M.O. anymore. I learned that trying to be super mom actually was killing me. I need you to know honestly that some days are great, some days are not great. I need to have the ability to do what I need to do on those not-so-great days without worrying that it’s upsetting you.’”

The elephant in the room

Life after cancer treatment means reengaging not just in platonic relationships but in intimate ones as well — if and when the survivor is ready, Fisher says. Again, it’s complicated.

Survivors are scarred and often not comfortable in their bodies, Rodrigue explains. It’s hard to reclaim your body when part of it is missing, especially in cases with mastectomies, she continues. Survivors need a safe mental health setting in which they can express their rawness and grief over the loss.

Fisher notes that breast cancer survivors with hormone-positive cancer grapple with an additional complication — hormone-blocking pharmaceuticals such as tamoxifen or aromatase inhibitors. Tamoxifen usually forces women into early menopause and the physical aspects that come with it, such as hot flashes, dryness and discomfort.

Many survivors aren’t even ready to think about a sexual relationship at that point, but if they have a partner, the topic comes up sooner rather than later, Fisher says. For women who don’t have partners but are interested in a sexual relationship, the process of finding one may feel more complicated. Fisher quotes one client as an example: “The next time I’m going to be sexually intimate with somebody, I’m going to have to feel safe enough to tell my story.”

“It really requires trust to be able to expose the scars, talk about the scars, experience a relationship with somebody in the scars,” Fisher says.

Too often, survivors struggle alone with reestablishing their sexuality. Even clinicians are often hesitant to address sexuality after cancer, Fisher says. She asserts that counselors should be asking these clients about their body image and their identities as sensual and sexual persons.

“Talk to me about what you’re experiencing now. What are your fears? What would you like it to look like?” Questions like these will open the door and allow clients to talk about their sexuality, Fisher says.

Counselors should also make sure they are up to date, comfortable with and educated about the aftermath of cancer treatment and reengaging in sensual, sexual, and body image components, Fisher says. “Sexologists, sex therapists are excellent resources,” she suggests. “The interesting thing is, finding them is kind of challenging at times. [Find] out who’s in the area so you can refer clients. Then, hey, you know what? Normalizing [with clients]. This is really normal stuff.”

She also recommends that counselors consult with physical therapists who are knowledgeable about pelvic rehabilitation. “They educate you from A to Z in terms of what could possibly be interfering with both physical and sexual functioning.”

Again, it is about getting clients back into contact with their “new bodies” and embracing the changes — not just in terms of sexuality but in redefining their own beauty, Fisher says. She finds yoga and breathwork to be particularly effective ways for clients to reconnect with bodies that they may feel betrayed them.

Rodrigue has had many clients tell her that they no longer feel beautiful or even functional. It was such a common refrain that when it came time for her to open her practice, she made a specific request of the interior designer — a friend and former Project Runway winner. “Everything is made from repurposed materials, stuff people threw away,” she says. Rodrigue encourages her clients to see themselves in the materials — not broken but rather remade with a new purpose.

Fisher has a similar view of the healing process. “When is it over? I don’t think it’s ever over,” she says. “I think you just get to the other side of it, and it’s repositioned and informed your life. … Just because the treatment is over doesn’t mean the processing and healing are over.”

 

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Laurie Meyers is a senior writer for Counseling Today. She was diagnosed with breast cancer in February 2019 and finished active treatment this past January. Her discovery that there is no survival guide for life after cancer inspired this article. Contact her at lmeyers@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.

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 and webinars

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

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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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