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.’”
To contact the individuals interviewed for this article, email:
- Judy Green at firstname.lastname@example.org
- Gary Patton at email@example.com
- Mary Jones at firstname.lastname@example.org
- Sejal Barden at email@example.com
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 firstname.lastname@example.org.
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